At last I have found time to tell you about the transplant timetable ...
The transplant is scheduled for Thursday 23rd June. At the end of May/beginning of June I have several tests to make sure I am fit enough for the transplant. One week before it I am admitted to Ambicare for chemo (the 15th June).
It is after the transplant that my problems begin. I will be neutropenic, and have no way of making blood cells for myself, until donor cells have started generating. This normally takes between 6 and 22 days, and the chance of infection is high - for me a racing certainty I expect. This time is spent as an inpatient of course. When my counts recover sufficiently (i.e. my donor cells are working), they will send me home. They say it takes 6 to 12 months to fully recover from a transplant.
For the first three months I will attend a weekly outpatient clinic. This drops to biweekly, then monthly, then quarterly and so on. I don't think we ever say "goodbye"! For the first three months the hospital provides transport to the clinic. It says in the leaflet that it is not unusual to be readmitted to hospital during this time. I also take a drug called Cyclosporine that suppresses the donor immune system. It means that although I will not be neutropenic, and so able to fight bacterial infection, it leaves me more prone to viral infection.
With a fair wind I could be home at the end of July, and then be reasonably OK for the beginning of November. I doubt I will be playing golf in 2011 though :(
I am very excited, and at the same time very nervous. The immediate post-transplant period is surely the highest hurdle I have left to clear. I hope I will be strong enough.
- Posted using BlogPress from my iPad
Saturday, 7 May 2011
Friday, 6 May 2011
The fluids continue
Oops, I forgot to write a blog post, so I'll be brief ...
Sleep is difficult because I am weeing so much. And I have to record the quantity and PH each time, regardless of the hour.
Today I had the asparaginase. And the fluids continue; I am still carrying around the backpack. My taste is altered - all fizzy drinks taste bitter.
I will try and write more tomorrow.
- Posted using BlogPress from my iPad
Sleep is difficult because I am weeing so much. And I have to record the quantity and PH each time, regardless of the hour.
Today I had the asparaginase. And the fluids continue; I am still carrying around the backpack. My taste is altered - all fizzy drinks taste bitter.
I will try and write more tomorrow.
- Posted using BlogPress from my iPad
Thursday, 5 May 2011
Fluids
They were not kidding when they said this treatment involves a lot of fluids!
Last night the fire alarm in the hotel went off at 3am - it was a false alarm. 30 minutes later just as I was nodding off it went off again. Despite this I still got about 6 hours sleep.
In Ambicare, they first hooked me up to a litre bag of fluid. They then explained that I must record my fluid balance (intake versus urinate), and that I must measure the PH of my urine each time. If it is too low I take some sodium bicarbonate capsules. If it is very low I must go in and get IV sodium bicarbonate. I hope this does not happen in the middle of the night! For the next few days I wee into a measuring jug.
During the next few days I will be continually hydrated with saline that contains extra minerals, to make sure I flush the methotrexate. I carry this fluid around in a backpack; currently it is full which is 3 litres of fluid, i.e. 3kg, plus the pump and power supply - it is quite heavy! There is enough play in the line to sleep with the bag next to the bed, but showering and bathing are not possible due to the position of the bath. Oh well!
The methotrexate is a nasty drug, and they did warn me I would feel a bit yukky, and I do. I am going to Prezzo with Rose tonight; I hope I will enjoy it.
It looks like the transplant details will have to wait a little longer.
- Posted using BlogPress from my iPad
Last night the fire alarm in the hotel went off at 3am - it was a false alarm. 30 minutes later just as I was nodding off it went off again. Despite this I still got about 6 hours sleep.
In Ambicare, they first hooked me up to a litre bag of fluid. They then explained that I must record my fluid balance (intake versus urinate), and that I must measure the PH of my urine each time. If it is too low I take some sodium bicarbonate capsules. If it is very low I must go in and get IV sodium bicarbonate. I hope this does not happen in the middle of the night! For the next few days I wee into a measuring jug.
During the next few days I will be continually hydrated with saline that contains extra minerals, to make sure I flush the methotrexate. I carry this fluid around in a backpack; currently it is full which is 3 litres of fluid, i.e. 3kg, plus the pump and power supply - it is quite heavy! There is enough play in the line to sleep with the bag next to the bed, but showering and bathing are not possible due to the position of the bath. Oh well!
The methotrexate is a nasty drug, and they did warn me I would feel a bit yukky, and I do. I am going to Prezzo with Rose tonight; I hope I will enjoy it.
It looks like the transplant details will have to wait a little longer.
- Posted using BlogPress from my iPad
Wednesday, 4 May 2011
Back to Ambicare
Ray stayed overnight, and after we said our goodbyes this morning, Rose took me into London, back to Ambicare. My final home weight was 84.8kg, so a gain of about 3.5kg or just over 7.5lb.
This cycle of chemo is called "intensification". It lasts 28 days, with only 4 treatment days; days 1 and 2, and days 15 and 16, which is a repeat of days 1 and 2.
The main drug administered on day 1 is methotrexate, a drug previously administered in very small doses intrathecally. This time a much larger dose is administered intravenously.; the problem is that it causes urine to become very acidic, which can damage the kidneys. To counteract this they give complimentary treatment to make your urine alkaline. This consists of some pills to be taken strictly every six hours, starting tonight ad midnight, and a lot of IV fluids to flush things through. It normally takes 72 hours for the drug to be flushed through the system. I think I will be carrying the fluid around in a rucksack, as it infuses slowly over the course of the day and night - I will find out tomorrow I guess!
