Well Cancer Sucks b***s

[MacRS4]

I'm sure this will probably/possibly get deleted, but for the moment I just want to shout at some clouds, and given I only physically know 2 of you I thought this is as good a place as any. The last 18 months has been utter hell, starting with stomach cramps and ending up with holes in my stomach, chemo - zero stars, would not recommend - and currently now radiochemo.

If anyone is vaguely interested there's some words here.

I'm utterly exhausted and yet can't sleep. What is that even about?

Still on the curative track, and it's looking good. Initial 6 months of chemo was cut short to 3 - which is, apparently, a good thing. Wasn't explained like that, it read like a 'omfg we need to get you to radio' but that may have been my brain.

Anyway, I'm exhausted. If anyone has any cool or funny dog videos my eyes & brain would be very appreciative.

 

[MacRS4]

Oh my - I've managed to be so positive through all of this yet the night I posted this I was having a moment and filling my face with vodka milkshakes*.

Thanks for your thoughts, and letting me shout into the ether, it's astonishingly helpful.

Today I got an MRI/CT report back with the words 'no distant metastasis' which essentially means it's still local and hasn't spread - puts me in the 80%+ 10yr survivability bracket rather than the 20%. Quite jolting to read this stuff, and I really shouldn't have read it while sat on the jubilee line.

Thanks for listening and stuff.

*White Russians.

 

[MacRS4]

They always try and fob you off. Never said it to my partner but GPs fobbed her mums back pain off as back pain. Then bang. Terminal is push doctors and don't be embarrassed about it.

I first went to the GP in June 2023. They said I probably had an enlarged prostate or prostatitis. August 2023 I went to the Royal London Hospital A&E as I was in so much pain. They said I had prostatitis - no scans other than a fondle of my bits. They filled me with anti-biotics and naproxen. I was on three separate courses of anti-biotics; 3 months, and then 2 lots of 1 month.

Between then and June 2024 I went to the GP several times, and had an MRI & CT scan. All of them saying very little. I got referred to urology who finally got back to me in mid-October this year.

In July my girlfriend found me passed out on the floor as I was in so much pain, and dragged me to Kings College Hospital - quite a trip from me really, and it would never have occurred to me to go that far. They admitted me immediately and everything has been on track since.

The gap in care between Barts (I.e., royal London etc.) is astonishing. I had no appreciation of how poor the care was being given until I experienced KCH. That week of being admitted I had MRI/CT scans etc. and had an initial diagnosis by the Friday, and some frustration from the A&E consultant (who kept checking in on me during the week) as to why Barts hadn't pursued obvious symptoms.

I had made several mistakes on this journey, mostly trusting the 'experts' and not being my usual highly inquisitive and pushy self. My excuse - and it's a reasonable one - was that I was in often quite considerable pain and it impacts on your ability to think.

I'm not angry at Barts 'people'. I don't think a single one of them set out to be poor at their jobs - but was is blindingly obvious to me is the massive differences in resources between hospitals. KCH is obviously well funded, Royal London isn't. Every time I got to KCH for anything I'm typically seen within 15-30 minutes of the appointment time, and they return calls and emails. Guys? Good luck with that. Last time I attended Guys to have a chemo bottle removed at 10:00am on a Monday, I didn't get any attention till 16:00, and that was only because I was in so much pain at the time somebody noticed. I know - I should have said something, but some of us struggle with such things.

The above isn't a rant by the way, just some observations on my experiences.