Monday was of course Day 29, and the last day of Phase 1, so I had my last asparaginase injection, as well as another bone marrow test. Kindly they offered some sedation this time, so it wasn’t nearly so bad… Actually, I think it probably was still very painful at the time, but a) I was relaxed enough by the sedation not to worry (and thinking about it is the worst) and b) I couldn’t remember it afterwards (though I think I remember thinking, ‘ah yes, it does still hurt a lot, doesn’t it?’). I even dozed off when it was over, and was probably quite amusing until the effects of the sedation wore off.
Tuesday I was confused, as my brain had given up counting beyond 29, but the doctors came in and I chatted to my consultant about the plan. Phase 2 was explained to me: it is basically another four weeks of chemo, mostly intravenous but once a week intrathecal, too. It will start when my white blood cells are back at an acceptable level, as I’ve mentioned before. It could be done with me as an outpatient, though coming in for five days out of every six, but because I do not live locally I’ll do it as an inpatient again, though they might let me out occasionally, for a day or two. At some point I need to talk to the transplant consultant about Phase 3: we still do not know what it will be but at some point I might have to make a serious decision about whether, given the option, I’d go for the allogeneic transplant option (bone marrow from an unrelated donor), which has better chance of cure but higher risks than the autologous transplant or longer term chemotherapy options.
Wednesday I was in a complete daze: I barely slept at all on Tuesday night, perhaps due to being excited/nervous/worried about being let out the next day. I had strange pains in my knees, and then was worried that would stop me from going home, and all in all I just couldn’t drop off. As a result, I was so sleepy on Wednesday that I almost remember it as though it were a dream – Harriet had half-packed my room, and doctors and nurses kept drifting in and out with added info etc, and the usual routines were confused by the fact I was leaving, though I didn’t know when. I was still in a daze when I left the room and went home: but it was lovely to put clothes on, breathe in fresh air, wander down (propped up a bit as my legs are pretty hopeless after five weeks mostly in bed) to the car and then come home. Surreal when you haven’t really slept, though…
Thursday I was on better form, having slept brilliantly on Wednesday night: perhaps too much, as last night my dad did find me making toast at 2:45am! I was a bit hungry, and think I had a coffee a bit later than I should have done last night, and I was getting excited thinking about what to get certain people for Christmas (had a couple of flashes of inspiration: hurrah!).
Today I was very sleepy, perhaps as a result of that, and had a funny dozing couple of hours after breakfast, where I was having strange dreams, but was aware I was dreaming, and still in touch with the awake world. My steroids are being steadily reduced, and I guess they’re not keeping me awake so much (though my appetite’s still on good form!), hence I was able to half-sleep during the day. I didn’t really get going today until about 4pm, therefore, and haven’t been very energetic at all. But I’m feeling ok otherwise!
Supper time – must go. Lamb chops: yum!