Showing posts from February, 2010

T + 527 Bumbling Along

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.

T + 519 Just Give A Little

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…

T + 514 Live From The Urban Coffee Company

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 t…

T + 507 Every Silver Lining has a Cloud

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 a…