The other drug administered on day 2/16 is PEG asparaginase, which I had on the first cycle. This should be a simple IV infusion for a reasonably short period of time.
The transplant team have gotten in touch with me, and given me information regarding the timetable for the transplant. I will reveal all in tomorrows post.
Now I just need to decide where to go for dinner!
- Posted using BlogPress from my iPad
This cycle of chemo is called "intensification". It lasts 28 days, with only 4 treatment days; days 1 and 2, and days 15 and 16, which is a repeat of days 1 and 2.
The main drug administered on day 1 is methotrexate, a drug previously administered in very small doses intrathecally. This time a much larger dose is administered intravenously.; the problem is that it causes urine to become very acidic, which can damage the kidneys. To counteract this they give complimentary treatment to make your urine alkaline. This consists of some pills to be taken strictly every six hours, starting tonight ad midnight, and a lot of IV fluids to flush things through. It normally takes 72 hours for the drug to be flushed through the system. I think I will be carrying the fluid around in a rucksack, as it infuses slowly over the course of the day and night - I will find out tomorrow I guess!
The other drug administered on day 2/16 is PEG asparaginase, which I had on the first cycle. This should be a simple IV infusion for a reasonably short period of time.
The transplant team have gotten in touch with me, and given me information regarding the timetable for the transplant. I will reveal all in tomorrows post.
Now I just need to decide where to go for dinner!
- Posted using BlogPress from my iPad
Tuesday, 3 May 2011
Last day at home
This is my last day at home beore I go back to London for more chemo. I will be treated in Ambicare, so I will be staying in the hotel once more, but it is still nothing to look forward to.
Whilst at home I have had a great time; seen plenty of friends, got stronger and heavier (now 84.4kg), had great food, and best of all spent some quality time with Rose. I suppose it is a glimpse of what life will be like after the transplant (whenever that will be), and I am hopefully cured. Until then, at the back of mind is always the fact that I have cancer.
Today I did some household chores (ironing, cleaned bathroom) which made things even more normal as I used to do these chores before I became ill. I called the AA man and he fixed Rose's car rather trivially. It was suffering from "bore wash" (google it) - the man diagnosed it, explained his cure and then cured it. Very impressive consulting!
This afternoon Ray came to visit. Ray lives in Bermuda, and is over in the UK for a few weeks. He brought me a whole load of quiz and puzzle books - thanks Ray. We went to the local Chinese for dinner, it was really good.
Whilst at home I have had a great time; seen plenty of friends, got stronger and heavier (now 84.4kg), had great food, and best of all spent some quality time with Rose. I suppose it is a glimpse of what life will be like after the transplant (whenever that will be), and I am hopefully cured. Until then, at the back of mind is always the fact that I have cancer.
Today I did some household chores (ironing, cleaned bathroom) which made things even more normal as I used to do these chores before I became ill. I called the AA man and he fixed Rose's car rather trivially. It was suffering from "bore wash" (google it) - the man diagnosed it, explained his cure and then cured it. Very impressive consulting!
This afternoon Ray came to visit. Ray lives in Bermuda, and is over in the UK for a few weeks. He brought me a whole load of quiz and puzzle books - thanks Ray. We went to the local Chinese for dinner, it was really good.
Monday, 2 May 2011
Visiting Pippin
I still weigh 84kg.
This morning we went to see Pippin, the new cat of our friends Babs and Nick. Here he is:
This morning we went to see Pippin, the new cat of our friends Babs and Nick. Here he is:
We sat out in the garden, and Babs and Nick laid on a fine spread for us; coffee, toasted teacakes, fresh strawberries and a glass of Prosecco, which was delightful with the fruit. Nick certainly knows what wine to serve at 10:30 in the morning! We had a great chat, and left just before lunch. A big thank you to Babs and Nick for looking after us so well.
I drove us there and back. The feeling of normality was never stronger! It's a shame I have just today and tomorrow left at home, and then its back to treatment in London.
We stopped at the chippy for lunch and are now watching the telly; it is quite nice outside but we are still prisoners in the house whilst Brandy's wound heals.
Sunday, 1 May 2011
Moore at Hatfield House
I weigh 84kg still, which is good.
Brandy is convalescing well, which means she is very keen to go out, and consequently a real nuisance. Plus, we feel it would be cruel for us to sit in the garden while she is locked in the house, so we stay indoors too!
This morning we went to see the Henry Moore exhibition at Hatfield House (http://www.hatfield-house.co.uk/whats-on/exhibition-moore-at-hatfield/). The weather was sunny and breezy, and they have quite a few pieces on display. We had a really nice stroll through grounds admiring the sculptures.
We have been living in Hatfield for over 15 years but never visited the house itself, just the grounds. One day maybe!
We came home and had a late lunch with some very nice Burgundy, and then we went for a kip. When I woke up I had a headache - I must have had a bit too much wine!
Brandy is convalescing well, which means she is very keen to go out, and consequently a real nuisance. Plus, we feel it would be cruel for us to sit in the garden while she is locked in the house, so we stay indoors too!
This morning we went to see the Henry Moore exhibition at Hatfield House (http://www.hatfield-house.co.uk/whats-on/exhibition-moore-at-hatfield/). The weather was sunny and breezy, and they have quite a few pieces on display. We had a really nice stroll through grounds admiring the sculptures.
We have been living in Hatfield for over 15 years but never visited the house itself, just the grounds. One day maybe!
We came home and had a late lunch with some very nice Burgundy, and then we went for a kip. When I woke up I had a headache - I must have had a bit too much wine!
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