Well, that's me back in hospital again with a little infection. I've been in since Saturday night, but this is the first time I've had internet access to write about it; the room they admitted me to had no 3g reception whatsoever, so they eventually moved me back to my original room here at the Beatson. To be honest, I quite liked the bigger room they had me in; the lack of internet was a bit of a pain, but I quite think I'd have survived for a couple more days.
As for what I'm actually in for, they're not quite sure about that. Currently they're treating me with wide-spectrum antibiotics and an antiviral called foscarnet for a virus called CMV; once tests start coming back, they can be more specific in their treatment. Hopefully it'll turn out to be something that responds to the stuff they already have me on, because then I should be out within about three days. If not, it could be a week or more.
Anyway, I'm mostly passing the time in here by sleeping it away, so I think I'll get back to doing that now. Good night.
Tuesday 13 May 2008
Monday 5 May 2008
An overdue update
I'm pleased to announce that I've been discharged from hospital, as of last Wednesday, thereby concluding (hopefully forever) my cancer treatment. While I'm nowhere near out of the woods yet, and there's a long road of recovery even if everything goes perfectly, it is nice to have this milestone out of the way. Other than biweekly clinics and the odd transfusion of blood or platelets, I shouldn't have to spend any more time in hospital.
I'm feeling generally okay, day to day, apart from the tiredness. I'm told I should start perking up in a month or so. My skin is quite dry after the radiotherapy, but moisturiser seems to keep that under control. All that's left to do now is wait six months or so for my immunosuppressants to be tailed off and for my strength to return.
This might be my last post here for a while, I think; I don't envisage a lot more excitement in this treatment regimen. No news is good news.
I'm feeling generally okay, day to day, apart from the tiredness. I'm told I should start perking up in a month or so. My skin is quite dry after the radiotherapy, but moisturiser seems to keep that under control. All that's left to do now is wait six months or so for my immunosuppressants to be tailed off and for my strength to return.
This might be my last post here for a while, I think; I don't envisage a lot more excitement in this treatment regimen. No news is good news.
Sunday 27 April 2008
Exciting developments
The doctors are very happy with how well my engraftment process has gone; so much so, in fact, that they're now letting me out of the hospital during the day. I was initially released over dinnertime on Friday and, since then, I've been out from lunchtime yesterday and today. Unfortunately, I'm still not feeling anywhere near 100% — I've been very tired, amongst other things, and have generally been spending my time at home up in my bed. Nevertheless, it is nice to be out for a while. Perhaps I'll go for a little walk in the park later on, if the forbidden direct sunlight clears off for a while.
Even better than being out on day pass, the staff are now talking in terms of when I might assume outpatient status, and check out permanently. From the sounds of things, I should be out within the fortnight, assuming I stay infection free and assuming my counts continue behaving the way they have been. This is a lot earlier than we'd expected; mum thought I'd be in for somewhere in the region of six to eight weeks post-transplant. While on the one hand this is obviously great news, on the other it makes it seem less likely that I'll be able to collect enough photos of the staff on ward B8 to make a proper attempt at an album of my time there, which is a pity. Perhaps I'll manage over the next week or so, now that I'm feeling a little more energetic, but I fear the staff rotas might make it impossible to meet enough people over such a short period. Oh well.
Anyway, as I've said, I have been feeling a little under the weather despite my enviable blood counts. I'll take a nap just now and see how I feel a little later on, maybe take that walk then.
Even better than being out on day pass, the staff are now talking in terms of when I might assume outpatient status, and check out permanently. From the sounds of things, I should be out within the fortnight, assuming I stay infection free and assuming my counts continue behaving the way they have been. This is a lot earlier than we'd expected; mum thought I'd be in for somewhere in the region of six to eight weeks post-transplant. While on the one hand this is obviously great news, on the other it makes it seem less likely that I'll be able to collect enough photos of the staff on ward B8 to make a proper attempt at an album of my time there, which is a pity. Perhaps I'll manage over the next week or so, now that I'm feeling a little more energetic, but I fear the staff rotas might make it impossible to meet enough people over such a short period. Oh well.
Anyway, as I've said, I have been feeling a little under the weather despite my enviable blood counts. I'll take a nap just now and see how I feel a little later on, maybe take that walk then.
