This post is going to be public but I am not publicising it on facebook, as time goes on there may be more of these posts which only my more dedicated readers will see.
I’m waiting for the results of my scan to make sure the chemo is working. Its time’s like this my WSWI voice become the loudest. OD had a bit of a breakdown about it too last week. She worries that I will not be around for her wedding in a year’s time or that I will be too sick from cancer or chemo to take an active part. I can not make any absolute guarantees but I think I will be ok for that wedding.
Likewise our upcoming trip to Dreamworld – I know the oncologist just want to cross all the ‘Ts’ and dot all the ‘Is’ to make sure that nothing will happen to me while I’m away, but I am so aware that on Wednesday they could turn around, after getting the results of the scan, and advise me not to go. We haven’t told YD that might be a possiblity. We are working on the assumption that it wont happen. If it does I will have to put more work into a ‘social story’ about how MD and OH and her are going without me. Likewise if I do go I am aware that my feet will not keep up with the pace the rest (mainly YD) will want to set. It was very sobering to have to look at Dreamworld’s site to investigate whether or not they had wheelchairs available if I should need one.
I also worry about how tired I was when she went home, after only a day and a half at our place. Even when we were just sitting planning the trip and preparing YD’s ‘itinerary’ the constant need to be ‘switched on’ was tiring. Am I going to be able to handle a week of that – even with OH and MD being there?
Likewise the conversation I had with the Cancer Society Liaison nurse last week, I am entitled to a mobility card so that I can use mobility parking spaces, which admittedly would be handy on those days when my fatigue or sore feet keep me more incapacitated, but I don’t know, it just feels like giving in to defeat to me.
I hate that I even have to think about any of this. Unfortunately I am too much of a realist, (not a pessimist) to not acknowledge that this is how my life is probably going to be from now on. In and out of treatment with all of the quirky sideeffects, fatigue, scans etc is how I’m going to live my life. I just need to figure out how to fit the rest of my life around it.