It's been 120 days since my transplant, and a suprising 261 days since I was first diagnosed and I've finally had my central line removed, for anyone who doesn't know what that is it's the tube they've been using the last 200 days to take blood and give me chemo, but since I've hardly had blood in the last three months and I don't have chemo anymore it's out, and it feels good.
It took some persuading of the Doctor's to actually get it done, they kept umming and ahhing because my platelates were low but in the end I just told them that both of my consultants had said get it out so they did it. It was a long day, since I had to have a platelet transfusion first, then then line out, then some pentamadine, which never makes me feel great. It's a gas mask i've got to wear for about 20 minutes, some kind of antimicrobial gas to keep away infections and that. I can't say I'm feeling exstatic about the line being out yet, once the stiches are out and my platelets are up again maybe, right now its just a bit sore and i still feel a bit wary about touching it, but its great to have it out.
My CMV virus counts are still negative so no nasty anti-viral drugs to drag my blood counts down, hopefully they'll keep going up and up now, it's only the cyclosporin that's possible taking them down.
I'm feeling pretty down at the minute, I'm finding it very hard to stay motivated with the exercise when I cramp up so easily and finding it REALLY hard to enjoy anything I used to enjoy, by virtue of the steroids and lack of sleep I suppose. I've been told to try and stay awake during the day to combat the insominia, that's going to be pretty tough, when you're sleeping from 10:30 til 3:30am, maybe I should start going to bed at 9:30 for now.
Still I feel a lot better than I did three weeks ago so hopefully, again in the next three weeks when Uni starts I'll be almost back to normal. Not quite sure how fitting the timetable around hospital visits is going to work, I think I'm going to end up pissing off a lot of Doctor's. Got a feeling I'm going to be going in early for bloods then leaving pronto for classes and just telling them to phone me if there's any problems, considing I never have ANYTHING to tell them I can't reallyy see why this would be a problem, obviously I'd go to clinic appointments and I'm pretty sure I'm going to have freerange to choose my timetable anyway.
Right it's 5:21 and I'd really like to get some more sleep, though I think this probably unlikely we'll see.
FormerMember
Hi Will, good to hear from you and it certainly seems you have taken massive strides in the right direction, fantastic!! Good news about the antifungals and the line, look after the site.Dare I say though if you are not sleeping at night you should try and not sleep in the day, tough one though. How about trying to have a'routine' for now, however boring that sounds. Go to bed at the same time, after a bath, perhaps take a warm drink with you. Try and relax before going to bed I guess I am saying. Get up at the same time each morning and perhaps allow yourself a nap mid day, but no later, and ensure the nap is only for an hour or so. Of course you still need your rest!! If you sleep too late in the day it will affect your sleep at night.
Hospitals are usually OK -ish at accommodating timetables if you alert them to time constraints up front, I agree it does not always work though! As you say it is also worth speaking to the Uni. Did your exams go OK? When are you back?
I hope you have a great weekend and enjoy the promised sunshine.
Take care Will, look foward to hearing from you soon!
Good to hear thing are picking up and you must be looking forward t getting back to Uni and some sort of normality. I can only echo Debbie's comments about sleeping through the day. Once you are back at Uni though hopefully things will settle for you . I am sure it will be a struggle for you but determined as you are you will get there in the end.
Take care
Wishing you lots of luck and less sleepless nights
