Thursday, October 01, 2015
Tuesday, September 29, 2015
Today is my 87th birthday, with thanks to the NHS and particularly King's College Hospital for keeping me upright still. As my family are aware, I expect to die around July 2016 but they all say I will continue past that horizon. My feeling about it is that quality of life is better than quantity of life, so its fine to step out of Samsara while I still have my marbles, eyesight and reasonable mobility. (the miracle cure for macular degeneration isn't likely to be available for another five years, by which time I will be long gone)
Today we had a stairlift installed, because although I can still manage the stairs, its with increasing difficulty, and I didn't want to wait until one day I get stuck. Luckily its only necessary to navigate stairs in the House to get to the W rooms; otherwise the route to the places on different floors there are all accessible by lift.
PS we just watched a TV programme about two people with terminal illnesses who donated their bodies for medical research. One of them had a good deal of pain at the end, and once again I wondered how those who are against assisted dying can square their consciences with the fact that palliative care doesn't work for one in five of the terminally ill. I certainly hope I'm not one of the 20%, and that when I do come to the end it will be at home, and that I can avoid too much dramatics.
Monday, September 28, 2015
A visit to Dr M to get her advice about the ulcer on my ankle, which has lasted since June. Her colleague had prescribed a week of antibiotics at the beginning of September, and I was supposed to go back if that didn't clear it up. I missed that, but this time we have a telephone consultation next Monday, and presumably Dr M will then add another week if necessary.
Sunday, September 20, 2015
Sal Brinton, President of the Liberal Democrats, suggests in today's Independent on Sunday, that there should be a retirement age of 75 or 80 for membership of the House of Lords. Its my 87th birthday in a week's time, and there are three other LibDem Members who are 87 in October - Dick Taverne, born October 18; Bill Rodgers, born October 28, and Geoff Tordoff, born October 11. Maybe the House could manage without us, but I made a public declaration on my 80th birthday that I was never going to retire. If its any comfort to Sal, I expect Myelofibrosis to catch up with me before I get to 88!
Friday, September 18, 2015
Last nine blood test readings
Two units of blood transfused September 10 and 11 returned Hb to over 100, and platelets are comfortably within the normal range. However, with hydroxycarbamide three times a week, Hb could be expected to fall back to the low 80s by the time of the next haematology appointment on October 21, so that two units of blood would be needed from now on every eight weeks if the underlying conditions remain the same. It looked as though something had changed after July 3, when Hb had been stable for 7 tests but then dropped steeply before the next reading on September 10. But there is evidently no algorithm for calculating what the hydroxycarbamide dose should be to optimise the levels of Hb and Plt.
Monday, September 14, 2015
Chineke will help to encourage young BME people to play classical music. This performance at the Royal Festival Hall was a sell-out to a hugely enthusiastic audience, so there is every reason to hope the orchestra will be a fixture in the musical calendar.
Friday, September 11, 2015
I was convinced that my haemoglobin had dropped, so I persuaded King's to do a blood test half way between appointments at haematology outpatients and sure enough it had fallen to 81. Two pouches of blood were prescribed starting at 14.00 yesterday, but when I arrived they weren't ready. The first pouch wasn't started until 16.30, finishing at 19.35, so I had to come back for the second at 08.30 this morning.
As a pouch takes roughly three hours they wouldn't have been able to fit the second one in even if they had started promptly at 14.00. There is also half an hour or so getting the canula into the arm - it took three goes with the first pouch - and fetching the pouch from the blood bank.