MCL and Me

T+915 No news is good news

2011-03-19T08:31:00.004Z

On Wednesday of this week I went to the transplant clinic for my usual check up. My last one was two months ago. I saw the consultant who dealt with me through most of my transplant and whom I hadn't seen for a while so it was nice to catch up with him.

Everything is going fine and my blood results were all in the normal levels. I've been having a few grumbling patches of bad skin on my face, in the creases of my elbows and the backs of my knees. I've tried treating them with the steroid creams I have and it does get rid of them for a while but then they come back. However they don't get really bad and they are not very itchy at all so more recently I've been just leaving them to their own devices in the hope my donor's cells get bored and leave my skin alone.

That said the consultant said low level GVHD was no bad thing as it means it's quite possible that I also have GVL (Graft Versus Lymphoma) meaning the donor cells are also going around killing off any lymphoma cells that might still be lurking in my body. The doctor showed me the results of my latest chimerism blood test. This measures the percentage of donor cells in my blood compared to my own original ones. The most important one is the T-Cell level ( the white cells that fight infections at a cellular level such as viruses and lymphoma cells). My T-Cell chimerism level is over 95% which is a good sign.

The doctor explained I'm now in a basic maintenance routine of blood tests every so often to make sure nothing untoward is happening. He put my next appointment down for three months' time which is the longest I have been between visits to the clinic. Of course if I have any problems then I can call the clinic to get a drop in appointment for the Wednesday clinic or just ring the bone marrow transplant unit at the hospital if it is more urgent and be seen straight away.

So this is pretty much it then. I'm down to my lowest level of tablets and my clinic appointments should only start to get further and further apart. Of course you never know what is round the corner ( which is prolly just as well ) but all being well, or rather me being well, I won't have much to report in this blog and it will be a case of no news being good news.

The primary purpose of this blog was to detail my treatment for MCL and give friends and family an easy way to keep in touch with how I was doing. I have also used it to talk about other things I've done like attend concerts and conferences or my creative writing endeavours as well as pontificating on various topics that have got my goa,t but of late there haven't been so many of those.

One of the reasons for not posting very often to the blog is that after six years with the logistics firm I worked for I have recently taken up a new job at an express parcels carrier in Atherstone. This has been quite an upheaval albeit a mostly pleasant one and I've been incredibly busy at work taking on a whole load of new information and getting used to people and procedures at the new company. When I come home at the end of the day I don't feel like spending an hour or so typing up a blog post when there isn't that much news to report and there are no burning issues I feel I should write about. I've also for some time now being using twitter to post micro-blogs so that lets me let people know what I've been up to on a day to day basis and vent my (under-active) spleen if need be. ( You can see my twitter feed at the top of this blog and also via http://twitter.com/simonstanford . Or follow @simonstanford if you use twitter yourself).

So, whilst I won't be officially closing this blog as there will always be occasional medical updates or anniversaries to post, I won't be posting to it very often. Things may change in the future and I may take to blogging about other topics again if the muse and motivations strike me though I might also choose to start a new blog for that.

In the meantime I would like to thank everyone who has read this blog and especially those who have commented on or responded to what I have written. I hope you have found it interesting, educational and entertaining in various measures.

T + 877 Gee-Pee Bee-Pee

2011-02-09T16:41:00.004Z

When I went to the transplant clinic a few weeks ago I asked the consultant about coming off the amlodipine blood pressure tablets as I had only been put on them because the ciclosporin caused my BP to rise.

I've been off ciclosporin since before Christmas so the consultant said to co-ordinate with my GP to come off the BP tablets. This I have duly done and after a couple of BP checks at the surgery, plus my own daily checks at home for as while, it looks like although my baseline BP has risen a little since coming off amlodipine, I shouldn't need to go back on the tablets.

This means I am now down to my lowest number of different medications and probably the ones I will be on for life:-

Penicillin to help with bacterial infections as bone marrow transplant patients often have under-active spleens. (1 x 250mg twice a day )
Thyroxine to help with my under-active thyroid gland. (1 x 150mcg once a day )
Hydrocortisone to help with my under-active adrenal glands. (20mg Morning, 10mg evening ).

There is a chance I might be able to come off the hydrocortisone tablets but my endocrinologist doesn't seem in a rush to try.

I'm pleased to say that I tolerate these medicines very well, as do most people, as they have few side effects.

T + 854 Happy New Year

2011-01-18T14:16:00.002Z

It seems an age ago but New Year's Day was just under 3 weeks past so a Happy New Year to all my readers.

Before moving on to other things just a quick medical update. I went to the transplant clinic last Wednesday and it is very much steady as she goes. I've tolerated coming off the ciclosporin fine and apart from a couple of patches of dry skin the GVHD seems to be lying low.

The ciclosporin caused my blood pressure to rise when I was first put on it back in September 2008 so I was put on a blood pressure tablet called amlodipine. In theory now I am off the ciclosporin I can come off the amlodipine as the chances are my blood pressure should go back to normal. The consultant I saw suggested I check my blood pressure at home a few times and take these readings in to my GP and get him/her to manage my withdrawal from amlodipine. So I've started drawing up my little spreadsheet of readings and will be off to see my GP next week.

I mentioned a while back that 2011 will be a year of change and it has already got off to a flying start because last Friday I handed in my notice at work as I have got another job to go to. I've been where I am for the last six years but my job is being outsourced to India and the new role my current company suggested I do was not very appealing. It has also been 6 months since the new role was mooted and there has been no sign of a job title or job description.

I've made some good friends where I am now and enjoyed working with lots of people there so I will miss that, but the new role, as well as being something I'll enjoy doing, has better terms and conditions and is about half the travel distance so that will save me time and petrol money.

Looking back over 2010 I started the year thinking I was close to coming off ciclosporin but it turned out to be nearly another 12 months away. I also had a little hiccough with shingles in the middle of the year which whilst not unexpected was still another small setback to deal with. All in all though my health has been pretty good over the last year and that perennial theme of achieving normality looks ever closer to fulfilment . ( Though maybe my trajectory towards it is asymptotic :o).

Highlights of the year just gone would be self-publishing my novel, Reunion to raise over £300 for Cure Leukaemia, and getting the vegetable garden established.

On the subject of writing I have a new short-story up on abctales.com that was written as an assignment for my creative writing course.

http://www.abctales.com/story/raetsel/inspirational-mr-green

It's the poetry section of the creative writing course next. Heaven help us all. :o)

T + 826 Simon of a Thousand Days

2010-12-21T17:38:00.003Z

Although today is 826 days since my transplant it is also another sort of milestone, 1000 days since I started having treatment for my Lymphoma. Before my transplant there were four rounds of chemotherapy and these began 1000 days ago today.

Not much more to say about that really other than it is a nice round number. Over the next week or two I'll be looking over the blog from the last year and doing a bit of a review and a look forward into 2011. Which is looking like it will be a year of change one way and another.

I've fought off another bad cough and cold over the last week and only had to have one day off work to help cope with it. It was pretty bad on one night and I came close to calling the hospital to see if I needed to go in but I managed to survive on my own.

I'm left with an annoying slightly chesty cough but that is going albeit very slowly.

T + 807 I knew you were going to say that

2010-12-02T11:30:00.007Z

There is a certain set of associations that go together to form a stereotype. Unix Sys Admin = Geek, Graphic Novels, Science Fiction, Star Trek, Star Wars, Maths, Science, Rationalism, Scepticism, Atheism, Humanism.

Ok maybe I added the last four on and that's just me. I do also conform to many of the other aspects of that stereotype though. However I also feel the need to say "I am not a trekkie" of course all trekkies say that but it is true in my case. No really.

I've spoken before about my atheism and this is part of a larger scepticism about anything new age, psychics, alternative medicine etc. I have even been known to bend people's ears about this if they will stand still long enough to listen. Of course some people, well actually one in particular, enjoys baiting me for his entertainment with various outrageous statements like Dawkins is your pope etc. He should know better really given he is currently researching for his PhD in Neuropsychology however it was whilst at his studies that he came across an unrelated article by Professor Daryl Bem that purports to show evidence of psychic abilities, namely presentiment or precognition and my friend couldn't wait to share it with me to say "ha, what about your scepticism now?"

The article in question, all 61 pages of it, can be read on the author's website and is due for publication in a serious and respected journal from the American Psychological Assocation's Journal of Personality and Social Psychology, remember that title by the way. I'll come back to it later.

What does the paper say well you can read summaries of it via this web article which also makes some good points about it.

I've read about half of the paper and skimmed the rest ( I'm a geek but I have a life, and a job). It presents data from 9 different studies with over a 1000 participants in total and reports a statistically significant effect in several of them that cannot be explained by current scientific theories. They all work on the idea of a retroactive effect. I.e. the supposed cause actually takes place in the future. Here's an example of the description of one experiment from the paper itself.

This is an experiment that tests for ESP. It takes about 20 minutes and is run completely by computer. First you will answer a couple of brief questions. Then, on each trial of the experiment, pictures of two curtains will appear on the screen side by side. One of them has a picture behind it; the other has a blank wall behind it. Your task is to click on the curtain that you feel has the picture behind it. The curtain will then open, permitting you to see if you selected the correct curtain. There will be 36 trials in all. Several of the pictures contain explicit erotic images (e.g., couples engaged in nonviolent but explicit consensual sexual acts). If you object to seeing such images, you should not participate in this experiment.

At this point I would like to say that my psychologist friend who sent me the paper could learn a thing or two about designing interesting experiments. When I was a participant in one of his studies recently what did I spend two hours looking at and responding to? Coloured circles in an array. But I digress....

The clever bit in Bem's experiment is that the curtain behind which the picture will be placed is not actually chosen until after the subject has made a "guess". Only after that does the computer randomly select a curtain and puts the picture behind it (we'll come back to the word random as well).

From pure chance you'd expect to get 50% of the guesses right, but Bem says participants get closer to 53% for those cases where there is a naughty picture behind the curtain. Somehow participants can predict where porn will be in the future. ( Explains a lot about the Internet maybe). That small difference is statistically significant according to various tests you can do for that sort of thing that I don't claim to understand. (My knowledge of stats and probability is something I'd really like to improve.) Other studies in the paper relate to different effects and get similar small but seemingly unexplainable results.

So there you have it. Rigorous scientific proof of psychic phenomena.

Err well no not quite. As Ben Goldacre would say "I think you'll find it's a bit more complicated than that". ( His book Bad Science is an excellent read for anyone who wants to know what to make of various supposed scientific pronouncements in the media). Just as one swallow doesn't make a summer so one paper however well written doesn't make a proof. (The paper does seem very thorough to my amateur eye though).

Repeatability is very important in science and there are already several attempts under way to repeat the experiments to see if they get the same result. Importantly there is also a place where scientists can register to say they are replicating the experiment. This means results can't be brushed aside or hidden, be they positive or negative. People will know the studies have been conducted. ( This counters the so called bottom draw effect or publication bias. Positive results are more likely to be published that negative ones.) Of course when it comes to headlines on various newspapers and websites the results of these repeatability tests will almost definitely go unreported or get little coverage if they fail to confirm the headline.

Aside from psychic phenomena what could explain the results? Well one thing is the use of the term random. If there is any bias in the way picture's position is chosen this could have an influence on the results. That said there is a significant discussion of this in the paper itself but again it needs an expert to read and understand it. Luckily such experts are looking over it in the psychology community.

Professor Bem , despite some vague words about quantum effects, doesn't himself have a way to explain how the psychic phenomena work and the experiments weren't designed to test any theory of psychic powers that he had. This in itself could be an issue when it comes to analysing data. This paper, which I haven't read fully yet, criticises such an approach as something of a fishing expedition. It also makes the point that for effects that would completely confound current theory and practise there needs to be a somewhat higher burden of proof or significance for sound statistical reasons.

Chris French who studies the psychology of anomalous experiences spoke about the study on the Guardian Weekly Science podcast. He made the point that one of the reasons this study is getting so much attention is because Daryl Bem is a respected name in social psychology and the journal is for a mainstream subject. Most psychologists don't study parapsychology and so don't read parapsychology journals otherwise they would see studies like these pop up now and again but they turn out to be unrepeatable. At the risk of being accused of playing the man not the ball a related point I would make is that Daryl Bem is known for his work in social psychology and the journal he's published in is one of social psychology. That doesn't denigrate his results but it perhaps gives another small reason to look very hard at them.

What all this shows is how science really operates and there has been some excellent work criticising Bem's results. Bem himself has tried to address many criticisms in his paper pre-emptively and he is making the software he used available for other to examine and try his experiments. This isn't like literary criticism where an author would get all huffy about a bad review. Scientists, good ones anyway, expect and welcome criticism of their work. It helps add to the body of scientific knowledge.

Finally, when it all comes out in the wash, if evidence is found of some psychic style effect then I'll change my views on it. Though the really interesting part will be finding out how the effect works, a whole new theory of time and space or multi-dimensional parallel universes, who knows.

That's the scientific method, evidence is examined, hypotheses and theories are formed and tested, new ones emerge for the greater understanding of all and we change our world view. How many god botherers or new age alternative medicine proponents would say the same?

T + 802 Writers' Toolkit Part 6 The Writer's Smoking Jacket

2010-11-27T10:37:00.004Z

For the final plenary session of the day we all filed back into the slightly chilly main auditorium to hear an address from the novelist Graham Joyce entitled The Writer's Smoking Jacket.

The Writer's Smoking Jacket

Graham Joyce began his talk by holding up a paperback book and saying "This is a Tardis. It is bigger on the inside that it is on the outside and it can transport you in time and space." Which is a brilliant metaphor for a book. However, he intoned that in this time of the digital age writers must face up or fossilise . "They have invented a better Tardis".

He then, in a similar vein to how Jim Crace had started the day, explained how he grew up in a mining village near Coventry and after taking himself off to a greek island for twelve months he returned to the UK with a deal for his first novel. Before that he too, like Crace, had a romantic image of a writer as someone who wore a brocade smoking jacket, ate kedgeree for breakfast and smoked cheroots.

The reality he had found was that smoking jackets look ridiculous, cheroots keep going out and kedgeree tastes bloody awful.

As a result of his upbringing he used a lot of industrial metaphors in his writing and so he said he had seen a lot of changes from his twenty years in the "word mines". To understand the effect of these changes on the modern writer Joyce began with a little history lesson. He said the book industry had always been afraid of change. Initially books were hugely expensive hand produced, illuminated manuscripts available only to the rich and powerful. With the Gutenberg printing process this changed and there was an explosion in writing and the dissemination of knowledge.

Then came the rise of the middleman, the publisher. The printer once the be all and end all of books became just the producer of the item itself. The publisher handled the distribution to the market, this in turn gave rise to the marketing department and that led to Katie Price.

However the important thing about writing and books has always been the value of the content not the technology used to produce or distribute it. Amazon say that this Christmas the split between kindle editions and printed books will be 50/50 and that only includes the paid for books not the many free ones that are available, but in ten years time the kindle device will be like the old VHS cassette, the content will have moved on to a new platform.

Whether you write plays, poems or novels, Joyce said, it didn't matter. If you could have success in one medium then you could have success in another. Here he defined success as the capacity to sell work but only for its ability to "buy time for more writing" echoing the phrase used by Helen Cross earlier.

Therefore in this digital age Joyce said it was important for a writer to have a number of micro-streams of income and be active in at least three or four of them all the time. He then went on to list ten such streams.

The Tradition Advance : He mentioned this first in a sense to get it out of the way. Once the main way a writer made a living, advances are falling with close to a 25% drop over the last few years. However Young Adult writing was a burgeoning market, partly he felt because a lot of disenfranchised adults were also reading these books. He said he had been motivated to try YA writing after a senior literary figure had been very dismissive when asked if he would ever write for YA. At this point Joyce did a very good impression of said literary figure who had better remain nameless.

Digital Publishing : Put your own work out there for paid download. Make the publisher redundant. The publishers' reaction to the digital download was still being worked out. The author's cut of the cover price was about 10% for a hardback and 6% for a paperback, but with 50% of the price of a book going to bookseller, who was cut out by the digital download, what had the industry come up with to offer an author for the ebook rights? 25% How did they get that figure? Especially when Amazon, despite their many faults, claimed to be able to offer a digital author a 70% take.
Spoken Word Events : The success of poetry slams was now being followed up by book slams where a paying audience is only too ready to attend an evening of readings and music.

Teaching : Writing workshops, course development and direct class teaching were all valuable sources of income for a professional writer. There was an odd approach by many writers to the idea of teaching. Claims are made that it can't or shouldn't be done as it would just turn out writing clones. This idea seemed preposterous to Joyce who drew a direct parallel with the music industry. No one would dream of saying you can't or shouldn't teach music to people. Not everyone wants to be the next Beatles or Oasis but that didn't mean they couldn't enjoy creating their own music and so it should be with writing.

Lectures & Speaking Engagements : At this point Graham Joyce turned to Jonathan Davidson, chair of the conference and said "I am being paid for this, aren't I?" Receiving an affirmative nod he explained it was important to practise what he preached. If you are able to speak well publically ( as Joyce certainly could ) then the after dinner circuit could also prove a useful source of income. He recommended wearing a brocade smoking jacket to engagements just to keep the image up.

Non-fiction : Many of the skills for writing fiction are very transferable to non-fiction. He himself had ended up writing a memoir about his love of cricket after playing a match for a Writers XI.

Screen Development : Though many projects never got as far as the screen, it was much easier to get development project money. Hollywood is rarely short of ideas for films but they are short of narrative.

Online Drama : Here the writer can even get involved with the directing and producing or leave that to others but this is a coming medium. The online drama KateModern that "aired" on the social networking site Bebo had received over 66 million hits in the year it ran. Once again it's narrative that is at the core of the success.

Games Writing : In the last year the games industry was worth more than films and music added together. The problem was that games were starting to seem more and more similar. What differentiated them now was the story behind the game play. The narrative is what kept players wanting to come back to the game. He had worked on the story for the fourth incarnation of the Doom series of games.

Find your own : He had said he had ten streams, in fact he only named nine but challenged the audience, "you are creative people. Go and find your own tenth stream."

In summing up Joyce said the reason to diversify was not just financial it was also so "they can't break your heart." Even for an established writer rejection still hurt, he had known it to actually bring on physical illness in some people. So why "hand your heart to one person." Use the medicine of optimism that comes from knowing you don't have just one outlet.

These streams gave you the chance to maintain your independence. He saw a future where editors and agents were still vital friends on the writers' path. As for publishers well, why join others on their road? Put your shoulder to the wheel on your own path and let them come and help you if they want to.

His final words were that there would always be a place for story. "As writers we take nothing from the Earth. We take everything from the Sky."

This was an excellent end to a really enjoyable day which was neatly bookended by the opening and closing addresses from Jim Crace and Graham Joyce. The consistent messages of the day were the importance of narrative to society and the need for writers to always be on the look out for ways to tell a story.

Thanks

Having been involved with running a couple of community conferences and events I know how much hard work goes in to setting them up and running them on the day. This was an extremely well run and enjoyable conference that must have taken a lot of work to put on.

There is a well worn image of a swan seeming to glide majestically across a lake whilst under the water two big ugly yellow feet are paddling like mad. So to all the big ugly yellow feet of The Writers' Toolkit 2010, I say "Thank you". ( A back handed compliment if ever there was one).

T + 801 Writers' Toolkit Part 5

2010-11-26T10:04:00.003Z

The last seminar session I attended before the closing address from Graham Joyce was one of the sessions that had been held on the same topic earlier in the day but this time it was with a different panel.

Real Writing Lives – 2

Writers sustain their creative careers in different way. Our Real Writing Lives panel sessions give you an opportunity to hear established writers talk about the reality of their writing lives.

Brenda Read-Brown: writer
Helen Cross: writer
Naylad Ahmed: writer, former Development Producer: BBC Radio
Ceri Gorton (Chair): Relationship Manager, Literature: Arts Council England, West Midlands

In this session the three panelists spoke about the experience of being a full time writer and what that really means in terms of earning a living and how much time is actually spent writing.

Helen said she had been a full time writer for 12 years and to some extent she will do any sort of writing that pays. She had written articles and reviews when asked and also done writing workshops and worked in schools.

She did however temper that "if you pay me I'll write it" approach by saying that as primarily a novelist who therefore needed to spend long periods of concentrated time on a book she sometimes had to turn work down. She expressed her attitude to these pieces of work outside the current main project of her latest novel as being the necessary way to "buy time for writing". She also tried to find paid work that would feed in to her writing. For example having worked in schools it helped her when writing a twelve year old protagonist in one of her works.

Naylad started by outlining her writing career which began with having a poem publish in a book as a child and continued through to the point where as a teen she would compose award acceptance speeches in the bath. At university she took some modules in creative writing and ended up as a BBC Radio Development producer but then took redundancy and became a full time writer.

She spoke about her writing for radio and commissions for new writing from the Birmingham Rep theatre. She felt it was important to be able to write in a number of media from short fiction and novels through to radio, theatre and screen plays. Any medium could be the right one to tell a particular story.

When it came to fitting in writing round other demands on her time, be that work or family commitments she said it seemed that she did some of her best work when she had the most other demands on her time and some stories "just have to come out."

Brenda's initial talk focussed on the theme of "seven plus or minus two" which related to the number of active projects and work engagements she had on at anyone time and also applied to the number of days per week she worked. ( A nine day week must be hard).

As well as being involved in working for various festivals she had also worked as a writer in residence at a number of sites and done lots of projects where it was about helping other people find their words through writing workshops. Much of the work was through being commissioned or approached by organisations for whom she had worked before. Along side all that she did her poetry writing and performance.

On some days she wondered if she should call herself a word smith rather than a writer but then she thought of the likes of T. S. Elliot and Philip Larkin who had "proper jobs" most of their lives and yet no-one would say they were not writers.

Brenda said one of the reasons she had so many projects on the go was because they were all temporary and short term so she needed to make sure there was always something in the pipeline. However she was always looking to fit in writing around these other activities like people do with full time jobs and even during the activities. When doing writing workshops she, herself, always completed any exercises she gave her students. As well as being good for the students to see the teacher still felt it important to practise she also was able to find new and surprising things when she completed the activities again.

Brenda said a professional writer, a bit like any self-employed person, had to develop skills aside from the craft of writing. It was important to get invoices in on time and to handle the publicity for your own work. (On that point when writing this blog and looking for links for the speakers I found it interesting that only Brenda had her own website and it came up in the first page of a Google searc,. For Helen I was only able to find her Bloomsbury bio page and for Naylad it was just the Writers' Toolkit reference. Maybe, as someone who lives on the Internet, I am biased but it seems to me Helen and Naylad are missing opportunities to get their voice more widely heard relatively easily).

It was clear that all three writers felt it was important to be able to work in different media not only as a way to maximise earning potential but to be able to find the best medium for the story you want to tell. Their final advice, and something that is commonly said to new writers, was that you had to love your writing and stay true to doing what you enjoy alongside whatever else it took to allow you to do it.

T + 799 Writers' Toolkit Part Four

2010-11-24T18:04:00.004Z

After a nice buffet lunch and chat with a couple of other delegates, during which I managed to give away 4 of my business cards (246 to go ), I attended the ante-penultimate seminar session of the day.

Writing and Science

Many scientists have been excellent writers, both about their subject and in other genres. Arguably science needs good writers and writing is a way into science. Discuss…

Prof Chris McCabe: Professor of Molecular Endocrinology:University of Birmingham
Prof David Morley: poet, ecologist, Professor of Creative Writing: University of Warwick
Philip Monks (Chair): writer, Board Member: Writing West Midlands

David Morley began by putting the whole two cultures debate in a nut shell. Whilst at school he had a passion for poetry and the hummaties but was also good at science and his teacher said he would have to make a choice. So it was that after a degree in Biology he became a cold water ecologist obtaining his PhD whilst working at a research station on Lake Windemere.

After eight years working as a professional scientist, with the massive cuts to funding in the 80s, he was made redundant. He also found it hard to as he called it "get back on the fast moving train of science." He was working at the edge of knowledge in a subject so even a few months out of the loop put him at a disadvantage.

During this time he turned back to look again at poetry and writing ( not that they had ever been totally out of his life ) and won a Eric Gregory Award for some of his work.

He know runs a very successful set of creative writing courses for science and engineering students at Warwick University and it was to this mixture of science and creative writing that he spoke.

He quoted a couple of examples of where at its best science was a process of imagination (such as the work of Crick and Watson for the structure of DNA or Niels Bohr and the structure of the atom). Science had much in common with the practice of creative writing and poetry in particular. Both are concerned with the precision of observation and describing things in exactly the right and best way.

In opposition to the two cultures argument he quoted from Leonardo Da Vinci's Principles on the principles for the development of a complete mind:

"Study the science of art. Study the art of science. Develop your senses- especially learn how to see. Realize that everything connects to everything else."

David Morley also made the interesting point that at its best all writing is creative. It is the act of expressing thoughts and experiences in a way that has not been done before. Even something like reporting on this seminar session has that element of creation as I search for the right words to adequately describe what happened and my reactions to it. ( I like this definition not least because it salves my conscious as I write this blog instead of attending to my creative writing studies with the Open University).

Chris McCabe started by saying that he two was faced with a polar choice of the humanities or sciences and ended up doing a PhD about "what time fruit flies go to bed". Whilst working as a scientist in his words "he read a couple of crap books and thought. I could do that."

After the precision and prescription of scientific writing for his day job he took up writing anarchic comedies as a reaction and contrast to that. However his later fiction has been in the form of thrillers involving forensic science so he is drawing on his science background for them.

