I've been taking the Ganciclovir at home now for over a week and its clear from the blood tests that the virus counts aren't going down. The good thing is this means no more doing the Ganciclovir at home and hooking myself up to that syringe driver for a couple of hours a day. The bad news is that I'm going to have to be admitted while I have this other drug called Phosgarnate, plus its pretty nasty stuff, after only a few doses its started to affect my kidney functions and it means I've got to have a lot of replacement fluids like magnesium and calcium. The Phosgarnate makes me pretty sick but its only temporary.
So I'm pretty gutted about that but at least it means getting rid of this virus at last and my Doctor says it should only be a few days of treatment. I'm hoping which the virus gone I'll start to get my appetite back some more, that's really what's concerning me at the moment, I'd hoped to be feeling a little better than this at this point. I mean I know I can't rush things and most people at this stage don't feel anywhere near as good as I've been over the last couple of weeks but its just frustrating not to be able to eat properly, stops me trying to get fit again really.
The last few days have been a bit of a struggle, being on my own at home, it's difficult to find the motivation to cook and all that after a while. Still I've seen a few friends over the last couple of days and I'm going to see a few more over the next few days so I'm looking forward to that. I think just being alone makes everything seem a lot worse, even though I've been through a lot worse than this already and felt a lot worse.
FormerMember
Hi Will, never replied to you before, but read your profile and wanted to send you a message as it touched me what you said about being alone makes everything seem a lot worse. I have cancer, and just found out my son who's just a couple of years older than you has it too, it's an hereditary cancer - he's just been diagnosed much earlier than I was due to me pushing for a scan.
Please don't feel alone - and try and look after yourself, I know it's hard to get the motivation to cook for yourself - believe me, some nights I just want to hit the bottle big time. Tonight's one of those nights. And I've got secondaries in my liver! They must be screaming in protest at the moment.
Any time you feel low, just post a blog and I'll reply. My son is called richard and he has massive op scheduled for 29th June.
Hi Will, missed this last update. I am so sorry you have been on your own! Are you in your Uni accommodation, presume your house mates have gone home already - is your girlfriend still around? Dare I ask if you are asking them for help, or to copok when you feel lousy? Might it be a charater trait that you do not want to ask for help? To the outside world many people recovering from BMT look reasonably pretty well and it is difficult for others to understand that actually a BMT is not an instant fix, the recipient tires easily and initially will have a fair few 'bad' days. Maybe you need to remind folk??? Anyway I hope you feel a little better by now, guess you are in hospital? If you are on your own when you go home some supportive care can be arranged if required, it is worth asking.
You are so right you have done really well and way ahead of where many people who have had BMT are at this stage. You must take it easy and just one step at a time. I am sure everyone is saying that, but equally they cannot all be wrong can they??!!
There are lots of dietary supplements out there as well if you do not feel up to cooking or eating, perhaps you can ask about them? John used them alot as he also used to worry if he could not eat as he believed he should.
I hope you enjoy / enjoyed seeing your friends, and perhaps managed to get out in the sun and the big wide world!
Keep smiling Will, keep taking one step and one day at a time and you will soon be well on the road to recovery.
