Saturday, February 9, 2013
Intragram: Month 6
Treatment number 6 is almost behind me. We decided on Tuesday to slow the rate of infusion and it helped, fair improvements on the last two times but next month will try for the slowest rate and hope for better. Just lately I've begun thinking in the long term, what will happen when the twelve month trial is up. Well I know part two of the experiment - twelve months off the program but what is to be expected with that? Back to how I was (I suspect)? - dependent on antibiotics and long unmanageable stretches in bed when the antibiotics stop working? Surely that's the only expectation? But I respect that this is a trial and one of the ways of judging it's efficacy is not just how I am on it but also how I am off it. All the same it does seem a bit cruel. So if I'm correct in my predictions and head back to square one in the twelve months off it then what? Surely then I'll have life long access to the program. I suspect that one of the reasons I'm coping so well with the nasty side effects is my hopefulness about the whole process and just plain gratitude for the opportunity in general, the excitement of meeting the trial protocol. What if I am to spend my life on it though? Every month trotting off to the hospital knowing I'll be out of action for the next week dealing with the side effects -which to be honest at this stage are gruelling - for the rest of my life. The whole "this is as good as it gets" scenario. Thats why it's important within the next months to tame this whole Intragram thing, to get on top of it so that as an option it is all plus plus plus, no negatives.
Subscribe to:
Post Comments (Atom)
2 comments:
I really hope it works out well Jo. Sorry if that sounds glib or trite or whatever... I cannot imagine what it's like and can only hope that there is a good resolution for you. A friend of mine lives with chronic pain and every time I see her I have to remind myself that as we're talking and laughing about something, she's in pain - it blows my mind. Anyway, as I said, I know nothing and wouldn't presume to pretend otherwise, but if my observations of my friend have taught me anything it's hang on to all your distractions. I think they are the minutiae that can keep one sane. Much love x
As always I love your insight Kylie. And thank you too for your compassion! Much appreciated.x.
Post a Comment