Another Thursday gone by and Karine and I made another visit to Haematology Clinic. I've had a really good week since the glitch ten days ago, weight and energy levels back to how they were. Clinic resulted in several positive changes. Some of my preventative antimicrobial prophylaxis has been reduced. I'm now only taking two antiviral tablets per day as opposed to eight.
More importantly we are going to try reducing the prednisolone (steroid) again. The steroids are causing increasing side effects especially thinning of the skin below the knees. Every time I brush against something or knock myself I get a bruise or a graze so am really pleased to be trying to reduce it. I went to the optician the other day and have very early signs of cataracts which may just be age related but are a well known steroid side effect as well. Prednisolone is one of three steroids I'm taking but it is the one causing the majority of the problems.
So, a lower dose of Pred and no clinic appointment for a fortnight - brilliant! It feels like a gradual release from the hospital. The hospital has done an incredible job of caring over the past thirteen months. It's hard to think how it could have been better - oh, apart from the hospital food (provided by a private company - does the fact that it is outsourced make a difference? - hospital food was never great when I was a junior doctor thirty-five years ago but it seems worse than ever - perhaps I'm just more fussy).
Anyway, reducing the frequency of hospital visits brings a strong sense of relief, a feeling of independence, a feeling of freedom from the hospital and from leukaemia, a return to (normal) life. Life is no longer measured out in hospital appointments in quite the way it has been since the transplant last July. Nevertheless follow up is for life and some of the medication is lifelong too, a small price to pay for having a life.
Another step along the road to normality is permission to socialise more (such as going to the cinema, using public transport etc) and a relaxation of many of the dietary restrictions, so soft boiled eggs and some soft cheeses are back on the menu. All in all a very positive visit - no more 'glitches please!'
A reminder:- the walk in September on the 17th & 18th is going ahead. Karine & I with Lucy & Mike are going to have great fun doing a recce of the whole route over the next couple of months.
*Donovan - from the album "What's been Did and What's Been Hid" - track 6
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