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.
Sunday, 27 April 2008
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.
Thursday, 14 February 2008
A rare update
Woah, it's been quite some time since I wrote this up. There's been a fair bit going on lately, when I think about it; I had James, Ewan, Joe and Michelle over for lunch and video games Sunday before last, then went to see the Scottish Ensemble in concert on the Friday with Madeleine and mum. On Saturday, I went for a walk in the city centre with Harrison, and shot a roll of T-Max 400; street photography is where the Leica really excels, so I was happy to finally get the chance to properly break-in my M6. I think I got a couple of really good shots, too, so it'll be interesting to get that roll back from the lab. Also on Saturday, I went to my aunt Brigene's 60th birthday; the light was terrible – the Leica was wanting 1/4 of a second on ISO1600 at f/2.0 – though, and I was pretty tired, so we left after only about an hour or so. I stayed awake for the drive home, but fell asleep until 4pm as soon as we got back; I woke up for some food then and again a bit later on, but otherwise slept though almost the entire day. The effects of the chemotherapy are beginning to accumulate, again, so I've found myself sleeping through most of the week. I visited the clinic today for my check-up, and my blood counts reflect the drop in my activity; I've to be cross-matched for a transfusion on Friday, so hopefully I'll be a bit more lively at the weekend.
Being treated as an outpatient makes a nice change and, apart from a mix-up last week with my regular medication, it's gone quite smoothly so far. In fact, I've only had two clinic visits in the past fortnight; the rest of my time has been at home. Having said that, things seem to be picking up again. I have an appointment tomorrow morning to have some extra blood taken, then one later on at the Royal Infirmary, where I'll meet with the transplant unit staff. I've been warned that they'll try to talk me out of going through with the procedure, due to the risk of extremely serious side-effects; the transplant unit has already given me a list of things which I should do before the operation, one item on which encourages me to set my affairs in order. I suppose this means I ought to square my overdraft sooner rather than later. I'll get a couple of units of blood on Friday, starting at eight forty-five in the morning (!), but then I'll have the weekend off before I'm due in at the Southern General for a three-weekly dose of pentamadine; the co-trimoxazole which they had me on in my earlier bouts of neutropenia was apparently suppressing my platelet production a little more than they were happy with, so they're changing my antibiotic prophylaxis this time round. That'll involve a couple of hours spent with a nebuliser, but afterwards I should have another wee break from the hospital; the last break I'll get, it's looking quite likely, before my transplant and the culmination (or conclusion, if you like) of my treatment. Better make the most of it.
Other than that, there's not been much else happening. Amazon delivered my scanner, so I spent a couple of hours this week scanning in a sheet of negatives and taking a look at them. I've not scanned in any Leica negatives yet, and I'm not actually sure when I'll get the chance, what with sleeping upwards of sixteen hours a day and not really feeling particularly up to anything that feels like work during the other eight. I'll maybe try to do a big batch on the weekend, or early next week, and that'll give me some material to work on during the next isolation phase. I was hoping I might bring the scanner into the hospital with me, but it's really too bulky to deal with; better just to have as many files on disk as possible, when admission time comes. I'll post some images on flickr so that you lot can take a look at the people who've been taking care of me these past couple of months, just as soon as I double-check that none of them mind this. And just as soon as I double-check the spellings of their names.
Anyway: I'd best be getting to bed, I'm expected tomorrow at the Victoria Infirmary at breakfast time.
Being treated as an outpatient makes a nice change and, apart from a mix-up last week with my regular medication, it's gone quite smoothly so far. In fact, I've only had two clinic visits in the past fortnight; the rest of my time has been at home. Having said that, things seem to be picking up again. I have an appointment tomorrow morning to have some extra blood taken, then one later on at the Royal Infirmary, where I'll meet with the transplant unit staff. I've been warned that they'll try to talk me out of going through with the procedure, due to the risk of extremely serious side-effects; the transplant unit has already given me a list of things which I should do before the operation, one item on which encourages me to set my affairs in order. I suppose this means I ought to square my overdraft sooner rather than later. I'll get a couple of units of blood on Friday, starting at eight forty-five in the morning (!), but then I'll have the weekend off before I'm due in at the Southern General for a three-weekly dose of pentamadine; the co-trimoxazole which they had me on in my earlier bouts of neutropenia was apparently suppressing my platelet production a little more than they were happy with, so they're changing my antibiotic prophylaxis this time round. That'll involve a couple of hours spent with a nebuliser, but afterwards I should have another wee break from the hospital; the last break I'll get, it's looking quite likely, before my transplant and the culmination (or conclusion, if you like) of my treatment. Better make the most of it.
Other than that, there's not been much else happening. Amazon delivered my scanner, so I spent a couple of hours this week scanning in a sheet of negatives and taking a look at them. I've not scanned in any Leica negatives yet, and I'm not actually sure when I'll get the chance, what with sleeping upwards of sixteen hours a day and not really feeling particularly up to anything that feels like work during the other eight. I'll maybe try to do a big batch on the weekend, or early next week, and that'll give me some material to work on during the next isolation phase. I was hoping I might bring the scanner into the hospital with me, but it's really too bulky to deal with; better just to have as many files on disk as possible, when admission time comes. I'll post some images on flickr so that you lot can take a look at the people who've been taking care of me these past couple of months, just as soon as I double-check that none of them mind this. And just as soon as I double-check the spellings of their names.
Anyway: I'd best be getting to bed, I'm expected tomorrow at the Victoria Infirmary at breakfast time.
Saturday, 2 February 2008
Phase three
On Wednesday, finally, my counts were sufficient for me to be given the intrathecal methotrexate which marks day one of phase three. There were a couple of modifications to the routine this time around — first of all, they decided not to take a bone marrow sample this time and, secondly, they let me out overnight; normally I'd be kept in for observation post-IT, I suppose they must trust me now to be sensible. Anyway, Thursday brought me my first of this cycle's two intravenous doses of vincristine; maybe I ought to learn guitar or something in the next two weeks, capitalise on the time I have before the peripheral neuropathy sets in again. I also received two units of red cells on Thursday, along with the welcome news that I wouldn't need to come back in for an entire week; all of the chemotherapy in this phase is oral, apart from the monthly intrathecal and intravenous work.
Me, mum and dad spent some of the afternoon today visiting the Burrell collection; we ended up leaving the house a bit late, so only got to spend an hour and a half or so wandering around the place before closing. Aidan came up to visit in the evening, before dinner time, and we played Wii tennis for a bit; he's getting better, no doubt assisted by his lack of cancer. Also today, I got back the first set of developed negatives from my new camera; Amazon promise they'll send out my scanner at some point next week, so I'm looking forwards to seeing how they look. Big thanks to Niall and everyone for getting me that :)
Anyway, I'm sure there were a couple of other things which I meant to mention today, I just can't remember what; maybe I'll post another update tomorrow.
Me, mum and dad spent some of the afternoon today visiting the Burrell collection; we ended up leaving the house a bit late, so only got to spend an hour and a half or so wandering around the place before closing. Aidan came up to visit in the evening, before dinner time, and we played Wii tennis for a bit; he's getting better, no doubt assisted by his lack of cancer. Also today, I got back the first set of developed negatives from my new camera; Amazon promise they'll send out my scanner at some point next week, so I'm looking forwards to seeing how they look. Big thanks to Niall and everyone for getting me that :)
Anyway, I'm sure there were a couple of other things which I meant to mention today, I just can't remember what; maybe I'll post another update tomorrow.
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