What a journey so far, I'll keep it brief - it's 2:30 in the morning and I can't sleep so hopefully this will help tire me out a little ahead of the morning of meds to come.
This is obviously my first blog update for a while, not sure if I'll be updating on a regular basis but (as you may have guessed) my strength is coming back (otherwise I wouldn't be doing this!) so we'll see.
A brief recap then of things since my last update:
Day 0 - this was the last day of TBI (total body irradiation) and the introduction of the stem cells. Everyone was telling me that the stem cell transfusion would be an anti-climax as it's just bags of blood going in. How wrong. The American cells were very thick and required real effort the French cells seemed better. However the steroids given beforehand had me climbing the walls and I reacted badly to the preservative used for the cells causing real problems over the following days.
Eventually that sorted itself out and fundamentally the rest of the time has been just recovery. For a long time (as my blood was completely devoid of white cells) I was permanently fighting off high temperatures through a cocktail of tablets and IV anti-biotics/anti-fungals. I had a naso-gastro tube for feeding which was quite uncomfortable but effective.
More recently my blood counts are starting to come up (no where near normal levels) but enough where it looks like the doctors are willing to withdraw some of the anti-biotics soon to see if I can cope without them.
Also I've been feeling stronger in myself and have started doing some exercises in bed to try and get me ready to do things like sitting out of bed and going for short walks.
I still tire relatively easily, especially after things like bed baths, so there's a long way to go still but I definitely feel I'm well on the road to recovery.
Fairly soon too it looks like I'll be disconnected from the heparin which will be great as that will provide a level of freedom.
Anyway, that's it for now - my sincere thanks and love to those who've been in touch one way or another with messages of support and best wishes, it's really appreciated knowing there's so many folks out there rooting for my recovery - thank-you!
Wednesday, 12 August 2009
Tuesday, 14 July 2009
Get ready the French...
Quick update on Bastille Day seems appropriate given that one half of the stem cell infusion I'll get on Friday is from the remaining French bag.
Today is Day -3, I've had 2 TBI sessions (Total Body Irradiation) - seems OK so far other than being quite tired directly afterwards. I've also started Ciclosporin and MMF (Mycophenolate Mofetil) both immunosuppressants to help the cell infusion take when I have it on Friday (basically I need for the cord stem cells to come in and see me as the enemy and start killing off my white blood cell capability and for them to take over so that the leuakeamia is cured.
TBI and the two drugs haven't caused too much in the way of side-effects at the moment but that is very likely to change next week, hence I'm burning up my BT Openzone credits here at the hospital while I'm still in the mood to be online and blog and stuff.
Oh - and the move to the Churchill went very smoothly, 
the new room is very nice but as might be expected there are teething problems, most noticeably for me is the mornings as my TBI is meant to be at 08:30 but so far I have been an hour late for both.
Pictures: old empty blue room of Ward 5e versus new empty neutral room of Churchill, there was no bed or furniture when I arrived but that's taken care of now :-)
Today is Day -3, I've had 2 TBI sessions (Total Body Irradiation) - seems OK so far other than being quite tired directly afterwards. I've also started Ciclosporin and MMF (Mycophenolate Mofetil) both immunosuppressants to help the cell infusion take when I have it on Friday (basically I need for the cord stem cells to come in and see me as the enemy and start killing off my white blood cell capability and for them to take over so that the leuakeamia is cured.
TBI and the two drugs haven't caused too much in the way of side-effects at the moment but that is very likely to change next week, hence I'm burning up my BT Openzone credits here at the hospital while I'm still in the mood to be online and blog and stuff.
Oh - and the move to the Churchill went very smoothly, 
the new room is very nice but as might be expected there are teething problems, most noticeably for me is the mornings as my TBI is meant to be at 08:30 but so far I have been an hour late for both.Pictures: old empty blue room of Ward 5e versus new empty neutral room of Churchill, there was no bed or furniture when I arrived but that's taken care of now :-)
Friday, 10 July 2009
Introducing my new girlfriend Dolly...