Sunday 20 April 2008
Par for the course
Well, it seems I've finally developed the little infection I've been being threatened with since my counts started falling. Actually it's surprising I held out so long; my neutrophils are at 0.01 billion per litre, which is rather below the normal range of 2-7bpl. I've been on gentamicin and some other broad-spectrum antibiotic for the past couple of days, only to be informed this evening (on return of my blood cultures) that my bug is a resistant streptococcus; the broad-spectrum drugs are no good for it, so they've put me on something new for the remainder of the week.
There's not a lot else to report, really. I've been having some very odd dreams brought on by the hallucinogenic properties of the morphine I've had for my mouth pain, but apparently this is perfectly normal; the nurses told me not to be too worried about thinking I was going mad or anything like that. Speaking of morphine, the consultant told me this morning that she thinks my mouth should start feeling a bit better over the next couple of days, due to the methotrexate I'd been on finally wearing off, which is very welcome news. Maybe soon I'll be able to get back to eating solid food. For now, though, I'm happy enough sticking with my calorie milkshakes and sleeping a lot.
Good night, for now.
There's not a lot else to report, really. I've been having some very odd dreams brought on by the hallucinogenic properties of the morphine I've had for my mouth pain, but apparently this is perfectly normal; the nurses told me not to be too worried about thinking I was going mad or anything like that. Speaking of morphine, the consultant told me this morning that she thinks my mouth should start feeling a bit better over the next couple of days, due to the methotrexate I'd been on finally wearing off, which is very welcome news. Maybe soon I'll be able to get back to eating solid food. For now, though, I'm happy enough sticking with my calorie milkshakes and sleeping a lot.
Good night, for now.
Thursday 17 April 2008
One week in
Well, that's seven days in from the transplant, and the early signs are quite good. My donor cells are a little lower than they could be, so the doctors are debating whether to put me on a growth hormone to get them moving along faster. Other than that, there's been no signs of rejection or anything like that; things could be a lot worse.
Day to day, though, I am feeling much worse, lately. The consultant informed me the other day that days six through ten seem to be when the side effects are at their worst, and her prediction certainly seems accurate enough. I vomited up my nasal feeding tube, this morning, much to everyone's dismay. My mucositis and platelet counts are bad enough now that they daren't attempt the insertion of a new one, mercifully, so it looks like I'll be getting what nutrition I can get from high-calorie milkshakes, for the next week or so. If I get an infection, though, it looks like I'll just need to put up with the resulting weight loss; they seem extremely reluctant to feed me through my Hickman line, for fear that that might cause all sorts of awful complications.
Speaking of the mucositis, they started me on oramorph, an oral preparation of morphine sulphide, today. It is absolutely wonderful; my mouth and throat are hardly bothering me at all, now. I don't know how long they would keep giving me it for, though, there tend to be protocols in place to avoid the possibility that I'd develop dependencies on the various stronger drugs I'm on from time to time. For now, though, I'm enjoying being able to drink a glass of water without wincing too much.
Aside from all of that, things seem to be going quite well. My insides feel noticibly more comfortable and settled now that I've got rid of the nasal tube, which is a nice change. On the other hand, my hair has started falling out now; at the rate it's going, I expect I'll be entirely bald by Saturday or Sunday. It dawned on me today that, by the time I can grow my hair back to its usual length, I'll probably be too old for that sort of nonsense.
So, a mixed bag, this week. Things are generally going well, if a bit uncomfortably. With luck I'll start perking up again around about this time next week. Can't wait.
Good night.
Day to day, though, I am feeling much worse, lately. The consultant informed me the other day that days six through ten seem to be when the side effects are at their worst, and her prediction certainly seems accurate enough. I vomited up my nasal feeding tube, this morning, much to everyone's dismay. My mucositis and platelet counts are bad enough now that they daren't attempt the insertion of a new one, mercifully, so it looks like I'll be getting what nutrition I can get from high-calorie milkshakes, for the next week or so. If I get an infection, though, it looks like I'll just need to put up with the resulting weight loss; they seem extremely reluctant to feed me through my Hickman line, for fear that that might cause all sorts of awful complications.
