MCL and Me

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.

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 ...

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 Jacke t. 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...

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 wri...

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...

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 Create...

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 ...

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 stil...

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 the...

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.

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 ma...

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 incr...

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...

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 ...

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 afte...

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 day...

.....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 bloo...

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 a...