So the week since my last post everything has continued to improve slightly each day, although I did tweak my back after writing the last blog which gave me a spasm in my back which is still playing up (but not as bad as it was) at times. Another problem I have is that my knees and hips have been sore too which I would have put down to the sitting around so much but my shoulders are sore at times too and when I move them a specific way, feels like everything just needs a good crack. This has made me think it is more the osteoporosis as much as the sitting around.
I'm trying to remember what I got up to during the week but I can't remember too much, but I didn't get out much, but more than last week, I went to the chemist on Monday to order tablets, Tuesday and Wednesday I just stayed in, Thursday I took a walk down to Connswater which was much easier this time than what it was last week and on Friday I had hospital and went down into work after as it was one of the managers was leaving to go on maternity leave till January so I popped in with some sweets for the party and to sign a card for her. I didn't want to linger around too much and take any chances with infections etc but at least I got to speak with a couple of the staff which is always nice and made me miss the place again for a while. I had also taken a picture of the sick line I last got from the gp to show them in work as I wasn't feeling capable last week of being able to take it in to them but we noticed that it was dated from January rather than March so that is one thing I'll have to do, but will have to get someone to pick it up for me as I'll be in hospital when it's ready.
I have also had a notion of getting a portable TV for when I'm in hospital for the IPL(cricket) and the world cup, so I went to napkin and bout one with a powered antennae, but when I got it home the sound doesn't work so had to go back and they're sending me out one from their offices, I would have just asked for my money back but I was very impressed with it (apart from the sound obviously). I even gave the manufacturers technical support a call to see if they had a solution, it seemed like a fairly small company and they had never heard of the problem, so either it was the one that doesn't work or no one has bought one in NI. I think it might be to do with what ever way the signal is broadcast here that the machine may not be able to decode the sound signal, which would suck. I'll find out tomorrow. But would be great to link it up to the projector on sunny days in the garden into a white sheet in the evenings for the footy.
I felt great on Friday, completely back to normal and maybe even a bit better, but I think this was steroid induced and that I might crash the next day, which is what did happen was pretty wrecked and had a bit of what seemed like a hangover from it, but it wore off pretty quick. I did shave my head earlier in the week and just in tome as my hair has stared to come out and I don't much want to clean up the mess like I had to last time. I have basically gave up on 24 after season 2 may go back to it but back onto Stargate and this time Atlantis which is much more my thing but not quite like SG-1 more military orientated even though its a science expedition. I've also been playing lots of World of Warcraft and caught up nearly completely with my character Insy.
Now for the more serious stuff, dun dun dun!! For hospital I guessed that I would be getting 6 cycles of the new chemo (R-ESHAP) as they had never said anything about it as they didn't know themselves. But if it continued that way I would have been getting out of hospital on the 11th July the day after got out from my very first chemo last year. But they informed me of the "long term" plan which was that I will be getting 3 cycles of ESHAP then a ct scan to make sure its all working as it should and if it is they are going to take stem cells doing a high dose chemo to destroy my whole immune system(which I don't have much of in the first place) then reintroduce the stem cells to grow back an immune system. First thing that came to mind was that this will possibly get rid of the ITP(my blood disorder) if the chemo hasn't already done that which I'll mention at the end. I haven't asked too much about the high dose chemo yet as there's still a while to go and we don't know if I'll be getting it or not so no point thinking about that yet.
Came into hospital on Monday and everything got started earlier than the last time at about 12 and the peritin made me dosie and tired for the rest of the day as always so slept for the next few hours. All of Monday went grand didn't drink much which kept the fluids balanced but the tinnitus still playing up a bit. Didn't get to sleep until about 3 just with sleeping all day. But I didn't mind got stuck into spy hunter on the vitta that I was stuck on a mission for and done it first time. Been reading mostly and watched jackasses Bad Grampa part of it with my mum which was a bit awkward at times but still think she enjoyed it.
Today getting washed as I only trimmed my beard and head there was some sheddage so I've asked my dad to bring up my clean shaver which barely gets used just get rid of it, make things easier. Also feel a little more bloated today, not much but feel a bit of pressure on my fave and head nothing bad or to worry about though. The tinnitus seems to have got a little bit worse today too although all seems to be going really well ins and outs are as they should and all the counts are grand too.
This day last year I was up at hospital and was the day that we thought that the rhombiplostim (or however its spelt) was starting to work its magic with the counts starting to be normal again, but I did have my "infection" by this stage I think it was about 2-3 weeks before that I started coughing. Can't believe its been a year now that this has been going on for and considering what's been happening I'm as happy as I've ever been and more relaxed too. Its great!! Roll on summer beers garden and the world cup!!
FYI I've done this on my phone and the first time I had done loads and left the app and it whipped it all so had to start from scratch. Really annoying when you're pushed for time!!