Simon Status

As I was saying

2008-05-13T05:55:00.000-07:00

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.

An overdue update

2008-05-05T23:55:00.000-07:00

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.

Exciting developments

2008-04-27T16:13:00.000-07:00

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.

Par for the course

2008-04-20T23:23:00.000-07:00

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.

One week in

2008-04-17T22:09:00.000-07:00

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 +1

2008-04-11T22:52:00.000-07:00

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.

Another rare update

2008-03-24T00:24:00.000-07:00

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.

A rare update

2008-02-14T01:40:00.000-08:00

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.

Phase three

2008-02-02T22:56:00.000-08:00

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.

Bits and pieces going on now

2008-01-29T03:31:00.000-08:00

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.

Still nothing much going on, but at least I'm out

2008-01-19T17:34:00.000-08:00

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.

Nothing much going on

2008-01-14T00:58:00.000-08:00

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.

A bit of bad news

2008-01-09T00:51:00.000-08:00

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.

Phase two complete

2008-01-08T00:34:00.000-08:00

I received my final consolidation dose of cytarabine today, thus completing the second phase of my treatment. All I need do now is wait a week or so for my counts to recover, and I should be getting back out for a while. What happens afterwards depends on how quickly the tissue typing for my transplant comes through; I'll either get a short break on a much less intensive course of chemotherapy, or go straight back on to the IV methotrexate and other nasty stuff. Here's hoping for a donor.

Anyway, not a lot else to be said for the past couple of days. I've been sleeping a lot, as usual, but not a lot else. Speaking of which, I probably should go to bed now. Good night.

2008-01-05T23:01:00.000-08:00

I slept through almost the entire day, yesterday, only really waking up for visitors and when the nurses needed my attention. I was told in the morning that I was quite anaemic, and due some blood, which probably had a bit to do with my tiredness. Liz Watt came round to visit me in the afternoon, and brought me a book of photographs, Jiří Všetečka's The Walker of Prague, for Christmas. I've only quickly glanced through it, but it seems to be a mixture of shots of the architecture of the city's bridges and cathedral and so on, with some street photography from various periods thrown in. It's very nice.

As it happened, my blood never did show up. I had my cytarabine injection quite late on in the afternoon, through a peripheral line, but that was pretty much the extent of my treatment for the day. Sleeping so much was quite nice, it certainly made the time pass.

I spent much more of today awake, though presumably I'm even more anaemic than I was yesterday. I was up quite early in the morning too, having slept very well; in fact, I was turfed straight out of bed after my breakfast, so that the domestic staff could sort me out with fresh sheets. The shower was pretty cold, perhaps this contributed to my lack of sleepiness; I've yet to find out why the water is cold some days and warm on others.

My cytarabine was ready in the morning, so they dosed me up with that. Mum came to visit after lunch, and my blood finally arrived; they hooked me up and I settled down to a nap until dinner time. Dad visited after dinner, and made an attempt at the impossible puzzle which Francis gave me for Christmas. I don't know why he bothers; he gave up about nine o'clock and went home.

I'm quite tired again, in any event, so I think I might go to bed. Perhaps I'll watch the start of a movie before I sleep.

Back inside for a bit

2008-01-03T15:58:00.000-08:00

I've had a quiet couple of days; all of my chemotherapy for this block, apart from four cytarabine injections, has been completed. Unfortunately, my neutrophil count has also dropped again, so it looks like I'll be spending the next fortnight or so as an inpatient; the numbers seem to recover slower and slower with each week's dose of poison, and they were at 0.3 yesterday. It's unlikely that they'll recover past 1.0, when they'll let me out again, for at least the next ten days or so.

Anyway. I spent today poring over the Cocoa and Objective C documentation, and learning to program for Mac OS X — I have a simple (and still slightly buggy) calculator application to show for my troubles. I'll maybe write something a bit more substantial tomorrow, if I can think of anything worthwhile. It's quite a nice programming environment, OS X, once you're used to Objective C's slightly odd syntax.

Anyway, it's quite late now; I should probably get some sleep. Good night.

Happy new year!

2008-01-01T23:26:00.000-08:00

I was allowed out on Saturday night, but not until quite late; by the time we got home, I was too tired to do anything but go straight to bed. We went back in on Sunday for my bloods, and I got out a bit earlier; my dad wasn't home yet from his holiday to Uist, and mum had already left for hers, so my aunt Helen drove through to take me home. I went for a walk up to the supermarket where I used to work, but almost nobody was around; I picked up some mushrooms for a pizza and headed back down the road. My gran came down to visit for a while, and we had fishcakes and chips for our dinner. I got a bit tired afterwards, and went to bed.

