Well after having to show the nurse I could do my ganciclovir again last night I was finally discharged. I left the hospital with a lot of pills, gloves, syringes and medicines but at least I'm out. Feels good to be home and plus with my girlfriends housemates moving out this weekend I can start to settle in a bit more and more a lot of my stuff in to the empty rooms.
I'm not sleeping so well at the minute, I suppose just because it's so different to sleeping in hospital but I'm getting a fair amount of rest. The most annoying thing is waking up early to administer the ganciclovir but hopefully I'll be able to streamline that so it gets easier. Plus with my viral counts down to half already I shouldn't be on it much longer.
I've still got this one exam scheduled for Wednesday next week so I'm going to give the Uni a ring on Monday and see what I can do. If I can take it in a room on my own, with just an envigilator, there wouldn't be a problem and it is only an hours exam. Still if I feel up to doing it now it might be a good idea, since if I was ill for the retake in August I'd miss my last chance and have to do the whole years module all over again.
Saturday, 30 May 2009
Saturday, 23 May 2009
Day +15: Bit of a set back
Had a bit of a set back unfortunately I managed to get a virus so I'm still in isolation, I thought I might be on the normal ward by now but obviously they can't let me out of isolation now for a while. The Doctor's still don't seem phased and besides I take my cue from Prof. Marks really, if he's not concerned about something then neither am I.
Definately starting to run out of stuff to do here in isolation so hopefully like they said I'll be out for at least some time next week.
I havent sat and listened to music for a couple of weeks now, I don't know why its something I always forget about in hospital. Started listening to my last.fm library today and it made me feel a whole lot better. Looking forward to getting out of here and playing some music, that's for sure.
One thing I realised last night is that the next 90 days that I'm under the supervision of the BMT Unit are really going to be a test, okay I'll be getting better and better but it just kind of dawned on me how much more time I'm going to be spending in here when. Not just for day appointments but obviously every time I'm ill as well. It's a pretty crappy thing to think now, since I really want to get out of here, but still I suppose it'l only get easier at the end of the day.
Definately starting to run out of stuff to do here in isolation so hopefully like they said I'll be out for at least some time next week.
I havent sat and listened to music for a couple of weeks now, I don't know why its something I always forget about in hospital. Started listening to my last.fm library today and it made me feel a whole lot better. Looking forward to getting out of here and playing some music, that's for sure.
One thing I realised last night is that the next 90 days that I'm under the supervision of the BMT Unit are really going to be a test, okay I'll be getting better and better but it just kind of dawned on me how much more time I'm going to be spending in here when. Not just for day appointments but obviously every time I'm ill as well. It's a pretty crappy thing to think now, since I really want to get out of here, but still I suppose it'l only get easier at the end of the day.
Wednesday, 20 May 2009
Day +12: Almost out
Well the Doctors came in and told me that my neutrophil count is up above 1 now so the graft is taking well and they even said they would move me downstairs to the normal ward if there were any beds (which they aren't!). So hopefully in a couple of days I'll be out of isolation and allowed out for a few hours a day. I could definately use some fresh air.
So I'm over the moon really, everythings looking great. I've got to keep an eye out for signs of the graft vs. host like rashes, I do have a rash on my stomach but the Doctor's don't seem worried about it, they just told me to keep an eye on it. I'm still feeling good, a little tired now and then but not too bad.
So I'm over the moon really, everythings looking great. I've got to keep an eye out for signs of the graft vs. host like rashes, I do have a rash on my stomach but the Doctor's don't seem worried about it, they just told me to keep an eye on it. I'm still feeling good, a little tired now and then but not too bad.
Tuesday, 19 May 2009
Day +11: Through the worst
Well the last 4-5 days have been a bit rough, my throat got so sore I had to get on the morphine which really helped with the pain, still being hooked up to the drip literally 24/7 is a pain in the ass. Plus the stuff made me wretch quite a lot to start with which, considering I wasn't eating anything was uncomfortable. Still it was a bit of a relief for the Doctor's to come round and say "This is the worst of it now" rather than, "You'll feel worse tomorrow".
In the last few days however I've been feeling a lot better, my mouth never got sore but it did start getting full of mucus and feeling really dry, it was good to get on the morphine rather than waiting for painkiller pills every 3 hours. Plus now they put all my oral meds down the NG tube so I don't have to swallow any pills, something that was starting to get difficult.
I've got in to the schedule in isolation now so the days are going by pretty quickly, definately glad I have my laptop with me. I think the most frustrating thing really is how much effort it takes to do even the simplest of things. To get up and do anything I've got to unplug all of the pumps I'm connected to, drag that around with me in a pretty small room. Still I'm pretty used to it now.
I woke up this morning and my throat felt a lot better than it did yesterday, hardly any pain at all. I'm still not eating a great deal but with the overnight feeds still going on thats not too much of a problem.
So hopefully it'l only be another week or so and I'll be out and back home. There is something that's bothering me though, I feel like I've lost some of that sense of urgency about the whole thing, like I've become a little to laid back when really there's still a long way to go and a lot of stuff that could happen. I've had so many big plans that I want to realise when I'm better, I don't want to get lazy and have them fall by the wayside. I don't want to just live off the benefits I get and lose that ambition to achieve the things I want to, I feel so out of touch with my work and I've no idea how I'm going to start getting fit again. I've really got to keep focused and make sure I don't let this slip, I know it sounds a bit wanky but when you're given a real appreciation of how important it is to live your life you don't want to lose that.
