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.

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.

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.

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.

Phase two complete

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.

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

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!

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.