Second day (day -7 with day 0 being cell infusion day) in hospital and last one in Ward 5E at the John Radcliffe, tomorrow the move to the Churchill hospital is a go; not sure what time exactly I'll move over, the plan is to get at least one chemo into me before going and then have the last one upon arrival as a welcome gift...
So far chemo has gone well, I think helped by being pretty "healthy" ahead of going in - ideal weight, reasonable stamina enough strength to lift up Luke...
Tomorrow will be the last day of chemo, Sunday a "rest day" and then Monday will be the start of radiotherapy, now with the advantage of just popping downstairs for treatment as opposed to being shipped back and forth from the JR to the Churchill and back by ambulance.
I have a new girlfriend, Dolly (the drip-stand). Here are some pictures of her dressed for the shower and "au nature
l". 
The heparin I tweeted about is a blood thinner to help protect my liver from the radiotherapy (total body irradiation - TBI) as TBI thickens the blood. It's a slow push syringe that squirts in 1ml over the course of an hour, it's the wide pump below the blue pump. I will be hooked up (continually) to this until day +30 so I have had to get used to taking Dolly into the shower with me and everywhere else...
I also have loads of fluids pumped into me currently to protect my bladder from the effects of the increased cyclophosphamide dose I am receiving as part of chemo (the other chemo is fludarabine), this will likely stop as of next week.
Putting on loads of weight because of all the fluids, I'm getting furosemide to make me go to the loo a lot to try and lose it and on that note, the call of nature beckons.
Dolly, time for walkies...
So far chemo has gone well, I think helped by being pretty "healthy" ahead of going in - ideal weight, reasonable stamina enough strength to lift up Luke...
Tomorrow will be the last day of chemo, Sunday a "rest day" and then Monday will be the start of radiotherapy, now with the advantage of just popping downstairs for treatment as opposed to being shipped back and forth from the JR to the Churchill and back by ambulance.
I have a new girlfriend, Dolly (the drip-stand). Here are some pictures of her dressed for the shower and "au nature
l". 
The heparin I tweeted about is a blood thinner to help protect my liver from the radiotherapy (total body irradiation - TBI) as TBI thickens the blood. It's a slow push syringe that squirts in 1ml over the course of an hour, it's the wide pump below the blue pump. I will be hooked up (continually) to this until day +30 so I have had to get used to taking Dolly into the shower with me and everywhere else...I also have loads of fluids pumped into me currently to protect my bladder from the effects of the increased cyclophosphamide dose I am receiving as part of chemo (the other chemo is fludarabine), this will likely stop as of next week.
Putting on loads of weight because of all the fluids, I'm getting furosemide to make me go to the loo a lot to try and lose it and on that note, the call of nature beckons.
Dolly, time for walkies...
Tuesday, 7 July 2009
Who shut JR???
Well it could be me - the hospital phoned have confirmed today that I should come in tomorrow (Wednesday) night to start treatment the following day (Thursday 9th July); the cord has arrived safely from the US and is being held by the National Blood Service over at the John Radcliffe.
Order of play then:
Even though I'm going to be in for 6 weeks at least, I'm packing light so the transfer to The Churchill is less of an ordeal, the bulk of the stuff will come over with the family on Sunday when they visit.
We had a look at the new ward at The Churchill last week when I had my line cleaned - the rooms look pretty good but mobile reception (for me at any rate) looks a bit dodgy...
Order of play then:
- Arrive JR Wednesday night
- Thursday chemo & heparin starts
- Saturday chemo finishes
- Saturday/Sunday - WARD 5E AT THE JR CLOSES AND TRANSFERS TO THE CHURCHILL
- Monday (13th) - radiotherapy starts, daily for 5 days
- Friday (17th) - last day of radiotherapy and stem cells (from the US & the surviving French ones) transplanted in
Even though I'm going to be in for 6 weeks at least, I'm packing light so the transfer to The Churchill is less of an ordeal, the bulk of the stuff will come over with the family on Sunday when they visit.