On Monday I'd been told I was due to have a new Hickman line inserted, so we headed in quite early. Unfortunately, the radiology department decided that they didn't have a slot open, after all; the earliest I'll be able to get a new line will be next Tuesday, and there's some debate over whether there'll be any point in putting one in so late in the phase. I'll need a central line come stem cell transplant time, certainly, but the next phase (maintenance) only calls for a very few intravenous procedures; I'll decide later in the week whether to go ahead with having a new line implanted. The only other procedure prescribed for Monday was an injection of cytarabine, so I had a peripheral line put in. The chemotherapy was quite late in coming up, so it was about four o'clock before I was let out for the day. I made a pizza with the mushrooms I'd bought the day before, and ate it while watching Spartacus; afterwards, I went to my bed for a while. I woke up around ten o'clock and decided to stay awake for the couple of hours before the new year came in; I had a little champagne at the bells, and went back to bed.

We didn't need to go into the hospital at all this morning, so I woke up at nine o'clock and made myself an omelette for my breakfast. Dad woke up and got ready, and we went for a drive to the Burrell Collection. The museum was closed for the public holiday but the rain let up for a while, so we went for a short walk in the grounds instead. There were actually quite a lot of people out and about, considering it was New Year's Day. I was pretty worn out by the walk, so I went to sleep as soon as we got home. Dinner was at about four o'clock, so I was woken up for that; gran sent up some fish for us, which dad cooked with roast potatoes and peas and corn on the cob. I went back to bed for a while after this, while dad and Gabriel went up to John and Elaine's for the family New Year's party. I spent the rest of the day lazing about, upstairs and down in front of the television; it's getting quite late now, so I think I'll go back to bed. In early tomorrow.

No more Hickman line

2007-12-28T22:19:00.000-08:00

I had a lot on, yesterday, and I was far too tired by the evening to do any writing. Sorry about that.

I woke up a bit earlier than usual, or rather was woken for my blood and couldn't get back to sleep afterwards. The ward round was quite late in the morning, and filled me in on what was planned for the day; platelets first, to bring my clotting up, then cyclophosphamide and my intrathecal methotrexate in the afternoon. Quite a busy day. Everything went quite smoothly, but I really was quite busy; the only time I got a chance to lie quietly all day was after my intrathecal, and for some reason I just couldn't sleep then. Instead I watched the final hour of The Godfather Part II, which I started watching on boxing day. Eventually, around nine o'clock, I finally felt very tired indeed and went to sleep early.

Today was a lot quieter. It was decided that my Hickman line had finally become more of a liability than an asset, so it would be coming out at some point in the afternoon, which also meant that I'd need a peripheral line inserted. Apart from these little procedures, though, nothing out of the ordinary was planned. Mum came round to visit after lunch (fish and chips), and Shamus inserted a peripheral line into my right hand. It's weird being hooked up by my arm, again, after so long using the Hickman. I was given my cytarabine injection into the new line, then it was flushed and disconnected; it's nice being free of the lines. I had a little sleep, then Emma — one of the registrars here — removed my Hickman line. Due to the amount of damage I'd already done to it, it was literally just a matter of snipping the suture anchoring it to my skin and pulling it straight out. It wouldn't have held in for very much longer, even if it hadn't been removed today, I don't think.

Anyway, I'm quite tired again, now. Good night.

Happy Boxing Day!

2007-12-26T22:54:00.000-08:00

Sorry for not updating yesterday, I don't really have an excuse other than festive laziness — I was too busy watching television during the time I'd normally have spent blogging to write anything.

Yesterday was quite good fun. Mum, dad, Francis, Gabriel and Madeleine all came up to visit in the morning, and brought me my presents. Socks and bottles of smelly stuff dominated the proceedings (the staff bought me a little nice little French Connection toiletries set), but I also got an impossible jigsaw puzzle, a Mighty Boosh DVD and a copy of More Brain Training for the DS. Apparently my brain age is 60.

All of the excitement got to me pretty quickly, and everyone cleared out after lunch to let me take a nap. I ended up spending most of the rest of the day on my own (aaaaw), which is a first for me on Christmas. Mum and dad came to visit again for a while in the evening, and we watched Doctor Who. After this, I channel surfed for a while and then went to sleep for the night.