He expressed more of a contrast between the two disciplines than David had and said he enjoyed having a foot in both camps.

Both speakers made reference to the idea that scientists may often have artistic or humanities interests and there are perhaps lower barriers of entry for a scientist - who is in one sense only a scientist for 40 hours a week - into the arts than for an artist into the sciences. David Morley expressed the opinion that he knew many scientists who were "encultured" but the reverse was not often true for whatever reason.

In the open discussion the point was made that the Cheltenham Festivals were started by researchers at GCHQ and encompass arts and music. It was far less common for a group of writers to put on a science festival.

A particular bug bear of mine was also aired namely the almost pride with which some people may say they are no good at maths, computers technology etc. Whereas people might be more circumspect about expressing their illiteracy. ( Not that I think people should be ashamed of not being good at science and technology, far from it, but don't try to make a virtue of it either).

I made the broader point that it is not just an issue for writers but it goes to the whole problem of science education and the lack of basic scientific understanding in the population at large and this permeates through all aspects of life.

The role of popular science books was highlighted as an important area for bridging the gap and David Morley's courses for scientists may well go some way to helping more and more of them be able to write well and reach a larger audience.

This session was probably the one of the day where it felt like we had only scratched the surface of the issues involved before it was time to wrap up.

One thing I didn't get to mention was the portrayal of science and scientists in creative writing and entertainment culture in general. The stereotype of the mad scientist is all too common in popular culture and the scientific method horribly traduced. Oh and don't get me started on the portrayal of dedicated IT professionals in modern cinema.

T + 798 Writers Toolkit Part Three

2010-11-23T18:57:00.005Z

The second session I attended was about the use of digital media and tools.

Doing Digital

Working on digital platforms and using social networking is now part of our lives. How can writers make it work for them, both creatively and to manage their careers?

Peggy Riley: writer, Director: East Kent Live Lit
Chris Unitt: Managing Director: Meshed Media
Ros Robins (Chair): Regional Director, West Midlands: Arts Council England

This was probably my favourite session of the day which I guess might be performing to type for me as a professional Geek, but even so I think it is a subject many writers are interested in today.

Chris started by explaining a little of his background and what his company does, which you can find out more about via the links above. He was keen to point out digital tools should be just that tools to achieve another end. Tools to be used imaginatively by creative people and they need to be "taken out of the hands of the geeks".

His other main blog Created In Birmingham which has a readership of about 3000 is an example of how tools can help to reach an audience that would be far harder to build up via more traditional means.

Chris was also interested in how digital tools could be used to create new forms of the writing arts. He was particularly interested in using twitter and mentioned that thanks to how the Japanese language works the 140 character limit was effectively close to a 140 word limit and so some authors were now writing twitter novels and issuing them in daily instalments. That might not be directly applicable to English but it showed the sort of inventive uses to which digital technology can be put. ( I didn't get chance to mention at the time that the Drabble Cast actually runs a 100 character story competition for what are known as twabbles. )

Other areas on interest and ones which Peggy Riley would expand upon included the use of digital tools to allow audience interaction with the creative process and the use of non-linear story telling.

Peggy Riley's opening remarks addressed two areas. Firstly the use of social media such as blogging, Facebook and particularly twitter as a tool to help writers network and secondly tools that can be used directly in the creative process.

Peggy said the social networking and blogging tools were ideal ways to help a writer build up a network of contacts and establish relationships with both readers and people in the publishing industry. In particular it was useful to follow various twitter feeds from publishers and editors to get a feel for what was happening right now in the industry.

The blog for Peggy was a place to lodge a quick impression of where she was with some aspect of her novel to be of interest to her readers but also as an archive for her own use later. It was also fascinating to see the statistics of how people got to her site and what they were searching for to find it.

For the actual creative process Peggy mentioned a number of sites and pieces of software that can help with both traditional and new forms of story telling and a few are listed below:-

DreamingMethods.com is a site that describes itself as "...... a fusion of writing and new media exploring imaginary memories and dream-inspired states" it allows for the creation of interactive link based non-linear fiction that can be guided or completely free form. They also licence the source code for their tools so you can implement them on your own site. Peggy said the projects on this site could be particularly useful for "reluctant readers" (which usually means teenage boys I guess ) as the writing could be made to feel more like a game.

TheLiteraryPlatform.com is ".... dedicated to showcasing projects experimenting with literature and technology. It brings together comment from industry figures and key thinkers, and encourages debate." Peggy described it as a great place to find out about tools for digital technology in the creative writing arts.

Two sites she mentioned that showcased the way digital fiction could be used were webyarns.com and stayconscious.com . Ether Books is a company that publishes new works directly to people's mobile phones and they are looking for more authors to take on.

In the open discussion section there were a number of interesting points made.

One person was concerned about the copyright issues and if it was possible or advisable to subsequently submit material published online to a traditional publisher.

Peggy was quite firmly of the belief that you should not publish the entirety of a work online if you wanted to get it picked up subsequently by a traditional publisher, though it was perfectly reasonable to put extracts on line to build interest .

I can see the logic of this especially for full time writers but I did chip in to say the author Drew Gummerson wrote a series of short stories about two characters and published them on abctales.com ( where I publish my stuff ) and they subsequently formed the core of the novel Me and Mickie James published by Jonathan Cape. So it needn't close down a traditional publishing route if you publish online. Of couse the risk is the publisher just sees the free online content a diminution of potential readers for the printed book.

The $64,000 question about how to build an audience for a blog came up and the advice was to decide who you are blogging for and try to keep a focus and then becoming involved by commenting (constructively and legitimately) on other blogs that have an audience you would like to address is a way to get "click through"

One person in the audience said she felt in something of a quandary about how to balance time spent Writing ( i.e. creative writing) and blogging. In her case she really enjoyed blogging about the writing process but felt it kept her from the actual writing even though people had commented very positively about her blog. (As I write this post my eye is drawn to the Creative Writing Workbook for the Open University course I should be studying right now.)

Peggy was very astute in pinpointing that one of the attractions of blogging was the immediacy of the tool itself, after all you get to click a button that says publish whereas the time between writing a piece and it being delivered to an audience could be months or even years. She said one option is to use the blog as a creative writing notebook as well as for writing about the writing process so you can get the quick hit clicking the publish button whilst still moving your writing forward.

She also mentioned the excellent product Scrivener which I have used on the Mac to write most of my fiction and is currently in Beta test on Windows. ( But all writers use Macs surely?) This writing tool first has an excellent full screen no internet access mode to stop the distractions and also allows use of, for example, cork boards for moving individual scenes about to aid in the creative process.

What I liked about this session is that it avoided the rather tired debate about "are eBooks a good thing or a bad thing for writers?". The delivery or consumption method for eBooks may be different but the content is largely the same. Chris and Peggy were talking about new and exciting ways to create whole new forms of literature.

Chris Unitt used a distinction I have heard before which I think is just a brilliant way to describe the difference, books be they on paper or a digital device are "leaning back media" where as interactive non-linear digital literature one accesses on a screen is a "leaning forward media."

...and so to lunch.

T + 797 Writers' Toolkit Part Two

2010-11-22T12:21:00.011Z

After the initial plenary session of the conference there were separate symposium/seminar/panel sessions with a number of different topics being addressed.

The first one I attended was:-

Different Fictions

This had the topic of:-

It is too easy to assume ‘literary’ novels when we talk of fiction. Excellent writing sustains other genres. This session looks at how we can support and celebrate this work.

Ian Macleod : ‘fantastic’ fiction writer
Catherine Rogers: Project Manager: Writing East Midlands
Damien Walter: Writer, Director: The Literature Network
Jonathan Davidson (Chair): Chief Executive: Writing West Midlands

The panel spoke about some of the pre-conceptions they felt that genre fiction was up against when being considered as Literature ( with a capital "L"). The main areas discussed related to science fiction, fantasy and horror writing but were equally applicable to thriller, crime, romance or any other genre.

Ian Macleod made the point that the demarcation of genre had become more noticeable in recent years and when he was reading in the 1970s for example things were less delineated with writers like J G Ballard and others being considered mainstream and science fiction seemed to be one of the best ways to address the issues concerning society at that time.

Ian went on to say that he now feels when pitching his work he has to say "I write science fiction but...." and go on to explain his novel The Light Ages for example has a very Dickensian feel to it and if you like Dickens you'll like that.

Damien made the point that all writing ultimately emerges from ideas and concepts that have gone before and could always be said to be of a genre.

He also made the important distinction between a genre novel and one that was generic. There may be many formulaic fantasy epic novels out there and people may enjoy them and want to get what they expect but there were also lots of writers with new and original things to say.

Naming was also an issue and Damian preferred the terms Alternative, Weird or Speculative fiction to avoid the preconceptions people have of horror, fantasy or science fiction.

Catherine explained how, as part of Writing East Midlands, they run a very successful alt.fiction literary festival for all aspects of writing in these genres. The key she said was to bring literature to the fore and change the emphasis as compared to a fan convention.

She said she was impressed by the writers who talk at the festival and the things they have to say are relevant to any form of writing.

All the panel members felt that by having separate sections for genre fiction in bookshops and review sections of newspapers ( if indeed genre fiction is reviewed at all ) these "ghettos" where depriving a wider audience of good writing.

There was a lot of talk of "mainstream" that the panel members seemed to tie in with literature and literary fiction so in the general discussion I made the point that the reality is that "literary fiction" is almost as much a ghetto as the genres. The mainstream for most people was populated by Jeffery Deaver, J K Rowling and dare I say it Dan Brown and genre fiction was in one sense thriving. (Indeed after the conference I had occasion to visit Waterstones in Birmingham and virtually the whole of the 1st floor is given over to science fiction, fantasy and horror writing. It was more of an enclave than a ghetto.)

Responding to this, Damian took what he said was a sometimes controversial view that there was a class association with types of fiction and at inner city schools where he had done work there was little accessible literary fiction to interest readers as they felt it was not about them.

The genre fiction however was able to take issues not being addressed elsewhere and weave them into the stories they tell. Iain M Banks was cited as a writer with strong socialist messages that are expressed in his Culture science fiction series.

Another member of the audience, who worked in children's literature, said that in the emerging Young Adult arena genre is far less of an issue or even noticed as it is all subsumed into the overall grouping of Young Adult and this was a positive thing.

I wonder if perhaps as these readers move into their 20s and beyond they will start to demand or at least seek out genre fiction and the booksellers and reviewers will have to react.

Jonathan asked what positive steps could be taken to get genre fiction to a wider audience.

One view was that it needed to be given more space in mainstream literary reviews but how this was to be achieved was not really discussed. I think there is a negative feedback loop there, it's not reviewed so only fans find out about it; because only fans follow the genres it's not reviewed for the mainstream audience.

Ian suggested short fiction was a good way into a genre to get a feel for good writing without having to invest a lot of time. Though short fiction doesn't exactly do that well in book stores or reviews either.

On the review point he quoted the now famous Sturgeon's Law , when told that 90% of science fiction is rubbish writer Theodore Sturgeon responded "well 90% of everything is crud" ( or "crap" if you prefer ). This is a really valid point, in any field of endeavour , by definition almost, only a small amount will be really really good. It can't all be above average.

One thing I was unable to mention during the discussion but would like to plug now is the use of audio podcasts as a way to get a taste for the current state of genre fiction. For me the best place to look is the Escape Artists group of science fiction, fantasy and horror podcasts. With the Drabble Cast also very worthy of note.

T + 796 Writers' Toolkit Part One

2010-11-21T10:44:00.002Z

Yesterday I attended a one day conference for writers and people involved with the creative writing profession entitled The Writers' Toolkit. This is the 3rd annual conference of its type run by Writing West Midlands.

It was a thoroughly enjoyable and well organised event held at the Digbeth campus of South Birmingham College and over the next few blog posts I'll be writing about what I saw and heard at the conference.

Beginnings - No Messages

After a witty and well delivered introduction to the day from the Chief Executive of Writing West Midlands , Jonathan Davidson, the opening keynote talk was delivered by the author Jim Crace.

In an entertaining and heartfelt talk entitled No Messages Jim Crace spoke to what it means to be a writer and how the reality of it differs from many people's perceptions.

He began by explaining how for Christmas one year at the age of 11 or 12 in about 1956 his father bought him a copy of the Everyman Roget's Thesaurus, a copy he still uses to this day and indeed he had in his hands as he spoke. Apparently his father had decided his son already "quite a little liar" might best put his talents to use as a writer.

This was not something Jim had ever considered before and he began to look at what being a writer meant. Thus it was he formed the romantic image of the writer as hero. From Jack London driving huskies in the arctic and Orwell in the trenches of the Spanish Civil War, through to Jack Kerouac, unbelievably cool and handsome pictured in Madmoizelle Magazine with his 120ft long continuous manuscript typed on telex paper in three weeks of "bop prosody." How could you fail to be excited by the prospect of such a life? Plus you can write a book in just three weeks.

Jim Crace's most enduring and contrasting image was that of Omar Sharif in the titular role of Dr. Zhivago, sweeping down the stairs of an elegant Siberian Dacha in luxuriant robes to sit at a Louis Quinze escritoire and pen, in a perfect hand with no mistakes, the love lyric to Lara.

Having painted this wonderful picture of the image of a writer he brought us all down to earth with a description of the reality that was probably very familiar to many working or aspiring writers in the room. Your desk, probably in some corner of a shared family space or if you are lucky a cramped shed, will not be an Louis Quinze escritoire but a cheap one from IKEA (indeed as I type this I am in my shared study seated at an IKEA table that cost about £25) Here you will be faced with the writer's worst nightmare the tyranny of a blank page or screen.

In expanding further on the modern writer's life he now also explained where the No Messages title of his talk came from. When his daughter was about five and had just learnt to do some joined up writing she also became passionate about stationery, a passion she now shared with her father and something that seemed to get a murmur of acknowledgement when he spoke about the pleasures in looking through stationery shops on foreign holidays for new and interesting notebooks. ( This is certainly one of those Irrational Pleasures I should add to my list I've expounded upon before).

Enthused with this passion his daughter bought him for one Christmas a note bloc, a 2.5" block of pastel coloured notes and after he had opened it and expressed genuine delight his daughter went and placed it with due ceremony in the middle of his desk. The next day when he went to his shed he found his daughter had written in her best hand on the top sheet of the bloc the words No Messages and so it was for several more days before his daughter's attention was taken elsewhere, each day he would find the new top sheet of the block had "no messages" written on it.

That is how it can be for a writer faced with the tyranny of the blank page. Jim Crace described his profession as a terrifying way to earn a living (notwithstanding people who did real work of course ). When he was a journalist he had no chance to have writers' block or say the muse had abandoned him . He had to get his words in on time but now he was doing creative writing there was no urgency. When his editor called and he would say, rather embarrassed, that he hadn't written much that day he would be met with a jovial, "Don't worry, take your time, take your time. It's the creative process."

So it is with writers. They are volunteers. There is no real need for any one person to write a book or play. The bookshops are full of books and there are no blank spaces in the Radio Times where they just don't have a programme. If you don't write a book then the world will not miss it.

You are a volunteer and if writing makes you unhappy then you should just stop. In a strong statement and in parellel to the statement by Enoch Powell that "all political lives....end in failure" he said the overwhelming sentiment for writers seemed often to be one of bitterness. From the bitterness of the new writer who can't get published through the single novel writer who can never repeat the success even up to writers he knew in their seventies and writing better than ever but to coin a phrase I heard the other day "couldn't get arrested".

With this in mind and all the distractions of a normal life including Cyril Connolly's famous "pram in the hallway" and the shame and anxiety of the blank page, how are writers to make any headway. The answer Crace said was that expressed by Flaubert, "Writing is in the re-writing." ( Something I personally struggle with a great deal).

You need to get words down, to splash on the undercoat so you can prepare for the gloss. You have to have something to respond to.

Finishing on an uplifting note he said that although in one sense writing is a solitary profession when you write you are not alone for you have the spirit of Narrative with you. He meant this in more than just a poetic sense for he said the fact that narrative and story telling had endured for so long meant, from an evolutionary point of view it must have some purpose. Indeed he said at the core of our being we are narrative creatures.

The process of writing becomes ecstatic when narrative itself is working through you. Then there was the balancing act of using your skills to stay in control like a child flying a kite which was part controlled and part left the vagaries of the wind.

When writing is at its best you write not for your own sake but for the sake of the thing itself you are writing.

T + 792 Grapefruit and Swimming Pools

2010-11-17T22:20:00.003Z

I went to the clinic yesterday and finally after 792 days I have been told I can stop taking ciclosporin.

This is quite a symbolic step even though the 10mg once a day dose I was on wasn't doing that much it was enough to partly suppress my immune system and keep any last rumblings of GVHD down. Hopefully the GVHD won't return.

One of the immediate consequences of this is that I can now drink grapefruit juice and eat grapefruits. I was not allowed them whilst I was on ciclosporin as it reacts with it and increases the levels carried in the blood. It's one of the less onerous conditions of my treatment that I have had to bear but even so I may celebrate tomorrow with a glass of chilled grapefruit juice.

I had a nice long chat with my consultant about how you classify the state of my immune system and I also asked him a couple of questions about how antibodies work just for my own curiosity. He explained the key points of the immune system as simply as he could and even then it is still pretty complicated but I won't bore you with the details. Google and wikipedia and a lot of time will enable you to find out more if you want to.

Suffice it to say that when you consider it takes a child getting on for 10 years to develop a mature immune system and mine is only 2 years old and has been suppressed and molly coddled for most of that, my current immune status can best be described as naive. However with the help of vaccinations and the basic process of exposure this will improve over time. The problem will be that exposure may mean me getting sicker for longer than someone with a mature immune system would be when exposed to the same pathogen.

I asked the doc a couple of questions about more steps towards normality. One was being able to take sinus and cold symptom remedies that have decongestants in them ( again previously these interacted with things so I couldn't have them ) this got an ok. Finally the big one, was it ok to go swimming as before treatment this was my favoured form of exercise.

The doc said yes he felt that was ok though he did preface that by saying "well swimming pools are cesspits of disease but at least they are cesspits with chlorine in". On the plus side I have had a bout of verrucas since my transplant so I should be ok on that score. ( Odd co-incidence that it is a year to the day since I blogged about having verrucas).

My next appointment is in two months which I think might be the longest I have been between appointments. Hopefully then I may be able to stop taking the blood pressure medicine amlodipine as it was the ciclosporin that caused the high blood pressure and it wasn't something I suffered from before I went on it.

T + 783 It's Story Time

2010-11-08T16:33:00.003Z

I'm pleased to say the antibiotics have cleared up my secondary infection and my annoying tickly cough had all but gone. I'm at the clinic for a regular appointment next week.

Creative Writing

As mentioned previously I'm doing a creative writing course with the Open University.

Here is a link to the first full story I have written for this course. ( It's only 750 words as that was the limit). http://abctales.com/story/raetsel/end-pier

Here's the teaser for it.....

He woke with the now usual flicker of confusion then the weight of remembrance came crashing in upon him. He was cold, that was always the first coherent thought he had.

T + 773 Not Quite So Normal After All

2010-10-29T13:37:00.003+01:00

After feeling proud of myself or more specifically my immune system for coping with a bout of Man Flu all by my/itself I had a little reminder that I'm not yet back to normal after all.

After a week of working from home I went back to the office for the next four days and worked from home as usual on last Friday. I had a bit of an annoying cough and maybe a sore throat though nothing like it was. I took a few strepsils and things were ok. I figured this was just the death rattle of the cough as it gave up the fight.

Over the weekend I did feel rough and had a couple of bouts of having no energy but a nap seems to set things right. In my experience a nice nap in the day can fix most things.

Monday was ok but tiring and this Tuesday I went down to Hewlett Packard's Disaster Recovery facility in Rugby where I have been several times for work before and where we practise recovering our systems from just backup tapes on the basis of some disaster like fire or flood destroying our main systems.

It was a busy day and quite stressful but a positive sort of stress if you know what I mean. The pressure you get in a sports game maybe ( let's face it this is as close to that analogy I'm going to come in my life at the moment). By the end of the afternoon I had this regular dry hacking cough and felt lousy, tired, no energy and slightly woozy headed if I moved around too much.

I made it home and collapsed on the bed a couple hours once I got in. My temperature was a little higher than normal but nothing near what medics would call a fever so I knew it wasn't emergency level serious but I needed to get it checked out so I gatecrashed the usual Wednesday morning transplant clinic the next day though my next scheduled appointment wasn't for several weeks. Gareth offered to take me in rather than having to ask my Dad. This was very good of him especially as he has something of a phobia of all things medical. ( Not ideal when your partner has cancer.)

I saw a newly appointed consultant who was very good who had come in from another region. He gave me a thorough exam and sent me for a precautionary chest X-ray though my lungs sounded clear through the stethoscope. He said it was probably a common secondary bacterial infection that sneaks in on the back of a viral infection like the cold I had had. I was given two types of antibiotics Augmentin ( or Co-amoxiclav to give it a generic name ) and Ciprofloxacin and told to rest up.

The timing was lousy for work as the Disaster Recovery test was a busy one but I wouldn't have been in a fit state to work on it when one slip can mean having to go back to a tape recovery that takes several hours. So I've spent the rest of week at home taking it easy.

The antibiotics do seem to be working. I still have the cough though not as frequent and overall my energy levels are better though I still feel a little woozy headed now and then. Hopefully by the end of the seven day course of tablets I'll be back to how I was before the cold.

I've had secondary infections after colds a couple of times long before I was diagnosed with lymphoma and just either shrugged them off or had antibiotics from my GP to help. I might have been able to do the same with this one but I couldn't take the chance so went up to the hospital. At least they didn't think it was serious enough to keep me in.

All in all another frustrating episode on the road to normality, though I am starting to think I am going to have to revise what I think of as normal. Despite everything I have learned about my condition and its treatment over the last three years it seems a part of me thinks once I get off the ciclosporin and its immunosuppressive effects have left my system then everything will be back to how it was before I was diagnosed.

Can't blame that part of me for being optimistic but I'm going to have to sit and have a heart to heart with myself to manage my expectations.

I'm booked in for my flu jab at the GP's on Monday so I just have to make it through the weekend without catching flu.

T + 758 Normally Sick

2010-10-14T15:17:00.002+01:00

Last Wednesday I went to the clinic hoping to have my ciclosporin stopped but the cunning haematologist found a way to prolong the taper. Instead of having 10mg twice a day it is down to 10mg once a day. However my next visit, in six weeks', well five weeks' time now, will be when I stop as long as the GVHD behaves in the meantime.

I also saw the endocrinologist and he said my hormones were all fine apart from a slightly elevated prolactin level. However he said it was only just over normal. The top of the range is 300 units and mine was 350 this was not a concern to him though, as he sees people with a figure of 300,000 units and that really is elevated but for men it still has no real consequences.

I asked what prolactin does and in women it is involved in the immune system and breast miik for babies. Hence the "lactin"/"lactose", but in men they don't really know what it does. He said he would test the levels this time round and if they had not increased significantly then he wouldn't need to see me for a full 12 months. If they have increased he'll call me back in just to check the pituitary is working ok as that controls prolactin but he expected it would all be fine.

After clinic I went to a music gig at the HMV Institute in Digbeth, Birmingham to see Kate Nash. She was great but before the gig I noticed a tickle in my throat and when I woke up on Thursday I had a definite sore throat. This developed over the day along with feeling generally crap so I left work early.

Handily I had asked the haematologist at clinic about just seeing how things went if I got a normal cold as long as my temperature was ok. He said yes that was fine as long as my temperature was not up and I did not have a "productive" cough i.e. one that produces stuff e.g. green or yellow phlegm. I didn't think I would be putting it to the test quite so soon.

However my temperature was fine for the most part over the weekend, it had a little blip Sunday morning when it was 37.8 , near the magic 38 that means I have to call the hospital but it went down quickly over the next hour or two.

I took Friday and Monday off sick from work and have been working full time from home the rest of the week. This is partly to give me more time to rest instead of 90 minutes travelling each day and also to avoid spreading the cold at work, something I hope my work mates will appreciate and return the favour if they get sick over the upcoming cold and flu season.

Folks it's not big and it's not clever to drag yourself into work coughing and sneezing just because you feel you have to make an effort. If you have the option to work from home then do that if you must but better yet take the time off to recover properly if you are not well. I know I have a selfish reason for this but spreading a cold even amongst healthy people is not a good idea and costs the UK thousands of lost work days.

I still feel a bit rough in the mornings and a bit snotty with an occasional cough but it makes a change to be able to be just "normally sick" and not go off to hospital.

T + 739 Back to school

2010-09-26T12:39:00.003+01:00

A non-medical post, which must be a good sign. However for those who hang on my every word of my medical condition: This week I came off the gabapentine nerve pain killers completely and have had no twinges from my shingles which themselves are fading fast and barely visible as light blemishes around my middle.

Back to School

Some of you may know that I did a degree with the Open University in the late 1990s in maths and computing subjects. Well I am now back with my old Alma Mater but this time doing my first course where the code for it begins with an A indicating it is in the Arts faculty.

Specifically I am embarking upon A215 Creative Writing. This is a second level course but it does not need any pre-requisites as long as people are used to or can cope with studying on their own. Having done a lot of self-study not only with the OU I should be able to cope with the demands in terms of managing my time.

