Would the real Reality please stand up?
It’s been a while now since my prognosis was updated from ‘treatable’ to ‘terminal’.
We’ve prepared as much of our lives as possible for the (medically) inevitable. Our parent’s and friends have been a great help in getting this rolling, flying in from Perth and Auckland. Physically we’ve had to sort through 3 years worth of stuff in storage. Electronically it’s been getting all finances and authorisations sorted and flowing into the one right place. That’s nearly done except for a couple of small things. But otherwise we’re on track.
I’m being visited every day by NSW Home Nursing so a nurse can drain my stomach port to bearable levels. They’ve also given me a wheelchair, which is very handy as I can’t walk without becoming breathless or exhausted after a few steps. My stoma/bowel is incredibly active and quite tender as a result so that’s been added to the pain management schedule. Yes, I have a ‘schedule’ for managing my pain. The first few weeks were trial and error but now we seem to be settling on a preferred treatment style that the palliative oncologist is happy with. In his mind, pain management is key… if I’m not comfortable then he’s failing, he says.
Anyway…. the drugs really alter my perception of reality. They also severely diminish my ability to actually use my body other than for standing up or laying down. I really hate it.
I feel so much less than human but there’s nothing I can do unless I want to leave this earth a bawling mass of pain. That doesn’t really sit well with me either so…. excuse me while I go back and put my zombie outfit on.