I was woken up at 1 o'clock and then at 2:30am to have some blood taken for one of the tests they run against my antibiotics dosage, then again later in the morning for my regular full blood count sample. I'm sure there were other interruptions during boxing day morning, because I woke up at nine o'clock feeling pretty shattered. To compound this feeling of rubbishness, the relatively rich food I ate yesterday conspired with the fizzy lucozade I've basically been living on to give me quite a sore tummy throughout the day. As a result, I just tried to sleep as possible; I did watch the first third of The Godfather Part II, but apart from that I really did sleep – or at least doze – for most of the day.

Mum and dad were up to visit during the afternoon, and left to drive dad to the airport. He flew out to Uist for a short break on his own, just him and his cold, at the little house we have up there. He'll be back down in Glasgow next week, at which point Mum plans to go up to Uist with, with Madeleine I think. Anyway, Mum visited again in the evening, but I slept right through this; I only heard from the nurses later on that she'd been up.

I'm going to watch another hour of this movie now, I think, and then go back to bed. Good night.

'Twas the night before Christmas

2007-12-24T20:55:00.000-08:00

And all through the ward, not a creature was stirring; not even the irrepressible Dr. Tansey. He'll be in tomorrow, though.

Mum's got my little room looking quite festive, with lights and a jar of baubles and a little plastic tree from Habitat. She complains that the nursing staff gave her a row for not making the place up earlier. I've even got a Christmas stocking hanging from my gas cylinder bracket, with a present or two waiting for me. The family will come up tomorrow morning to open their presents with me, so I'll wait. It'll be interesting to see what Santa brings The Man Who Has Everything Including Cancer.

I felt slightly better today than I have done, I don't know whether it's the last vestiges of the infection leaving me or if I'm just getting used to the trauma the antibiotics are visiting on my system. Hopefully I'll be well enough tomorrow to eat the roast potatoes which the kitchen have promised to send up for my Christmas lunch. If not, it'll be festive rice cakes and Lucozade for me. The nutritionist will be very disappointed with the missed opportunity to put on weight.

Nothing interesting happened with my treatment, today. I officially finished the second week of phase two, with the fourth injection of cytarabine, so I suppose that's worthy of a milestone; only two weeks of chemo left in this block. The decision seems to have been made to put in a new Hickman line at the end of the week, once I'm off the antibiotics; this one is really starting to fray at the edges, and they're quite worried that it'll be colonised by bacteria sooner, now, rather than later. It's been quite a while since I last went under the knife.

Anyway, slightly better or no, I still feel pretty rotten. I'm going back to sleep.

Antibiotics

2007-12-23T01:55:00.000-08:00

Writing up a bit earlier today, what with the scarcity of late-evening consciousness lately. Thanks to everyone who's been enquiring as to my health during my recent blog hiatuses. I've been trying to sleep as much as possible, lately, and feeling pretty awful during those times when I've been awake. The high-dose antibiotics have utterly wiped out my intestinal fauna, so I can't really eat anything at the moment. Not that I've felt like eating anything in the past three days; I attempted some lightly salted tortilla chips this afternoon, but I soon gave up when my stomach started making some rather alarming noises. I might try again with some rice cakes or Ryvita or something later, if mum manages to get a hold of any for me.

Today was pretty quiet. Mum was up for a while in the morning, and stayed through the ward round and my cytarabine intravenous. She seems a lot more familiar with this sort of pump-'em-full-of-antibiotics medicine than she's been with the acute cancer chemotherapy stuff, and I think that makes her feel a bit more secure; I think she deals with people who feel like I do right now every day, at work. Dr Tansey tells me there's nothing can be done for my antibiotic-induced diarrhoea until they're sure I don't have clostridium difficile, but hopefully by tomorrow the lab will have got back to us with that and they can start me on the codeine. For now it's water and potassium tablets, and just hope I don't lose too much more weight.

Whoops, so much for posting early; I fell asleep after typing this up, and never got around to signing off. Well, I can do that now: goodnight.

Back inside

2007-12-22T21:41:00.000-08:00

Sorry again about the lack of updates, I developed an infection on Thursday and this is the first time since that I've felt well enough to type anything.

My uncle John drove me into the hospital on Wednesday, quite late in the morning, for my day in. He hung around long enough to sort out my duvet and see me into the care of the nursing staff, but headed off soon afterwards as he's not one of my named visitors. The nurses lost no time in getting me hooked up with a line for my cytarabine, and set up a second line for my blood transfusions; apparently they wanted to get everything out of the way before my intrathecal at three. Thus, I got my chemotherapy in record time and had two units of blood pumped into me at a rate of one every two hours. I also met with the nutritionist again, and she was pleased that my weight was holding steady; she prescribed some Fortisips for use at home, all the same. After this, they wheeled me round and gave me my lumbar puncture and methotrexate, and then just left me to rest for a while. All the day's activity had worn me out a little, so I think I slept for a bit. I can't actually remember what I did for the rest of the day, so maybe I slept longer than I thought; mum probably came up to visit in the evening.

