Started feeling rough earlier in the week so ended up in Haematology Day Case Unit in the middle of the week having blood tests. The upshot of this was back to hospital with another dose of septicaemia, the third episode in about six or seven weeks. The antibiotics clear it temporarily but don't stop it coming back. This time I'm on one of the haematology wards thank goodness so the nurses all understand what is going on, standards of hygiene are very very high (this is the stem cell transplant ward) and I have my own room with an en suite shower room, so some peace and quiet at night.
Every time Karine and I plan anything it seems that events overtake us. My sister had offered us the use of her cottage in Ashford-in-the-Water and we had thought of having two nights there early next week - ho hum, dream on! "We are such stuff as dreams are made on" as someone once said! (WS - The Tempest) - well it is 400 years since his death and of course his birthday as well!
Meanwhile back in the real world the plan now is to try a light therapy called ECP, Extra Corporeal Photophoresis. The idea is to take some blood, about a pint, spin off the white cells and treat them with a drug which is then activated by UV light and given back to me. The drug will then kill off some of the cells that are attacking my insides and reprogramme my bone marrow not to go on producing these cells in the future. That's the theory anyway. This will be twice a week for eight weeks initially. There isn't a great deal of published research on ECP for GvHD of the gut but it appears to have about a 50% chance of working.
The day I came in here I had another bone marrow aspirate. As usual the initial result will be back in about a week and the detailed results in about three weeks - fingers crossed!
* Shakespeare - Henry V - Act III
Saturday, 23 April 2016
Saturday, 16 April 2016
D+273 - "Give Me Strength* "
Home again a week last Thursday the 7th after 10 days in the City Hospital - hooray!
My Hb has risen to 13 and stayed there for at least a week, this is a rise of about 30% in the last 7 weeks or so - thanks to the Erythropoetin ('Epo' to various athletes in years gone by)! The problem is that the platelets have dropped to below 50 and I keep getting small bruises appearing. We saw Prof in clinic two days ago and the Epo has been stopped because sometimes as the Hb rises the platelets fall - a sort of seesaw relationship. I'm not too sure why this should be but it means a return visit to clinic next week to check that the platelets haven't fallen any further. So much for going onto two weekly visits!
My weight has crept back up to the pre-septicaemia levels of early March - about 4-5kg below my pre-leukaemia weight. Last weekend it was brought home rather forcibly that this represents 4-5kg of not just any old tissue or whatever but loss of muscle. Karine and I were in a local park with Charlotte and Stewart and their two girls, Bethany and Eden.
There is an outdoor gym and Stew jumped up on to a high bar and did a few pull ups. I'm a little taller than him and thought I could do the same, some hope! I could nearly reach the bar whilst standing on the ground but couldn't even jump the couple of inches needed to reach it. I hung from a slightly lower bar next door but couldn't begin to do any pull ups at all. It's going to take a lot more work and time to get back to anything like the pre-leukaemia level of rather modest fitness! They tell you it will take about two years to recover from the chemotherapy and the transplant - sadly it seems they were right. :-( So, it's back to the exercise bike, upper body exercises and weekly visits to the hospital gym - walking on the level just isn't enough.
* Eric Clapton - "461 Ocean Boulevard" - track 2
My Hb has risen to 13 and stayed there for at least a week, this is a rise of about 30% in the last 7 weeks or so - thanks to the Erythropoetin ('Epo' to various athletes in years gone by)! The problem is that the platelets have dropped to below 50 and I keep getting small bruises appearing. We saw Prof in clinic two days ago and the Epo has been stopped because sometimes as the Hb rises the platelets fall - a sort of seesaw relationship. I'm not too sure why this should be but it means a return visit to clinic next week to check that the platelets haven't fallen any further. So much for going onto two weekly visits!
My weight has crept back up to the pre-septicaemia levels of early March - about 4-5kg below my pre-leukaemia weight. Last weekend it was brought home rather forcibly that this represents 4-5kg of not just any old tissue or whatever but loss of muscle. Karine and I were in a local park with Charlotte and Stewart and their two girls, Bethany and Eden.
There is an outdoor gym and Stew jumped up on to a high bar and did a few pull ups. I'm a little taller than him and thought I could do the same, some hope! I could nearly reach the bar whilst standing on the ground but couldn't even jump the couple of inches needed to reach it. I hung from a slightly lower bar next door but couldn't begin to do any pull ups at all. It's going to take a lot more work and time to get back to anything like the pre-leukaemia level of rather modest fitness! They tell you it will take about two years to recover from the chemotherapy and the transplant - sadly it seems they were right. :-( So, it's back to the exercise bike, upper body exercises and weekly visits to the hospital gym - walking on the level just isn't enough.