After completing NaNoWriMo to write Reunion last year (did I mention I wrote a novel? ) and a couple of other short pieces of writing subsequently, I decided I needed to have some external stimulus to help me get into a more regular writing habit. I also recognised that rather than finding things out the hard way in terms of what works and what doesn't in my writing I might be able to short cut some of that process by studying the craft of writing.

The course is aimed at beginning writers and after covering ways to get into a writing habit it covers three areas Fiction, Poetry and Life Writing.

My main interest will be in fiction but I have been known to pen the odd poem though not for a long time. The area of life writing is the least appealing to me but I'll approach it with an open mind. It may come as a surprise to people that I am not interested in life writing as a few have suggested that I turn this blog into a book.

I guess my reasons for being less keen on life writing are two-fold, firstly I suppose in one way I already do that via this blog though it is hardly the most literary of endeavours and not the main purpose of the blog. Secondly, whilst I enjoy telling anecdotes about my experiences to people in a face to face situation the thought of writing them down for others to read has less appeal because one of the joys of writing for me is in the creation of something new, something that I don't already know as it were.

Finally I can't imagine it being particularly interesting to anyone who doesn't know me and those of you who do have this blog anyway. That last point is stated very frequently by people in relation to writing about their life. Why would anyone be interested? What's so special about my life? This is stated by Stephen Fry in the latest volume of his autobiography that I have just finished listening to him read on audiobook. The way he phrases it, and perhaps this is the big difference, is that his life is no more or less interesting than anyone else's.

I guess it comes down to the telling as much as the content but let us wait and see what I make of it when I come to that section of the course.

One downside to doing this course is that I will not be able to enter the NaNoWriMo this year as I know I won't have time to complete it whilst also studying A215. Maybe next year.

Finally I recently wrote a Drabble which is a story of exactly 100 words, this is available on my ABC Tales account but as it is only 100 words I thought I would reproduce it below as well.

House Arrest - A Drabble

I knew it was a risk going out in daylight but I was desperately low on supplies.
As I turned the corner of my street I saw the dark, menacing outline of one of their vans patrolling.
Would my neighbour cover for me?
I just couldn’t risk it.
I was on my last warning.
I sprinted down the alley.
Lungs bursting, heart pounding, I vaulted the garden fence and crashed through the back door.
Was I safe?
I looked up the hall and saw with dread, there on the mat, a small card:
“We tried to deliver a parcel today…”

T + 730 Now We Are Two

2010-09-16T10:53:00.002+01:00

Today is the second anniversary of my Bone Marrow Transplant. Or if you prefer it is my immune system's second birthday.

Two years on and things are going really rather well. Apart from the little hiccough with shingles last month, since the beginning of this year there has been a steady reduction in medication and a steady return to normal life.

Looking back to this time last year things were a bit rough as the steroid withdrawal was causing a problem and I had the beginning of my under active thyroid taking effect. Even so over two years I've only been back in hospital twice ( by a strange coincidence both in August almost exactly a year apart. Trust me I do not use the Queen Elizabeth hospital for my Summer holidays. )

I also passed another small milestone along the way. The 12th September was 900 days since I first started chemo in preparation for the transplant that was to follow a few months later.

By this time next year I really should be back to being as normal as I am going to get ( you can interpret that a number of ways of course but I am just referring to medical matters. ;o)

T + 715 Croeso i Gymru

2010-09-02T19:51:00.003+01:00

Welcome to Wales

The end of my convalescence was spent with a relaxing weekend in Wales. By happenstance Gareth and I had already decided we were going to go away for a short break somewhere over the August Bank Holiday and it coincided nicely with the end of the sick note for my shingles.

We stayed at the Plas Morfa Hotel in Llanon, Ceredigion overlooking Cardigan Bay. As you will see from the pictures the sea was literally a stone's throw from our hotel room.

We arrived on the Saturday and just walked along the local beach and had a very nice meal in the hotel on the evening. On the Sunday we did a four mile coastal path walk into the small town of Aberaeron which according to the sign was just four miles away. It was quite a hilly path and I thought I coped pretty well really. It took us 90 minutes to do the walk but later that day we got the bus back and it took 9 minutes. ( Though the view wasn't that good).

We had a fish and chip lunch on the front at Aberaeron and after returning to the hotel via said bus we drove into Aberystwyth on the night for a look round the town and delicious meal at the Olive Branch Greek Restaurant overlooking the pier.

Monday we drove back via Devil's Bridge and took in eponymous bridge and the stunning nature trail along the valley by the spectacular Gyfarllwyd Falls on the Rheidol river.

Pictures of the trip can be seen here and here.

There are also a couple of videos. One of the rather windy start to the day on the Sunday and one of the waterfalls at Devil's Bridge.

Back to Work

Tuesday saw me back at work and I went in to the office so I could get a clean break from my stay at home as it were and also as after three weeks at home I was missing the day time company. It was a tiring day but I was glad I did it. I was able to work from home yesterday and it was easy to get back into the work groove.

Today I was back in the office and tomorrow is a usual Friday working from home.

My shingles pain is still very up and down but overall improving and I can go almost a whole day without any significant twinges.

Sunday

T + 704 Sit Rep

2010-08-21T10:50:00.002+01:00

Just a quick shingles situation report.

I went to the clinic on Wednesday 18th August and saw the registrar. He had a quick look at the shingles and confirmed the outbreak appears to be over as the lesions have crusted over and started to fade in places.

He told me to keep taking the gabapentine for four weeks for the nerve pain. He also reduced my ciclosporin to 10mg twice a day. Assuming we continue the taper as it has been at 10mg per visit then when I next attend clinic on 6th October I should be stopping ciclosporin altogether. ( I hope we don't go down to 5mg not least because that will be really fiddly to measure the liquid in my syringe. )

I was signed off work until 30th August ( though it will be 31st when I can actually go back to work as Monday 30th is a Bank Holiday).

The pain from the shingles has been quite intense at times over the last week and I've had to take some co-codamol painkillers between gabapentine doses to help relieve it. Over the last couple of days it has started to calm down a little so I hope it has gone past its peak. I do seem to have adjusted to the gabapentine better and don't have so many problems with drowsiness or fuzzy headedness.

T + 697 All that blisters..... (PG)

2010-08-14T11:39:00.001+01:00

.....is not bold? Ok not a great tag line but my internal sub-editor couldn't resist the alliteration.

Oh I should say that this post is rated Potentially Gruesome for pictures of shingles.

This time last week I was blogging about my admittance to hospital with shingles. Well for those of you who have not heard by other means such as Twitter, Facebook or the Intermom (that special network of mothers that disseminates information between sons, daughters and the friends thereof far faster then the World Wide Web) I was released from hospital on Monday 9th August which was ahead of the schedule I had initially been told.

The reasoning was that we had caught the outbreak early I had had seventy-two hours of intravenous aciclovir and no new lesions had appeared anywhere for forty-eight hours. I was sent home around 14:00 with some gabapentine nerve pain tablets and a ten day course of valaciclovir tablets, which are a form of aciclovir that produce higher levels of the drug in the blood than normal aciclovir tablets.

I was signed off work until the 18th August at least, which is when I have a clinic appointment to review how things are going. I expect I'll be signed off for the rest of that week at least.

The week at home has been ok, I've had quite a bit of pain in the band around my trunk where the shingles are, the area known as dermatome T-8 R as there are eight dermatomes that cover the whole of the trunk of the body, these are the names given to the nerves that run through and "serve" the skin.

The gabapentine does a pretty good job of reducing the pain though it seems to be a universal law that the amount of relief you get from any pain killer lasts about one hour less than the minimum time you have to allow between doses. Thus first thing in the morning and last thing before bed have been the most painful.

Aside from the pain I have felt quite tired and the gabapentine has made me feel really drowsy and fuzzy headed at times during the day. Most noticeably it seems when I hold my focus at a fixed point for any length of time such as when reading. Sounds a little odd I know but having looked round a few patients' websites it seems to have happened to others.

As for the shingles themselves they have, you might say, blossomed but no new areas have appeared, they are all along T-8, but don't take my word for it, see for yourself (you can even click to embiggen and get the full HD experience):-

They still seem to have a way to go before they start crusting over which is the sign the outbreak is over, though it may take weeks for the skin to return to normal. The crusting also means I'm no longer contagious to people who haven't had chickenpox before, pregnant women and people who are immunocompromised.

I could be wrong but I get the impression the valaciclovir is holding the outbreak in check and stopping it spreading but it will have to take its normal course in the area where it started. There is a small chance I may have to go back into hospital to have more intravenous treatment if it does not clear up but I hope it won't come to that.

T + 690 When is a bad back not a bad back?

2010-08-07T12:25:00.001+01:00

The answer is when it is shingles. I'm writing this blog post from Ward West 5 of the Queen Elizabeth Hospital having been admitted yesterday.

It started on Wednesday afternoon, 4th August when I felt an ache in my upper back just below the shoulder blade. Having just worked two eighteen hour days doing a disaster recovery for work, I put it down to having spent too much time sitting in front of a computer screen with my far from perfect posture.

The pain persisted throughout Wednesday and Thursday but co-codamol pain killers kept it at bay and I was able to work in the office as normal. I logged on from home on Friday morning as per my usual routine. I started to get a tender sort of burning sensation under the skin in a band around my abdomen and back on the right hand side but it wasn't until there were some spot/lesions on the side of my abdomen where the tenderness and burning was that I made the connection and realised it could be shingles.

I tried ringing my GP for an appointment but as this was 8:30 in the morning all the appointments for the day had already gone. To be honest that was just a bit of a stalling tactic on my part as I knew I would have to talk to hospital and I would have to come in.

I rang the Bone Marrow Transplant ward, explained I was nearly two years post-transplant and I thought I had shingles. The nurse said she would get a doctor to call me back as soon as possible.

I remember during a consultation about my transplant a few weeks before it took place that the subject of shingles came up. The doctor explained it was common for transplant patients to get shingles(about 30-40% of patients get them within 5 years of a transplant).

As you may know shingles is caused by a reactivation of the chicken pox virus. Once you get chickenpox the virus stays dormant in the body kept in check by your immune system. It can flare up into shingles at anytime especially if you have a weakened immune system. There is anecdotal evidence that stress can affect the immune system enough to cause an outbreak of shingles. ( So maybe my first instinct about the two long days at work being the cause of my pain was right after all).

Shingles is not pleasant for anyone but for someone like me with a naive and suppressed immune system it can be "quite nasty" if not treated quickly. I decided not to enquire into what "quite nasty" meant when the doctor mentioned it back in August 2008.

The doctor said back then to call the ward at any time I thought I might have shingles and just make sure to say "I think I have shingles" and everyone will leap into action a bit like some IRA coded warning sent to a radio station.

Sure enough 23 minutes after I called the ward I got a call back from the doctor in charge of the transplant unit. ( Yes I just checked the call log on my iPhone to get the times, so?).

The doctor asked me a couple of questions about the pain and lesions and then, somewhat to my surprise as I was just expecting her to say "come up and we'll check it out", she said there was a bed ready for me at 14:00 and I would be kept in for at least 5 days for intravenous acciclovir treatment.

So that was it, the well oiled machine was set in motion. A couple of emails to work to explain the situation and where I was on a couple of projects and then I called Dad's taxis to book a trip to the QE. I printed out my list of "things to take into hospital" and started preparing.

Before Dad came to pick me up I called NHS Direct to check it was ok for me to be in contact with him. The nurse said that for normal healthy people who have had chickenpox it was ok to be around me. I need to steer clear of pregnant women and people who have never had chickenpox, however the risk is only through physical contact with the virus (e.g. Contact with the lesions ) there was no airborne component to shingles per se.

I was admitted to a single bed side ward at the QE and the doc took one look at my abdomen and back and confirmed it was shingles even though there were only a few small spots.

As NHS direct pointed out there was no risk to normal healthy people from my shingles but as I am on a ward full of people with immune systems in various states of disarray I would be confined to the side room and that included use of the toilet, so it is the commode for me for the duration of my stay. (Oh joy of joys, unbounded. )

My treatment started immediately. The doc fitted a canula in my arm so I could have IV acciclovir. The dose is 1g in 250ml of saline given over 1 hour every 8 hours.

This means I am only connected to my old friend Ivy the drip stand for an hour, three times a day. The rest of the time I can move about unencumbered. If only I had somewhere to go.

I spent a reasonable night, interrupted only by a bag of acciclovir at around midnight. The pain from the shingles was bearable and I am now on some special pain killers that are good for nerve pain called gabapentine or something like that. I'll have to look it up.

This morning I did get a brief release from the room when I was taken down for a chest x-Ray. This is just a precaution to check I don't have a shingles on the lung. As my breathing is fine it's unlikely to be a problem.

I will finish this blog post with two apologies. Firstly I am sorry it is so long but what can I say I have time on my hands and a fully charged iPad. Secondly as I have typed this all on the iPad keyboard sorry if there are more typos than usual. Right time for a proof read.

- Posted using BlogPress from my iPhone

T + 673 I Felt a Right Tit

2010-07-21T16:11:00.002+01:00

I was at the clinic today , well actually a double clinic as it was haematology and then endocrinology.

The visit the phlebotomist to take my blood samples was pretty straight forward and she found a good vein, which is just as well as in total I had 14 phials of blood drawn. Six of these were for a research programme I am participating in where they take samples of blood every few months.

I was a bit more apprehensive about this visit than usual because over the last two or three weeks I have had a tenderness and slight swelling on the right side of my chest. Well ok let's not beat about the bush here, my right man boob or moob has been tender and slightly larger than the one on the left. Then I noticed what appeared to be a little lump or to give it the technical name the endocrinologist used a "nubbin".

As you might imagine I was not exactly thrilled to make this discovery but I tried to be rational about it and since I had no other problems I decided to wait the couple of weeks until my clinic appointment to get it checked. It was most likely to be nothing serious and at worst probably a cyst but there was a small voice at the back of my mind saying :"yeah three years ago you thought the lump in your neck was just a cyst and look how well that went."

I considered the possibility of it being my lymphoma returning or a secondary cancer caused by my chemotherapy and I'll talk a little about my reaction to this prospect in a moment but first, in case you are concerned, it turns out that there is nothing to worry about.

When I saw the haematologist and explained what had happened she was not concerned at all. She didn't examine me but just said it was very common in men that have had transplants and they had written up a paper about it. She said it was called "gynecomastia" which in yet another example of a medical term that just states the obvious, is basically Greek for "Lady Boob."

She said to mention it to the endocrinologist as he might want to check some hormone levels and maybe get a scan. Aside from that everything else is going well and we reduced my dose of ciclosporin from 30mg twice a day to 20mg twice a day and arranged an appointment for six weeks. ( At this rate I could be free of the ciclosporin in 3 months time to co-incide nicely with the second anniversary of my transplant.)

After that I saw the endocrinologist and he did examine me and confirmed there was a difference on the right side but said it felt more like normal breast tissue than any sort of cyst or lump. He said it could be caused by a number of things including ciclosporin and a reduction in testosterone or an increase in testosterone. ( Clearly it is the Goldilocks of hormones).

He asked me if I took cannabis to which I was able to say no, never and I asked if that could cause it as well and he said yes quite often. They don't put that on the packet do they? The doctor said he would run some extra tests on a couple of the tubes of blood I'd had drawn and if there was anything in there indicating a hormone imbalance he would be in touch but aside from that I should just check it for any changes once a week ( as opposed to about once an hour which is how often I was checking it ).

That aside my other results were fine and my thyroid levels were good so it looked like I was on the right dose of thyroxine. I made an appointment to see him in three months.

So just to go back to the last couple of weeks and my thought processes. I was surprised to find that my main reaction to the prospect of my cancer having come back was chiefly one of annoyance. The whole process of getting it checked and then treated was just a nuisance especially when I was just getting back to normal with everything. I guess this is a healthy reaction, I'm not really sure.

One of the other reactions was concern for the effect it would have on other people so I resolved not to tell anyone about it until I had seen the doctor today. However after about a week I decided to tell Gareth about it not least as it might help explain my slight moodiness at home. It goes without saying he was very supportive about it. I didn't tell anyone else as they would only worry about it and I was doing enough worrying or at least thinking about it for everyone.

It was a relief when the first doctor said it was quite common though I was also a tad annoyed no-one had mentioned it before. Though if they mentioned every possible side-effect of the drugs I am on it would be a very long and worrying list indeed and for the most part I have had very few side effects. I also felt a bit silly for getting into a bit of a state about it, hence the dual purpose title of the blog post.

T + 660 Thank You

2010-07-08T18:20:00.002+01:00

As before if I have an email address for you then you have probably already seen this.....

I just wanted to write to say thank you to all those of you who bought a copy of my novel and/or donated to my Just Giving site.

I know there are lots of demands on people’s time and money so I really appreciate you making the effort to help the charity Cure Leukaemia.

I’m pleased to report I have to date raise £297.80 thanks to your generosity.

If you wanted to make a donation or buy a novel but haven’t yet got round to it you can still do so via the links below.

http://bit.ly/ReunionBlurb

http://www.justgiving.com/SimonStanford

http://www.abctales.com/user/raetsel

Or if you want to make a donation you can just thrust cold hard cash into my hands and I’ll pay it in to the Just Giving site.

Thanks again.

T + 653 Down the Smoke

2010-07-01T09:38:00.004+01:00

It's my Birthday week and in recent years I've started taking the whole week off work and that's not to avoid buying cakes for the office as I will be doing that once I get back in on Monday.

On my birthday itself, Sunday 27th June I kept up another mini-tradition, namely that of taking my Dad to watch the Warwickshire Bears play 20-20 cricket as his Fathers' Day present. This year was slightly different as the only reasonable Sunday game was away to the Notts Outlaws at Trent Bridge.

It was a gorgeous day and we really enjoyed ourselves. The effective use of the Big Screen and the Public Address system at Trent Bridge added a lot to the enjoyment. Unfortunately the Bears lost rather badly. Chasing an achievable 150 the Bears were all out for 117 off the antepenultimate ball. ( It's not many days I get to use the delightful word, "antepenultimate").

On Monday and Tuesday of this week Gareth and I had a little trip away to that London place. Also known as "going down the smoke".

We spent the first afternoon at the Victoria & Albert Museum, a place I have never been before but always wanted to visit. It is a great place but absolutely huge. We just skimmed the surface looking at a few sections; it is one of those places you prolly want to have a specific topic in mind to look at such as jewellery or textiles so you can concentrate on one area. Definitely a place I want to go back to.

We stayed at a very nice hotel near Russell Square called the Bloomsbury Park. The rooms were very nicely decorated and for just over £100 for a room for two so close to the centre of London it was a pretty good deal.

On the evening we went to the Apollo Theatre, Victoria to see the musical "Wicked". This tells the story of the Wicked Witch of the West from the Wizard of Oz and how she came to be wicked. Or rather how she came to be thought of as wicked. It is a very good show with some great set design and a clever story. The character of Garlinda ( or Glinda as she becomes ) almost steals the show. It is perhaps a trifle long in the first half though it ends with the amazing "Defying Gravity" number, but the second half really zips along and is very dramatic in places.

On Tuesday morning we visited the British Library ( which was in walking distance from the Hotel ) and St Pancras Station. I mainly wanted to go see these for the architecture but there was an excellent exhibition about maps on in the British Library.

For lunch we went to Camden Lock a really vibrant market area with each stall or alcove housing a different set of merchandise and having its own unique smells and sounds ( usually provided by a radio or ghetto blaster playing different kinds of music). We had lunch there over looking the canal, seated on old Scooter seats as you'll see if you look at the pics of the trip below.

V&A

British Library & St Pancras Station

Camden Lock

T + 641 Enquiry Conference Part Five (PG)

2010-06-19T08:48:00.003+01:00

This is the final part of my write up of the Enquiry 2010 Conference and one that highlights two of the most important areas where religious practices have a real and negative impact on people's lives. So even if you haven't been following this series of posts I would ask you to read this one.

It is rated Potentially Gruesome for a discussion of delicate surgical matters.

Maryam Namazie

Maryam gave a very impassioned talk about the rise of Sharia or Islamic Law in the UK. You might be forgiven for thinking that Sharia Law has no relevance to the UK and only applies to countries like Saudi Arabia or Iran, like me, you'd be wrong.

I had a vague recollection of some arbitration matters that could be dealt with under private arrangements such as Rabbinical Courts for religious jews and recall the Archbishop of Canterbury getting into hot water when raising the subject of Sharia Law in the UK. However Maryam's talk really opened my eyes.

The 1996 Arbitration Act allows for parties to voluntarily agree to have a legal dispute decided by a body other than a court. The use of this is supposed to be prescribed to certain limited areas of civil law and specific circumstances.

However Muslim Arbitration Panels (MAPs) that operate under the act and can make legally binding agreements and so called Sharia Councils that, though not formally recognised, operate in the UK are being used to override the rights of women in matters of divorce and childcare.

At one level there is the whole issue of consent and whether women in close knit religiously based communities are truly free to consent to have their legal disputes settled by one of these bodies. Maryam gave lots of examples where pressure was brought to bear on young vulnerable women scared of being outcast from their community and family or even threatened with physical violence to make them submit to a Sharia Council or MAP.

Even if you disregard that serious issue the whole concept upon with these bodies operate is incompatible with basic human rights and moral principles of justice.

To give some examples from the One Law for All campaign site:-

Under Sharia law a woman’s testimony is worth half that of a man’s
A woman’s marriage contract is between her male guardian and her husband ( the woman cannot not sign the contract).
A man can divorce his wife by simple repudiation, whereas a woman must give reasons, some of which are extremely difficult to prove.
Child custody reverts to the father at a preset age, even if the father is abusive.
Women who remarry lose custody of their children.
Sons are entitled to inherit twice the share of daughters.

It seems hard to believe that these things can be going on in the UK but they are.

Maryam and the One Law for All campaign have a petition that people can sign to call for an end to these practices and a change in the law. I urge you to sign it.

Dr Anthony Lempert

Dr Lempert is a GP in Powys, Wales and co-ordinator of the Secular Medical Forum (SMF). This is a campaign body with a membership of UK Healthcare professionals that seeks to ensure there is a secular approach to healthcare in the UK.

Dr Lempert was an engaging speaker and with a careful balance of humour and reasoned argument he spoke on a number of matters relating to healthcare where religious beliefs of either healthcare professionals or people other than the patient themselves have a deleterious impact on the patient.

In a wide ranging talk he covered a lot of the obvious areas that might come under scrutiny in relation to religious practice such as abortion, the right to die with dignity and contraception.

One surprising fact he stated was that hospital chaplains are funded by the NHS not by the churches they represent. This is done at a cost to the NHS and therefore the tax payer of around £35 million a year. I naively assumed that these posts were funded by the church.

One of the main areas he concentrated on and that I would like to highlight here is what the forum calls, perhaps somewhat euphemistically, Religious Surgery on Children.

The practice of Female Circumcision or what is more rightly called Female Genital Mutilation (FGM) is a barbaric practise that is carried out on young girls & women for supposed religious and cultural reasons. It was made explicitly illegal in the UK in 1985 but as the SMF point out:-

Some British girls of Muslim parents are still being sent back to the countries of their parents' origin for this dreadful procedure to be done. And, many believe it is even performed secretly in this country. Female genital mutilation (FGM) has been illegal in the UK since 1985 and the law was updated in 2003. It remains unclear why there has not been a single successful prosecution in all that time.

Dr Lempert then went on to discuss the issue of male circumcision, something that is performed on boys of religious jewish parents before the child is 8 days old and on many muslim children in early childhood.

There are medical reasons for a circumcision to be necessary but they are relatively few, these religious circumcisions are completely non-theraputic and this irreversible operation is being performed on babies who can in no way be considered to have consented to this elective procedure.

Dr Lempert put this into perspective in the following way. Imagine a proud Liberal Democrat couple have a baby boy and they take him to their doctor and say as part of raising their child that they would like the doctor to tattoo the word "Lib Dem" on the baby's forehead. What would the doctor's reaction be? Image the reaction if the same couple said actually they wanted their little boy to be tattooed on his penis.

Luckily the tattooing of a minor is completely illegal in the UK but a far more irreversible operation is not illegal. It doesn't even have to be performed by a doctor. It can be performed by religious figures as long as they don't claim they are doctors. They are also not required to keep any record of what they have done or any follow up on the outcome of their operations that can sometimes quite literally be performed on the kitchen table.

You may be thinking, well this is not very satisfactory but there is no real harm done. However to quote again from the SMF.

Research published by Sorrells et al in 2007 confirms ..... that the foreskin contains several of the most sensitive areas on the penis. Many men are too embarrassed to speak out about the harm done to their most intimate body parts in the name of their parents' religion. It is not they who should be ashamed. Scarring, infections, pain on urinating and psychosexual difficulties are not uncommon results of ritual childhood circumcision.

It is hard to get figures on the number of children that get adverse reactions in part because, as stated earlier, non-doctors performing this operation do not need to keep any records, but even if it only affected a few there is no reason to allow this completely unnecessary surgery to take place on babies who may not even grow up to have the same religious beliefs as their parents.

Summary

I must first begin with an apology for not writing up the talks given by Professor A C Grayling and Dr Gijsbert Stoet. They both gave very interesting talks. The 1st on the nature of proof when it comes to God and why it is irrational to believe in a supernatural being, the second on the role chaplains and was there a need for humanist chaplains.

To purvey the subtlety of Professor Grayling's arguments or the detail of the wide ranging areas Dr Stoet covered would take up a lot of space and I fear I may have already gone on too long about the conference on this blog.

