MCL and Me

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...