* Eric Clapton - "461 Ocean Boulevard" - track 2
Tuesday, 5 April 2016
D+257 - "the days are long, the years are short* "
It's been decided that I should have ten days of IV antibiotics so I'm in hospital till Thursday - two days time. I'm being allowed out during the day but have to be here for the three times a day antibiotics, for the phlebotomist and for the Drs. There is lots of hanging around and much boredom.
I spend my time reading, listening to Radio 4, sleeping, chatting with other patients (I'm the only non-urology patient on the ward as far as I know) and talking on the phone. Karine organised internet access which has been a lifesaver. Haematology patients have access because we all tend to have extended stays in hospital and quite long periods of isolation. This is funded by a haematology voluntary support group and I am very grateful to them.
It was Charlotte's birthday yesterday and Alexi and Lucy came down from Newcastle at the weekend partly for a celebration that Lucy's family were having and partly to see us. Karine and I had a great time on Sunday playing in the garden with Bethany and Eden, Charlotte and Stewart and Alexi & Lucy all afternoon - a precious time together.
* Saying amongst junior doctors quoted by the late Dr Paul Kalanithi in his book "When Breath Becomes Air"
I spend my time reading, listening to Radio 4, sleeping, chatting with other patients (I'm the only non-urology patient on the ward as far as I know) and talking on the phone. Karine organised internet access which has been a lifesaver. Haematology patients have access because we all tend to have extended stays in hospital and quite long periods of isolation. This is funded by a haematology voluntary support group and I am very grateful to them.
It was Charlotte's birthday yesterday and Alexi and Lucy came down from Newcastle at the weekend partly for a celebration that Lucy's family were having and partly to see us. Karine and I had a great time on Sunday playing in the garden with Bethany and Eden, Charlotte and Stewart and Alexi & Lucy all afternoon - a precious time together.
* Saying amongst junior doctors quoted by the late Dr Paul Kalanithi in his book "When Breath Becomes Air"
Friday, 1 April 2016
D+253 - "we get better but we never get well* "
Still in hospital, feeling better but tired from lack of sleep. I'm on a urology ward - for the moment - the noise level is best described as 'variable'. The anaerobic tics are doing their work (that should have ready 'antibiotics' but a combination of my erratic typing and the autocorrect came up with something much better and much more appropriate, E Coli is a type of anaerobic bug!).
Eight months post transplant and I had hoped that by now I would be beginning to move on from leukaemia and transplants and looking back at some of the blogs from last summer things are not the same as they were then, thank goodness. However I hadn't anticipated how much of a problem GvHD would be or how much medication I would still need let alone these episodes of septicaemia. At the moment there is no end in sight to the GvHD or to the medication I still need to take - currently down to about 160 tablets a week.
Infection and relapse are the two big threats. I've recently read of someone whose AML relapsed after five years so the proverbial 'woods' go on for quite some way yet - I'm not sure if this person had had a transplant or not - transplants reduce the risk of relapse significantly. The sunlit uplands on the other side of the woods are some way off yet.
Karine has been bringing me food whilst I've been in here, an absolute godsend, and it looks like I will be in for another three to six days depending on how long microbiology recommend I should remain on IV 'anaerobic tics' ;-)
*Paul Simon - Hearts and Bones - a line from "Allergies", the opening track. A much underrated Paul Simon album from 1983 - some lovely songs, beautifully arranged and sung especially the tribute to John Lennon and 'Train in the Distance'
Eight months post transplant and I had hoped that by now I would be beginning to move on from leukaemia and transplants and looking back at some of the blogs from last summer things are not the same as they were then, thank goodness. However I hadn't anticipated how much of a problem GvHD would be or how much medication I would still need let alone these episodes of septicaemia. At the moment there is no end in sight to the GvHD or to the medication I still need to take - currently down to about 160 tablets a week.
Infection and relapse are the two big threats. I've recently read of someone whose AML relapsed after five years so the proverbial 'woods' go on for quite some way yet - I'm not sure if this person had had a transplant or not - transplants reduce the risk of relapse significantly. The sunlit uplands on the other side of the woods are some way off yet.
Karine has been bringing me food whilst I've been in here, an absolute godsend, and it looks like I will be in for another three to six days depending on how long microbiology recommend I should remain on IV 'anaerobic tics' ;-)
*Paul Simon - Hearts and Bones - a line from "Allergies", the opening track. A much underrated Paul Simon album from 1983 - some lovely songs, beautifully arranged and sung especially the tribute to John Lennon and 'Train in the Distance'
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