However to summarise, it was a very enjoyable and informative conference and I met some very interesting people. Some people may think my active interest in atheism and humanism is just an academic exercise or a personal matter but I hope this post in particular has shown that there are issues that affect the wider public and in a 21st Century liberal democracy such as the UK they deserve to be given proper scrutiny.

The public practices of people of religious faith cannot be given special treatment or be impervious to being held up to the standards for other practice just because they have an imaginary friend that they say tells them to do it.

T + 639 Enquire Conference Part Four

2010-06-15T15:22:00.006+01:00

More write-ups on the talks I heard at the Enquire 2010 Conference

Dr. Evan Harris

Until the recent election Dr Harris was the MP for Oxford West & Abingdon and a prominent figure for science and secularism in the UK parliament. Unfortunately he lost his seat by just 176 votes.

Part of his talk was about the reasons why he lost his seat and how his views on secular and science topics might have affected that. He was subject to some particularly nasty smear campaigns, some more subtle and clever than others, from non-political party organisations such as animal liberationists and pro-life (anti-abortion) movements.

His main regret was that instead of ignoring this negative campaigning, having been advised it would back fir,e he did not start to actively counter it with proper explanations of his position on the issues and the reasons why. He plans to campaign to regain the seat at the next election.

Evan Harris is a very effective speaker and there was a lot of obvious warmth in the room for him and his situation. Having dealt with the reasons for his defeat he used the issues raised there as a means to layout the current legislative position for the topics related to the conference themes of atheism, humanism and secularism.

Dr Harris did not expect abortion law to be changed in the current parliament and felt that the current climate in relation to assisted dying and some high profile cases and court rulings might mean there could be some movement in a positive direction for that.

The biggest issue he felt was the use of loopholes in the Equality Act and other legislation that allows religious organisations ( such as churches ) and organisations with a religious ethos ( such as faith schools ) to discriminate against people for their gender, sexuality, beliefs and even lifestyle.

The UK is in fact in breach of EU directives in relation to equality in employment and infraction proceedings are being taken against the UK Government, who under Labour were contesting them. The key issue is the wide ranging exemptions that are being claimed in inappropriate circumstances.

The UK law and (EU directives to some extent), allow for key posts in a religious organisation to discriminate on grounds of gender, sexuality, belief etc. This is the exemption that means the Catholic Church can discriminate against women for the job of Priest. For organisations with a religious ethos such as charities or faith schools it is also allowable for key posts to be discriminatory however this is being widely used to allow faith schools to insist that for example even classroom teaching assistants in a faith school sign a statement of religious belief and must follow a lifestyle that is deemed appropriate.

Thus a gay person would be discriminated against not only if they didn't sign the statement to say they were christian, catholic muslim etc but even just on the basis that if they had a partner they would be in breach of the lifestyle clauses.

This is clearly a breach of the EU directive and even, arguably UK law and uses the exemptions far too widely.

As Dr Harris put it the fact that teacher's classroom assistant goes about perfectly legal activities such as living with someone of the same sex should have nothing to do with helping with the pottery class.

Dr Harris is hoping that a case can be brought to court where such discrimination can be successfully challenged and the precedent of case law could then be used to stop the loophole. He would also like the UK to stop contesting the infraction proceedings from the EU and change UK law with primary legislation. However given the Conservative Party views on Europe this seems unlikely.

T + 634 Enquiry Conference Part Three

2010-06-12T10:08:00.006+01:00

Continuing my write up and review of the talks given at the 2010 Enquiry Conference.

Norman Ralph

Norman was the founding president of the National Federation of Atheist, Humanist & Secular Student Societies and the topic of his talk was "Is Atheism Past it Sell By Date?"

Norman now works in the marketing and customer relations department for O2 and his talk focused on the image that atheism and humanism has and how it might be better "branded" and "sold".

He stated that according to various polls and studies done the typical atheist or humanist is a while male with a good education and probably over 60. However with various studies claiming that well over 60% of the adult UK population have none or no really strong religious views there should clearly be a much wider representation of ages and backgrounds within the atheist/humanist movement.

Andrew Copson commented that membership of the BHA has two real spikes in the age demographic, the under 30s and the over 50s but between 30 and 50 they had many fewer members. Half joking I suggested that people between 30 and 50 were too busy concentrating on paying off their mortgages.

He also spoke about the established practice in marketing of developing fans rather than customers. Fans are much more loyal and enthusiastic about a brand than mere customers and are more likely to tell other people about the service or products from the brand and more forgiving of mistakes the brand might make.

The example he used was Coca Cola but as was pointed out by members of audience the apotheosis of the cultivation of fans is of course Apple, manufacturer of the iMac, iPod, iPhone and the latest holy tablet, the iPad.

This led to an entertaining little discursion into the analogy of the religious and non-religious with the PC v Mac debate. One suggestion was that the religious zealots were akin to the Mac users where as most people without strong views just used PCs because it was obviously easier. Norm countered this by saying that the religious zealots were in fact Linux users and they were passionate, would admit no other operating system could be better and yet it basically didn't really work.

I would take issue with that of course as a former Linux proselytiser though I did eventually convert to the church of Apple.

Overall Norman's talk didn't have any real answers and was more a pointing out of the issues and a general call to say "something must be done."

I pointed out that one of the problems could be that atheism in particular is just seen as being against something rather than being for something and it is harder to sell a negative in that way. Humanism probably has a more positive message.

The other point I thought of later and discussed with Andrew Copson at lunch was that Norman's approach and analogies were all with brands and companies that were related to products and the natural analogue would be to other successful movements like the environmental movement. Andrew pointed out that as little as 20 years ago if you were a "green" then there was a stereotype of being a sandal wearing hippy type whereas today people gladly and even proudly say of course they are green and do their bit for the environment. If the same point could be reached with Humanism we would have come a very long way indeed.

Chris Worfolk

The topic of Chris's talk was "Inside the Evangelists Lair: Encounters with the Christian Union" it gave some background to the Christian Union and its current day activities on University campuses today where it is often the largest and most active of student societies.

The Leeds Atheist society was founded by Chris in part in response to the activities of the Christian Union.

Apart from providing a lot of autobiographical information about Chris's involvement with atheism and humanism the talk didn't really come to any hard conclusions about the Christian Union.

Professor Chris French

Professor French is Professor of Psychology at Goldsmiths College, University of London and co-editor of "The Skeptic (UK)" magazine.

His talk was on the psychology of anomalous experiences. These he defined as being encounters with bizarre and unusual phenomena which includes but is not limited to things often called paranormal experiences such as ESP, psychokenesis etc. and also including things like near death experiences and claims of alien abduction.

He was a very polished and entertaining speaker and clearly knew his subject very well. He looked at some of the possible psychological causes of why people might believe in the paranormal as well as describing some of the problems of doing research in these areas when often there are only eye witness accounts of what happened.

He gave some simple practical demonstrations of what were in essence psychological or straight conjuring/mentalist tricks where you could easily ascribe psychic causes to them but actually had simple mundane explanations.

In the area of the problems of eye witnesses he explained a very interesting experiment he conducted. Before describing this I would ask you to think of a clock with Roman Numerals on it, if possible think of an actual clock you are familiar with such as one in your house or on a public building you know well. Without looking at the clock, if it is nearby, think about how the numbers 3, 4 and 5 are represented.

Like most people, myself included, I suspect you think the 3, 4 and 5 are represented by III, IV and V however next time you are in the presence of a clock with Roman Numerals the chances are very high that the 4 is actually shown as IIII .

The experiment that Professor French conducted was to take three groups of people A, B and C. Group A was shown a kitchen clock with Roman Numerals and where the 4 was shown as IIII and asked to look at it for 60 seconds without being told why. The clock was then taken away and the group was asked to draw the clock from memory as accurately as they could.

The same was done with Group B but they were told at the outset that after the 60 seconds they would be asked to draw the clock.

Group C were presented with the clock and told to draw it whilst it was in front of them.

The results showed that the majority of people in groups A and B drew the 4 incorrectly as IV and with little difference between the results of the two groups it shows that even when people know they will have to recall something from memory later the extra attention they might therefore pay actually makes little difference to the accuracy of their recollections.

As expected the vast majority of group C drew the clock accurately. However if after drawing the clock you took it away and the drawings people had done and then asked them how the 4 was represented, even though they had just drawn it as IIII a couple of moments ago many people said it was shown as IV.

This goes someway to show the difficulties with relying on eye witness testimony where people can only tell you what they think they saw or what they believe they saw and as this experiment shows that can often be clouded by what people expect to see.

I could write at even greater length about some of the other topics and experiments Professor French packed in to his one hour talk but I think I have gone on long enough. Suffice it to say there are lots of rational reasons why people may believe they have seen something anomalous or paranormal when in fact they haven't at all.

Far better to come and hear him speak for yourself. He is due to give a talk to the Birmingham branch of the The Skeptics in the Pub on the 14th July at 19:30 in the Victoria Pub in central Birmingham. I'll be going along for sure even though I suspect the talk will be the same as the one I have just reported it is well worth a second viewing.

T + 632 Down and Dirty

2010-06-10T20:07:00.003+01:00

I went to the Transplant clinic yesterday for the first time since I started reducing my ciclosporin dose and also the first time since my consultant moved to another hospital.

I was seen by one of the other consultants whom I had seen once before when my original consultant was on maternity leave. I asked her, the new consultant, if this was a permanent transfer or if she was just a caretaker manager for me and she confirmed that she will be my consultant form now on.

Sorry if that all seems rather badly worded, it is one of the consequences ensuring the blog remains anonymous with respect to the medical staff and indeed anyone who isn't friends or family. That is fairer to them and gives me more freedom to speak my mind about them as well should it ever come to that. I'm pleased to say that my care has been excellent and I am very grateful for that.

So to the business of the consultation itself. It was relatively short as things are still heading on track and my GVHD is so far behaving itself as I reduce my ciclosporin dose. To that end I am reducing my dose further to 30mg twice a day and going back in six weeks for my next review. ( If I extrapolate from that then in about 24 weeks from now I should be off the ciclosporin completely but lets not get carried away.)

As I was with a new consultant I thought I would just go over my current regime to check she was happy with everything that I was doing. That is basically the precautions I outlined in my blog post the other day. The excellent news is that she said I no longer need to follow the clean diet and I can eat what I like and where I like. Subject of course to the same sensible precautions that anyone would take, so I won't be eating at just any old greasy spoon café.

This is great news and in particular I will look forward to eating lettuce and tomato and other salad veg on my sandwiches. I got the impression from the way my consultant answered that I could have come off the clean diet a while ago but it hasn't done me any harm being on it for longer than was strictly necessary I'm sure. ( Apart from maybe feeling a bit guilty when I have snuck the occasional lettuce leaf or spoonful of yoghurt.)

As it is approaching holiday season the consultant reminded me I need to stay out of the sun to avoid aggravating my GVHD and also that I wasn't allowed to go swimming. I know that will be the final proof of my immune system's return to normality when I am allowed to go swimming in public baths.

Writing & Reunion

As you can see from the widget at the top of the blog I am doing well with my fund raising and that total doesn't include the money from the dozen or sales of my book yet as the printing company pays in single monthly installements. However if you haven't yet ordered your copy or made a donation then please consider doing so.

On the writing front I've written a short story for entry into a competition being run by a podcast that I listen to. It's what is known as a Flash Fiction competition which is the name given to stories with very low word limits. In this case it is 500 words. All the stories will be published on the podcasts' forum pages with the authors' names removed and then the members of the forum ( any listener of the podcast basically ) get to vote on their favourite stories in a series of play offs for the want of a better word.

The three winners get paid for their contribution and have it recorded professionally as one of the podcast episodes.

The nature of the voting process means it's against the rules to garner support for your entry; it must stand on its own merits, so for that reason I won't say anymore about the competition or my entry into it other than to say I'm quite pleased with my effort and I will be interested to see if it makes it past the initial voting rounds.

The judging will be over by the end of July and then I'll be able to tell you how I did and let you see the story if you are interested.

You are allowed to enter two stories and the closing date for entries is not until the end of June so if inspiration strikes then I may enter another story.

T + 630 Enquiry Conference Part Two

2010-06-08T21:02:00.003+01:00

As previously advertised here are my reviews and reflections on the talks delivered at the Enquiry 2010 Conference.

Andrew Copson

Andrew Copson, Chief Executive of the British Humanism Association, the umbrella organisation for humanist groups in the UK, gave the first talk at the conference.

Always a tricky spot in any conference Andrew gave an excellent talk about the objections to Humanism which went through some of the principle objections people often raise to the idea of being a Humanist and then in turn provide counter-arguments to those objections.

His style and delivery was light and entertaining whilst being extremely erudite and he was able to easily draw on a vast knowledge of some of the key writers on the subject of humanism.

To paraphrase his definition of what humanists believe:-

There is natural and scientific understanding of the world without recourse to the supernatural or belief in a deity.
Humans have only one life and there is no afterlife.
Morals come naturally out of being human.
Believe that what is right is that which promotes human welfare
Humans can and should create meaning and purpose in their own lives.

You can think of it as a sort of "Atheism+" creating a proactive, positive approach to life and living.

Each of the objections were described in a couple of sentences but also summed up in a more direct and amusing quote which was usually something that had been said directly to Andrew at some point.

These included:

I can't understand why you aren't a rapist.

The argument is that without God it is not possible to have a valid moral code for life. One of the key arguments to counter this is that it is not really a truly moral or good act if you are only doing it because you hope to get reward in the afterlife or avoid punishment and divine retribution. It is a bit like naughty school children only behaving when Sir is in the room.

The actual quote was said to Andrew by a priest and perhaps says more about what the priest thought his moral code was stopping him from naturally wanting to do.

Science can't explain love.

The idea that science can't explain everything and in particular cannot explain the emotions like love and joy is is a charge laid at the door of humanists who are often described as too rational and too dry.

Whether or not science can provide an explanation for the workings of emotions or not is something of a moot point, even though it seems plausible that the further investigation of the structures of the brain and the nature of consciousness will provide a basis for such understanding.

The point is moot because the emotions are not diminished by any physiological explanation of them any more than the enjoyment of listening to a song and being moved by it is undermined by being able to read music or play an instrument.

Richard Dawkins is your Pope

The idea that humanism is just another form of religion with the same goals and structures is expressed by this sentiment.

Andrew's argument against this showed that the ideas behind humanism existed in various forms long before the term was coined in the way it is used now back in the 18th Century. As such it is a term that is applied retrospectively to a number of different movements that have existed in different cultures going back thousands of years.

This idea of humanism basically being a religion was something that would have a lot of resonance throughout the conference especially in relation to humanist communities and humanist chaplains.

Is this all there is?

The idea that because humanists don't believe in an afterlife or a supernatural creator somehow diminishes either humanity or the wonder of human existence is extremely short-sighted and in some ways rather sad.

Richard Dawkins has tackled this with an expansive response along the lines of "yes this is ALL there is" and going on the list all the amazing achievements of humankind and all the joy and wonder that there is in the natural world.

Andrew also quoted in a full a beautiful poem by Matthew Arnold that showed how impoverishing it was to only be looking towards the afterlife.

I have been able to track down the poem "From the Hymn of Empedocles" and quote the relevant part here:-

Is it so small a thing
To have enjoy'd the sun,
To have lived light in the spring,
To have loved, to have thought, to have done;
To have advanced true friends, and beat down baffling foes;

That we must feign a bliss
Of doubtful future date,
And while we dream on this
Lose all our present state,
And relegate to worlds yet distant our repose?

T + 629 Enquire Conference Part One

2010-06-07T20:41:00.003+01:00

There will be a medical update to the blog later this week as this Wednesday I am attending the transplant clinic for what will be the first time since I started tapering off my dose of ciclosporin.

Enquiry 2010 Conference

This weekend just gone I attended the Enquiry 2010 Conference put on by the Chris Worfolk Foundation on the topic of "Atheism in the 21st Century" and held at the Crown Plaza hotel in Birmingham.

One of the main reasons I went to this event was because of the calibre of the speakers they had there, as you can see from the link on the conference website. Professor A C Grayling and Professor Chris French were people I had heard speak on radio on various topics and I donated funds to help the, sadly unsuccessful, campaign to ensure Dr Evan Harris held his seat in the recent election.

As it turns out it was an excellent conference and really opened my eyes to a number of issues raised not only by the people I was expecting to perform well, as it were.

I've spoken before on this blog of being an atheist ( though as a result of this conference I would also describe myself as a humanist, but more of that anon).

You might think this is something of an academic pursuit and as one friend teased me perhaps I was only going there to get reassurance from being with other atheists that I was doing the right thing and wouldn't regret my choice when I awoke in the afterlife feeling rather warm.

However what the conference brought home to me is that being an atheist and humanist in the UK in the 21st Century is far from an academic exercise but one that has real practical implications. More specifically the corollary of that is that the influence and impact of religious belief in the UK has real practical and detrimental effects on the lives of many people who don't themselves have religious beliefs.

So whilst it was a fun conference with some very informative, entertaining speakers and some academic elements it also had some serious points to make or questions to pose.

As you can see this blog post is headed Part One as I intend to write a more detailed review of the talks I heard and my thoughts on them over the coming days across more than one blog post.

As ever with this blog, part of why I write it is just to have a record of things for me to look back on and I appreciate not everyone will be interested in the proceedings of this conference but in a couple of key areas I would ask you to give some consideration to the issues I'm writing about. ( I'll probably flag those up in a summary post at the end of the reviews.)

If you want a sneak preview of what I'll be writing about then here are some links to follow:-

http://www.humanism.org.uk/humanism

http://www.onelawforall.org.uk/

http://www.secularmedicalforum.org.uk/

T + 621 Happy Birthday Cancer

2010-05-30T12:21:00.003+01:00

Today, the 30th May 2010, is the third anniversary of my diagnosis of Mantle Cell Lymphoma (MCL).

So...Happy Birthday, Cancer.

Of course technically my cancer is older than three years. It had clearly been going on for months and maybe years before I got the diagnosis but let's call that the gestation period and my cancer was given life on the 30th May 2007.

That is actually quite fitting as, on the fallacious premise that ignorance is bliss, prior to my diagnosis, for all practical purposes I didn't have cancer, or rather it had no impact on my life. Aside from a painless lump on my jaw I had no symptoms, it hadn't made me ill. From the 30th May everything changed, from then on there was MCL and me.

I've looked back over the entries I've made in this blog on the last two anniversaries. Two years ago I was in hospital undergoing my initial rounds of chemo. One year ago I was just starting to go back in to the office two days a week and trying to reduce the steroid dose I was on to combat my GVHD.

This anniversary finds me in at the office three days a week, off steroids since January and six weeks into the first reduction or taper in my ciclosporin anti-rejection drug. That's progress right there when you lay it out like that. If I wanted to balance things up I could mention I'm on hydrocortisone because my adrenal glands are still wonky and thyroxine because my thyroid has packed up altogether. Those are two minor downers in relation to the positive progress I've made.

I go the cinema or theatre every few weeks, eat out at restaurants now and again and get to meet up with friends in public places. I've even been on a bus!

I've got something approaching a normal life or if you prefer approaching the sort of life I used to have before I had the diagnosis. The restrictions or differences I still have are having to avoid anyone with a cold, cough or other infection, eating a relatively clean diet (though I push the boundaries now and then with a take away or a couple of lettuce leaves), avoiding crowded places or limiting my exposure to them at least.

Then there are the more medical impositions on my daily life like the 12 or so tablets I take each day, trips to the clinic every four to six weeks and a twice daily routine of applying a heavy moisturiser to most of my body. (Still at least the last will help me maintain my youthful looks. Stop sniggering at the back there.)

Taken as a whole I'd have to say I don't have much to complain about, and yet I still feel like complaining (though to whom I don't really know), so indulge me in a few moments of railing against the wind as it were. The fact that I am so close to not having any restrictions imposed on me by my condition is ironically what makes it so frustrating. I've got it into my head that once I'm off the ciclosporin and as a result most of my other drugs as well then everything will be better.

The reality of course is that it will not make that much difference in what I can do day to day and it won't make any difference to the usual trials and tribulations of work and home and life in general that everyone faces from time to time. I've mentioned before about trying not to let cancer take over my life but this is the first time I've considered the other side of that coin namely trying not to let it take the blame for things either or using it as an excuse for doing or not doing something.

I often use drafts of this blog and occasional long emails to friends to work things out in my head and then usually I delete the bulk of it and, to steal from mathematical exams, just show the problem and the solution or conclusion I have made but not any of my workings. I'm not going to do that this time as I've always said that I want this blog to be as honest as it can be to help anyone going through similar things see the experiences I have had and draw what comfort and lessons they want from it.

If it all sounds a bit whiney well so be it. Sometimes I can whine as well as the next man.

One thing I can't finish without mentioning is the support I get from my family and friends. You know who you are and I hope you know how much I appreciate you.

T + 620 iPad Pride

2010-05-29T10:47:00.004+01:00

Those of you who know me in person or follow my Twitter/Facebook feeds will probably be aware that I have recently taken delivery of an iPad. So it would hardly come as a surprise to them that I should write a blog about my experiences with it.

Equally it is not a surprise that I have chosen to write this blog entry on said device and I'm doing that in what is probably the natural habitat for an iPad namely a trendy independent coffee shop. In this case it is The Urban Coffee Company in Birmingham.

So what's the big deal about the iPad? Just a big iPod touch, surely. Or just a tablet PC, they've been around for ages. Well to the first point I'd say yes the iPod touch was a great product imagine how much better it would be with a 10inch screen with full crisp graphics. To the second point, well saying it is just a tablet PC is like saying an iMac is just a PC or more specifically just a desktop computer. Technically true but it misses so much of the point.

Say what you like about Apple, and there are many valid criticisms that can be laid at their door, but they care about the design of their products and the end user experience and at the end of the day that is what makes their products so successful. The experience. This isn't just marketing hype, as Stephen Fry has expressed far more eloquently than I can, using an Apple product brings a smile to your face. Things "just work" and using them is much more intuitive than many other computing platforms. The slightly sad thing is that you only seem to get this with Apple products. They shouldn't be the exception it should be the norm to have a piece of technology that feels good to use. To quote St. Stephen again, people shouldn't have to become computer literate, computers should be human literate.

Ok enough of my soapbox. Many people have been asking what is the iPad for? Well for me it represents a convergence of devices. It is for me a portable but highly usable Internet enabled multimedia appliance. What does that mean? Well it is an Internet browser, music player, video player, ebook reader and games platform. With an iPad I don't need to have an iPod, a Sony ebook reader and a net book computer (the fact that I already have all three of those devices says more about my gadget fetish than anything. Hey I don't smoke or drink so allow me this one vice.) As many people have said you prolly won't really understand or "get" what the ipad is about until you have spent half an hour using one.

Other people have asked me do they need an iPad to which my initial flippant reply is that the iPad is not about need it is about desire, passion, lust even. More honestly the answer is prolly no, you don't need an iPad any more than I really "need" an iPod or iPhone but once you have one you will find more and more uses for it and enjoy it more and more. True they are expensive and If I hadn't recently had a windfall from a pension fund being wound up I may not have got one. (Ok that is a lie I would almost definitely have bought one I would just have felt a bit more guilty about spending the money). I just hope that when I retire and am destitute with no pension I can look back on the happy memories I had using my iPad. ;0)

This has been the largest piece of text I have typed on the iPad and it has worked out really well. The touch screen keyboard does feel a little strange at first. One person described it as like typing with frostbite but the autocorrection works really well and I haven't had to correct many typos. The only thing is at present I tend to type looking more at the keypad than at the screen where as normally though not a true touch typist I can look at the screen and not the keys.

Now I am off to the the parade to start this year's Birmingham Pride. It's the first one I have been able to attend for a couple of years thanks to medical stuff so I am looking forward to it even though the weather looks pretty dismal.

T + 614 Give Me Your Money

2010-05-23T19:02:00.003+01:00

Well I finally got the printed copy of my novel Reunion ready.

http://bit.ly/ReunionBlurb

So if you know me and more importantly I know you email address then you might soon receive an email from me that looks like the following. ( Apologies in advance if you receive more than one copy I might have more than one email address for you. )

Don't forget you can also donate via my Just Giving Page, http://www.justgiving.com/SimonStanford.

Subject: Give me your money! (Please)

Hi,

Well, when I say give "me" your money what I actually mean is give Cure Leukaemia your money.

Here's the story (literally).

Summary

What?

Donate money to the charity Cure Leukaemia to help me reach my target of £250.

Why?

It's a very worthy cause.
I've benefited from the research and other projects the charity has funded as part of my treatment for Mantle Cell Lymphoma.
I wrote a book in 30 days. ( No, really. I did.)

How?

Buy a copy of my book from this link http://bit.ly/ReunionBlurb and all the profits (about £2.49, hardback or paperback ) will go to Cure Leukaemia.

Read the book online at the the site here http://www.abctales.com/user/raetsel and then donate whatever you can afford via my Just Giving page here:- http://www.justgiving.com/SimonStanford ( I'll let you into a secret, you don't have to read the book you can just donate and pretend you've read it. There won't be a test on it.)

When?

As soon as possible please. It's just a click away:-

http://bit.ly/ReunionBlurb
http://www.justgiving.com/SimonStanford
http://www.abctales.com/user/raetsel

Detail

The first draft of the book "Reunion" was written in just 30 days from the 1st to 30th November 2009 as part of the National Novel Writing Month (NaNoWriMo) competition. The aim of the competition is to encourage would be writers to stop procrastinating or endlessly fiddling with a sentence here or there and just get on and actually write a whole book.