In the last few days however I've been feeling a lot better, my mouth never got sore but it did start getting full of mucus and feeling really dry, it was good to get on the morphine rather than waiting for painkiller pills every 3 hours. Plus now they put all my oral meds down the NG tube so I don't have to swallow any pills, something that was starting to get difficult.
I've got in to the schedule in isolation now so the days are going by pretty quickly, definately glad I have my laptop with me. I think the most frustrating thing really is how much effort it takes to do even the simplest of things. To get up and do anything I've got to unplug all of the pumps I'm connected to, drag that around with me in a pretty small room. Still I'm pretty used to it now.
I woke up this morning and my throat felt a lot better than it did yesterday, hardly any pain at all. I'm still not eating a great deal but with the overnight feeds still going on thats not too much of a problem.
So hopefully it'l only be another week or so and I'll be out and back home. There is something that's bothering me though, I feel like I've lost some of that sense of urgency about the whole thing, like I've become a little to laid back when really there's still a long way to go and a lot of stuff that could happen. I've had so many big plans that I want to realise when I'm better, I don't want to get lazy and have them fall by the wayside. I don't want to just live off the benefits I get and lose that ambition to achieve the things I want to, I feel so out of touch with my work and I've no idea how I'm going to start getting fit again. I've really got to keep focused and make sure I don't let this slip, I know it sounds a bit wanky but when you're given a real appreciation of how important it is to live your life you don't want to lose that.
Tuesday, 12 May 2009
Day +4 in isolation
My blogs have been a little thin on the ground recently, mainly because I haven't really felt up to writing a great deal, I'm feeling less tired at the moment but I'm still on that downward slope of feeling worse and worse every day, hopefully it'l be one week getting worse and then one week getting better but the Doctor's can't really give you a timescale when its different for everybody.
My throat's getting more painful but I'm on a lot of painkillers so it's pretty manageable at the moment and there's always the liquid morphine to go on to when it gets really bad.
Starting to get used to being in isolation now, it sucks being hooked up to the machines all night, especially being on the nasal gastric feeds for 10 hours. I'm eating bits and pieces, cereal, chips, toast, as well as the build-up shakes and ice cream.
The nurse just gave me a chart of my blood results over the last few days, my haemoglobin is sticking around 10 which is good, my neutrophils are down to 0.08 so not quite all the way down yet. Apparently they'll hit zero then I'll get an infection and then they'll pump me full of antibiotics.
It's just a waiting game really, my family and my girlfriend are here a lot so I'm not on my own much. I tend to just spend all my time watching films and comedy series, not a bad way to spend the day.
My throat's getting more painful but I'm on a lot of painkillers so it's pretty manageable at the moment and there's always the liquid morphine to go on to when it gets really bad.
Starting to get used to being in isolation now, it sucks being hooked up to the machines all night, especially being on the nasal gastric feeds for 10 hours. I'm eating bits and pieces, cereal, chips, toast, as well as the build-up shakes and ice cream.
The nurse just gave me a chart of my blood results over the last few days, my haemoglobin is sticking around 10 which is good, my neutrophils are down to 0.08 so not quite all the way down yet. Apparently they'll hit zero then I'll get an infection and then they'll pump me full of antibiotics.
It's just a waiting game really, my family and my girlfriend are here a lot so I'm not on my own much. I tend to just spend all my time watching films and comedy series, not a bad way to spend the day.
Saturday, 9 May 2009
Day +1: Conditioning and Transplant done
Been a bit of a while since my last update, the conditioning all went alright. The weekend of chemotherapy last weekend went pretty well, all the Cyclophosphamide went down a lot better than it normally does, I didn't feel sick at all really. The Campath gave me a rash but it just meant more piriton which was fine.
The monday after I went back to the apartment I still felt okay but when I had a pretty rough nights sleep sweating out all the drug's I'd had so I felt rubbish the next day.
The TBI was Tuesday to Friday, it was pretty straightforward. It's a pretty weird experience all in all, first you strip down to your underwear then they put this sort of string vest thing over your torso and another around your neck. Then they fit the wax head mould that they made a few weeks before. They put some sensors inside the vest and on your head to monitor the radiation levels and then I lay down on a bed and... that's about it really. They come in and move me around sometimes but its just 8 beams of radiation, takes about 20 minutes.
So with that done last night was the transplant, it was a bit of an anti-climax but I enjoyed myself seeing as I was high as a kite on pethadin and piriton. An hour or so of stem cells then it was all done, now I'm in isolation for the next few weeks! Spent my day just watching a whole Series of Only Fools and Horses and disney films :p
The monday after I went back to the apartment I still felt okay but when I had a pretty rough nights sleep sweating out all the drug's I'd had so I felt rubbish the next day.
The TBI was Tuesday to Friday, it was pretty straightforward. It's a pretty weird experience all in all, first you strip down to your underwear then they put this sort of string vest thing over your torso and another around your neck. Then they fit the wax head mould that they made a few weeks before. They put some sensors inside the vest and on your head to monitor the radiation levels and then I lay down on a bed and... that's about it really. They come in and move me around sometimes but its just 8 beams of radiation, takes about 20 minutes.
So with that done last night was the transplant, it was a bit of an anti-climax but I enjoyed myself seeing as I was high as a kite on pethadin and piriton. An hour or so of stem cells then it was all done, now I'm in isolation for the next few weeks! Spent my day just watching a whole Series of Only Fools and Horses and disney films :p
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