We had a look at the new ward at The Churchill last week when I had my line cleaned - the rooms look pretty good but mobile reception (for me at any rate) looks a bit dodgy...
Thursday, 2 July 2009
Puff Daddy
Voluntarily headed off to the Churchill Hospital yesterday, as my Hickman Line hasn't been used for over a week I needed to ensure that it was still OK (or patent as the medics say) and not blocked through things like blood drying up in it etc. from lack of use.
Fortunately everything was fine as in the worse case scenario of the nurses not being able to get it working I would have to have had a new line :-(
Whilst there though I was able to find out the results of my bone marrow test from the other week - it confirmed that I was still in remission and my Philadelphia Chromosome ratio had dropped from 4.5% to 0.06% which is excellent news (when first diagnosed it was around 82%...)
This is thanks to the Imatinib (Glivec) tablets I take daily, however there is one uncomfortable side effect that is exacerbated by the heatwave we are having, fluid retention that is causing my feet to look like bags of jelly at the end of my legs. My feet are too swollen for shoes and it's proving difficult to get into my sandals!
I've been prescribed Furosemide which seems to be working by making me pee like a cart horse to be blunt, which is fine when at home but caused some severe difficulties when we were stuck in the M40 traffic jam
I tweeted yesterday. Needless to say, plenty of country hedgerows were saved from drought on the drive back home along the back roads...
Fortunately everything was fine as in the worse case scenario of the nurses not being able to get it working I would have to have had a new line :-(
Whilst there though I was able to find out the results of my bone marrow test from the other week - it confirmed that I was still in remission and my Philadelphia Chromosome ratio had dropped from 4.5% to 0.06% which is excellent news (when first diagnosed it was around 82%...)
This is thanks to the Imatinib (Glivec) tablets I take daily, however there is one uncomfortable side effect that is exacerbated by the heatwave we are having, fluid retention that is causing my feet to look like bags of jelly at the end of my legs. My feet are too swollen for shoes and it's proving difficult to get into my sandals!
I've been prescribed Furosemide which seems to be working by making me pee like a cart horse to be blunt, which is fine when at home but caused some severe difficulties when we were stuck in the M40 traffic jam
I tweeted yesterday. Needless to say, plenty of country hedgerows were saved from drought on the drive back home along the back roads...
Monday, 29 June 2009
Umbilical Cord Blood - what & how
An under 3 minute video that gives some insight about umbilical cord blood and what a valuable resource it is.
Sincere thanks to Andy at http://scirocco2morocco.blogspot.com/ from where
Sincere thanks to Andy at http://scirocco2morocco.blogspot.com/ from where
Saturday, 27 June 2009
Transplant & ANT Day updates
Firstly re. the Anthony Nolan Trust day event - many, many thanks for everyone that showed up. Although not everyone was eligible to be signed up, when Sarah left at about 19:00 (she left early to be at home with me because of the news about the cord) about 16 people had been actually signed up.
Apparently some more people arrived after that so although I don't think the magic number of 30 (the sort of "break even" number for ANT for such events), 16+ people were added which hopefully means 16 or so lives potentially saved somewhere in the world - you are heroes all of you!
News about the cord progress - I received a call from the hospital, if I'm understanding correctly it sounds like a couple of cords were found with the initial search that yielded the one that got damaged the other day.
It seems then that the hospital are in the process of securing a cord from the United States to supplement the viable bag from France - this is obviously very positive news and will keep folks posted as to what this means re. new dates for going into hospital.
Apparently some more people arrived after that so although I don't think the magic number of 30 (the sort of "break even" number for ANT for such events), 16+ people were added which hopefully means 16 or so lives potentially saved somewhere in the world - you are heroes all of you!
News about the cord progress - I received a call from the hospital, if I'm understanding correctly it sounds like a couple of cords were found with the initial search that yielded the one that got damaged the other day.
It seems then that the hospital are in the process of securing a cord from the United States to supplement the viable bag from France - this is obviously very positive news and will keep folks posted as to what this means re. new dates for going into hospital.
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