Subsequent to that first draft of 50,000 words I've made a few corrections to spelling mistakes and continuity errors but by and large the book you can buy at http://bit.ly/ReunionBlurb is pretty much the way it was when I finished it in that last week of November, 2009.

I thought I could use this accomplishment as a means to raise money for a charity very close to my heart (pun intended), Cure Leukaemia.

Although I don't have Leukaemia but instead a related blood cancer called Mantle Cell Lymphoma, the charity funds work that is relevant to all blood related cancers and in particular helps fund the Centre for Clinical Haematology at the Queen Elizabeth Hospital, Birmingham. The doctors, nurses and all other staff at the centre do an amazing job and this is just by small way of saying thank you to them for all the help they've given me.

You can read more about the charity here: http://www.cureleukaemia.co.uk/

You can read more about my treatment for Mantle Cell Lymphoma at my blog here: http://simonstanford.blogspot.com/ ( Click on the "My Story So Far" tab if you want to read about how it all began for me. )

Thanks for reading and please: GIVE ME YOUR MONEY

Regards,

Simon Stanford.
http://bit.ly/ReunionBlurb
http://www.justgiving.com/SimonStanford

T + 605 I'm On the Train

2010-05-14T09:19:00.001+01:00

I'm on the train. Or rather as it appears compulsory to say: “I'M ON THE TRAIN.”

This blog post is being written on the the 10:03 from Birmingham New Street to Edunburgh Waverley. I'm writing it on my trusty EEE PC that served me so well when I was in hospital for my transplant. I'm not sure when I will be actually uploading this post to the web as I don't think I'd get a very good signal with my 3G broadband modem, my iPhone is struggling at times to even get GPRS. I might try to upload it from the hotel. (Yep my Three 3g Modem works fine from the hotel.)

The reason for being on the train to Edinburgh is to have a long weekend break with Gareth to celebrate his birthday, which is today, Thursday 13^th May. I've been to Edinburgh a few times but that was mostly for work many years ago when I was a field service engineer for a CAD company. I've only had one trip to Edinbugh for pleasure and that was for a friend's stag weekend. As you might imagine that didn't encorporate many of the cultural delights on offer in the “Athens of the North” as Auld Reekie is sometimes called.

I do rememeber sitting in the communal kitchen of the hostel we were staying in on the first morning after the night before nursing a colossal hangover and taking an hour to sip a cup of hot water whilst the rest of the party re-animated themselves ready for another day of drinking. ( I'm not sure if I intended to have just hot water or if I couldn't work out in my adled state how to open the jar of nescafe. ) The fact I had a hangover allows me to date this trip to pre-June 2000 as that was when I stopped partaking of the grain or grape.

At one point someone suggested, since were in Edinburgh, we should go look at the castle and I have a memory of a slow walk up a large hill to get to it. Beyond that I can't remember much more though perhaps a visit this time round will stir some recollections.

The only other thing I can bring to mind of that weekend is that the on the second night we got the groom-to-be so drunk that as we moved from pub to pub we would arrive, take off our winter coats and put them in a pile in the corner. We then deposited the stag of honour on top of the coats ( in the recovery position of course, we had a duty of care after all ) and proceeded to consume more alcoholic libations. When it was declared time to leave the pub we would collect our coats and the groom and move on to the next venue. Ah happy days.

I love travelling by train, especially when it is on holiday. It makes the journey much more part of the holiday than if you have to drive or fly I think. Maybe it is because I don't travel by train that often but I always have a little frisson of excitement run through me as we wait on the platform. It made economic sense to come by train as well. Though we only booked the tickets under two weeks ago we got the two return journeys for just over £50. Even in the economical Martha it would have cost us more than that in petrol to drive to Edinburgh and back never mind the costs of parking in the city for 4 days. That £50 does incorporate the 33% discount Gareth gets with his Young Person's Rail Card. ( There is a certain irony to the fact that the card for 16 – 25 year olds is being used to help him celebrate his 26^th birthday, but through clever timing he was able to renew his card so he can use it until March 2011).

Our train journey did not have the best of starts although the train arrived on time. A couple of minutes before its apprach a very helpful member of staff came along the platform to check who had reservations for specific seats and explain whereabouts that particular coach would be. We duly shuffled along to the appointed position only to discover the train carriages were in fact in the completely opposite order and there was much mingling of the crowd as we all moved back through the melee to find the right coach. Having evicted a squatter from our reserved seats ( the electronic display not showing our reservations ) we settled in ready to depart. Despite having booked forward facing seats we subsequenly left New Street going backwards and have continued in this manner as far as Durham as I type this. I suspect we won't be turned round anywhere now. Not that I mind travelling backwards that much but out of preference I like to see where we are going rather than where we have been.

These are minor quibbles however and the journey so far has been very enjoyable. Of course the best thing about travelling on trains is the opportunity it provides for people watching and eavesdropping on conversations. ( Though with some people on mobile phones it is hard not to overhear.)

So far this trip I have heard a very interesting conversation between a group of public health NHS managers on their way to a conference in Leeds. Surprise to say they are not enthused at the prospect of our new ConDem coallition government headed by Oxbridge's answer to Ant & Dec. In this carriage, amongst the students and business men were a very fashionably and seemingy over dressed young couple presumably off to a wedding, though as they got off at York maybe they were going to the races.

Making up what script writers would call “back stories” for my fellow passengers is surely not something I am alone in doing. Some passengers are more intriguing than others though. As I type this there is a young guy seated across the aisle who looks like a student. He is currently sketching in a new notebook ( crisp spine and he is using the 1^st page, move over Sherlock). His arm obscures most of the view but it appears to be a caricature of an old woman in a windswept landscape. On the empty seat beside him is a copy of P G Wodehouse Jeeves stories. I'm not quite sure this tells me, other than confirming that I am a nosey bugger.

We have just passed Newcastle upon Tyne where the train manager changed from Neil to Morag. Hopefully her announcements will be followed by translations into English as the combination of her broad brogue and the poor quality tannoy makes them rather hard to follow.

Only half an hour to go and we will soon be crossing the border ( though unlike the night train I don't think we are bringing the cheque or the postal order. ) I had better sign off and make sure I have my passport ready.

T+582 The Slippery Slope

2010-04-28T17:42:00.004+01:00

I was at the hospital for two clinics today, my usual transplant clinic and the endocrinology or hormone clinic to look at my thyroid problems. This meant that along with samples taken for research I had 14 phials of blood taken. ( As Hancock said, that's very nearly an armful.)

Things have been going well aside from the odd patch of GVHD on the skin so we are at last trying to taper my main anti-rejection drug ciclosporin. From 50mg morning and evening I am going down to 40mg, again morning and evening. This will mean using the liquid form as the capsules only come in 25mg as the smallest dose. This is a bit of a faff with syringes and it tastes horrible but I don't mind, this has been a long time coming so I am more than happy to put up with the minor inconvenience.

I saw my usual haematology consultant today and she told me this will be the last clinic with her as she is moving to another hospital out of the region. She has been really great and I've gotten on well with her so I will miss her but I have, over the last nearly three years, seen most of the other doctors and they have all been very good. It is an excellent team so I'm not worried about transferring to another consultant.

I'm due back at the transplant clinic in six weeks though of course if the GVHD takes advantage of the reduced ciclosporin dose and flares up badly I can just ring up to go and see them.

In endocrinology the consultant increased my levothyroxine dose form 100mcg to 150mcg daily as my thyroid levels were still too low. Hopefully this will help with the energy levels and explains ( in part at least ) the rather large weight gain I've had over the last couple of months. ( It's not the Haribo it's my glands, honest ).

I'll be back to see the endocrinologist in three months' time but will have my thyroid levels checked at transplant clinic in six weeks to be able to get an earlier measure.

A Night At the Opera

Last night I went to see my first ever opera. One of those things I have been meaning to do but never got round to.

I saw Mozart's "The Marriage of Figaro" at the Wolverhampton Grand theatre performed by the English Touring Opera (ETO).

As the performance was with audio captioning I assumed it was to be sung in the original Italian but the ETO always performs in English.

I had a great seat in the stalls just three rows back ( row E but they took two rows out to extend the orchestra pit to fit the full band in. )

I really enjoyed the performance, the singers were really well cast with the Count being tall and imperious and Figaro himself being very Falstaffian. I did find myself referring to the surtitles on the two big plasma screens either side of the proscenium to get all the words but usually only for the soprano parts. Also once you realised they were repeating a lot of phrases you only had to glance at the screens once then you could keep your eyes on the action.

I would definitely go again but I think the trick is to hear the opera beforehand and know the story so you can concentrate more on the performance and enjoy the music.

I have to say I can see why people become such huge opera fans it is a unique form of entertainment.

The plot?

Ah well...

Figaro, a servant of the Count, is due to marry his beloved Susannah who is in turn worried the Count will try to seduce her and re-instate the "droit de seigneur" tradition of being allowed to sleep with any new bride. Meanwhile Rosalina the Countess knows the Count is planning this and that he no longer loves her. She does however have a suitor in the form of the page Cherubino ( a male part but played by a woman ) and who is banished from the court but is hidden by Susannah. Then Dr Bartolo arrives as counsel for Marcelina his old housekeeper who leant Figaro money which if he can't pay back will mean Figaro has to marry Marcelina instead.

After that it starts to get a bit complicated.... ;o)

Eastenders has nothing on this for plot twists. Especially when we have a woman playing a man ( Cherubino ) who disguises himself as a woman at several points.

Quick apology for not providing links in the text of this post for the various references etc. but I'm sure you'll be able to google anything you are not familiar with.

Speaking of which I also learnt a new word from the opera. "Termagant" I was able to work out what it meant from the context but the origins of the word are quite interesting as I'm sure you'll find.

T + 572 Culture Vulture

2010-04-11T17:18:00.003+01:00

All ticking along ok on the medical front at the moment I am pleased to say. My skin has the odd patch of GVHD but very mild and a couple of days of betnovate cream sees it off. At the moment I am trying to lay off treating the patches as they are pretty minor and not spreading or getting redder. I'm hoping the lack of attention will mean the GVHD gets bored and finally stops playing up. ( Yes I know it is not very scientific to characterise GVHD as a petulant toddler).

Meanwhile in the last couple of weeks or so I've had, for me at least, a veritable flurry of days out.

Here are the highlights.

Kick Ass

I saw this film at The Electric Cinema and was really impressed with it. I had only seen a couple of posters about it and wasn't really interested but Gareth was keen to go and I was so glad I went with him. It is probably one of the best films I have seen this year. Funny, clever, thought provoking and with an excellent cast, even with old Horse Face himself, Nicholas Cage. ( This is the first film I've watched all the way through with him in. )

I won't go into the plot, you can go google that easily enough. Suffice it to say if you haven't seen it yet and enjoy clever humour mixed with strong comic book violence with an edge of realism then you'll love this film.

I was so impressed I ordered the graphic novel the film was based on, well actually developed along side as it happens. When I have finished my current book this will be my next read.

Cerys Matthews

I saw Cerys Matthews at the Glee Club which is an excellent, intimate space to see musicians as well as comedians. ( In fact I've been to far more music gigs there than I have comedy gigs). She has a new album out and this was the first date of a UK tour to promote it, but it was really a retrospective of all her work including some songs from her time in Catatonia.

She was accompanied on stage by two guitarists, one of whom, the American Mason Neeley also provided percussion and was hilarious when pronouncing the name of one of Cerys' collaborators on her next album. The great Welsh baritone, Bryn Terfel came out as Bren Tuffle.

The sound mix was excellent and her beautiful, lilting voice came through well. That said it is a tribute to the quality of the production of her albums that her recorded voice is almost as good an experience as her live performance. Almost but not quite.

Cerys also proved a very funny raconteur in between songs to the point she could almost have done a comedy gig at the Glee Club instead.

Les Miserables

I saw this at the Birmingham Hippodrome at a packed Saturday matinee. This is of course a very well known musical based on the work by Victor Hugo. The Glums as it is sometimes flippantly called is a "fully sung" musical by which I mean it is more operatic in nature and there is no spoken dialogue, every word is sung. ( I much prefer this to the bit of acting then "let's everybody burst into song" type of musical. Unless the setting is appropriate as in something like La Cage Au Folles which is totally camp and over the top and based around show business. ).

The whole afternoon, three hours including the interval, was riveting with the set, the orchestra and the performers all coming together create the illusion of 19th Century Paris during the French Revolution brilliantly.

A big surprise was the performance of Gareth Gates as the romantic lead Marius. The power and subtlety of his voice was a real treat. In fact there was a little debate about whether it was actually him as at the start of the performance there was an announcement saying one of the roles would be sung by someone else and we didn't quite catch it but thought it was the role of Marius.

We were quite high up in the circle and although the view was good it wasn't easy to make out people's faces, thus given the strength and tone of his voice I assumed it was someone else. It was only in the last twenty mins or so Gareth ( not that one, "my" Gareth) convinced me it was his namesake performing.

The lead role of Jean Valjean sung by John Owen Jones was excellent and carried the show with his mix of haunting light tenor and moments of real power.

I'd say go see it if you can but apparently the entire run is completely sold out and I'm not surprised.

Garden

A couple of quick garden notes for me.

The first leaves of my potatoes are showing through and my onions are well established leading me to remove the bird netting as the tops are starting to touch the net in places.

I did some weeding and a light watering in view of the couple of days of warm dry weather we have had.

T + 564 Having My Head Examined

2010-04-03T10:40:00.006+01:00

I had my first trip to the transplant clinic in six weeks on 24th March and it was a fairly routine visit. My consultant decided to leave my ciclosporin as it was for the time being but when I return on 28th April she will look at starting to reduce the dose slowly. She said it could take as long as six months or even a year to get completely off it which was a bit longer than I was hoping but better slowly and effectively than too quick and I end up with a more serious outbreak of GVHD.

I had the second round of my childhood vaccinations after seeing the doc. My third and final round will be when I return on 28th April. That day will be a double clinic visit as I will also be seeing my endocrinologist to review my thyroid levels and maybe look at how I can reduce my hydrocortisone tablets and persuade by adrenal glands to take up the slack.

Overall I have been doing pretty well. My energy levels are good most days though mornings are often a bit of a struggle until the tablets have kicked in and my hormones have sorted themselves out. My skin still is in quite poor condition but twice daily applications of a good moisturiser helps and when I get the occasional outbreak of blemishes signalling a bit of GVHD activity two or three days of intensive application of Betnovate steroid cream quietens it all down.

On the 31st March I had a meeting with my line manager and someone from HR to discuss the findings of the company medical advisors' report I had done a while ago. It was all very amenable though I did have to correct the person from HR talking about a "return to work plan" because as I pointed out I have been back at work full time since January 2009, just not in the office every day. I suggested we call it a "return to the office" plan. The plan HR suggested was that I remain on 2 days a week in the office for another three months then increase it to 3 days for a month and review it and if it goes ok then do a month on 4 days and finally a back to full time.

This is of course all subject to how I get on with reducing my ciclosporin and perhaps more importantly my hydrocortisone but it is a reasonable time frame. In fact I am planning to start going back to the office 3 days a week somewhat sooner as I do enjoy being there and I might as well make good use of my newly acquired car.

Meet Martha

Having recently come into a little money by way of a former company pension fund being wound up I decided the time was right to get a new car. I'd had my previous Smart Car, Arthur, for four and a half years and he was starting to get a little expensive to run by way of repairs etc.

Aside from that though I have been very happy with Arthur and even after all that time I still found him fun to drive. Therefore I had a test drive in a new model Smart Car. They have made a lot of improvements and upped the specification of the various models including things like aircon as standard across the range.

I took possession of a silver and red Smart Four Two Passion on 25th March and since she is obviously just Arthur in drag she was named Martha.

Brain Scan

The other day I finally got round to doing something I had been trying to arrange for quite a while. Namely having my head examined. (Not a moment too soon I hear you cry.) This particular examination however was conducted by my friend (and erstwhile work colleague) Christian who is now conducting research for his PhD in Neuropsychology.

I offered to be a participant in one of his studies. ( They used to say a subject in an experiment but now they have gone all PC. ) This involved being set up with 128 electrodes in contact with my scalp to measure the electrical activity in my brain. I then had to conduct a series of tasks involving moving a cursor on the screen by means of a joy stick towards various coloured targets while my brain waves were recorded.

Christian is investigating the involvement of the Posterior Parietal Cortex in the creation of motor plans for target acquisition. I.e. when you are presented with a number of possible objects to reach how does the brain decide which one to get and then instruct the muscles to move towards it. ( The motor plan). That is probably not quite an accurate explanation of what he is doing but I'm sure he'll put me straight if he reads this blog. ( Which he never does ;o)

It was an interesting couple of hours and below is one of the traces for my brain. As Christian says, if you want to look at this way, here are my thoughts captured in a snapshot.

T + 544 I'm so Dizzy....

2010-03-14T13:00:00.007Z

....my head is spinning. However unlike the song lyric it's not a girl making it spin but prolly some sort of sinus infection.

I started working from home on Friday feeling a bit rough but that is not unusual first thing and I put it down the the lack of adrenalin and thyroxine before I have had my morning tablets. As the morning wore on however I started to feel worse and worse, a dizzy sickly headache and lack of energy and by just before lunchtime I had had to retire to my bed. I slept for about three hours and felt a little better afterwards but spent the rest of the day either in bed or on the sofa.

Saturday was a little better initially but then in the mid morning whilst doing some washing I had a real giddy turn. Maybe it was the bending down picking up washing from the basket and putting it in the machine. I retreated to bed and spent a large portion of the day again either in bed or prostrate on the sofa.

Today, Sunday, I am pleased to say I am feeling quite a bit better, just a little below par I would say and perhaps not quite the energy I have had of late. As I said at the top of the post it is prolly all related to a sinus infection but it's not that severe as I don't have the usual symptoms and crucially I'm not running a temperature. Hopefully all will be well by tomorrow or at least continuing to improve.

Penally

Contrast that with this time last week when I was making my way back with Gareth after a fabulous long weekend break at the Penally Abbey Hotel near Tenby. We had a great time being spoiled and pampered at this quiet luxurious country hotel that aims to be rather like a visit to a country house in the Edwardian era. I even took an Agatha Christie novel ( At Bertram's Hotel ) with me to get the right ambience though I'm

pleased to report there was no body in the library, or indeed for that matter a library thoug,h as you can see from the picture slide show below, there was a nice 'drawing room.

Here is a link to a picture slide show. ( Press the space bar to pause the show and click the info button in the top right to see the short comments I have added. )

Bletchley Park

The weekend in Penally came at the end of a very nice week off from work and on the Thursday my Dad and I visited Bletchley Park near Milton Keynes. This country house and estate was taken over just before WW II by the government and became the forerunner to todays GCHQ. Crucially it is where Alan Turing worked on cracking the enigma code and the first semi-programmable computer, Colossus was buit.

It was somewhere I had been meaning to go for ages and it was great to be able to go with my Dad as he could relate to many of the items on display especially in the Home Front exhibition.

We only did about half the exhibits there and I shall definitely be making a return trip to do the rest, not least because my entry ticket acts as a season ticket for free entry for a whole year. If you have toyed with the idea of going then I can heartily recommend it.

Here is a link to a picture slide show. ( Press the space bar to pause the show and click the info button in the top right to see the short comments I have added. )

Garden

Finally a gardening note.

Today with the weather sunny and 11 Deg C. I have planted out my potatoes, 6 Accord (earlies), 8 Maxine (2nd earlies) and 6 Valor (main crop) in 2 trenches 4 in deep 18 inches apart with the tubers spaced at 12 inches.

The bed had been dug in with 50L of organic compost the trenches covered over with another 50L before being given a top dressing of Phostrogen at about 4 scoops per sq yard.

I also planted three raspberry canes 18in apart that I healed in the other week and dressed the soil with phostrogen.

T + 532 The Kiss of the Sun

2010-03-02T17:20:00.003Z

Gardening

The second day of my holiday today and I have been out in the garden. To be honest the purpose of this post is just to act a journal for the garden so I'll know what I did when and compare the results with next with next year.

So today the weather was about 7 deg C and sunny.

I did the following:

Dug middle bed and improved with 3in of organic compost
Planted 21 onion sets 4in apart in three rows 8in apart, covered with bird netting stapled in place.
Dug small bed and improved with 3in of organic compost.
Heeled in 5 raspberry canes to be planted properly in a week to 10 days when small bed has settled.
Checked on potatoes chitting in lounge window since Saturday

Yes who knew an essential garden implement was a stapler.

T + 527 Bumbling Along

2010-02-25T15:26:00.002Z

I am currently into the second week of being cast adrift by my consultant , to coin a phrase, with my next planned visit to see her not until 24th March.

Since my little GVHD outburst the other week things have quietened down though I must admit my scalp and neck have been a bit itchy these last couple of days and this can be a pre-cursor to another attack on the skin. Then again it could be related to the thyroid as the exact level of thyroxine I need is under review with the endocrinologist ( though I don't go to see him until 28th April ).

Overall my energy levels have been pretty good and come the end of the working day I do actually feel like I still have a bit of energy left and have been putting this to good use editing the final chapters of my NaNoWriMo novel, Reunion.

Speaking of which....

NaNoWriMo - Reunion

The completed second edit is now available on line at ABC Tales, here . Of the few people who have read it their comments (written or verbal) have been very encouraging.

Don't forget the Just Giving widget at the top of this post if you would like donate to Cure Leukaemia.

I hope to start working on the printed version this week though I need my in house Graphic design team ( a.k.a Gareth ) to do the cover. I have a few ideas about what I would like on the cover but no graphical ability so I shall leave it to the expert.

Oakwood Primary School

You might have noticed a link on the left hand side of the blog to Oakwood Primary School . This is the project Gareth is currently working on and there are some very good drawings and visualisations on there. Do pop a long and take a look. I think it looks rather good. Certainly a bit more stimulating than the square brick building that was my primary school.

Things have come a long way since the 1930s. ( That was when my school was built by the way not when I actually attended ).

T + 519 Just Give A Little

2010-02-17T15:15:00.003Z

Despite all the various medical bits and pieces I ended up doing, I really enjoyed my week off last week.

With visits to coffee shops and the cinema ( albeit both at quiet times ) it was a little glimpse of what normal people do.

Saturday however wasn't fun at all. I had a lazy start to the day as I was feeling a little tired. I went in to the bathroom for a shower and I had something of a shock when I caught sight of my reflection in the mirror ( well more than usual that is to say).

I had come out in a rash over my face, head, neck and in fact most of my upper body. However this didn't look or feel like a typical outbreak of GVHD it was in much smaller spots that partly emanated from hair follicles. I thought it might be a bout of Folliculitis which I have had before, but it didn't quite look like that either.

I phoned the hospital with a heavy heart as I guessed whatever the cause was chances were prednisolone steroids would be prescribed ( after all, lets face it they do fix virtually everything ) and this just after getting off them after a year of attempts.

I was initially seen at the hospital by the on call registrar who was also not sure if it is was GVHD or not, another theory he suggested was it was an allergic reaction to a drug though I hadn't changed my medications recently. As luck would have it my usual consultant was on duty at the weekend and on the ward so she came to have a look. She described the rash as "punctate" which is a rather splendid description that does exactly what it says on the tin.

She felt it was probably GVHD ( her actual words were "if I were a betting man I would say that it is 80/20 to be GVHD") just presenting in a slightly different form. She recommended I try using Betnovate steroid cream on my body and some less severe hydrocortisone cream for my face. If it didn't clear up in a few days or indeed got worse then I would need to start on a high dose of prednisolone at 60mg though she did say they should be able to cut it down quite quickly once this attack was over.

I went home feeling rather sorry for myself and also physically felt tired and run down with a giddy headache. To have to go back on to steroids tablets having only just got off them would be a real kick in the teeth and as always delays the time I can start reducing my ciclosporin.

I rallied a bit on Sunday, Valentine's day, though by the end I felt pretty tired and rough. I dutifully applied the creams and took Monday off from work as I was tired, headachey and I wanted to rest as much as possible to give my body chance to recover.

By Tuesday there were definite signs the rash was abating, though you could still see the spots they were far less red than on Saturday and certainly not spreading. I also felt much better physically and was able to log on and do a full day's work.

This morning, Wednesday, I had an "emergency" clinic appointment to be assessed as a follow up to my Saturday visit and I was very relieved to hear the consultant confirm my assessment that the outbreak was under control with the creams and I wouldn't have to go back on the tablets. She said to apply to cream to the worst parts for a couple more days and then see how things go.

We agreed to keep to my original next appointment date as it was set last week, ( then six and now five weeks away ) though as a parthian shot she said it was 50/50 that I would end up having to come back before then. Good job she isn't a betting man. :o)

This little episode has been an all too graphic reminder that there are still no certainties on my road to recovery and as ever I must make the most of what I have in the here and now and not set my sites on what I will be able to do however tempting that might be.

Company Quack

The visit to the doctor appointed by the company medical advisor went ok and after confirming some details with my consultant he will basically be telling my employer they just need to be patient and I will get back to being in the office five days a week. Which is what I have been telling them myself of course but they'd rather pay money to hear it from a doctor in some nice private consulting rooms. So be it.

There is a certain irony in the fact that since the computer servers I look after are located near Birmingham Airport I'm actually closer to them when I work from home than when I work from our offices in Ashby de la zouch. Not that I need to visit them as I can access them all over the network or indeed from any Internet connection.

