T+436 Winner, Winner, Chicken Dinner!

Posted by raetsel at Thursday, November 26, 2009


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


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

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

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

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

NaNoWriMo Winner

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

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

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

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

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

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

New iMac

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

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

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

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

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

T + 428 Keep Working the Jab (PG)

Posted by raetsel at Wednesday, November 18, 2009

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

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

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

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

1 having a red or flushed complexion : a stout man with a florid face.2 elaborately or excessively intricate or complicated : florid operatic-style music was out.3(of language) using unusual words or complicated rhetorical constructions : the florid prose of the nineteenth century.4 Medicine (of a disease or its manifestations) occurring in a fully developed form : florid symptoms of psychiatric disorder.
He said I was ok to use over the counter-meds but that they can take ages to get rid off. It's been a while since we have had any gruesome pics so I knew you'd appreciate seeing my big toe.
At least I'm not going swimming so I don't have to wear those strange little socks you used to have to wear as a kid. They now seem remarkably prescient forerunners of the modern sneaker-sock, back then they were weird now they are fashionable albeit for a different purpose.
It does sometimes feel like I end up treating these consultations like a session with my GP but I have learnt that there can be all sorts of things that might seem irrelevant, unrelated or unaffected by my treatment that actually do need to be checked. The use of over the counter medicines is one of them.
Last time I saw the doc I had some problems with shoulder and elbow twinges but I am pleased to report they have died down now.
My blood counts were basically ok though my haemoglobin had fallen to 10.4 from just under 12 last time. The doc said it can do that from time to time and indeed this had happened with me over the last few months even though I'd not needed a transplant since March. I certainly haven't been feeling too bad and have been able to go for walks at lunchtime etc. so hopefully its not too serious and the trend reverses. It is something they will keep an eye on over the coming weeks.
He then said that my red cells had been getting bigger over the last few tests. A little puzzled at his wording of cells getting bigger when my count was dropping I asked him what he meant by bigger. Turns out he meant exactly what it says on the tin. My red cells are getting physically bigger in volume. One of the measurements they do is the average red cell volume and this has been getting bigger. This is actually a sign of immature red cells and could be caused by breaking them down too quickly or having a shortage of vitamin B12.

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

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

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

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

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

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













T + 422 Off by one

Posted by raetsel at Thursday, November 12, 2009

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


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

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

NaNoWriMo

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

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

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

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


T + 413 Write On!

Posted by raetsel at Wednesday, November 04, 2009

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


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

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

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

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

On that topic...

NaNoWriMo

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

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

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

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

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

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

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

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

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

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