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
Monday, 15 February 2016
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
Wednesday, 27 January 2016
D+188 - "Hearts and Bones* "
Well, I've had the pre-op heart check up, ECG BP and some questions so it's now just a matter of waiting for next Monday's angiogram to see what they find. I'll probably have one night in hospital and be thrown out next Tuesday - a new man!
Monday morning was busy. After Cardiology we had an hour at the Maggie's Centre before it was time for a visit to haematology and a routine three monthly bone marrow aspirate - ouch! With a bit of luck we'll get the result at Thursday's weekly clinic visit (tomorrow morning). More waiting!
The GvHD is still playing up despite doubling the ciclosporin last week. I'm not sure how quickly it should work but I was expecting it to have done something by now so it is over to Prof tomorrow. It looks like the steroids may need increasing :-(
Karine has been selling tickets for the concert on February 14th, see the blog of 4th January for full details. There is still plenty more to sell and all the money goes to the Nottingham Maggie's Centre at the City Hospital. Please do come if you can, it should be a lovely afternoon including some homemade Valentine's day refreshments!
* Paul Simon - 1983 album of the same name
Monday morning was busy. After Cardiology we had an hour at the Maggie's Centre before it was time for a visit to haematology and a routine three monthly bone marrow aspirate - ouch! With a bit of luck we'll get the result at Thursday's weekly clinic visit (tomorrow morning). More waiting!
The GvHD is still playing up despite doubling the ciclosporin last week. I'm not sure how quickly it should work but I was expecting it to have done something by now so it is over to Prof tomorrow. It looks like the steroids may need increasing :-(
Karine has been selling tickets for the concert on February 14th, see the blog of 4th January for full details. There is still plenty more to sell and all the money goes to the Nottingham Maggie's Centre at the City Hospital. Please do come if you can, it should be a lovely afternoon including some homemade Valentine's day refreshments!
* Paul Simon - 1983 album of the same name
Thursday, 21 January 2016
D+182 - "High Hopes * "
Thursday is clinic day. Last week my steroids were reduced slightly and a couple of days later the GvHD of the colon started to wake up. Nothing like as badly as back in September and October but nevertheless a warning that it had been dormant rather than cured. This week we saw Prof and he has doubled the Ciclosporin to try and clobber it - that's a rather technical clinical term by the way!
The next couple of weeks will be quite busy medically. On Monday there is a pre-op check for the heart trouble followed by a bone marrow aspirate - it is six months since the transplant and I have an aspirate every three months for the first year as part of the Figaro trial of a new treatment regime for Stem Cell Transplant Conditioning chemotherapy . This will be the sixth aspirate - I think! Not sure what happens after the twelve month one.
We should get the main preliminary results of the aspirate at the Thursday haematology clinic on the 21st. Then a week on Monday, February 1st, there is the angiogram and hopefully they will be able to fix whatever they find. In the meantime the GvHD should be calming down. It's all go!
We've been to rehab the last two weeks, me to do a little exercise and Karine to keep an eye on me! The anti-angina medication seem to be working so I'm able to exercise gently which is great. After the angiogram I should be able to ditch some of this medication.
We've had a visit from some friends from York last week and had an afternoon catching up and putting the world to rights! Andy had trained in our practice just after I had joined in the mid 1980s and we have been caravanning in Yorkshire several times over the intervening years. They ended up staying longer than intended and had supper with us before heading back to York, all in all a lovely afternoon and evening.
Later in the week we did a short walk with another retired doctor friend, Sue, walking from Bestwood village from the old mine-head winding house into Bestwood woods and back and she treated us to lunch afterwards.
The minute the sun shines Karine suggests a gentle trot around the block and with the current tablet regime I am able to manage this even when the temperature is close to zero. I am looking forward to having the heart problem fixed and being to improve my physical fitness. Here's hoping! Roll on the next two weeks.
* Pink Floyd - "The Division Bell" - track 11
The next couple of weeks will be quite busy medically. On Monday there is a pre-op check for the heart trouble followed by a bone marrow aspirate - it is six months since the transplant and I have an aspirate every three months for the first year as part of the Figaro trial of a new treatment regime for Stem Cell Transplant Conditioning chemotherapy . This will be the sixth aspirate - I think! Not sure what happens after the twelve month one.
We should get the main preliminary results of the aspirate at the Thursday haematology clinic on the 21st. Then a week on Monday, February 1st, there is the angiogram and hopefully they will be able to fix whatever they find. In the meantime the GvHD should be calming down. It's all go!
We've been to rehab the last two weeks, me to do a little exercise and Karine to keep an eye on me! The anti-angina medication seem to be working so I'm able to exercise gently which is great. After the angiogram I should be able to ditch some of this medication.
We've had a visit from some friends from York last week and had an afternoon catching up and putting the world to rights! Andy had trained in our practice just after I had joined in the mid 1980s and we have been caravanning in Yorkshire several times over the intervening years. They ended up staying longer than intended and had supper with us before heading back to York, all in all a lovely afternoon and evening.
Later in the week we did a short walk with another retired doctor friend, Sue, walking from Bestwood village from the old mine-head winding house into Bestwood woods and back and she treated us to lunch afterwards.
The minute the sun shines Karine suggests a gentle trot around the block and with the current tablet regime I am able to manage this even when the temperature is close to zero. I am looking forward to having the heart problem fixed and being to improve my physical fitness. Here's hoping! Roll on the next two weeks.
* Pink Floyd - "The Division Bell" - track 11
Friday, 15 January 2016
D+176 - "From Me To You* "
It is now nine months since I was diagnosed with AML and during this time my greatest support has come from Karine so this is by way of a rather incomplete inadequate and somewhat incoherent thank you.
