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.

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.

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.

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.