Well I've had my first couple of days of the conditioning period (the 11 days prior to the transplant that'l wipe out my own immune system), just the CNS boosts so far which have been pretty straight forward. They're just short blasts of radiation to my head, they mould this piece of plastic with loads of holes in it around my face and than strap it to the bed to keep me in place and mark certain sections.
Side effects have been pretty manageable, headaches, tiredness, my jaw's starting to get a bit sore but then I've only got two more of the boosts then I'm done.
By the sounds of it the weekends going to be pretty epic, I've got the cyclophosphamide, campath and hydration so I'm going to be hooked up to a drip for about 3 days straight really. It doesn't sound like I'll get much sleep but I've got monday to look forward to as a bit of a rest day before the TBI starts.
So far so good really.
Wednesday, 29 April 2009
Friday, 17 April 2009
New Transplant Date
I was given a new date to go in to Hospital, so I'll be admitted on the 27th of April and transplant day should be the 8th of May. They decided over the easter weekend I needed a top of chemo, not a whole regime just 4 days of cytarabine and 5 days of steroids. It hasn't affected me too much, my haemoglobin got pretty low at one point and I started feeling pretty tired and getting some headaches but the transfusion I had last friday seemed to sort it. I'm still getting some mild headaches in the morning and at night but only very mild ones, to be honest I feel better now than I have in ages.
It's been a weird few weeks, I know I say that a lot, but I've been off the chemo for weeks and I'm feeling pretty normal for the first time in months. Apart from how unfit I feel obviously, I'm still looking forward to getting my fitness back. This couple of weeks respite has made me lose track of the situation a little bit, I'm trying to look forward to what happens after the transplant but none of the Doctors seem to want to tell me what exactly will happen. From what I can tell its pretty different for each person, dealing with the graft vs. host and that... but they haven't even given me a for instance which makes it difficult to plan where I'm going to be or what I can do when I get out of the hospital.
One of the transplant coordinators just phoned me to say I have to start the palifermin this saturday, I have to have it a couple of days prior to the CNS Boosts. He's going to be emailing me a regime through later on today. Everyones asking me if I'm nervous yet, or anxious about it all and to be honest I really don't think I am. Having come out the other side of those chemo regimes I've started to look back on them as a challenge that I got through and that the next six weeks I'm going to spend in hospital will be much the same thing, a challenge that I'm just going
to take on and come out the other side of. None of the Doctor's seem to be worried about me, I've got a very good match for the transplant and I'm fit and well going in to this, if they're not worried why should I be?
To be honest I'd quite like to talk to them about how I'm likely to be feeling post-transplant but I don't want them to think I'm not taking the here-and-now seriously enough. I know its going to be pretty dull six weeks and I'm going to be feeling horrendous for quite a lot of it, but what I've realised from recovering from this last lot of chemo is that it really doesn't take all that long before your body sorts itself out. I realise this will be on a whole new level and I'm going to be feeling even worse than last time, but at least I've got the palifermin not to mention my parents, my sister and my girlfriend will all be around. Plus it's all as an in-patient, I don't have to endure anything at home and wonder if I should be calling the hospital.
Anyway this week before I go in to hospital should be a good one, I'm going to see a friend wednesday night and friday night I'm going to cook a meal for my housemates and a few other friends. Hopefully I'll make it down to Weston on thursday as well to see my old boss, he's mentioned he might have some work for me over the summer, which would definitely keep me busy. I think of working for him from July through to October when I start uni again, it would be good to get some money for the summer, not that I really need it at the moment. I'll have to see how I feel, I might be better off just concentrating on getting my fitness back and just staying with my parents for the summer, I'd be around all my friends as well. We shall see.
It's been a weird few weeks, I know I say that a lot, but I've been off the chemo for weeks and I'm feeling pretty normal for the first time in months. Apart from how unfit I feel obviously, I'm still looking forward to getting my fitness back. This couple of weeks respite has made me lose track of the situation a little bit, I'm trying to look forward to what happens after the transplant but none of the Doctors seem to want to tell me what exactly will happen. From what I can tell its pretty different for each person, dealing with the graft vs. host and that... but they haven't even given me a for instance which makes it difficult to plan where I'm going to be or what I can do when I get out of the hospital.
One of the transplant coordinators just phoned me to say I have to start the palifermin this saturday, I have to have it a couple of days prior to the CNS Boosts. He's going to be emailing me a regime through later on today. Everyones asking me if I'm nervous yet, or anxious about it all and to be honest I really don't think I am. Having come out the other side of those chemo regimes I've started to look back on them as a challenge that I got through and that the next six weeks I'm going to spend in hospital will be much the same thing, a challenge that I'm just going
to take on and come out the other side of. None of the Doctor's seem to be worried about me, I've got a very good match for the transplant and I'm fit and well going in to this, if they're not worried why should I be?
To be honest I'd quite like to talk to them about how I'm likely to be feeling post-transplant but I don't want them to think I'm not taking the here-and-now seriously enough. I know its going to be pretty dull six weeks and I'm going to be feeling horrendous for quite a lot of it, but what I've realised from recovering from this last lot of chemo is that it really doesn't take all that long before your body sorts itself out. I realise this will be on a whole new level and I'm going to be feeling even worse than last time, but at least I've got the palifermin not to mention my parents, my sister and my girlfriend will all be around. Plus it's all as an in-patient, I don't have to endure anything at home and wonder if I should be calling the hospital.
Anyway this week before I go in to hospital should be a good one, I'm going to see a friend wednesday night and friday night I'm going to cook a meal for my housemates and a few other friends. Hopefully I'll make it down to Weston on thursday as well to see my old boss, he's mentioned he might have some work for me over the summer, which would definitely keep me busy. I think of working for him from July through to October when I start uni again, it would be good to get some money for the summer, not that I really need it at the moment. I'll have to see how I feel, I might be better off just concentrating on getting my fitness back and just staying with my parents for the summer, I'd be around all my friends as well. We shall see.
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