Whew… long and hard days

Well, on Day 15 I promised to expand on just why that day was so long, and at last I’ve got around to it. It started gently enough, with a trip down to chest x-ray (a weekly routine), though I did manage to forget my wallet, so ended up making another trip downstairs straight afterwards to buy the newspaper. Anyway, back in my room I was swiftly plugged into the drip to receive my scheduled chemotherapy: two lots because it was Day 15. It was only once I’d had that that the doctors could order my intrathecal, so as to prevent there being any chance at all of any of the drugs going in the wrong way. The intrathecal had been postponed from Day 14 because it had been a Bank Holiday and thus there weren’t enough doctors around. Anyway, the intrathecal chemo now having been ordered, the nurses took a bit more blood, as one of the samples from the morning hadn’t been as full as needed to be. Easypeasy. In came the anti-fungal and I was plugged into that while I awaited the intrathecal chemo of joy… But alack! My platelets were down! Platelets are good at clotting, so since the doctors were soon going to be stabbing me in the back (in the least sinister way possible), some platelets were ordered in, the anti-fungal was paused and I started getting the nice yellow platelets dripped into my arm. However, a PICC line is somewhat narrow, and the doctors needed to do the intrathecal by 5pm (I think because it’s a complicated procedure, so they like to have the rest of the hospital still working at full capacity in case anything goes wrong), which was looking a bit tight at the speed the platelets were going in. Never fear, they stuck a cannular in my right arm and plugged the second bag into that, so I was getting platelets in both arms. At about 4:45 they finished, so a bit more blood was taken and rushed away to check that my platelets were now sufficient… They were, so the intrathecal could progress, which it did. Unfortunately it is a tricky business, and it can take a while, particularly when your spinal fluid is as difficult to find as it is in my back. It took two doctors and about 40 minutes in total, but we got there in the end and I could lie back for 4 hours and finish off the anti-fungal drip. When that eventually ran out, I bullied the nurse into taking my new cannular out (she wanted to leave it until the morning in case it was needed again for more platelets, for example; I argued that it was hurting, and that platelets could go in my PICC line if they were really necessary again, provided I didn’t have a deadline), and my day was finally over.

Days 16 and 17 weren’t much fun either; the former due to unpleasant bowel actions and general weariness; the latter for a number of reasons. First I woke up at 4am with my back in agony: I had the doctor in, who poked around but didn’t find any clues as to what was wrong; I was carted down to x-ray for another chest scan; I had a jab in my stomach – ouch – in case it was a PE; had some painkillers and eventually got back to sleep. Then when I woke up feeling grotty, I had my breakfast, only to rush to the bathroom to break my throwing-up duck (first time since my diagnosis!). At that point a porter appeared to take me to the nuclear scanning place (sounds cool, and the machines definitely looked cool), but I had to make him detour halfway there so I could throw up again – I was very shivery and had an awful headache too. I made it to the nuke scanner, where I sat feeling absolutely terrible for a few minutes before they got me in for the scan: remarkably as soon as I was lying down I felt much better. They did the scans, which were mostly painless (only one jab, into a vein in the hand), and sent me back again. I was sat in the general scanning waiting room, clearly in a lot of discomfort (as the headache/nausea/fever came back as soon as I was back in the chair and had my mask back on again, being neutropaenic by now), and fortunately one of the staff noticed and managed to grab a porter, who whizzed me back to the Ruth Myles Unit. I reached my room just in time to leap into the bathroom and get rid of the last of my breakfast… Then I staggered out and curled up on my bed, still feeling awful but the nausea relieved a bit once I got to lie down again. I was a bit teary and feeling grotty, so the nurse comforted me a bit and got the doctors to come and see me first (they were about to start their ward rounds). Now the headache and fever were ok, but the back pain had returned with a vengeance, so they asked lots of questions and poked and prodded to try to find the problem. They ruled out a few things, and made a couple of changes to my drug regimen, and then left me to sleep. That I did on and off for the rest of the day, with my back sometimes fine and sometimes agony. All in all it was a horrible day: Day 15 was just long, whereas Day 17 was tough.

The past couple of days (18 and 19) have been much better relatively. My back has sometimes been pretty painful again, but now I have painkillers prescribed for when it has been, and they seem to help. Strangely, I have also at certain times got a real headache when I’m standing or sitting, but I get around that by, erm, not standing or sitting too much. My appetite’s definitely been down, but my snacking seems to have kept my weight fairly stable nevertheless. Unfortunately even lovely ready meals haven’t been much to my liking, so I think it’s not just the hospital’s fault.

The chemo certainly seems to have kicked in, then, what with my neutrophils dropping so dramatically (they were 1.9, ie normal, on Christmas Eve, and are now 0.1, ie negligible, and have been thereabouts for a few days now), me being so weary since Christmas, and my body working at less than 100%. Apologies if I’ve turned you away as a guest recently: I’m sure you appreciate that sometimes I’m just not up to it! However, I was quite pleased to be on top banter form today, so don’t hesitate to ring if you do want to pop in. Oh, and my spirits haven’t drooped, except perhaps when feeling so awful on so many counts on Friday…

Last night I raised a (small) glass of bubbly at midnight with Gobby, Nelly and Angella to see in the New Year: I do hope it turns out to be a wonderful 2006 for all of you. I also watched Jools Holland, but had to switch off because James Blunt came on.

10 days of Phase 2 to go!