Speaking of the mucositis, they started me on oramorph, an oral preparation of morphine sulphide, today. It is absolutely wonderful; my mouth and throat are hardly bothering me at all, now. I don't know how long they would keep giving me it for, though, there tend to be protocols in place to avoid the possibility that I'd develop dependencies on the various stronger drugs I'm on from time to time. For now, though, I'm enjoying being able to drink a glass of water without wincing too much.
Aside from all of that, things seem to be going quite well. My insides feel noticibly more comfortable and settled now that I've got rid of the nasal tube, which is a nice change. On the other hand, my hair has started falling out now; at the rate it's going, I expect I'll be entirely bald by Saturday or Sunday. It dawned on me today that, by the time I can grow my hair back to its usual length, I'll probably be too old for that sort of nonsense.
So, a mixed bag, this week. Things are generally going well, if a bit uncomfortably. With luck I'll start perking up again around about this time next week. Can't wait.
Good night.
Friday 11 April 2008
Day +1
Well, I've successfully made it through my stem cell transplant, plus one day, with no significant rejection issues or complications. The last week went about as smoothly as it could have gone; my couple of days of high-dose cyclophosphomide didn't cause any unexpected problems, and so far I've weathered the aftereffects of the total body irradiation as though it had been nothing at all. I spent most of the time during the week getting used to my surrounds at the very nice new Beatson unit at Gartnavel, which really is about as nice as a hospital can be, and just generally relaxing. All of the important parts and aspects of the unit seem to be quite smoothly operational now (it's only just opened, I'm the first transplant patient they've had here), but there are still little things waiting to be sorted out; lack of television reception, apparently, seems to be causing some patients trouble. I'm still getting on fine with my intermittent 3g internet access; I'll survive until they wire in some wireless broadband and, I daresay, even if they don't.
Anyway, I've been informed in no uncertain terms whatsoever that the next couple of weeks are going to be pretty unpleasant. The medicine is straightforwards enough, they'll just be keeping me on immunosuppressants to offset the chances of graft-versus-host disease — a sort of inverse of usual organ rejection, in which the graft rejects me — and a whole lot of anti-everythings to guard against infection. It sounds like I'll get an infection anyway, just as an inevitable result of having literally no white cells whatsoever, but that's what the vancomicin is there for. Aside from issues brought on by low counts, I also have acute radiation sickness to look forwards to; by all accounts, the amount of radiation I got last week should kill me — and it would, too, if it weren't for the donor stem cells. Soon after serious radiation exposure, i.e. today/tomorrow, I should expect my mouth and G.I. tract to ulcerate rather unpleasantly, to the extent that I really won't feel like eating anything for maybe a week or so. Therefore, I've been fitted (today) with a nasal feeding-tube which passes straight through my stomach and deposits (in tonight's meal) 1.5kg of sugar and milk protein goo into my gut. The experience of having the tube fitted was far and away the least pleasant I've ever had, and I very much hope that there are no problems with it. Very much so indeed.
Aside from that, there's really nothing to tell. Technically — if all has gone as well as it seems — I think I'm now cured of cancer, which is a nice thought. Now all that's left to do is survive the cure. Good night.
Anyway, I've been informed in no uncertain terms whatsoever that the next couple of weeks are going to be pretty unpleasant. The medicine is straightforwards enough, they'll just be keeping me on immunosuppressants to offset the chances of graft-versus-host disease — a sort of inverse of usual organ rejection, in which the graft rejects me — and a whole lot of anti-everythings to guard against infection. It sounds like I'll get an infection anyway, just as an inevitable result of having literally no white cells whatsoever, but that's what the vancomicin is there for. Aside from issues brought on by low counts, I also have acute radiation sickness to look forwards to; by all accounts, the amount of radiation I got last week should kill me — and it would, too, if it weren't for the donor stem cells. Soon after serious radiation exposure, i.e. today/tomorrow, I should expect my mouth and G.I. tract to ulcerate rather unpleasantly, to the extent that I really won't feel like eating anything for maybe a week or so. Therefore, I've been fitted (today) with a nasal feeding-tube which passes straight through my stomach and deposits (in tonight's meal) 1.5kg of sugar and milk protein goo into my gut. The experience of having the tube fitted was far and away the least pleasant I've ever had, and I very much hope that there are no problems with it. Very much so indeed.
Aside from that, there's really nothing to tell. Technically — if all has gone as well as it seems — I think I'm now cured of cancer, which is a nice thought. Now all that's left to do is survive the cure. Good night.
