BouncingCzech's blog

Yesterday was a lot of information to take in, I had a meeting with my case consultant and my specialist nurse, finally raised all the lifestyle and safety stuff that I'd wanted spelt out for me. The first thing I spoke to Jill (my specialist nurse) about was my parents. Obviously I want them to be involved in everything, otherwise they're just going to worry and with all the good will in the world I don't think they…

5:10am.. again didn't sleep all that well, still I'll probably head back up to bed in a little bit, try and get a couple more hours sleep, haven't got to be at the hospital until 11am today. I've gotten to wondering... can you take all this stuff too seriously? I know treatment and being careful with lifestyle stuff is important, but it seems like at the moment that's all I'm doing. Sorting out benefits, reading up on…

Just got in to hospital, today is Ambisone, Asparaginase and the IT Chemo. So I'll have to lay down for a couple hours after that as well, gonna be a long day... and I missed the sandwich trolley... damn! Felt pretty good so far today, nothing really to report to the Doctor I think, might mention getting another ENT appointment just to check up on how that biopsy they took from inside my nose is healing up just to make…

It's been a fairly quiet few days I got out of the hospital friday morning and I'm not due back until 9am this morning. It is now 4:26am and I've been awake since about 2:30am... definitely starting to notice these steroids keeping me awake. I went to bed at about half eight so I'm getting about 5-6 hours sleep, which isn't too bad, least I can sleep during the day hopefully. Today I'm due some chemo (not sure what exactly…

I was in the hospital until just after 6 in the end yesterday, the intrathecal wasn't too bad, went a lot better than the last one. So it was just that and the ambisone, my platelet counts and my clotting were really good (over 190) and hopefully that lumbar puncture will come back negative so I don't have to have them once a week. They said I was responding as well as I possibly could be to the treatment so far, which…