T + 826 Simon of a Thousand Days

Posted by raetsel at Tuesday, December 21, 2010

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

Posted by raetsel at Thursday, December 02, 2010

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

Posted by raetsel at Saturday, November 27, 2010

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

Posted by raetsel at Friday, November 26, 2010

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

Posted by raetsel at Wednesday, November 24, 2010

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

Posted by raetsel at Tuesday, November 23, 2010

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

Posted by raetsel at Monday, November 22, 2010

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

Posted by raetsel at Sunday, November 21, 2010

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

Posted by raetsel at Wednesday, November 17, 2010

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

Posted by raetsel at Monday, November 08, 2010

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

Posted by raetsel at Friday, October 29, 2010

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

Posted by raetsel at Thursday, October 14, 2010

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

Posted by raetsel at Sunday, September 26, 2010

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

Posted by raetsel at Thursday, September 16, 2010

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

Posted by raetsel at Thursday, September 02, 2010

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

Posted by raetsel at Saturday, August 21, 2010

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)

Posted by raetsel at Saturday, August 14, 2010

.....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?

Posted by raetsel at Saturday, August 07, 2010

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.













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