Time for a change

I finally did it and spoke to one of the nurses at Phyllis Tuckwell.

After a day of the worst vivid dreams so far and a bit of dizziness when trying to sleep (think room spinning when drunk) coupled with some nausea and some creeping breakthrough pain for the first time in a few months I finally had to admit something has to change.

Luckily she phoned me first and forced my hand but agreed that it’s likely my kidney isn’t excreting the morphine (whatever that means) properly.

I’m going to be swapped to something that’s twice as potent as morphine, but I’ll have the same equivalent dose. It’s also supposed to have less chemicals and be tolerated by the body better than morphine. I think she said it was Oxycodone.

I also questioned why I’m starting to get some breakthrough pain now, even though it’s minor. I was told it’s likely just “things progressing”. Not sure what that means but it’s worrying.

I’ve also written to one of the nurses who works with Professor Pandha to query why removing my kidney was dismissed right at the start. I never really understood but just went with what I was told.

I’ve heard of a couple of people with the same presentation as me, on the same immunotherapy now but they had kidneys removed right at the start and are having great results. Obviously I don’t know my results yet but it sparked a curiosity in me why it wasn’t an option. I’m someone who needs details and facts.