Just Giving & NaNoWriMo

If you log on to this blog directly rather reading via RSS then hopefully you can't have failed to notice a blue "widget" at the top of the post with a "Donate" button. Clicking that will take you to my JustGiving Page allowing you to donate easily to my chosen charity, based out of the Q E Hospital, Cure Leukaemia.

I have set this page up primarily as a place for people who have been enjoying reading my novel I have been editing and publishing in instalments here on ABC Tales. But you can use it to make a donation whether you have been reading my novel or not. Please do consider giving a couple of quid.

As for the Novel itself, Reunion, editing of the chapters has been going well and I have been very encouraged by the reception it has got on the ABC Tales site including 8 of the 10 sections published so far being "Cherry Picked" by the editors of the site as worthy of special note.

I hope to have this draft finished over the next week or two and then I have decided, with one more draft, I will look at making it available as a published book you can purchase and the profits ( about £2.50 per copy ) will also go to Cure Leukaemia. Stay tuned for further details.

T + 514 Live From The Urban Coffee Company

2010-02-12T09:18:00.003Z

Something of an experiment for this blog post because as the title suggests I'm typing this live from the Urban Coffee Company in Edmund Street Birmingham using my iPhone and the free wifi network. I don't usually type anything longer than a text or a tweet on the phone so forgive me if there are any typos.

This has been my week off work and as I mentioned last week I've had a few medical things to do. Tuesday was a CT scan to check the state of my lymph glands and today I am off to see the company medical advisors to discuss my situation. On Wednesday I saw my usual haematology consultant at the transplant clinic.

She was able to look up the result of the previous day's CT scan and I am very pleased to report that it was all clear. The only thing of note was a lymph node of 9mm in size and as the consultant said "I've probably got one of those on my neck." They really only take notice of nodes approaching 20mm. The doc did confide that she hates having to look up results live in front of patients and she has a special face to put on while she reads the report. I can fully understand why.

Even though I didn't have any reason or symptoms even to suggest otherwise it was a relief to get the all clear from the CT scan and confirmation that I am still in complete remission. There was just a few thoughts running through my mind as I sat in the waiting room after all there is a reason they do CT scans.

Aside from that the doc said she wanted to leave everything as is for the next six weeks and then look at a slow taper of my anti-rejection drug ciclosporin. So I guess it will be the summer at the earliest that I can expect to be off the ciclosporin completely and able to resume an almost normal life.

Finally I had the first batch of my childhood vaccinations given at the clinic this is because I will have lost all my antibodies when my bone marrow was destroyed. So I'm having the usual list of tetanus polio etc. Sadly no sugar lumps it's all done with injections these days. I won't be having the MMR vaccine as that is a live vaccine rather than an attenuated or dead one and as you can imagine with a reduced immune system that wouldn't be a good idea.

T + 507 Every Silver Lining has a Cloud

2010-02-05T14:38:00.002Z

Excuse my perverse way of phrasing things but the silver lining in question is that I will now be able to get free prescriptions for life as I found out on Wednesday my low thyroid level is almost definitely not going to recover and I will be on Thyroxine tablets for life.

I went to see the endocrinologist on Wednesday and he went over my current medications and situation in general. He was a very nice chap and had a very apposite name but as I have striven to keep this blog anonymous as far as the medical staff and fellow patients are concerned that will have to remain unstated here.

The doc said my thyroid levels were low and asked if I had got dry skin and how much weight I had put on. ( See I told you it was my glands all along ). I said I was a few pounds over my normal level of overweightness and it had been difficult to shift. He has upped my dose of Thyroxine from 50microgrammes to 100 a day and he said most people with thyroid problems usually need at least 100 microgrames.

I asked what had caused the under-active thyroid and he said the most common cause in bone marrow transplant patients was radiotherapy treatment but I had not had that. He said however they did see quite a few cases in people that have unrelated donors and whilst it was not certain, one theory is that it comes from the donor having a disease of the thyroid that gets transmitted.

So if you reading this and by some happenstance you are a 40 year old cockeney ( or German as I never did get to the bottom of where my donor came from ) and you have put on a bit of weight recently, feel the cold a lot, are tired and have dry skin the pop along to your GP and ask him to check your thyroid.

Anyway the doc also said that it was very unlikely my thyroid would recover on its own and so I would be on thyroxine tablets for the rest of my life. This is not too bad as the drugs have no real side effects and once the dose is correct I should really feel the benefit.

I get a 5 year exemption from prescription charges as a cancer patient but now I'll get them free for life or about 60 years if I have anything to do with it. ;0) (Look out for blog posting T + 22,407 )

The other thing the endocrinologist did was to stop my fludrocortisone steroid as I don't need this anymore . The hydrocortisone that supports my adrenal glands is a different matter and he said it can take one or even two years to get people off that and a few people never are able to stop it. He wants to get my thyroid levels right first though.

As I have mentioned previously, the level of hydrocortisone I am on doesn't have any immunosuppressive effects so at least that doesn't affect my reduction of ciclosporin.

My next appointment with him is in two months time.

I am on holiday next week and looking forward to the break from work though it will be a bit of a busman's holiday as Tuesday I have my CT Scan, Wednesday is my normal Transplant Clinic and Friday I am seeing the company medical advisor in some posh consulting room in Edgbaston.

In other news the flat has now been completely re-carpeted. It has been quite an upheaval moving all the furniture about and I realised the other day that with the exception of stuff in the kitchen we have effectively moved house over the last two weeks. The carpets look really good though and I look forward to getting the flat straight again.

I've also completed the re-drafting of a couple more chapters of my NaNoWriMo 2009 novel, "Reunion" which you can read at http://www.abctales.com/set/raetsel/reunion

T + 500 Two Mini-Milestones

2010-01-29T18:00:00.005Z

As the title suggest, this post is about two minor milestones, one health related and one not.

First the health stuff.

T + 500

Yes I have reached five hundred days post-transplant and since we like big round numbers like that I guess it is worth mentioning. That equates to one year four months and a few days which sounds far less interesting.

Since stopping my prednisolone and related drugs things have been ok. I've have a few dodgy days when my energy has been low or I have felt nauseous but they seem to be less frequent now. They did seem to be time related always occurring around about 11:00 am .

Whether this was a certain time after my morning drugs had been digested and metabolised or part of some other biological cycle I am not sure. This is something I can mention when I go see the endocrinologist or hormone doctor as I have now had my appointment for that clinic come through. It's Wednesday 3rd Feb. This clashed with my appointment with the company medical advisors so I have moved that appointment to the 8th of Feb. I know where my priorities lie.

As an aside I have noticed that there are some words that you only really learn how to spell correctly when you have occasion to use them for real, as it were. It took me a while to get that endocrinologist is spelt as it is. In the run up to the year 2000 and the Y2K bug I learnt how to spell millennium ( two "els" and to "ens" ) and regular readers will now that in 2008 I unfortunately had to learn a mnemonic to help me spell diarrhoea.

My skin has been a bit dry and flaky and I am forever vigilant for my GVHD rash but so far the E45 moisturiser applied twice a day is helping a lot.

A Year on Twitter

The 26th January 2009 saw my first real tweet. I say real because I did use twitter briefly a few months before but never really got into it. For reasons lost in the mists of last year @andyhollyhead @gdsr and I ( @simonstanford ) started to make more use of twitter. Although twitter was already quite popular it has since become massively more mainstream and it uses have been extended and expanded.

I've mentioned twitter a few times before but for an overview of the micro-blogging service have a look here.

I'd like to take a few moments to talk about twitter and what it means to me and how I use it.

On my Mac I use an application called Tweetdeck that allows me to group the people I follow into different categories and lay them out in columns so they are easier to read and I'm going to use the groupings I have on that as a means to discuss my twitter use.

Personal

This is the primary reason I use twitter. In this group are all the people I know and have met personally. Twitter updates to and from this group are in one sense just ways to be able to update all my friends and acquaintances about what I am doing. A bit like sending texts to everyone in my contacts list but much easier ( and cheaper ) to do.

These tweets can be banal like what I cooked for my tea ( though sometimes these have links to recipes other people may like ) or more "important" ( and I use the term advisedly ) about my current health status. For this latter use I really am using twitter for micro-blogs as a quick update before I can get to write a long blog like this.

Seeing updates from people I know throughout the day gives me a warm fuzzy feeling ( unless they have bad news but even then it is somehow a positive connection ) and when working from home , as I do 3 days a week, it helps provide a bit of social interaction that would otherwise be provided by colleagues round the metaphorical or physical water cooler.

There are a few people in this category with whom I have otherwise lost touch and this has been a great way to get/keep the friendship fires stoked until I can see them face to face when I am back in full circulation.

Related to that using twitter has also re-ignited my use of facebook as I am able to update my facebook status from tweets and so this has led to me having more interaction on facebook than I used to.

Celebs

Ah celebrities. What is it that makes a lot of us fascinated by celebrities and keen to know what goes on in their lives? I guess celebrities are to some extent people we admire and by finding out about them we feel more connected to them. It makes them more real and maybe feeds some hidden sense that we are by the reflected light of their brilliance made a little more special.

Of course there are celebs and there are Celebs and of course I only follow people who are actually worthy of being Celebs. Well of course I would say that wouldn't I. There can be a certain amount of snobbery about celebrity and I am as guilty of that as the next person.

I like to think I only follow celebs who are talented and entertaining. Such as the King of Twitter, @stephenfry , his minstrel in chief @MitchBenn , the matchless @simonmayo and for a less well known example @boburnham a brilliant young comedy song writer/performer.

In fact add in @alancarr and @wittertainment ( the joint Mark Kermode & Simon Mayo films tweets ) and those are all the celebrities I follow.

The way celebrities use twitter varies a lot and Stephen Fry has written and spoken a lot about this. Stephen has over one million followers whom he can speak to directly. For publicity purposes this can be enormously influential but he at least uses his power with responsibility. If he backs a cause or takes issue with something thousands upon thousands of people will do the same.

Some celebs, whom I no longer follow, used twitter just as an extension of their public personas. They are, to use the showbiz phrase "always on", using twitter just to make jokes and witticisms and telling you very little about the real them. These people rapidly become rather boring and to me it is part of the bargain: I read your tweets about your latest gig, book, charity cause etc. in exchange for personal glimpses into your life now and then.

Other

This is an interesting gallimaufry of tweeters (guess who watches QI ). They are neither famous nor do I know them personally. They can be people that other people follow or people that provide useful information such as the owner of the Electric Cinema. Some are just interesting people who have followed me and I have followed in return and subsequently found them to be really good to follow.

So there you have my life in twitter and the reasons I use it. It is something you either "get" or you don't and it took me a few goes to get it.

Now as for Google Wave what's that all about.....?

T + 496 Chapters One & Two

2010-01-25T17:35:00.001Z

A busy weekend clearing the study so we can have the carpet laid meant I didn't get chance to redraft anything of my Novel but this evening I have managed to get chapters one and two online:-

http://www.abctales.com/set/raetsel/reunion

T + 493 Reunion - The Prologue

2010-01-22T08:55:00.002Z

"Reunion" is the title of the first draft of the novel I wrote over 30 days in November 2009 as part of National Novel Writing Month, NaNoWriMo

I have now got round to starting the process of re-drafting the story and putting it up online. This post is to point those of you you are interested to the site where you can read it.

Namely http://www.abctales.com/set/raetsel/reunion

Friday 22nd January - The Prologue

I finally got around to taking another look at the novel I wrote in November for NaNoWriMo.

I've done a 2nd draft of the prologue and this now available at http://www.abctales.com/story/raetsel/reunion-prologue

I was pleasantly surprised to find the prologue was in reasonably good shape especially given it was actually one of the last things to be written that month so I was deep into "let's get this done" frame of mind.

I'm flattered that the piece has been "cherry picked" by the editors of the site and that someone has left some helpful and encouraging comments. It has given me a bit of re-assurance that the project of re-drafting the novel is worth pursuing.

I'll be posting the next chapter or two as I get to them and then see how I feel about it after that.

You'll be able to see all the chapters at http://www.abctales.com/set/raetsel/reunion and there will be a tab page on this site that has that link for quick access.

T + 491 Luke Warm Turkey

2010-01-20T18:07:00.003Z

I went to the transplant clinic this morning and saw my main consultant whom I haven't seen for a few visits now.

I went over how I had been feeling the last couple of weeks and she thought I might have had a minor infection but we would just keep an eye on it for now.

Having gone the previous two weeks without any prednisolone steroid she decided it was now ok to come off the various supporting tablets related to the extra immunosuppression that the prednisolone caused.

So I am to stop taking the following meds:-

Itraconazole - An Antifungal liquid

Alendronic Acid - To stop osteoporosis from the prednisolone

Folic Acid - An blood making "supplement" , as my levels are fine now

Aciclovir - An anti-viral for cold sores and shingles.

This means I am still on:-

Ciclosporin - My main anti-rejection / immunosuppression drug. The dose of this has been doubled to 50mg twice a day because the itraconazole I was taking interacts with ciclosporin meaning you don't need as much when you are on it.

Penicillin - Antibiotic

Septrin - Antibiotic

Amlodipine - To lower the blood pressure that is raised by taking ciclosporin

Fludrocortisone - Steroid to support my adrenal glands

Hydrocortisone - Steroid to support my adrenal glands

Levothryoxine - To support my thyroid gland

It is great to be able to stop taking so many drugs but also a little bit scary.

Thirty percent of transplant patients develop shingles and the aciclovir was helping to keep that at bay to some extent so that is one more thing to watch out for. If I get any tingling or nerve pain or blisters then I have to let the hospital know straight away so I can have high dose aciclovir treatment.

As you might know shingles can be brought on by stress so this is something I will be even more cognisant of now.

The other slight worry is the level of ciclosporin I am on. It is a bit of guess work in relation to how much I need now as I come off the itraconazole. The last time we did this ( several months ago ) my levels went too low and my GVHD flared back up.

Mind you my GVHD was much more aggressive then that it seems to have been of late so hopefully that will be less of a risk this time.

I certainly won't miss the itraconazole as it is pretty nasty stuff and caused me nausea quite often.

I need to keep an eye for my GVHD skin rash and should use my E45 moisturiser regularly to keep my skin hydrated, or in the words of one of the shavings adverts on TV, refuel my skin. ( Perish the thought a real man would use moisturiser). I also have the betnovate steroid cream to deal with any minor outbreaks of rash.

I'm due to go back in three weeks but of course I can call anytime if something untoward happens. I am also going to have an appointment with the endocrinologist or hormone doctor to review my adrenal and thyroid function.

Finally the doc is going to book me in for another CT scan to check I am still in remission as it has been a year since my last one. Not that there is anything to suggest that I am not still in remission but obviously this allow a further check.

The doc told me she saw a patient for a regular check up who had her transplant 17 years ago ( or T + 6205 ) and was still going strong.

I wonder if I will still be writing this blog then? Mind you I'm sure we will all be driving round in hover cars and be directly wired into the Internet via cybernetic implants by then. :o)

T + 485 Call Me Sisyphus

2010-01-14T14:05:00.002Z

After my clinic visit last week I woke with eager anticipation on the Thursday morning and took my first Thyroxine tablet and didn't take any prednisolone

I have to say the results were initially less than spectacular, in fact for the next three or four days I woke each morning with a sick giddy headache that didn't go until late afternoon and was still quite tired at the end of the day. I wasn't sure if it was the new tablet, the lack of the old one or the fact that my sinuses were playing up a bit.

I started to wake up with one nostril completely blocked. I have had bouts of sinusitis before but it didn't quite feel like that as I usually have a pain in my cheek bones and lumpy green snot (if you will forgive the vernacular).

Anyway the headaches stopped a couple of days ago and though I am still a little "muzzy" headed first thing I feel much better.

I also am not so sensitive to the cold and have more energy. I've been able to cope with wearing only one fleece though not yet brave enough to give up the long johns.

Invigorated with a new lease of energy and slightly chastened by the fact my 85 year old neighbour has cleared snow off our shared paths and drive twice, I spent my lunchtime yesterday clearing the snow myself. Not something I could have considered even a couple of days ago.

I enjoyed having some physical exercise even if I did wonder if it would prove to be a sisyphean task.

My back is a little sore today not helped by a two hour journey in to work because the M42 was blocked by an accident.

However I was pleased to open the curtains first thing and see my shiny clean path unmolested by snowflakes.

T + 478 Snow Day = P Day

2010-01-07T09:22:00.003Z

That's P for prednisolone free day. Yesterday I harnessed up the huskies and made it in to the transplant clinic. As you might expect it was fairly quiet and I was seen quicker than usual.

The registrar I saw went through the usual checks about how I was doing and asked how I felt about stopping the prednisolone altogether and I said I was ready to give it a go. We then discussed how if this works ok then we can look at finally starting a ciclosporin taper. Very encouraging but there is many slip twixt cup and lip as they say so one step at a time.

My adrenal glands are supported by hydrocortisone and fludrocortisone so I shouldn't have the withdrawal symptoms of extreme fatigue this time as I stop the prednisolone. The only thing to watch out for now is whether my GVHD flares up again.

I asked about how I would get off those supporting steroids and the doc said she would refer me to the endocrinologist as though they are easy to get people on to it is harder and more specialised getting people off them. I asked if these were having any immunosuppressive effects but she explained the levels I was getting from these two steroids are just to get me to a level that everyone should have in their system if they are healthy. It is the lack of them that gives me the fatigue. That means I don't have to worry about them suppressing my immune system further it's now just the ciclosporin doing that.

My haemoglobin (Hb) was up at 12 which is back to the highest level it has been since my transplant, so the little anaemic dip I had a while back has disappeared all by itself, however the size of my red blood cells is still rather large indicating what is known as megaloblastic anaemia. However for the time being since my Hb has recovered and my B12 levels were ok the doc is just going to keep an eye on it though she might test the iron levels in the blood as I guess it is possible have a normal Hb but not actually have enough iron in the haemoglobin. (Break out the spinach.)

When I went to see the pharmacist in the clinic to go over the drugs I needed he said he'd had an email from one of the other doctors in the team who had reviewed my blood results and decided my thyroid levels were a bit low and so prescribed me some thyroxin to boost the levels. I guess the email hadn't got to the registrar I saw so I'm glad the pharmacist was on the ball. The feelings of tiredness and sensitivity to cold can be symptomatic of an under-active thyroid but the last time it was tested it was ok but clearly they have been keeping an eye on it.

The pharmacist said the impact of the thyroxin should be pretty immediate and considerable. "A new lease of life" he said is how patients describe it. I guess I have become slightly habituated to feeling knackered by the end of the day so it will be interesting to see how I feel now I am on the thyroxin. It should help with the diet too.

The pharmacist also said that as drugs go it is largely side effect free and reading the leaflet that came with the tablets that seems to be the case as long as the dose is not too high. I'm starting on 50 microgrammes which is the lowest effective dose so it shouldn't be a problem.

These medical leaflets do make me smile sometimes in the casual way they describe things. In the case of this one it talks about the symptoms of overdose so you can recognise it:-

Mild to Moderate Overdose: fever, angina,racing heart, irregular heart beats....
Severe Overdose: Thyroid crisis including irregular heart beat, heart failure, coma and death.

I like the way death is described as a symptom, seems a bit academic at that point really.

T + 473 Happy New Year

2010-01-02T16:26:00.003Z

Happy New Year indeed to you all. 2010 well I never.

No change on the medical front in the last couple of days though the bouts of nausea and tiredness that I mentioned last time have not been as bad. Maybe my ciclosporin levels have adjusted back down. Now for related but non-medical items.

Housekeeping

As you will see if you read this via the web page and not an RSS feed, I have taken down the Xmas decorations and gone back to my usual layout. Maybe I will look for another template style but I do rather like this one and it is nice a clear for reading on things like the iPhone so any replacement will have to be just as good.

Looking Back

I was looking back over some of my posts from this time last year and into early 2009 and there are a couple of telling sentences in there. They both relate to being on steroids and how this will delay my immune system recovery and hence returning to a normal life. You can use the archive list at the side of the blog if you want to read them for yourself.

In one I talk about delaying things by a couple of weeks and the other suggests it'll be March or April before I am back in full circulation. Well I really didn't expect to still be on steroids and ciclosporin a year later and whilst it is true I didn't say which March or April I meant I wasn't thinking 2010 at the time either.

That said, maybe March or April this year will be a reasonable goal to be off the anti-rejection drugs and have my immune system returning to normal. I'm on my lowest level of steroids and tolerating it well ( albeit with help for my adrenals from two other steroids ) but even so I'm not counting my chickens this time. There have been too many false dawns in the past year so I'll just play it by ear. Though if I am writing a similar blog entry to this next year and still on ciclosporin and/or steroids then I will be very disappointed.

Overall on the medical front it has been pretty good, a couple of minor infections and only one short hospitalisation. About 40 days off sick in the year which seems a lot, but better than the close to 120 I took in the previous nine months March - December 2008.

Looking back at other things that happened in the year it was May that I persuaded my consultant to relax things a bit on my purdah and I started back in the office two days a week which has been very nice to have the extra human contact during the day. If the office wasn't so far away and only accessible by car I would probably try and do a bit more but as I struggle to get going in the morning especially until the steroids have kicked in I can only manage a couple of 6 a.m. starts a week at the moment.

I was also able to have the occasional trip to the cinema and restaurant. For the most part I have chosen the excellent Electric Cinema in Birmingham which is either fairly quiet or where I can have a sofa seat with Gareth and keep the unwashed masses at bay. The alternative has been Gold Class tickets at Star City where you get big electrically adjustable armchairs that are well spaced out.

I've been to a couple of concerts as well though sadly couldn't go to some because they were standing only and I didn't want to risk things bumping into sweaty Herberts in the "mosh pit".

One of the other highlights has been getting the garden into shape to grow my own vegetables. This started as a little pipe dream when I was staying at Mom and Dad's after recovering from a bout of chemo and whilst lying bed I got to thinking how nice it would be to go out to the garden and pull some spuds and few other veg to bring in for tea. Well we are all set for this growing season, just need to weed the beds and work in some compost.

Late in the year the completion of my novel, Reunion as part of the National Novel Writing Month (NaNoWriMo) competition meant a lot to me and showed me what I can accomplish with a bit of grit and determination and more importantly regular application of myself to a specific task.

Looking Forward

On the medical front it is really the same goal as it was for last year, namely get my immune system back to normal. From that flows everything else really and I should be left on just one antibiotic twice a day to help my spleen which will probably remain under-active as far as its role in my immune system is concerned. (Otherwise known as the reticuloendothelial system for the medically minded. Don't you just love these complicated terms?)

My little milestone for this is getting back to going swimming again which, despite the chlorinated pools, is something you can really only safely do with a fully functioning immune system.

The garden as I mentioned at the end of the "looking back" section will be a major focus for outdoor activity in 2010 and I look forward to starting seedlings on the window cill and transferring them out to the beds. If I can provide some of the veg for this year's Christmas dinner then that would be an achievement even it is a single sprout or parsnip.

I want to build on my NaNoWriMo experience and find forty-five minutes most days and a bit longer at weekends to do something "improving" as the Victorians would probably call it. Initially this will be editing the novel I wrote for NaNoWrimo and giving it a second draft. As I've mentioned previously this will just be correcting typos and removing major inconsistencies. What I do with it then will depend how I feel about it once I have appraised it in the cold light of day and not the white heat of the competition in November.

Aside from that I'd like to spend some time having a concentrated month or two on other projects but I'm not sure what they will be. I'd like to get back into learning Russian again, though on my own at the moment though maybe I can go back to a class by September.

I also want to get back to a regular reading habit of at least half an hour a day. I love reading and find it an immense source of comfort and mental nourishment but, not unreasonably, during NaNoWriMo I got out of the habit and I find it is something I have to make a bit of effort to get into as the lure of television is all too great.

The foregoing are as close as I am going to get to New Year's resolutions but let us consider them more as hopes and aspirations than goals and targets. After all we never know what is round the corner do we? And a good job too I reckon.

T + 470 Happy Twixmas

2009-12-30T16:08:00.003Z

Happy Twixmas to all my readers. Twixmas of course being the official name for that weird twilight period between Christmas and New Year.

I had a very nice Christmas at home with Mom and Dad and observed all the usual Stanford family traditions. This year I was also able to go see my Brother and his family in the morning of Christmas day as they were all healthy this time.

As far as medical stuff is going, things are ticking along nicely. I've not had any occurrence of GVHD and the 2.5mg of prednisolone steroid every other day is not causing any major problems as far as my energy levels. The only thing I have noticed is a bit of a bout of nausea, tiredness and general yukiness about 2 hours after I have had my morning pills.

It passes after about 15 minutes so I just have to sit quietly and wait it out for the most part. I'll mention it to the doc when I go next Wednesday ( 6th Jan ) but I suspect my ciclosporin levels might be just a bit high and causing this reaction after my morning dose.

I logged on to work this morning for the first time since the start of my Christmas break and I'll be working a half-day tomorrow as well. Then I am off until Monday the 4th January.

Oh and just for a bit of fun, if you read this via the web and not an RSS feed you'll see I have a "guest columnist" offering words of wisdom on the site, just over the holiday period.

Now to promote a rather good podcast I have been listening to for a while...

Escape Pod

Escape Pod is a weekly podcast that is a reading of a Science Fiction story. I came across it a few months ago after seeing my Dad had subscribed to it when he saw it featured on the iTunes store.

I can't praise this podcast enough. If you like science fiction then check the website http://escapepod.org or search for "escape pod" on iTunes.

