Terminology Overload

So the weeks after my birthday have been filled with countless coffees and visits from lots of beautiful people. During this time I received a letter with my diagnosis on (typical NHS, why use password protected email when we need to keep the queen afloat with second class stamps!!!). Anyway that was an emotional moment. It included a number of words that I’d seen, written and spoken for years, just never thought they’d be in reference to me.

The words.

Treatment, what a word, one that garners hope and promise right? No. Treatment in an incurable disease means to stop further spread and keep it under control (much like Boris managing COVID but with less bad hair days!).

Palliative care, one that means off to the hospice you go James and don’t spare the horses!! No. One that means optimising quality of life and managing symptoms related to disease.

Terminal. Yeah there’s no spin on that, it’s pretty grim.

But all is not lost. You see I do have options. So I went to Sheffield to meet a fantastic surgeon called Mr Edwards, seemingly what he doesn’t know about Mesothelioma probably isn’t worth knowing. He talked us through surgery, big surgery, one he likened to being hit by a bus (he’s not wrong!) plus I’d dodged being hit by a bus once this month already, remember!! Anyway it entailed removing all of the pleural matter on the right side, think peeling wallpaper but with blood and stuff. Spending 1 week in ITU and 3 weeks in hospital in total. We come away heads reeling. So with no curative intent, it only means to improve quality of life (I mean I know I’m biased but I’m looking ok at the minute!), the jury (evidence based jury I might add) is out at the minute on wether it adds years to your life so we have done a McDonalds and parked it in bay 1.

I am not eligible for any trials at the minute and immunotherapy is not available on the NHS until NICE decorate the place in red tape (they love owt like that!) and give it the nod. So that leaves us with…..

Chemo! (That makes me sound exited about it, I’m as exited about it as Mark would be if I got him a Hoover for Xmas!). Anyway let’s not downplay chemotherapy; cytotoxic drugs used to kill lots of things in their path, cancer included, and maybe a few other bits and bobs along the way. But evidence based stuff that has worked for a long while. So, after a weekend in York with Mark I will be starting chemo on Monday at James Cook University Hospital, pffff talk about a bus mans holiday!! 😂