T + 527 Bumbling Along

Posted by raetsel at Thursday, February 25, 2010

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


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

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

Speaking of which....

NaNoWriMo - Reunion

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

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

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

Oakwood Primary School

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

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

T + 519 Just Give A Little

Posted by raetsel at Wednesday, February 17, 2010

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


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

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

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

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

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

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

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

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

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

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

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

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

Company Quack

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

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

Just Giving & NaNoWriMo

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

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

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

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

T + 514 Live From The Urban Coffee Company

Posted by raetsel at Friday, February 12, 2010

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

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

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

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

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

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

T + 507 Every Silver Lining has a Cloud

Posted by raetsel at Friday, February 05, 2010

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


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

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

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

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

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

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

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

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

My next appointment with him is in two months time.

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

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

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