The stories are really well read and for the most part the audio quality is very good. ( Just the Xmas day issue had poor quality but we'll let them off that as they were probably busy with other stuff like eating turkey and getting drunk ).

The stories themselves have been really engaging and only one of the couple of dozen I have listened to has been "not my cup of tea".

Check it out.

They also have sister podcasts Pseudo Pod for horror and Castle Pod for fantasy. I've listened to a couple of the fantasy ones and they are equally good. I just don't have time to fit in listening to them on a regular basis along with all the other podcasts I have. Can't vouch for the horror stories on Pseudo Pod because as you may know "I don't do scary."

T + 457 Deck the Blogs...

2009-12-18T14:18:00.002Z

As you can see I've put the Christmas Decorations up on the blog.....

It's been another tough week this week and I've been in to the office everyday except Wednesday. This has been a special occasion as we have had some visitors from our outsourcers from India to do a Knowledge Transfer for oracle that has required me to be present in the office to assist them.

I've coped but I've been in bed by about 20:30 most night and asleep by 21:00

Wednesday I went to the transplant clinic and saw one of the registrars. My B12 and other tests have come back and they are all fine which is good news on the one hand but means the cause of my low haemoglobin remains a bit of a mystery. However the level was up to 11.3 this week so as it is going in the right direction the doc was happy to just keep it under observation, ( known in medical world as MICO, masterly inactivity and cat-like observation ).

We decided to keep me on the same level of prednisolone of 2.5mg every other day rather than try a further reduction and disrupt things over Christmas but things are going well in that direction so whenI go back on January the 6th I might have my very own epiphany and finally get off the pred.

Mommy Dearest

Not Joan Crawford, but my own mom. I am pleased to report she came out of hospital after just over a week and she is making a good recovery at home.

There's still a way to full rehabilitation as it were but everyone is really pleased with how she is doing.

We are all trying to make Christmas as stress free as possible for all concerned and I am looking forward to the festivities.

Avatar

Yesterday I went to the IMAX cinema at Millennium Point in Birmingham to see the latest blockbuster Avatar in 3d and a full 70mm IMAX print.

The opening scenes and initial impact of 3D is very impressive but after that has worn off it comes down to the basics of story telling and there I am afraid it is all rather predictable.

The plot has variously been summarised by others as "Smurfahontas" or "Dances with Smurfs" and to that I would add my own as "A Smurf called Horse". ( The smurf references all relate to the fact the alien, Na'vi people, are all a Smurf shade of blue ).

It is very pretty to look at and all the night time bio-luminescence effects in the forest are impressive but you get the impression they only did those because they could.

There are a few "Basil Exposition" moments where someone says something and you think, "hmm I wonder if that will be important later" and sure it enough it is.

There are some nice ideas and the overall concept is good ( see elsewhere for formal plot summaries ) but, as I say, the main problem is the predictability.

It is a great technical feat, but the animation and 3D effects can't make up for a poorly executed story.

I wouldn't recommend seeing this film unless you want the 3D spectacle (pun intended). on a regular 2D screen I would wait for the DVD to come out but maybe on blu-ray just to get some IMAX effect.

T + 447 The Other Side of the Fence

2009-12-07T21:07:00.003Z

Sorry for the delay in updating but I do have a good excuse as you will see...

Last Wednesday I had a clinic appointment and it was pretty routine. I saw one of the registrars who reviewed my results but annoyingly my B12 test from last time was not on the system so we had to repeat it which meant being stabbed a second time.

My prednisolone (a.k.a pred) is now down to 2.5mg every other day and so far I've not noticed any ill effects from that so that is encouraging. I might actually get off the damn things this time. Then there is the issue of getting me off the other two steroids I have to support me getting off the pred but one step at a time.

My haemoglobin remains lowish but stable at 10.3 and until we get the B12 result and a couple of other tests back we won't know exactly the reason for that, however I am pleased to say that although it is low I haven't so far felt the effects of fatigue at even light exertion that I sometimes get.

I'm back in the clinic in two weeks.

The Other Side of the Fence

Whilst I was at the clinic I got a call from my Dad to say he was about to go in the ambulance with my mom to hospital. She had been poorly for a while and the GP had decided it was best she go into the hospital.

I won't go into the details other than to say she has been very poorly but is making good progress in her recovery.

It was very hard seeing her in hospital and it gave me a little taste of what other people have had to go through seeing me. In some ways it is worse than being in the bed yourself.

There are a couple of differences, for the most part my admissions were all planned and expected where as this was an emergency and for a couple of days we didn't know what was wrong.

Secondly, whilst I wouldn't say I enjoy being in hospital it doesn't bother me too much especially when I am feeling reasonably ok. My Mom however hates hospitals and anything medical so that makes it tough to see her and know what she is going through.

But she is coping and I am very proud of how she is dealing with it all. Keep up the good work Mom.

T+436 Winner, Winner, Chicken Dinner!

2009-11-26T17:35:00.005Z

I had my flu jabs on Monday and apart from a slight residual tenderness on the top of my left arm ( swine flu jab ) I don't have any other effects from the jab. The first couple of hours after the jabs my right arm ( conventional flu jab) ached a bit but that passed off .

Whether this is a good thing or a bad thing and means I have not made any antibodies I am not sure but either way I will not be changing my behaviour in terms of contact with people who have colds , coughs etc.

Gareth had his jabs and had a more noticeable tenderness on his arms, to the point where he could not sleep on the one side ( swine flu again ) so hopefully he is fully protected.

Aside from that things are going ok and I'm down to 2.5mg prednisone steroid a day without any noticeable increase in tiredness or the GVHD coming back.

Just as well as I have needed my energy to make the time to finish writing the first draft of my novel.....

NaNoWriMo Winner

At just past 13:30 today I was officially verified by NaNoWriMo.org as a winner. The first draft of my novel is finished before the deadline of the 30th November and ended up at 50,214 words.

For that I get a nice certificate, the winners "web badge" shown above, the chance to buy a limited edition T shirt with the same design, (duly ordered) and a lovely warm glow inside.

I have to say I am feeling really proud of myself at the moment. It has been quite a challenge but I have been pleased with being able to do it and still maintain a relatively normal routine of work and household chores.

What's that? Oh you want to know where you can read the novel? Well at the moment it is in no fit state to be read by anyone. It is littered with typos and more than a few continuity errors so at the very least it needs a second draft just to remove those. I probably won't start that process until the New Year. I need to think about Christmas for now and a break from the text will also help so I can come back to it with a fresh perspective.

After that I'll see if I want to take it further and re-draft it more fully possibly with a view to vanity publishing it via a site like lulu.com , then you can all buy a copy ;o)

I will however probably post a chapter or two up online by way of a teaser and to say a feeble sort of thanks to everyone who has wished me well in my venture and cheered me on via twitter, facebook etc.

New iMac

As if in celebration of completing my novel my new iMac was delivered today and is currently warming up and acclimatising in the lounge.

My current computer is called Mini and so this new one will be christened Maxi as she is quite a size, but big is beautiful as you can see here http://img159.yfrog.com/i/6la.jpg/

I haven't told Mini yet that she is going to have a new home living at Gareth's mom's and I'll need to transfer my data over from Mini to Maxi.

Luckily I booked Monday 30th November off work which was either to allow for a frantic scramble to finish NaNoWriMo or for sorting out Maxi.

So that is my weekend taken care of. :o)

T + 428 Keep Working the Jab (PG)

2009-11-18T19:30:00.007Z

Rated PG for pictures of warts on my.......toe.

I went to the transplant clinic this morning and was seen by the same consultant as last time. Overall things were fairly routine and we are going to reduce my prednisone steroid dose from 5mg one day and 2.5mg the next to just 2.5mg every day.

I've been here before, briefly, but at the time I didn't have the extra support from the hydrocortisone and fludrocortisone so my adrenals crashed and burned and I was in a bit of a state ( plus I then got a viral infection of some kind. ) Hopefully this time round I should keep reasonable energy levels as I taper down my steroid dose.

I mentioned in passing that I had got a wart or verruca on my big toe as I wanted to check if it was ok to use over the counter remedies to try and get rid of it. The doc said this was very common in transplant patients. Verrucas are caused by a virus, we many of us get them as kids and then we develop antibodies and probably never see them again. However my immune system needs to learn all about them again. He did say some people get some quite "florid" infections of them. ( As an aside that is a lovely multi-purpose use of the word "florid" which my dictionary application defines as :-

1 having a red or flushed complexion : a stout man with a florid face.2 elaborately or excessively intricate or complicated : florid operatic-style music was out.3(of language) using unusual words or complicated rhetorical constructions : the florid prose of the nineteenth century.4 Medicine (of a disease or its manifestations) occurring in a fully developed form : florid symptoms of psychiatric disorder.

He said I was ok to use over the counter-meds but that they can take ages to get rid off. It's been a while since we have had any gruesome pics so I knew you'd appreciate seeing my big toe.
At least I'm not going swimming so I don't have to wear those strange little socks you used to have to wear as a kid. They now seem remarkably prescient forerunners of the modern sneaker-sock, back then they were weird now they are fashionable albeit for a different purpose.
It does sometimes feel like I end up treating these consultations like a session with my GP but I have learnt that there can be all sorts of things that might seem irrelevant, unrelated or unaffected by my treatment that actually do need to be checked. The use of over the counter medicines is one of them.
Last time I saw the doc I had some problems with shoulder and elbow twinges but I am pleased to report they have died down now.
My blood counts were basically ok though my haemoglobin had fallen to 10.4 from just under 12 last time. The doc said it can do that from time to time and indeed this had happened with me over the last few months even though I'd not needed a transplant since March. I certainly haven't been feeling too bad and have been able to go for walks at lunchtime etc. so hopefully its not too serious and the trend reverses. It is something they will keep an eye on over the coming weeks.
He then said that my red cells had been getting bigger over the last few tests. A little puzzled at his wording of cells getting bigger when my count was dropping I asked him what he meant by bigger. Turns out he meant exactly what it says on the tin. My red cells are getting physically bigger in volume. One of the measurements they do is the average red cell volume and this has been getting bigger. This is actually a sign of immature red cells and could be caused by breaking them down too quickly or having a shortage of vitamin B12.

The effects of a lack of vitamin B12 are sometimes known as pernicious anaemia and can be caused either by a lack of B12 in the diet or the inability to take up and process B12 caused by a lack of "intrinsic factor" in the gut. B12 is found in eggs, meat and especially liver. It is also found in Marmite which might go some way to explaining a recent phenomena I have experienced. More of which anon.

The doc ordered a blood test to check for B12 levels and a couple of other things and I'll get the results when I go back in 2 weeks' time.

The doc was also able to give me the haematology department's official line on swine flu and regular flu vaccinations. Namely a letter is being sent to all patients and I should get the jabs ( though they may not work because my immune system is depressed ) and any "household contacts" should get the jab too. With that in mind I am getting my jabs on Monday and Gareth is getting his tomorrow.

So, the Marmite thing....well I have always been in the "I hate marmite camp" however the other day I was "persuaded" to try first a Marmite flavoured crisp and then some of the actual "evil" stuff itself. Turns out I now like Marmite. At the time I jokingly put it down to some weird effect of my donor's immune system or maybe my suppressed immune system couldn't raise a response against the "poison".

However Marmite is a good source of B12 so I just wonder if my body somehow knows what it needs, bit like pregnant women supposedly do with cravings. (Despite appearances to the contrary, by the way, I am pretty sure I am not pregnant ).

Liver is also a good source of B12 so it is a great excuse to have liver, bacon and onions for dinner one evening.

T + 422 Off by one

2009-11-12T18:00:00.002Z

Just a quick health bulletin. This week has been pretty much like the last three I am pleased to say. I've been going in to the office twice a week and working from home the rest.

Feeling the cold is still an issue and the heating has been on a fair bit more than usual perhaps at home. Also by the end of the day I do feel quite tired but can usually cope and still be productive with washing, ironing and writing.

The hyper-observant of you might have noticed last week's post of 4th November was labelled as T+413 ( i.e. 413 days post transplant ) but it was of course T + 414. I blame a mislabelling of dates in the little book I record how much I have had to drink each day ( to keep me on track for my 3 litres ). Normal service has been resumed.

NaNoWriMo

This blog is short partly because there is nothing much to report on the health front and partly because I'm using my energies to work on my novel. It's going pretty well , I passed the halfway word count of 25,000 words yesterday.

Am I also halfway through the actual story arc as well as the word count? Well no more like 3/8 or maybe 7/16 but I think I can remedy that and of course it is no problem if I have the time to write 60 or 75 thousand words.

Here is another , not so random, sentence to whet your appetite

Was this thing for real thought Stephan. What kind of evil maniacal genius applies health and safety rules to his lair with such assiduity ? Were there government inspectors for lairs ? What would it be OffLair, OffEvil? OffNut maybe.

T + 413 Write On!

2009-11-04T16:33:00.002Z

It was transplant clinic this morning and I saw the consultant who saw me through my transplant and the first three months post-procedure so it was nice to catch up with him.

We reviewed where I was with everything and the edited highlights are that I am going to stay on the same prednisolone dose of 5mg one day, 2.5mg the next and go back in two weeks' time.

I mentioned about how sensitive I am to the cold nowadays and have to warm up like a lizard basking on a sunny rock before I am fully functional. He said that is often a symptom of thyroid hormone levels but I'd had this tested last time I went to the clinic and he looked it up and the levels were fine. So we are just going to keep an eye on that.

I also mentioned I'd been getting a few aches and twinges in my shoulder and elbow of my right arm, not in the joints themselves but more where the tendons join. I only mentioned this in passing because I know GVHD can attack joints. I was surprised by how thoroughly he questioned me about this and got me to check my range of movement ( which is fine ) and he made a note of it in my, err...notes. He thinks it is prolly nerve related and might be a trapped nerve in my neck. Again we are going to keep an eye on it and review it at my next visit.

Whilst I was waiting between having blood taken and seeing the doc I'd taken my little laptot (netbook) computer with me and managed to write 300 more words for my NaNoWriMo novel which was a bonus.

On that topic...

NaNoWriMo

The "competition" officially got underway this Sunday. On Saturday 31st October I went along to the Coffee Lounge and met up with eight or so fellow wrimers from the Midlands region. It was nice to meet up with some others entering this year and there was a mix of ages and experiences with some people doing it for the first time and others having completed 5 previous years successfully. It was mostly ladies of the female gender and there were only 3 of us blokes there. Is fiction writing more of a female pursuit I wonder?

After a couple of hours I went back home to have a nap to prepare me for the night time write over. We met in the Thistle Hotel at 21:00 and got settled into a very nice conference suite for the night.

We had a countdown and on the stroke of midnight we began writing. The way the night went was generally 45 minutes of quiet writing and then a 15 minute break for nattering, stretching legs etc. This worked really well and by 05:30 I had reached the target I had set myself of 5000 words.

I could have carried on a bit longer but I decided I would take my leave of the group at this point and I was tucked up in bed by 06:00 on Sunday morning. Most of the rest of the group carried on until 09:00

It's been a long time since I stayed up until the early hours doing anything and it was fun. I woke about 09:30 on the Sunday and though physically tired, mentally I was reasonably alert so I got up. By midday my mental state matched my physical one and I went back to bed for a "nap" which lasted four hours. After that I was pretty much back to normal sleep patterns.

There are a couple of pics of the write over here and here

Since the Sunday I have been making reasonable progress with the writing and my current total stands at 9821 words. Which is well ahead of schedule in terms of just number of words. In terms of where I am in the progress of the story that is another matter and something I will need to address this weekend I think with some longer writing sessions.

Here is a random sentence from my novel so far:-

“Gentlemen..” Lili tried again. Still no attention. Lili put her thumb and finger in her mouth and emitted a shrill whistle that almost made the glass windows of their room vibrate. She followed this by an equally loud “Oi!”.

As you can see it's a bit of an ugly sentence with the repetition of "Lili" but it was prolly written around 3am and the whole point of this exercise is to switch off your internal editor and just write and move on. Corrections are for after the initial creative burst of November.

T + 408 Preparations

2009-10-30T16:28:00.003Z

Well the last week I've been doing pretty well, getting back to normal. I went in to the office Tuesday and Thursday this week and hopefully I'll be able to get back to making that the regular timetable.

That said, since I started reducing my prednisolone to 5mg and 2.5mg on alternate days I have felt a bit rougher in the mornings and quite tired come the evening with a couple of early nights already. Today (Friday) was probably the worst it has been but I've still been able to log on to work ok though I did have a little nap at lunch time , which helped a lot.

We shall have to see how this goes. Not ideal conditions for NaNoWriMo perhaps but what you gonna do? It's like the driver lost in a strange village asks the straw chewing yokel "How do I get to town?" "Oh I wouldn't start from here if I were you" comes the reply.

Speaking of NaNowriMo...

NaNoWriMo

My preparations for this year's competition have been going well and I've worked out the main story arc and about 14 scenes in outline ( all of which you are allowed to do as long as you don't start writing the prose). It's looking a little on the light side to last 50,000 words maybe but hopefully it will flesh itself out as I go along.

Tomorrow, Oct 31st, I'm planning on going to the midday Coffee Lounge meet up for Midlands NaNoWrimers (as we are known).

I've also had a rush of blood to the head and decided to go to the midnight write in ( like a sleep over but writing instead of sleeping ). We meet up in the Thistle Hotel in Birmingham at 21:00 on Saturday 31st October for general chat and settling in and then on the stroke of midnight we can start writing.

The idea is to write through to about 08:00 and then go for breakfast in the hotel. Whether I make it that far I don't know but I thought it would be fun to try. I'm getting a lift in to town so I can just get a taxi back at whatever time I call it a day without having to worry about driving whilst tired.

I've also booked Monday off work to help me recover though I am hoping to use that time to boost my word count as well.

The working title for my novel is "Reunion"

T + 400 NaNoWriMo

2009-10-21T16:28:00.003+01:00

Say what now? Have I finally gone crazy and started spouting nonsense ( more than usual ).

No, NaNoWriMo stands for National Novel Writing Month and once I explain maybe you will think I have gone mad, but first a quick medical update.

Things have gone well this week and I have been able to log on to work as normal and even visited the office yesterday. I've started a slow taper of my prednisolone steroids and currently on 5mg one day and 2.5mg the next. So far so good.

Also my nausea caused by taking itraconazole seems to have eased so maybe it was because my ciclosporin levels were a bit high before.

NaNoWriMo

So NaNoWriMo or NAtional NOvel WRIting MOnth. Well you can read the details on their site but here's the gist of it...

National Novel Writing Month is a fun, seat-of-your-pants approach to novel writing. Participants begin writing November 1. The goal is to write a 175-page (50,000-word) novel by midnight, November 30.
Valuing enthusiasm and perseverance over painstaking craft, NaNoWriMo is a novel-writing program for everyone who has thought fleetingly about writing a novel but has been scared away by the time and effort involved.
Because of the limited writing window, the ONLY thing that matters in NaNoWriMo is output. It's all about quantity, not quality. The kamikaze approach forces you to lower your expectations, take risks, and write on the fly.
Make no mistake: You will be writing a lot of crap. And that's a good thing. By forcing yourself to write so intensely, you are giving yourself permission to make mistakes. To forgo the endless tweaking and editing and just create. To build without tearing down.......

This is the tenth year of NaNoWriMo and in 2007 over 100,000 people took part and 15,000 people completed it.

I actually tried NaNoWriMo back in 2003 but as I had just started my full-time post grad at the TIC I didn't do so well. My issue was not the number of words ( that is never a problem ) but being able to complete the story in time from beginning through the middle to the end.

I've come close to trying again before and this year I have taken the plunge. This time though I have started to fully plot out my story and the characters backgrounds, this is all allowed in the rules as long as you don't start to write the actual story prose before 1st November.

I'm also hoping to get along to some of the face to face meets of NaNoWriMoers that are being organised in Birmingham at one of my favourite coffee shops, the Coffee Lounge Navigation Street.

So what's my book going to be about? Well the general consensus is that whilst it is a good idea to publicly announce you are entering NaNoWriMo ( no backing out now ) the text you write etc. is best kept private apart from the basic details.

My idea is for a darkly comic novel set on a desert island. Think Lost meets Lord of the Flies meets a teen slasher film but with forty-year old protagonists.

All this means I prolly won't be blogging that much during November but I'll try to do a least a quick health bulletin and the occasional progress report. I'll also be tweeting progress as I go, check out the tweet feed on the left of your screen or follow me via my twitter feed.

Wish me luck!

T + 394 Back on Track

2009-10-15T16:32:00.002+01:00

I went to the transplant clinic yesterday and took my Dad with me in Arthur. Mostly for the company but also just in case I didn't fancy driving home.

I saw my consultant and explained how I have been getting steadily more energy since starting the additional steroids. The plan now is to try and get completely off the predisnolone over the next month. I am currently on 5mg each day, from next Wednesday that will go down to 5mg one day and 2.5 the next.

The idea is to get free of the prednisolone over the next four to six weeks. Then it comes to the issue of getting off the new Hydrocortisone but I may be referred to the endocrinologist for that for a formal assessment of my adrenal function if I get withdrawal problems when the time comes.

Yesterday I had an extra phial of blood taken to measure my thyroid and cortisol levels so will be interested to see if that shows anything.

The doc said I was basically back on track which is re-assuring.

Back in three weeks' time.

Today I logged on to work for the first time in two weeks. It's gone ok, I'm a bit tired but no more than usual.

T + 392 Twitter > Trafigura + Carter-Ruck

2009-10-13T17:37:00.004+01:00

First a brief medical update. You'll pleased to know that the extra dose of different steroids, hydrocortisone and fludrocortisone, have helped get my energy back. It's gradually got better over the last week and today I got up at 07:40 to test if I can manage a whole day vertical.

I'm pleased to say I have managed just fine including a walk up the hill to the shop and a brief ride out in Arthur to do a couple of errands. I'm at the transplant clinic tomorrow and then hopefully logging back on to work on Thursday.

Of course the question remains how I get weaned off these new steroids that I am that help wean me off the original prednisolone steroids. But one step at a time.

Now for the real meat of this post.

Soap Box

It's not that often, I hope, that I get on my soap box in this blog. The last time I can recall was for the Atheist Bus Campaign almost exactly a year ago.

So perhaps you can indulge me once again. I should declare at this point that I am a typical left-wing middle-class wooly liberal ( small "l" ). As such freedom of speech and expression are important to me. Also as a geek, rationalism and the scientific method are important too.

This results in me following several blogs and campaigns and sometimes participating in them ( though only online, I'm an armchair left-wing, etc. etc. afterall)

Some of the key blogs, sites or newsletters I follow are:-

No2ID - Against the government ID scheme. For me this is not just a card it's a whole insidious and unsafe database that will cost billions and achieve little except a further erosion of civil liberties.
BadScience - Ben Goldacre's excellent commentary on the appalling mis-use of science in the media
British Humanist Association - They have excellent campaigns to stop the rise of religious dogma getting into schools unchallenged.

Unfortunately it can feel rather depressing at times when things seem to be getting worse in relation to all of the above and the other infringements to civil liberties perpetrated by this government. ( One I voted for incidentally and don't let the Tories fool you into thinking they'd be any better, just more subtle and commercially orientated).

It's easy to feel "what is the point? Nothing is ever going to change". So it was very gratifying today to see a small victory in "our" favour. This relates to the "Trafigura" scandal with respect to alleged dumping of toxic waste in Africa by the Anglo-Dutch-Swiss oil company.

I was alerted to this issue this morning via a tweet from @stephenfry on twitter

Outrageous gagging order. http://tr.im/BCA2 It's in reference to the Trafigura oil dumping scandal. http://tr.im/BCAm Grotesque and squalid.

Carter-Ruck is a legal firm who specialise in libel and privacy law but more often than not it seems mostly on behalf of large corporations or rich individuals seeking to suppress information that would be in the public interest, not for a poor person picked on unfairly by the press ). These unconscionable lawyers had a judge issue a gagging order on the Guardian reporting on the proceedings of parliament, namely a question about the trafigura report and how it has been subject to an injunction itself.

This is a quite incredible attack on democracy and freedom of speech. You can read about the details from the two links in the quote from Stephen Fry. Just to be clear here, the Guardian was going to be prevented from reporting on the proceedings of parliament, namely a published question in the order paper.

It soon started being reported all over twitter ( or trending as they say) and the 'net in various ways. The LibDems (bless ;o) were going to ask for an emergency debate about this issue in the House of Commons.

By lunchtime the gagging order was effectively lifted or withdrawn by Carter-Ruck . The whole thing had been a PR disaster and attracted far more attention to Trafigura and the injunctions they have been getting than would have happened without this parliamentary gag attempt.

Surely it can't be coincidence that the 'net and the twitterverse was awash with comments about it.

It was nice to be however small a part of this by my re-tweeting of the story and if anyone ever thinks twitter is just about banal subjects like what I had for dinner ( Delia's Smith's stuffed peppers and rice since you ask ), then this shows you it can be so much more.

When Stephen Fry speaks (tweets) 800,000 people hear.

Now this is only one small victory and even in the Trafigura story there is still much to be done to find out the truth, which they are still trying to suppress but even so it was very gratifying.

Thank you for listening.

T + 387 Fight fire with fire

2009-10-08T13:22:00.002+01:00

I went to the transplant clinic yesterday and saw my consultant. She could tell that I wasn't my usual chirpy self and as I explained how I had been the previous week she put it down to one of two possible causes.