Monday 24 March 2008
Another rare update
Wow, it's been a while since I updated this. In my defence, there really hasn't been anything at all going on over the past couple of months; I've been at home the whole time, left completely to my own devices but for the odd visit to one of Glasgow's many, many hospitals for checkups or tests or, more recently, consultations with the departments which I'll be dealing with over the next couple of months. All good things come to an end, as the saying ventures and my own situation upholds; I've been given the date of my stem cell transplant, so on the third of April I'll be reprising my inpatient status for (if all goes according to plan) another six to eight week stint.
I'm somewhat ambivalent towards the transplant. On the one hand, it quite dramatically improves my prospects on the long term: I've got about twice the chance of still being around in five years with the transplant than without. On the other, its negative effects on my short term well-being can hardly be overstated; the most positive consult I've had warned me that I'll feel "worse than I ever have before", and the immediate post-transplant protocol includes a week of intravenous diamorphine which, I'm told, won't stop the pain but will instead "stop me caring about it." I plan to spend as much as possible of the following fortnight asleep.
The transplant conditioning procedure, carried out in the week prior to the transplant date, consists of three days of massive doses of cyclophosphomide, followed by four doses of what the consent form described as an "ordinarily fatal dose" of radiation. In addition to this, I will be administered an immunosuppressant antibody treatment, Campath. The purpose of all of this is to eliminate entirely my own immune system, and clear out any remaining tumour cells lurking in my bone marrow. After the final day of radiotherapy, I'll be infused (exactly like a blood transfusion) with the donor cells; the transplant itself is just as simple as that. Over the next six weeks, it's hoped that the donor cells will graft successfully onto my bone marrow, whereupon they'll assume almost all of the roles previously administered by my pre-leukaemia immune system. Following the transplant, I should essentially be cured; all that's left is prophylaxis and isolation while the graft takes, and anti-GVHD immunosuppression afterwards. Oh, and a whole lot of assorted reasons for feeling awful, of course. This should all begin to tail off around day 100 (day 0 being the transplant date), though, and then I should be free to start working on getting my health back and getting on with my studies.
As for the next week and a bit, however, I should remain at home. I expect I'll spend these as I've spent the past month or so: watching TV, eating home-cooked meals, working with my photographs — I intend to prepare an album for the staff of Ward 24 — and playing about with my computer stuff. For now, though, I'd better get some sleep.
I'm somewhat ambivalent towards the transplant. On the one hand, it quite dramatically improves my prospects on the long term: I've got about twice the chance of still being around in five years with the transplant than without. On the other, its negative effects on my short term well-being can hardly be overstated; the most positive consult I've had warned me that I'll feel "worse than I ever have before", and the immediate post-transplant protocol includes a week of intravenous diamorphine which, I'm told, won't stop the pain but will instead "stop me caring about it." I plan to spend as much as possible of the following fortnight asleep.
The transplant conditioning procedure, carried out in the week prior to the transplant date, consists of three days of massive doses of cyclophosphomide, followed by four doses of what the consent form described as an "ordinarily fatal dose" of radiation. In addition to this, I will be administered an immunosuppressant antibody treatment, Campath. The purpose of all of this is to eliminate entirely my own immune system, and clear out any remaining tumour cells lurking in my bone marrow. After the final day of radiotherapy, I'll be infused (exactly like a blood transfusion) with the donor cells; the transplant itself is just as simple as that. Over the next six weeks, it's hoped that the donor cells will graft successfully onto my bone marrow, whereupon they'll assume almost all of the roles previously administered by my pre-leukaemia immune system. Following the transplant, I should essentially be cured; all that's left is prophylaxis and isolation while the graft takes, and anti-GVHD immunosuppression afterwards. Oh, and a whole lot of assorted reasons for feeling awful, of course. This should all begin to tail off around day 100 (day 0 being the transplant date), though, and then I should be free to start working on getting my health back and getting on with my studies.
As for the next week and a bit, however, I should remain at home. I expect I'll spend these as I've spent the past month or so: watching TV, eating home-cooked meals, working with my photographs — I intend to prepare an album for the staff of Ward 24 — and playing about with my computer stuff. For now, though, I'd better get some sleep.
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