I was woken for my bloods on Thursday morning, but fell back to sleep until about ten o'clock; the rest of my morning was pretty uneventful. My chemo was scheduled for about two, but some emergency on the ward caused me to be forgotten about for a couple of hours. I was eventually remembered and dosed with cytarabine, and then I phoned mum up and had her collect me. She got me home for about six, by which point I was already feeling a bit rough; I'd been dozing off in the car. I went straight upstairs and slept until dinner time, but I wasn't really very hungry and left most of the potato and cauliflower curry which mum had made for me. I went back to sleep, but decided (nutritionist's orders!) that I'd better get something substantial for a snack; I ordered in a fish supper from the place up the road, and mum collected it for me. Once again, I didn't finish the entire meal; I managed most of it, though, and my sister finished it off for me. After I was finished, I went back to sleep. I spent most of the night waking up and thinking I might vomit, but I just put this down to post-chemo nausea and eating too much; when I eventually was sick, mum called the hospital just to be on the safe side. They decided that my temperature wasn't high enough to worry about, so just sent me back to bed. I spent most of the night waking up and wishing I'd vomit again, just to get it out of my system.

Friday morning came, and I got quite a long lie. I really was feeling pretty unpleasant by this point, so mum eventually insisted that I get up and move it into the hospital. My temperature on admission had jumped to 37.9, which was rather cause for concern when weighed with my vomiting and tiredness; the doctors came round in due course and started me on a course of massive doses of vancomycin, gentamycin and tazocin, plus fluids. Apparently the doses of antibiotics they give people like me are high enough that they need to test blood in between administrations, to make sure they've not boxed in my kidneys. Anyway, they got me started on those, measured my temperature again (38.4C, ouch), gave me a paracetamol and left me to sleep it off. And sleep I did; I can't have been conscious for more than about three hours in total over all of Friday. The treatment seems to work, though, and my temperature was already falling by the nighttime.

I've felt much better, today. They still have me on antibiotics, and I still feel pretty tired and lacking of appetite, but much better overall. Much reduced nausea and tiredness, for one thing, though the tiredness was quite nice in a way; just sleeping through everything was better than dozing through the way I did today. I got my chemotherapy quite early today, and later on a unit of blood. The blood is still going in just now, as a matter of fact. What with the chemo and antibiotics, I've been hooked up to a couple of lines pretty much all day; this looks set to continue for tomorrow, at least. Hopefully I'll get my freedom of the room again soon. For now, I'm going back to sleep.

Edit: oh yeah, I almost forgot about the title of this entry. Because of my infection, they won't be letting me out again for the duration of this treatment block; if I'd remained healthy, I'd probably have had another day or two outside, possibly just stretching to Christmas. As it is, I'm in from now until mid-January, which kind of sucks; I guess that's just the way it has to go. Oh well, I've put up with longer incarcerations.

2007-12-18T21:40:00.000-08:00

Sorry for the lack of updates lately, I was too tired to write anything on Sunday and I had no internet access last night.

Sunday saw the last of my four days of daily cytarabine injections; the nurses are getting pretty good at streamlining the procedure, so I was out by about one in the afternoon. We decided to go for a drive up to the James Hamilton Heritage Centre, a park in East Kilbride which has a boating loch with a nice short (a mile or so) walk around it. In less cancer-riddled days, I learned to sail, kayak and windsurf there; I don't think the protocol lets me back in the water until about 2010. Maybe global warming will let me dispense with the wetsuit, by then. After a circuit of the park, we went to the Centre's cafe for some tea; me, mum and dad shared a pot, and Madeleine and her friend had hot chocolate and Rice Krispie cakes. I shot half a roll of Provia 100, then accidentally rewound it all the way past the leader when I was changing to some Tri-X 400+2 for shooting indoors; it would actually be worth buying a leader retriever, just so that I could use those last sixteen frames of expensive colour film. Maybe I'll do that.

Once we got home, I took a little nap. A mile is quite a big step up from our usual five-minute walks in the park, and it did wear me out a little. My thigh muscles are actually still a little tired from the exertion, even today. I got through the rest of the day quite quietly, but got really tired at about nine o'clock and just couldn't muster the energy to do anything for the rest of the night – blog-writing included – so I just went to my bed.