But first just to recap on the preceding week. I have been very up and down with my energy levels and nausea, though more down than up. Unfortunately I couldn't find a useful pattern to it to relate to my steroid dose as I alternated between 2.5 and 5mg a day.

For example Sunday was a 2.5 day but apart from a bit of nausea before lunch I had a reasonable day, was able to visit my friend Andy in the afternoon and even iron a few shirts in the evening. Monday, a 5mg day, was ok but I was a bit nauseous. Then Tuesday another 2.5mg was a total washout. It was the worst day for fatigue I have known. I had four attempts to get up and each time after about half an hour or so I ended up back in bed. I finally managed to get up and have a shower by 16:00 and I was in bed by about 21:00

So after those edited highlights back to the clinic yesterday. The two possible causes were poor adrenal gland performance as the registrar the week before had surmised or a more generalised bout of GVHD which would also explain the nausea.

To rule one of these out, to combat the effects of steroid withdrawal the solution is...more steroids. But two different ones this time, some hydrocortisone and fludrocortisone. They will replace the natural levels of cortisol my body should be making. I have to say the interaction and difference between these ( Mineralocorticoids steroids ) and the prednisolone ( a glucocorticoid ) is not at all clear to me. ( Just when I think I am getting a handle on all the medications etc. guess this is why it takes at least 10 years to become a consultant).

So feel free to google and wikipedia all those terms and if you work out how it all hangs together please let me know.

Suffice it to say if my fatigue has been caused by the steroid withdrawal then I should see the difference in a few days time.

If I haven't seen improvement by Sunday this week then a more generalised attack of GVHD is more likely and so then I will up my steroids from 5mg to 30mg which is quite a leap but not as much as a "full" dose for my body weight which is 100mg

Next week at clinic I'll also have a hormone panel taken from my blood samples to check cortisol and thyroid levels.

I took my first doses of hydrocortisone and fludrocortisone and of course it could be the placebo effect but I do feel like I have more energy today though also some vertigo which is a known side effect ( maybe I shouldn't have read the leaflet ).

Just have to see how things go from now on. My gut reaction would have been that it is more likely a generalised attack of GVHD because of the nausea though until now GVHD has always attacked my skin. Maybe it got bored and fancied a change. The consultant said it was literally 50/50 as to it being adrenal or GVHD. Not sure where we go longer term if it is adrenal but for GVHD I know the score. Yet another attempt at tapering the steroid dose over time.

T + 379 I'm not an addict.....

2009-09-30T14:14:00.004+01:00

.....I can give up any time I like" as the old government anti-drugs campaign used to say.

I've had another bad week with fatigue and nausea to the point that for large parts of the day I've been hors de combat and certainly not up to logging on to work. I was due to go to the transplant clinic next week but called yesterday to get the appointment brought forward.

I saw one of the registrars who was very nice and she confirmed my suspicions that the cause of my problems is mostly likely steroid withdrawal. Unfortunately at this stage the only treatment is to go back to a higher dose of steroids to get the corticosteroids flowing again as my adrenal glands have decided to take a holiday as they think they are no longer needed.

This is a bit frustrating as this current tapering regime seemed to be working well and I have only had one small outbreak of my GVHD rash that a couple of days of topical betnovate cream sorted.

The doctor said that it is possible to become dependent upon steroids and then the tapering and withdrawal has to be done even more carefully. In really bad cases the dependency has to be treated by an endocrinologist who uses cortisone and other drugs to aid the weening process.

Hopefully it won't come to that.

I'm currently on 2.5mg every day of prednisone but will now increase that back to 2.5mg one day and 5mg the next. If I improve on that then the aim is to taper even slower and go to 2.5mg for two days then 5mg and so on , going longer and longer between 5mg . It's going to take a while to get off them at that rate but it maybe the only way.

I'm due back at clinic next week to see how I am getting on but in the meantime I've been signed off work for two weeks whilst I try and adjust.

T + 372 Deja Vu

2009-09-23T15:30:00.003+01:00

Since my last post celebrating one year of transplant I have certainly had a deja vu feeling, or déjà vu if you want to be posh.

I've been feeling unwell since last Wednesday 16th September evening and today is the first day I have felt well enough to log on to work, though I'm still not 100%

I'm fairly sure it is mostly steroid withdrawal related, I just get these waves of total fatigue come over me. Unfortunately when it came over me on Wednesday I was in the middle of cooking a lasagne for my tea using a new recipe. I'm not quite sure how I managed to get through it to be honest though as soon as it didn't need any attention from me I had a lie down while it finished cooking. The result was passable and I did find eating a portion perked me up a bit so I wonder if it is blood sugar related? I'll ask the doc about this when I go to the clinic next.

The following morning I realised I had left out the wine and only used half the amount of cheese sauce I should have in the lasagne so I was clearly not focussing well. Even so it was passable and I look forward to trying it again when I am "compos mentis".

From the Wednesday onwards I have suffered from nausea in the mornings and bouts of fatigue coming over me that have made doing anything but sitting or lying down really difficult.

On Friday I had a bit of a scare with my temperature going up to 37.8 ( 38 is the magic number when I have to ring the hospital ). I had a two hour nap and my temperature had come down but I went on to sleep another 12 hours.

I might have had an infection starting but it looks like even my puny immune system could fend it off. Maybe the virus or whatever infectious agent it was , wasn't having a good day either.

The problem since has been working out how much I can manage and not doing too much but the tipping point into lethargy seems to be quite sudden. On Monday afternoon I helped Gareth in the garden a bit and then came in to do the washing up and that was too much for me and I had to stop half-way through.

The trick is stopping before I do too much which, if you will allow me a digression, reminds me of a customer I had when I worked for a CAD company.

The client had just done a health survey interview for all staff and my contact, a hard drinking Northern Irish man was asked about his drinking. "I drink until I've had enough" he said. "And how do you know when you have had enough?" asked the interviewer. "That's easy", came the reply, "When you fall off your stool, have two more, then stop."

So aside from feeling rough like I did a year ago I also noticed one other little coincidence that has been replicated from a year ago. Channel Four showed the three Lord of the Rings films on successive Saturdays. I remember this helped me through a couple of evenings when I was on the Bone Marrow Transplant unit. So seeing the trailers for it again on the same weekends this year brought it all back to me. Spooky. (I really should get round to finishing reading the books, but that is another story [pun intended]).

However I'm fairly sure I'm not in a time warp or ground hog day situation, which is just as well as I am really looking forward to getting back to the good progress I was making before the last two little hiccoughs I've had.

T + 365 Now We are One

2009-09-16T15:20:00.008+01:00

My immune system is now one year old. It depends exactly on how you count it but I received by donor's cells on Tuesday 16th September 2008.

I was in the office so I bought cakes and cookies for people to celebrate and when I got home Gareth had got me a birthday card with a "1" on it and cooked me a celebratory meal for dinner ( with a little help from M&S).

The year has flown by in many respects and I was reading back over some of my posts at the time. It bought a lot of memories back. Can't say they are exactly happy ones as I was quite ill for most of the month of September but it is something to be able to say "I got through that".

Unfortunately my body has decided to join in the nostalgia by making me feel like crap, especially in the mornings. I haven't quite pinned down what is causing it and yesterday I was pretty good and able to go into the office but today I woke with the collywobbles and feeling nauseous and lacking in energy and this happened last Friday as well. Maybe it is related to dropping the steroid dose.

I've shuffled some of my meds round to help with the nausea and now take my itraconazole liquid on its own in the morning and sit up in bed very still for 30 mins after taking it. That seems to help.

I can cope and I do start to feel better as the day wears on it's just rather frustrating particularly as it is so inconsistent. Monday I helped a Andy move house and that was fine as well, then today I am laid low ( though have still managed to work a full day logged on to work from home). At least I don't have a temperature or any rash so it's unlikely to be an infection or GVHD issue.

On a completely unrelated topic during my recent infection and recovery I stopped shaving and so had quite the full beard by this weekend. Well the Devil makes work for idle beard trimmers so on Sunday I experimented with a new look:- (Click to embiggen, actually you can't for some reason blogger has gone wonky try the links here and here)

Mom was not impressed when I turned up for Sunday lunch even though I had lost the cravat by then.

Since then I have trimmed off the side burns and just have the long droopy moustache but I've started growing my usual goatee back. Though I might go for some of the other options exhibited in John Dyers blog. "The Quest for Every Beard Type"

The garden has also had a make over. It's gone from a meadow to this:-

And today the transformation was completed by Greenway Garden Services:-

They did the levelling, paving and gravelling (sic) and put the spare soil into the beds that Gareth built all in five hours.

It's not been exactly cheap but it's been easier to earn money typing at a keyboard to pay for it than trying to do it ourselves.

I think it will work out at about £2.30 a potato until 2017 but after that I'm in the paydirt :o)

I need to see if there are any late crops I can plant now . Answers on a postcard please. Or email. Or a comment below.

Here's to the next year! Wonder how things will be when I look back to today.....

T + 360 Back to "Normal"

2009-09-11T16:08:00.002+01:00

On Wednesday I went to the transplant clinic and got some good news as my blood counts and my neutrophils in particular had returned to their "normal" levels. Normal for me is not quite normal for anyone else as I am still on steroids and ciclosporin both of which suppress the immune system white cells.

We are going to have yet another go at reducing my steroid dose but this time I have some new 2.5mg tablets as well as my usual 5mg. I will try 5mg one day and 2.5 the next for two weeks and then 2.5mg every day for the following two weeks before I go back to the clinic in a total of four weeks' time.

The visit didn't get off to a great start as after the phlebotomist had taken my blood, rather than taping a ball of cotton wool over the puncture mark she used some type of gauze packing. I thought nothing of it but as I walked out the room I was met with rather shocked faces from a couple of the other patients in the waiting room. I looked down and saw the blood was running down from the crease of my arm. It was one of those things that looked more impressive than it was but I scuttled back inside the treatment room to get it sorted.

More gauze, pressure and tape was applied and the red tide was stemmed. I asked had they run out of cotton wool and was told they are not allowed to use it anymore "something to do with the fibres" was the response from the nurse, with appropriate sighing and eye-rolling. It does seem faintly ridiculous. How many years have people been using cotton wool? I've had getting on for a hundred sets of blood samples from my arms and never had any leaks. First time with the new gauze and that is the result.

However let me move on before I start blaming health and safety or saying it is political correctness gone mad.

That Wednesday was the 9th September and I was admitted to the Bone Marrow Transplant (BMT) unit on the 8th September 2008 with the actual transplant taking place on the 15th. So to celebrate that fact and to say thank you for the amazing care I had had I bought a few boxes of chocolates for the different wards, doctors and clinics that have looked after me.

I was quite the Easter bunny visiting the BMT, Ward East 3a where I had all my prep chemo and the Day Unit where I have been for my transfusions. The staff were really appreciative and it was nice to be able to do something nice for them even if it was just a token.

T + 350 Here I Go Again.... (PG)

2009-09-01T17:09:00.006+01:00

though unlike the lyrics to the song by Whitesnake I'm not "on my own".

Rated PG for vomit.

Since my last visit to the transplant clinic ( and blog as it happens ) things have been rather up and down. It took me until the following Wednesday to feel well enough to return to logging on to work.

I took my first GCSF injection on that first Wednesday evening with some trepidation but it all seemed to go ok and I certainly didn't have any immediate reactions like I did last time.

The problems this time have come the next morning instead. Both last Thursday and Sunday, the day after my evening GCSF injections I have felt quite nauseous and on Sunday I was sick just after taking my morning Itraconazole and Penicillin. ( I take these first thing as they need to be on an empty stomach and an hour before food ). I guess it was good that I hadn't had my breakfast before I was sick.

I was wiped out for most of the day and took some anti-sickness tablets to help me out for the rest of the day. With all the other things going on with fighting off the infection etc. I hadn't totally associated the problem with the injections but looking back over my little treatment journal ( where I record what meds I take each day and anything else of significance ) I can see the link.

Forewarned is forearmed as they say, so I will know to take anti-sickness before I take my evening injection and another one first thing upon waking. The problem is they take about 1 hour to start working so it means all my other meds are delayed and I have to hope I keep everything down long enough for them to take effect.

Only two more injections to go, hopefully, and my counts will have recovered enough for me to stop them when I go to the clinic on 9th September.

These last three weeks or so have been quite difficult to deal with and I have been feeling quite down at times. It has been an unfortunate combination of events, GVHD coming back, getting an infection, being in hospital, tamiflu and GCSF making me sick all contributing to the situation.

Things had been going very much in the right direction with being able to go the office, the occasional trip to cinema or meal out and getting my steroid dose down to almost nothing. All that has gone by the wayside now and it does feel like a real step back.

It's almost a year since my transplant and though in someways I have come a long way in others I'm still where I was a few months ago. I.e. on steroids and ciclosporin with a reduced immune system and all that means. I've also had more days when I have felt really rough especially with the nausea and vomiting which have been particularly debilitating. Having gone through all my other treatment relatively easily without feeling bad you'd think I'd be in the clear for that by now, but apparently not.

Add in a bit of change and uncertainty at work to the mix and the whole thing has been a bit of a buzz kill, to coin a phrase.

However I must try to look on the positive side. This time last year I was about to go in for my transplant and struggling with a cold and conjunctivitis. That and the ordeal of the transplant itself are all behind me.

Gareth has been tremendous coping with both my moping about and my inability to help with the housework. He even found a Service Bell application on my iPhone so I could summon him when I have been bed ridden.

Mom and Dad have also been supportive but unfortunately the last couple of weeks my Dad has had a cold and now my Mom has it so I've only been able to talk to them on the phone.

It's not often that I feel as low as I have done at points over the last few days and even rarer that I discuss it on my blog but it can't all be sunshine and lollipops. A trouble shared is a trouble halved as they say ( or is that misery loves company? ).

T + 337 Wot No Flu? (PG)

2009-08-19T17:19:00.011+01:00

Rated PG for discussion of vomit and pictures of rash.

After being discharged by the doc at about 11:00 last Monday due to waiting for tablets I didn't get to leave the ward until about 18:00. My ever present Taxi driver, Dad, came up during normal visiting at 14:00 and stayed with me whilst we waited.

It was a bit odd that, like the nurses who came into my room, he had to wear an apron and a mask:-

even though we were going to be driving home together once I had my meds. I guess the idea was just to stop it spreading on the ward I was on.

When I got back to the flat it looked liked I was not the only resident of College Road who wanted to take precautions (thanks Gareth ;o) :-

That evening I took my first dose of Tamiflu along with a ham sandwich. The leaflets warn that nausea and vomiting are common side effects of Tamiflu but usually only with the first dose and that effect is reduced if the tablets are taken with food. However all was well and I thought I was going to be ok.

The following morning I took my usual morning meds and then with breakfast I took my 2nd dose of Tamiflu. Half an hour later I was being sick and up came my frosties, along with, by the taste of it on the way up, some of my other meds.

This presented a problem as I would need to be able to keep my other meds down long enough for them to be absorbed. I tried a few sips of water and that came back about 10 mins later. I retired to bed for an hour and then tried some more water. This stayed down so I then took an anti-sickness tablet ( ondansetron) and waited an hour for this to take full effect. This is the first time in all my treatment that I have had to take anti-sickness outside of the hospital.

The anti-sickness did the trick and I was able to eat and take my next dose of meds in the normal way. So that set the pattern for the five days , take an anti-sickness twice a day an hour before having Tamiflu with food.

I have been up and down over the last week at times feeling queasy, low energy, unable to concentrate etc. and other times feeling ok. My temperature however has been back to normal throughout.

I have not logged on to work since the Sunday before I was admitted on the Monday and that is prolly just as well as concentration has been hard. Today was the first day I felt like reading a book. Instead I have been letting the Sky Plus box be my constant companion and let the TV wash over me. In particular I have caught up the 5th series of House which is tremendous fun though whenever they talk about bone marrow or GVHD I flinch at the gross errors they make.

Today I went to the transplant clinic for a follow up from my last appointment two weeks ago. From this I got the results from all my tests whilst I had been in hospital. My blood was clear for bacterial infections and I did not have any sort of flu (swine or otherwise ). There was however a "patch of infection" on my chest X-ray and it was prolly a viral infection I had/have. This is medical speak for "we don't know what you have but you've definitely got something".

My neutrophil count was still low and so my consultant prescribed some of the evil GCSF injections that gave me a funny turn back in October. We did discuss with the doc treating me then I could try a different formulation of the drug to see if that worked better, however my current consultant was not keen on that as the other formulation is fiddly to administer at home requiring stuff pulled from two phials and mixed in correct proportions. She felt as I had been fine before the transplant my reactions were probably because it was so close to my transplant ( only a few weeks in fact ) so could I try them again? She said I could get her struck off the medical register for being mean if I had more reactions.

I'll be taking my first injection tonight and hoping I feel ok. To avoid a psychosematic effect I am thinking positive and focussing on the bone pain I'm going to have when the drug starts taking its effect in a few days :o)

I'll be back at the clinic in three weeks when I will have a follow up chest X-ray. There is no point having one now apparently as the spot of infection can remain on X-rays quite a while after the infection is gone. I'll also get the results of the CRP test which is an infection marker in the blood ( it was 44 last time and the normal level is below 10 ).

Finally we haven't had any grizzly pics for a while so in case you were wondering what GVHD looks like, here it is:- (Click to embiggen).

T+329 Back in hospital

2009-08-11T10:25:00.002+01:00

Yes a live blog posting from the QE hospital. It all started on Saturday when I woke feeling rough with absolutely no energy. then my anti-fungal medicine made me heave though I wasn't actually sick.

My temperature was a bit up at 37.6 more than my usual 36.5 but below the danger level of 38. Unfortunately I had to logon to work to help with the go live of a new server and my colleague (and now boss) was on holiday so there was noone to cover for me. I struggled through the changes needed in between spells in bed.

Sunday I felt a little better and my temperature was down to 37.3 but I still had no energy at all. Monday I started out feeling even better but after bringing the sainsbury's delivery upstairs and putting it away I felt worse again and had to go back to bed. I had asked mom and dad to pop over in the afternoon and when I got up to see them I had another bout of dry heaving with a tiny spec of blood in it (most likely from the straining + not fetching anything up) . I decided at this point as I wasn't really improving I should call the hospital.

The Transplant doctor asked me to come up to the day unit and whilst they waited for blood and NPA results (see medical glossary) she decided to admit me. There were no beds available on the transplant unit or haematology ward where I had been before but by 1700 I was settled in to the admissions bay on the Bournville Ward (still at the QE not actually in Bournville).

I had a reasonable night + feel much better today, must be the placebo affect of all this attention :o). The doc had prescribed me some Tamiflu just as a precaution and because of that I was moved to a single room which was all quite jolly until a nurse wearing gloves, apron and a mask came in with some bottles and a commode! I'm obviously not allowed to leave this room.

However since I started typing up this blog (which takes ages on the touch screen of the bedside terminal) the doc has been to see me + said my blood work was all clear apart from my infection markers were high ( 44 when the usual level is 10 ) so I obviously have or have had an infection.

I'm being sent home today on antibiotics and precautionary tamiflu whilst they await the results of the snot sample but it's not likely I have flu of any sort. I'm still not 100 percent and get tired easily but that is prolly steroid withdrawal symptoms like I had a few months ago. I'm going back up to 5mg a day from alternate days as my gvhd rash has come back a bit as well which is a disappointment.

Right time to pack whilst I await drugs from pharmacy. sorry for any typos it's this keyboard.

T + 323 I Forgot to Remember Not To Take my Tablet

2009-08-05T16:35:00.003+01:00

This morning I went to the transplant clinic for the first time in six months and it was, just marginally, a bit more unusual than a regular visit.

I had my bloods taken and then realised this morning I had already taken my ciclosporin which I am not supposed to do when I have bloods done as one is to measure the "ambient" level in my blood and this would be distorted by the morning dose. I was obviously out of practice going to the clinic.

Then through a convoluted sequence of thought processes which I won't go into here, I convinced myself I hadn't actually taken my ciclosporin and took my second dose that I would normally take at tea time. Oops.

I then went in to see the doc. She checked the skin on my chest and neck and said there was little or no evidence of Graft Versus Host Disease so we are going to reduce my steroids from 5mg per day to 5mg one day and none the next. Getting ever closer to coming off them.

My other blood results were the second unusual thing. My haemoglobin was back up to 11.2 from 10.6 last time which is very encouraging, looks like the folic acid is helping and I really might finally be making my own red blood cells. My platelets were also fine ( as they always have been throughout all my treatment, which is just as well for someone as clumsy as me ).

My white cells however, and in particular my neutrophils that fight bacteria were a lot lower than they had been. This can be a sign that my body is, or has been, fighting an infection and the doc asked me if I'd had a cold or been otherwise unwell. However I've been fine as far as I know. As the doc said "we treat the patient not the blood test" so she didn't plan to do anything about the low counts at the moment but did ask to see me in two weeks to keep an eye on it.

Since I need to have a proper ciclosporin blood test I'm going in to the clinic on Friday to have that done and a repeat of the blood count sent to the lab to see what my neutrophils are then. Sometimes the analysis machine they use in the clinic gives the occasional anomalous result.

T + 317 Nothing to See Here

2009-07-30T12:19:00.002+01:00

On Tuesday I went to the late evening clinic at the eye hospital having been referred by my optician because my pressures were a bit high.

I got my long suffering taxi driver Dad to take me in case I had my pupils dilated and couldn't drive back. We arrived early and it was pretty busy. My appointment was for 18:45 and I was seen about 19:30 I think. They were short staffed apparently.

The doc I saw did the usual eye exam checks with the big light and called a colleague to come in to take a look at my map-dot-fingerprint dystrophy caused by my dry eye syndrome as he thought the colleague would like to see it.

The doc then recommended I start using the night cream lacrilube again and told me to come back in six months. At which point I gently reminded him I'd been referred for abnormal pressures and could he check them. I guess he'd had a long day. Anyway the good news is that my pressures are fine and I will go back in six months for a general check. The checks they do in opticians with those air puff machines are not as accurate as they can do at the eye clinics with the yellow dye and the blue light thing ( which I now know is known as Goldman Tonometry. You can see a video of different way to measure the pressure here , ( not for the squeamish ) )

In other news I've not been in to the office this week as someone on the floor below where I work and the wife of the person I sit next to have both been treated for swine flu. It hasn't spread anywhere else in the office so far and both people mentioned are now fine so hopefully I shall be back in the office Tuesday.

Tonight I am off to see the British independent Sci-Fi Movie "Moon" with Gareth and Andy and tomorrow the wood is being delivered to build the vegetable beds for the garden.

I ordered the wood from the local saw mill last Saturday where there was that frequent and special use of the word "be" as in "2 be 2" and "6 be 2". Rather oddly the lengths are metric and the other dimensions imperial hence ordering several 3m lengths of "6 be 2" . Now just hoping we get some dry weather to be able to build the beds.

In gadget news, thanks to a heads up from Andy about this recent change in Orange's T&Cs I have been able to get out of my current Orange contract and having been impressed by Gareth's iPhone 3GS I've ordered a white iPhone 3GS 16GB on contract from O2 via Carphone Warehouse and it's due for delivery today with a following wind. ( "Carphone Warehouse" is an odd brand name these days. Car phones used to be just that, fitted in the car and not removable but that was many years ago ).

T+308 Intermission

2009-07-21T09:00:00.002+01:00

Sorry for the bit of an intermission on my blog. Of course in one sense it means nothing exciting is going on medically which is a good thing but I really should try and manage at least one update a week. I will try harder.

My excuse, such as it is, is that last week I was working Wednesday to Friday doing a disaster recovery test at Hewlett Packard's (HP) recovery centre in Rugby. This is where we pretend some of our systems have exploded and we go down and try and recover them using just the backup tapes onto new equipment provided by HP.

These are relatively intense sessions albeit with some periods of inactivity whilst we wait for the data to be recovered from the tapes. This along with travelling to and from Rugby for three days meant I was really tired by the end of each day. More so than usual. You'll be pleased to know, however, we recovered the systems successfully even if the client never turned up to test them.

In other news I finally got my eye hospital referral sorted after several more phone calls to both the eye hospital and Vision Express and three faxes. A few days after that I had my appointment come through for 28th July at 6:45pm. I was a bit surprised the appointment was so late and I hope I don't get a doctor that has been in clinic since 8:00am. Still I'm glad I've got an appointment relatively quickly after finally getting my referral onto their system.

Yesterday I went to see the Harry Potter (HP) film "Harry Potter and the Half-Blood Prince" at he Electric Cinema in Birmingham with Gareth and Andy. We didn't have a posh sofa this time just the normal seats and in relative terms the cinema was pretty busy with about two dozen people in the 17:30 showing. Even so we had the row to ourselves and the rows immediately in front and behind were empty as well which suits me just fine.

I won't go into a review of the film at the moment other than to say I enjoyed it and was surprised to have an intermission about half-way through ( it is 153 minutes or just over two and a half hours long). We thought this was something the Electric were doing off their own bat but just after the Christmas Party scene up came an official HP (not that one, the other one ) title screen announcing an intermission so clearly this is designed in to the showing of the film as it were.

We had a five minute break and people could get drinks from the bar and go to the loo. All very civilised. Quite how this would work with a huge 300 seat screen at your local multiplex I'm not sure but for the couple of dozen people at the Electric it worked well.

The only other films I have seen with an official intermission in them are "Gone With the Wind" and "2001: A Space Odyssey" and no I wasn't old enough to see these at the cinema, these were on DVD.