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.
Monday, 24 March 2008
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.
Tuesday, 29 January 2008
Bits and pieces going on now
After waiting so long for my counts to come up on their own, the doctors finally got bored early last week and decided to intervene. I've been taken off of the co-trimoxazole, which can suppress marrow function, and started me on a granulocyte colony stimulating factor, a subcutaneous preparation with the dual effects of encouraging neutrophil growth and causing pain in the bone marrow. After three doses, administered daily, my neutrophils were at 2.2 per nanolitre of blood, which is actually within the healthy range; I've not had counts like that since November. My platelets, on the other hand, weren't quite at the 75 they'd like to see before commencing phase 3, so that was put off for another couple of days.
Michelle Scott came round to visit us at home, on Thursday, to sort out some of the details on my Disability Living Allowance application. The three of us — me, Michelle and mum — spent a couple of hours trying to figure out ways in which we cast my condition in the worst possible light, so as to increase my chances of getting the grant. In the end all we could come up with were repetitions on the theme of my restricted freedom; having to remain within half an hour of the hospital; requiring round-the-clock supervision in case I suffered injury or developed an infection; living with the bruising and haemorraging risks associated with my low platelets. I mentioned my tingly-fingers neuropathy, though I think that's getting a bit better after my break from the vincristine; mum wasted no time in reporting this to the staff, of course, so I was treated to a nerve function test next time I was in the hospital — this basically involved Angus stabbing me in the fingertips with a sharp piece of metal and asking if I could feel it. I could.
I got Saturday off of visiting the hospital, due to my persistently sluggish platelet count, so me and mum went for a walk round the loch at the James Hamilton Centre. I made the circuit much more quickly than I did last time, credit for which must be shared between the improvements I've seen in my strength since getting out more, and the horrible weather; we didn't want to spend a minute more out in the wind and rain than we had to, so there was no doddling and no breaks. We had some tea in the cafe there, and then went home; I spent the afternoon inviting people to come visit me, now that my neutrophils were finally out of the 0.1-0.3 region they'd been in for weeks. As a result, Sunday was quite good fun. James and Ewan came round for lunch, a lasagna made up by mum on Saturday night and left in the fridge, and we wasted three or four hours talking about university stuff and going through the B3ta book; they eventually got a bit worried about when their train ran on a Sunday, and went home at about seven. Dad and I went for a walk round the block, afterwards, during which I posted a package of about seven rolls of film to the lab for processing; it'll be interesting to see how those turn out. We found our cat, Brenden, playing with another family from just up the road; they've been feeding him for years, they told us, and call him 'Jaguar'. I wonder how many other dinners he gets, it's no wonder he's getting so fat. I remembered when I got home that I'd intended to phone some old school friends when I was able to receive visitors; Aidan and Kieran came to visit at about eight o'clock, and we sat around talking for a while before playing Wii tennis for a bit. They took their leave when it started becoming obvious just how tired I was, though I'm sure they'd have kept playing all night given the chance; they left at about half past eleven to prepare for university in the morning, and I went upstairs and passed out until nine in the morning.
Dad drove me into the hospital in the morning, before (I assume) going off to work. I slept between about eleven and three, disturbed only to have my blood taken and to get the results (platelets still too low!). I wasted the next hour or so listening to music and surfing the web while I waited for dad to come back and give me a lift home; the doctors didn't see any point in having me in again till Wednesday, so I have another day off from visiting the hospital. We stopped in at the supermarket so that he could get some things for his dinner; I was to have fishcakes down at Gran's house. I spent the rest of the day relaxing and planning the things I should be able to do in three or four months once I have all this free time and no 30-minutes-from-hospital restriction.
Michelle Scott came round to visit us at home, on Thursday, to sort out some of the details on my Disability Living Allowance application. The three of us — me, Michelle and mum — spent a couple of hours trying to figure out ways in which we cast my condition in the worst possible light, so as to increase my chances of getting the grant. In the end all we could come up with were repetitions on the theme of my restricted freedom; having to remain within half an hour of the hospital; requiring round-the-clock supervision in case I suffered injury or developed an infection; living with the bruising and haemorraging risks associated with my low platelets. I mentioned my tingly-fingers neuropathy, though I think that's getting a bit better after my break from the vincristine; mum wasted no time in reporting this to the staff, of course, so I was treated to a nerve function test next time I was in the hospital — this basically involved Angus stabbing me in the fingertips with a sharp piece of metal and asking if I could feel it. I could.
I got Saturday off of visiting the hospital, due to my persistently sluggish platelet count, so me and mum went for a walk round the loch at the James Hamilton Centre. I made the circuit much more quickly than I did last time, credit for which must be shared between the improvements I've seen in my strength since getting out more, and the horrible weather; we didn't want to spend a minute more out in the wind and rain than we had to, so there was no doddling and no breaks. We had some tea in the cafe there, and then went home; I spent the afternoon inviting people to come visit me, now that my neutrophils were finally out of the 0.1-0.3 region they'd been in for weeks. As a result, Sunday was quite good fun. James and Ewan came round for lunch, a lasagna made up by mum on Saturday night and left in the fridge, and we wasted three or four hours talking about university stuff and going through the B3ta book; they eventually got a bit worried about when their train ran on a Sunday, and went home at about seven. Dad and I went for a walk round the block, afterwards, during which I posted a package of about seven rolls of film to the lab for processing; it'll be interesting to see how those turn out. We found our cat, Brenden, playing with another family from just up the road; they've been feeding him for years, they told us, and call him 'Jaguar'. I wonder how many other dinners he gets, it's no wonder he's getting so fat. I remembered when I got home that I'd intended to phone some old school friends when I was able to receive visitors; Aidan and Kieran came to visit at about eight o'clock, and we sat around talking for a while before playing Wii tennis for a bit. They took their leave when it started becoming obvious just how tired I was, though I'm sure they'd have kept playing all night given the chance; they left at about half past eleven to prepare for university in the morning, and I went upstairs and passed out until nine in the morning.