In the darkest moments of late April and throughout May of last year when we didn't know whether the treatment would get me into remission we managed to celebrate our wedding anniversary and my birthday together in a small isolation room on the ward. She would then return to an empty house.
We were both carrying a burden, related but different.
When food was a penance because it all tasted horrible she kept on providing endless different variations of our favourite dishes, bringing them into hospital piping hot everyday. When I was having spikes and rigors because of the lack of immunity she was there providing comfort. When we go to outpatients she is my second ears and eyes, asking questions, collecting scripts, liaising with the transplant nurse, booking the next appointment, collecting me from the door when the weather is bad.
At home she recognises when I'm getting over tired (which at the moment is quite a lot of the time), she organises the shopping and the cooking, the maintenance of the house and every other chore that crops up. More importantly she organises the infection control. Assuming the Leukaemia doesn't relapse, infection is the biggest danger I face in the first year or so especially whilst still taking steroids and ciclosporin. My immune system remains rather crock and these drugs suppress it even further.
Most important of all is the psychological support. When I wonder how all this will end, when the fatigue and the multiple symptoms get me down, she is there to share the burden. Even just doing simple normal things together like going into a shop together are immensely helpful just because they are so normal.
We are both going to do a mindfulness course at the Maggie's Centre at the City Hospital starting in February, this is something Karine came across and enrolled us both in before Christmas. It should help us both to appreciate the positive things in life and the here and now and come to terms with the events of the last nine months.
To quote a few more Beatles singles, it's been 'A Hard Day's Night' 'Eight Days a Week', but with 'Help' 'We Can Work It Out' and 'Come Together'. 'All You Need Is Love' to get you through 'The Long and Winding Road'!
* Beatles - From Me To You - Their second number one single - 1963
In the darkest moments of late April and throughout May of last year when we didn't know whether the treatment would get me into remission we managed to celebrate our wedding anniversary and my birthday together in a small isolation room on the ward. She would then return to an empty house.
We were both carrying a burden, related but different.
When food was a penance because it all tasted horrible she kept on providing endless different variations of our favourite dishes, bringing them into hospital piping hot everyday. When I was having spikes and rigors because of the lack of immunity she was there providing comfort. When we go to outpatients she is my second ears and eyes, asking questions, collecting scripts, liaising with the transplant nurse, booking the next appointment, collecting me from the door when the weather is bad.
At home she recognises when I'm getting over tired (which at the moment is quite a lot of the time), she organises the shopping and the cooking, the maintenance of the house and every other chore that crops up. More importantly she organises the infection control. Assuming the Leukaemia doesn't relapse, infection is the biggest danger I face in the first year or so especially whilst still taking steroids and ciclosporin. My immune system remains rather crock and these drugs suppress it even further.
Most important of all is the psychological support. When I wonder how all this will end, when the fatigue and the multiple symptoms get me down, she is there to share the burden. Even just doing simple normal things together like going into a shop together are immensely helpful just because they are so normal.
We are both going to do a mindfulness course at the Maggie's Centre at the City Hospital starting in February, this is something Karine came across and enrolled us both in before Christmas. It should help us both to appreciate the positive things in life and the here and now and come to terms with the events of the last nine months.
To quote a few more Beatles singles, it's been 'A Hard Day's Night' 'Eight Days a Week', but with 'Help' 'We Can Work It Out' and 'Come Together'. 'All You Need Is Love' to get you through 'The Long and Winding Road'!
* Beatles - From Me To You - Their second number one single - 1963
Saturday, 9 January 2016
D+169 - "Affairs of the Heart* "
I've now had an echocardiogram which was normal but am still getting shortness of breath and central chest pain with exertion. Cardiology have been marvellous. The specialist Cardiology nurse has talked to one of the consultants and she actually came down to the haematology clinic and met Karine & I directly after we'd seen Prof for my weekly Haematology review. The upshot is an Angiogram with a view to fixing any problems with my coronary arteries that they see at the time. This will be on Monday 1st of February.
Haematologically things are going well. Prof continues to slowly reduce the steroids - so far so good! With a bit of luck I'll be off Prednisolone by the end of February and hopefully I will start to lose the cushingoid 'moon' and the extra chin face they are giving me.
* Fleetwood Mac - "Behind the Mask" - track 6
Haematologically things are going well. Prof continues to slowly reduce the steroids - so far so good! With a bit of luck I'll be off Prednisolone by the end of February and hopefully I will start to lose the cushingoid 'moon' and the extra chin face they are giving me.
* Fleetwood Mac - "Behind the Mask" - track 6
Monday, 4 January 2016
D+165 - "String Quartet from Whiskey Boot Hill* "
My sister Lucy and her youngest son Tim are part of a quartet and they are putting on a concert in Woodthorpe on St Valentine's day in aid of the Maggie's Centre at the City Hospital Nottingham.
Below is a copy of the poster. Please do support them if you can, it is for a very good cause. It should be a lovely way to spend an afternoon and it will be great to see lots of friends altogether.
Follow this link to learn more about the Maggie's Centre, Nottingham. They do a wonderful job supporting patients, families, carers and friends with all types of cancer.
* Neil Young - His first Album just called "Neil Young - Track 6
Below is a copy of the poster. Please do support them if you can, it is for a very good cause. It should be a lovely way to spend an afternoon and it will be great to see lots of friends altogether.
Follow this link to learn more about the Maggie's Centre, Nottingham. They do a wonderful job supporting patients, families, carers and friends with all types of cancer.
* Neil Young - His first Album just called "Neil Young - Track 6
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