Just been to haematology clinic. The main problem is my insides which seem to be getting worse not better, now with added blood and mucous. My weight is down about a kilo, appetite not great and feeling much more tired.
Prof Russell has left the immunosuppressant dose alone and added in a steroid and another antibiotic. This could be an infection or GvHD (graft versus host disease) or a drug side effect (not so likely) or something completely different! We didn't get round to discussing blood counts etc except to say that my liver is a little bit 'off' which could mean almost anything.
I'm back in clinic on Monday as well as Thursday next week in order to check that the situation is not deteriorating too much. Unless it settles quickly it may take a little time to work out what is going on. I've cancelled rehab for today, too much hard work!
Went to ENT clinic two days ago and the outcome is a hearing aid for my right ear. So now I wait to go back to have a mold of my right ear canal taken, then back again for the actual fitting. At least this is a simple and safe solution.
Having been doing so well it is not fun slipping back like this. I have lost some of the high hopes I had that I would continue to steadily improve. I know I had been warned there would setbacks but it still isn't easy. Have started to 'live' a little and do a few normal things it feels as though I'm going back to just 'existing' again. The uncertainty about the diagnosis definitely doesn't help either. I need to be patient and focus on the positives. I'm still doing a lot better than average. I'm lucky to be here. It's early days.
A funny thing, my eyebrows have started to grow back, very pale and white, so they don't really show much but at least one bit of me is beginning to behave normally again!
* Pink Floyd - "Dark Side of the Moon" - 2nd track
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