We didn't go into the hospital on Monday until quite late, so I had a bit of a long lie. I had no chemotherapy scheduled for the day, so I just had my blood taken and then we waited around for the ward round to reach us. The doctors gave me the once-over and mum got the chance to have a little chat with Dr Morrison, December's consultant. I wasn't due any treatment on Tuesday, so the doctors offered me the opportunity to just spend the entire day at home; the caveat being that my blood count revealed that I was quite anaemic, so it really would be at home – I'd be too tired to really do anything else. The alternative would be to come in for a couple of units of blood, which would take about eight hours to administer; I could spend Tuesday in either my own or in the hospital's bed, and I thought the former sounded better. The doctors prescribed me two units of red cells for Wednesday, and sent us on our way.

I'd invited some friends, Michelle and Joe, around for lunch at one o'clock. They arrived just as we did, so we went inside and chatted and listened to music and stuff while mum made a nice wild mushroom risotto for us. We also played some Mario Kart on the old Nintendo 64, which was brilliant fun, before mum called us in for lunch; the risotto was delicious, but apparently mum thought it was somewhat overcooked. Michelle and Joe left after lunch, Michelle having work at four; mum gave them a lift down to the train station, and I went to take a nap. I spent the remainder of the day in bed, nursing my anaemia, and then my internet connection connection cut out; apparently it was something wrong on Virgin's end, because it was working again in the morning. I took advantage of the break in connectivity to get some sleep.

As for today, it's been just as uneventful as predicted. I took some photographs of the cat in the garden while the light was nice, this morning, then went down to my gran's for a lunch of fish and boiled potatoes. Internet chess and listening to music occupied me for most of the rest of the day; I went downstairs for dinner, but apart from that spent most of the day in my room. Tomorrow will be pretty busy, what with the blood and intrathecal and all, and so I think I'll turn in now for an early night.

A walk in the park

2007-12-15T22:38:00.000-08:00

I got up early this morning, at about half past seven, and made pancakes for breakfast. I couldn't find a measuring jug, though, so I just experimented with adding milk a bit at a time until the pancakes spread in the frying pan the way they're supposed to. We headed into the hospital for half past nine, and arrived a little later; Angus was on today, and okayed me to have my chemotherapy in the morning rather than waiting in all day the way we've been doing. So, I got my blood taken and hooked up to a line, and got my chemotherapy at about half past ten. I had the dressing on my Hickman line changed while the fluids were going in — it completely disintegrated last night, somehow, and was just hanging together by the corners. Anyway, we were out and blinking in the daylight by one o'clock, and with my mercaptopurine in a phial in mum's bag; no need to go back into the hospital at all, today. Hooray.

We decided to go for a walk in Victoria Park, because it was just a quick drive away under the Clyde tunnel. We walked around the boating pond and saw the ducks, then saw a family feeding the swans on our way back, with the inevitable swan-on-child finger-pecking. I decided that the fossil grove was too far to walk that day, so we drove back home. I took a nap for a couple of hours, and had a microwave cannelloni for an afternoon snack.

I spent most of the rest of the day just pottering around the house. I took a couple of pictures of people around the place, and rested quite a lot. I also arranged lunch with a couple of friends on Monday, so that should be quite good. I think I'll go for a shower, now, and go to bed.

Routine

2007-12-14T22:51:00.000-08:00

I felt pretty good today, much better than yesterday; I think I might have had some sort of a hangover from all the treatments I had on Wednesday. We went into the hospital quite early, and only just got caught in the rush hour traffic. Mum dropped me off and went on to her work, and I got to work on Clare's site; it's really coming along, now. I ate a "share with the family"-sized bag of salt and vinegar Kettle Chips in a single sitting, whose fat content both impressed and terrified the doctors. They're confident I won't have any problems putting my weight back on, once I get through the treatment.

At midday I had my lunch in the hospital, then got a little tired and went for a nap before my chemotherapy. The cytarabine turned up a little earlier today than it did yesterday, and I got the intravenous at about three o'clock; two hours of fluids followed, so I just stayed in for dinner. Dad was along at six to pick me up, and we sorted out my drugs and the arrangements for tomorrow and went home. Dad dropped me off and went to the supermarket to get himself some dinner; I took the walk down to gran's house for a little visit.

Tomorrow, it's hoped, my chemo might be a bit earlier — possibly even in the morning, if things go quickly. This means I might get out in the daylight, for a change; it'll be nice to go for a walk in the light with the Leica. If we can't get the chemo early, I think mum and I might go for a walk in the park before the I.V. I also managed, today, to get half-way through organising another lunch visit with my Uni friends, before my phone's battery ran out. Oh well, I'll be able to sort that out tomorrow. Big plans. I'd better get an early night.