Dad drove me into the hospital in the morning, before (I assume) going off to work. I slept between about eleven and three, disturbed only to have my blood taken and to get the results (platelets still too low!). I wasted the next hour or so listening to music and surfing the web while I waited for dad to come back and give me a lift home; the doctors didn't see any point in having me in again till Wednesday, so I have another day off from visiting the hospital. We stopped in at the supermarket so that he could get some things for his dinner; I was to have fishcakes down at Gran's house. I spent the rest of the day relaxing and planning the things I should be able to do in three or four months once I have all this free time and no 30-minutes-from-hospital restriction.
Saturday, 19 January 2008
Still nothing much going on, but at least I'm out
Wow, it's been almost a week since I last updated this. I've been allowed home between phases, just travelling in and out for bloods and so on, despite the fact that I'm still highly neutropenic — today's neutrophils were only at 0.1, so I was pretty surprised to have been let out at all. As with the break between phases I and II, the doctors are waiting for my marrow to recover and my counts to come up before launching into the next round of treatment; they don't have a particular date set, but hopefully it'll be some time early this week.
The only interesting medical thing that's happened recently is that I've had the results of my CT scan back. As expected, my lymph nodes have mostly reverted to their normal size in response to the steroids and chemotherapy. One slightly worrying feature on the films is a two-centimetre lump of something at the site where a lymph node should be; this could be a lymphoma, but is most likely a sort of scarring left over from when the leukaemia was working my lymph system over. The doctors will keep an eye on it, of course, but in the meantime it's encouraging that I'm not presenting any of the usual symptoms associated with dying of cancer; the consultants certainly don't seem to be treating this as anything to worry about.
I have to go into the hospital relatively early tomorrow morning, to get some platelets and a red cells transfusion, so I'd better get some sleep just now.
The only interesting medical thing that's happened recently is that I've had the results of my CT scan back. As expected, my lymph nodes have mostly reverted to their normal size in response to the steroids and chemotherapy. One slightly worrying feature on the films is a two-centimetre lump of something at the site where a lymph node should be; this could be a lymphoma, but is most likely a sort of scarring left over from when the leukaemia was working my lymph system over. The doctors will keep an eye on it, of course, but in the meantime it's encouraging that I'm not presenting any of the usual symptoms associated with dying of cancer; the consultants certainly don't seem to be treating this as anything to worry about.
I have to go into the hospital relatively early tomorrow morning, to get some platelets and a red cells transfusion, so I'd better get some sleep just now.
Monday, 14 January 2008
Nothing much going on
I've spent most of this week sitting around, waiting for my counts to come up. My neutrophils are currently at 0.2, Dr Tansey would like to see 0.3 before he'll let me go home for a while. The only procedure of note, recently, was a CT scan; from what I surmise, this was intended to give the doctors a look at my lymph nodes, presumably so that they can pinpoint with greater accuracy just where I am on the tALL-slash-lymphoma spectrum. I haven't heard any results from that, but I haven't spoken to a consultant lately. Apart from that, it's been quiet here. My weight has started to come up, albeit very slowly, which I attribute as much to my lucozade diet as to the break in chemotherapy. I'll have a fish supper if I get home tomorrow, see if I can't capitalise on this upswing.
Anyway, it's late now. I'll try not to let myself go this long between posts in future, even when there isn't anything happening. Good night.
Anyway, it's late now. I'll try not to let myself go this long between posts in future, even when there isn't anything happening. Good night.
Wednesday, 9 January 2008
A bit of bad news
The tissue typing people have finally got back to us and, unfortunately, it seems that none of my siblings are suitable matches for my stem cell transplant. The transplant will still go ahead, it'll just be delayed and made slightly riskier by the complication that we need an unrelated donor — in the mean time, I have high-dose methotrexate to look forwards to, in addition to a handful of other intensive chemotherapies. My odds are down a couple of percentage points on this news, but I'm told I've not to think like that.
Oh well.
My counts continue to rise, so hopefully I'll be out for a wee break sooner rather than later. Dr. Tansey has finally scheduled me for the long-awaited CT scan; the doctors will finally get their look at the lymph nodes in my chest, tomorrow, and with some luck they won't find anything untoward.
For a change, I didn't feel very sleepy at all today; I only went for one long-ish nap between lunch and dinner. In fact, I still don't feel sleepy now; I think I'll watch some TV or something, see if I can't bore myself into unconsciousness.
Oh well.
My counts continue to rise, so hopefully I'll be out for a wee break sooner rather than later. Dr. Tansey has finally scheduled me for the long-awaited CT scan; the doctors will finally get their look at the lymph nodes in my chest, tomorrow, and with some luck they won't find anything untoward.
For a change, I didn't feel very sleepy at all today; I only went for one long-ish nap between lunch and dinner. In fact, I still don't feel sleepy now; I think I'll watch some TV or something, see if I can't bore myself into unconsciousness.
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