Hi everyone, hope all is still going well for you. The last time I wrote on this was when I was up at hospital a couple of weeks ago getting the rituximab, it was a long day sitting in the car and so it spurred me on to make the car that little bit more comfortable. I’ve ordered in a few things so that I’ll be able to sit, open the boot and look out and be comfortable and even sleep if needs be. Sort of like a metal tent, I’m looking forward to parking up in Portrush looking out over the water reading a book. Will be even nicer when the sun comes back again and gets a bit warmer.
That was pretty much all I did that week looking up different things and getting ideas of what would be the best way to go about it. I didn’t want anything permanent as I’d still like to use the car as a car and something that wouldn’t take long to get set up. So What I’ve come up with fits in the boot and I just need to drop the back seat and open it out. Have yet to actually try it but It all should work as such.
The cramps came back pretty much the next day after starting back on the chemo and needed to go back on the hospital the next day to pick up some things and speak with the nurse about the Bone Marrow Transplant (BMT), Things are moving along fast with this and I’m pretty much next in line to come in and get that started. The good news is that It’s not going to be as bad as the previous transplant, as they’re hoping that my new immune system does most of the work rather than completely destroying the old one and just regrowing the new one. And should only be 3-4 weeks, maybe…
It was planned to get a bone marrow sample and a lumbar puncture taken the following Monday and just need to get a heart scan and lung function test which shouldn’t take long to come through and then depending on availability I’ll be into the hospital to get started.
Monday came and got the lumbar puncture and bone marrow test, I was told that caffeine would help reduce the symptoms of the LP so I went and got a 2L bottle of Dr Pepper as it’s full of caffeine. Was a bit stiff and uncomfortable on Monday night but nothing too bad. Similar on Tuesday and Wednesday with the worst of headaches despite drinking buckets of fluids. Thursday I thought things were improving and after having a late lunch I was sick and everything just started running out of me.
This was a real tipping point and I ended up just lying in bed the rest of the day. Friday morning I really struggled and any time I sat up or tried to get up I got light headed and my head was excruciating. I ended up phoning the hospital, who wanted me up. There was no way I was able to drive over so I got a lift and some help making sure I didn’t fall in the house. Once in hospital they gave me pain killers and fluids. Now Sunday things have improved a bit although, my head is still sore, stomach has settled but still not 100%.
We’re not quite certain on the sore head still being there but it does seem to stem from the LP, it seems to be causing the muscles to spasm and tighten so if I am sitting up or standing for very long, a couple of minutes, it gets really sore. Lying down seems to help most, relaxing the muscles and pain killers help too, but I prefer not to take any if I can ease it without them. I just hope that it settles soon and I can maybe get a bit of normality for a few days before coming back into hospital again. Bit of a nightmare having the hangover from hell for a week now. I do like finding the worst possible way to do things. Need to lie down again now to try and ease this as it’s building up again.