The FISH result is back - this is the bone marrow test that detects tiny mounts of Leukaemia cells not visible down the microscope - and it was negative so I have a reprieve till the next bone marrow test in late April.
Meanwhile the GvHD is misbehaving a bit so Prof has suggested increasing the steroids if it doesn't settle down in the next few days. Today I've put up the dose a little, too soon to see any effect, that will take a day or two; fingers (and legs!) crossed.
Karine and I have been taking advantages of the recent sunny days and have done several walks in local parks which make me realise just how weak my muscles are. The rehab sessions in the gym are hard work, no gain without pain I suppose. Fatigue is a major enemy and the GvHD seems to exacerbate this.
Last night we had a meal at Patrick & Anne's house to celebrate our sister Lucy's birthday. I think this is the first time all eight of us have been together since the autumn of 2014. Anne and Patrick put on a delicious meal for us. My wonky taste buds did their best to spoil it but failed!
* Mark Knopfler - "Kill To Get Crimson" track 10
Saturday, 20 February 2016
Monday, 15 February 2016
D+207 - "Big Money* " or perhaps "Fields of Gold** "
The Concert at St Mark's Hall yesterday afternoon was a great success. A huge thank you to everyone who helped with selling tickets, setting up the hall, baking cup cakes and serving during the interval. There was an audience of 60 people. The chief organisers were Lucy & Karine. The programme was put together mainly by Lucy, Mike and Tim with some input from other members of their family. Mike did the recitation for the second item and Tim, Lucy, Neil & Deborah played beautifully. It was great to see so many friends and family all in one place. We raised over £800 for the Nottingham Maggie's centre at the City Hospital.
Last week in clinic Prof continued to reduced my immunosuppression and so far so good - fingers crossed. I'm down to about 150 tablets a week which is a big improvement on the 240 odd I was on a few weeks ago.
My exercise tolerance is gradually improving. At the weekend I did a complete circuit of our local park, the first time I've managed this since the autumn. This morning was a beautiful sunny winter's day and Karine and I walked around Mill Lakes in Bestwood village. There were plenty of birds as always and Karine spotted a crane.
Fatigue is still an intermittent problem. This seems to be almost obligatory at this stage judging by other people's experiences so it is just something to be borne, no point in grumbling about it. An early definition of 'a patient' is "one who endures hardship without complaint" which seems very appropriate at the moment, an ideal to be aimed for.
The Mindfulness course Karine and I have started attending at the Maggie Centre aims to help us to live more in the moment and appreciate the positives rather than worry about the future and the past.
* Philip Lavil - "Calypso" track 2
** Sting - "Ten Summoner's Tales" track 3
Last week in clinic Prof continued to reduced my immunosuppression and so far so good - fingers crossed. I'm down to about 150 tablets a week which is a big improvement on the 240 odd I was on a few weeks ago.
My exercise tolerance is gradually improving. At the weekend I did a complete circuit of our local park, the first time I've managed this since the autumn. This morning was a beautiful sunny winter's day and Karine and I walked around Mill Lakes in Bestwood village. There were plenty of birds as always and Karine spotted a crane.
Fatigue is still an intermittent problem. This seems to be almost obligatory at this stage judging by other people's experiences so it is just something to be borne, no point in grumbling about it. An early definition of 'a patient' is "one who endures hardship without complaint" which seems very appropriate at the moment, an ideal to be aimed for.
The Mindfulness course Karine and I have started attending at the Maggie Centre aims to help us to live more in the moment and appreciate the positives rather than worry about the future and the past.
* Philip Lavil - "Calypso" track 2
** Sting - "Ten Summoner's Tales" track 3
Wednesday, 10 February 2016
D+202 - "I'm Still Standing* "
The angiogram on 1st of February went very well. It took about an hour and as is normal I was awake during the procedure. The upshot is that the consultant put two stents into a coronary artery (the LAD for those interested) and that seems to have largely stopped the breathlessness. The angina has gone away and when I exercise the limiting factor is my lack of fitness rather than chest symptoms.
Yesterday Karine & I went for a walk with one of my former partners (GP partner that is!) in Wollaton park in Nottingham and managed a complete circuit without a problem, something that was impossible two weeks ago. The weather was glorious, a cold crisp sunny winter's day.
Meanwhile weekly visits to the haematology stem cell transplant clinic continue. One of the immunosuppressant drugs has been reduced a little further last week. Unfortunately my GI tract doesn't like this so I'm not sure where we going from here. This same drug is upsetting my kidneys as well as damping down the stem cell graft so there are good reasons for reducing the dose. It's back to clinic tomorrow for blood tests and then to see Prof.
This Sunday afternoon is the concert in aid of the Nottingham Maggie's Centre. The Milner Quartet (named after my mum) are playing Haydn's the Lark quartet and Dvorak's American quartet plus a lighthearted piece of words and music put together by my sister and brother-in-law recounting our 'adventures' with Leukaemia. The concert is at 3pm at St Marks Church Hall, de Vere Gardens, Woodthorpe, NG5 4PH. There will be refreshments during the interval.
* Elton John, Too Low for Zero, second track
Yesterday Karine & I went for a walk with one of my former partners (GP partner that is!) in Wollaton park in Nottingham and managed a complete circuit without a problem, something that was impossible two weeks ago. The weather was glorious, a cold crisp sunny winter's day.
Meanwhile weekly visits to the haematology stem cell transplant clinic continue. One of the immunosuppressant drugs has been reduced a little further last week. Unfortunately my GI tract doesn't like this so I'm not sure where we going from here. This same drug is upsetting my kidneys as well as damping down the stem cell graft so there are good reasons for reducing the dose. It's back to clinic tomorrow for blood tests and then to see Prof.
This Sunday afternoon is the concert in aid of the Nottingham Maggie's Centre. The Milner Quartet (named after my mum) are playing Haydn's the Lark quartet and Dvorak's American quartet plus a lighthearted piece of words and music put together by my sister and brother-in-law recounting our 'adventures' with Leukaemia. The concert is at 3pm at St Marks Church Hall, de Vere Gardens, Woodthorpe, NG5 4PH. There will be refreshments during the interval.
* Elton John, Too Low for Zero, second track
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