Yesterday was check up day back in Southampton, and all seemed to be going well!
They are still pleased with my progress, and Joan (post transplant head nursey bod) managed to deal with a little lump of dried blood that has been hanging about since I had the line put it. It turned out to be a scab that had formed over a small stitch that wasn’t taken out as they couldn’t see it – due to the scab!! Anyway, all sorted much to our delight 🙂
That was followed by a meeting with Debbie Richardson, my consultant, who decided to send me into a bit of a meltdown. (Well, nearly). They have been reducing my Cyclosporine dose steadily which I thought was a good sign. But… as it turns out, it’s because there’s too much of my bone marrow left, and not enough of Jane’s yet. You can imagine my reaction… I already feel sick all the time anyway! Apparently my blood is now 78% Jane’s, and 22% mine – but they are looking for it to be in excess of 90% Jane’s otherwise it’s possible my marrow will take over again. Not what we want – and I was left panicking that I was going to have to suffer the whole bloody process all over again. The other problem is that reducing the cylosporine dose increases the chance of GvHD (Graft versus Host Disease), and I really don’t want that.
Luckily Zig was with me and spotted my panic before it really got a grip, and between him and Debbie they explained that everyone is different and it’s not an exact science. There is a lot of fine tuning to be done. Also no sign of GvHD so fingers are still well and truly crossed. This morning I had the follow up call from Joan about blood counts etc. All still doing brilliantly and nothing has gone into meltdown yet- so far so good – and cyclosporine reduce to 50mg. On which subject…
After my meeting with Debbie I had to go to the pharmacy to pick up last week’s drug order, dropping off this week’s top up prescription on the way. At the pharmacy there was no record of the order, so I had to go back to Debbie to get another prescription. Don’t forget, Southampton General Hospital is massive. At least 100 miles from end to end, or that’s how it seems in my state. Got back to the pharmacy having dropped off the replacement prescription at the Oncology department, and was given the pills. As I was there I thought I would also get the stuff I had ordered for next week, the oncology people said it had been processed, but once again there was no record of it in the system. FFS!!!
Anyway – today’s another day and I’m feeling a bit better again. I don’t know if it’s the weather, but I am not getting as cold as I was so I have popped on a lovely little Cath Kidston number!