I had harboured a crazy hope that I might get through the whole of the Maintenance therapy without having to spend any more time as an inpatient, and was doing pretty well on that count, my body managing to deal with any little sniffles I’ve had since December. However, just before Easter I developed sniffles that were a bit more than ‘little’, combined with a headache and a strong feeling of lethargy, and I knew my neutrophils were down at about 0.2. There was nothing for it, I decided, but to pop into St Richard’s in Chichester to get myself checked out. I rang St George’s and they agreed, so my father drove me in…
I still had some vague hopes that they’d just give me some nice drugs and send me home, but I had no such luck. In I went, and spent the next six days as an inpatient – moving between four different wards in total during my stay. I suppose I’ve managed to avoid being an inpatient in St George’s during my Maintenance therapy so far, but that’s not quite such an impressive record.
I should explain why I was on four different wards during my stay. It was Good Friday when I went in, so the usual day staff weren’t working. I can’t remember where it was I went to first, but it was like a lightweight A&E. They then sent me to an Acute Admissions Ward (Petworth Ward), not because my problem was Acute (though my leukaemia was, if you remember), but because it was the best place for me that had a spare bed. The next morning the Haematology lot were ready for me, so I moved to their ward, but as Ford Ward (their home) was being redecorated, they had moved to another ward… After a few days, however, they declared that Ford Ward was ready, so I moved again. Having said that, the rooms were all much of a muchness, though my final room was the only one with en suite bathroom.
There were some interesting differences between St Richard’s and St George’s. St Richard’s were much less strict about confining me to my room when I was neutropaenic, and often left the door open. I could even open the windows! They didn’t come and wake me up at 2 o’clock in the morning to do my observations… It did all seem a bit calmer, but that wasn’t necessarily a good thing: I missed the more buzzing atmosphere of St George’s. Most of all I missed the nurses, though the staff at St Richard’s were very friendly.
As for the treatment, they sent me for a chest x-ray, took blood cultures and set me off on a course of antibiotics. As I don’t have a line any more, that meant cannulas, which are never much fun, though I didn’t have any problems with them this time (I had two, because they only last for a few days before they start getting sore). I also had to have more needles stuck into me when they wanted blood, which wasn’t very pleasant, particularly when we discovered that one vein still hasn’t really fully recovered from the PICC lines (which I had ages ago). When I went in, I was feeling rubbish but my temperature was actually OK; after a couple of days the temperature went up but I was feeling fine. I’m not sure that makes much scientific sense. But the antibiotics did their job, though my neutrophils were taking a long time to grow. Eventually they sent me home with several doses of G-CSF (growth factor) for me to self-inject into my belly. That did the job, helping me get my neuts up to 12 (wow! Normal is 1.8-8), and by then I was feeling absolutely fine.
Unfortunately, it did mean I missed two great events I had been looking forward to. Fortunately I’m pretty used to plans going awry these days, so it wasn’t as disappointing as it might have been. The first was the Easter Retreat at Downside, which was apparently lovely as always, and the second was my trip to Italy, which would have been my first foreign trip since before I got ill. I had planned to spend a few days with Freddie and a few days with Mariacristina, but my low counts meant that I didn’t want to risk flying.
Now the Maintenance therapy is running again: I’m back on the chemo tablets, though at 50% dosage. Having got away with not having a bone marrow biopsy for ages (that’s the one that REALLY REALLY hurts), I now have one planned for Wednesday: my consultant sadly realised that I should really be having them every three months.