Haematology-wise things are looking pretty good. The GvHD is back under control, the steroid dose is coming down again - prednisolone 3mg currently - I'm in remission, haemoglobin should be rising with the EPO injections and apart from a load of residual side effects from last year's chemotherapy there are no real problems. The 'residual side effects' are just a bunch of unpleasant nuisances.
However the fatigue is gettting worse and I'm needing a rest most afternoons, something I haven't needed for many months. Going upstairs makes me SOB. The upshot is Karine took me along to the GP last week and the result is a referral back to cardiology. When they fitted a pair of stents in February they noted a couple of other arteries with some narrowing so maybe one of these has narrowed some more or perhaps one of the stents is in trouble - ODTAA - 'one darn thing after another'!
*Jackson Browne from his superlative 1977 album "Running on Empty" - track 7
Sunday 14 August 2016
Saturday 6 August 2016
D+12 months - "Needles and Pins" *
A better week but I feel like a pin cushion! The GvHD has settled down with the steroids so I'm now dropping the dose 1mg per week over the next few weeks - all being well!
The haemoglobin has risen a little, presumably because of the EPO injections.
The Bone Marrow aspirate of three weeks ago has come back negative meaning I'm still in remission.
The 'pin cushion' is because on Thursday Karine and I went to clinic and I had the usual blood tests. Thursday is also EPO injection day (twice weekly). Then in the afternoon we went to the GP surgery for my first lot of infant injections, four injections, two in each upper arm. Woke in the night with sore shoulders, not surprising really.
Karine and I have had a few days in Bath visiting our friends Tom and Jane. I'm still very fatigued much of the time so Karine did most of the driving. The weather was rather damp but that didn't dampen our spirits. Tom and I managed a short walk by the Kennet and Avon canal in Bath. Well, Tom just strolled along I was the one 'managing'. Karine met up with an old friend from Nottingham who had moved to Bath some years ago and she and Jane indulged in some retail therapy.
The following day we visited an ancient priory in Bristol to look at a marble bust done by my great great great grandfather. We have been gradually tracking down his work over the past five years or so. It is is scattered all over the country, there is still a lot more to see.
Finally the walk in mid-September is gradually coming to fruition. We've called it a 'sponsored' walk on the leaflet but the idea is that anyone who would like to support the haematology research work going on in Nottingham can contribute via the Just Giving page. It doesn't matter whether you can go on the walk or not. Also, you can give anonymously if you wish. The link is.......
* The Searchers - "Needles and Pins" - 1964 single
The haemoglobin has risen a little, presumably because of the EPO injections.
The Bone Marrow aspirate of three weeks ago has come back negative meaning I'm still in remission.
The 'pin cushion' is because on Thursday Karine and I went to clinic and I had the usual blood tests. Thursday is also EPO injection day (twice weekly). Then in the afternoon we went to the GP surgery for my first lot of infant injections, four injections, two in each upper arm. Woke in the night with sore shoulders, not surprising really.
Karine and I have had a few days in Bath visiting our friends Tom and Jane. I'm still very fatigued much of the time so Karine did most of the driving. The weather was rather damp but that didn't dampen our spirits. Tom and I managed a short walk by the Kennet and Avon canal in Bath. Well, Tom just strolled along I was the one 'managing'. Karine met up with an old friend from Nottingham who had moved to Bath some years ago and she and Jane indulged in some retail therapy.
The following day we visited an ancient priory in Bristol to look at a marble bust done by my great great great grandfather. We have been gradually tracking down his work over the past five years or so. It is is scattered all over the country, there is still a lot more to see.
Finally the walk in mid-September is gradually coming to fruition. We've called it a 'sponsored' walk on the leaflet but the idea is that anyone who would like to support the haematology research work going on in Nottingham can contribute via the Just Giving page. It doesn't matter whether you can go on the walk or not. Also, you can give anonymously if you wish. The link is.......
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