Well, that all went a bit Pete Tong, didn’t it?
For those who know the background, you can skip this bit. Basically, I have a gene mutation called BRCA2 which means that some of the little dudes that help cleanup damage to cells in breast and ovarian tissue are skipping out on their jobs, and boom - breast and ovarian cancer risks go way up for those unlucky enough to inherit the mangled copy of the gene. 80% lifetime risk of breast cancer, and 25% risk of ovarian cancer.
I had my boobs off in October 2019, to take away the source of the risk of breast cancer, and while the results of the surgery aesthetically wise were brilliant (they really did a fabulous job!) for whatever reasons, my body hit back with a huge bout of acute pain that after three months of agony was determined to be chronic pain. Basically - that pain still hasn’t gone away and in all probability never will. (And - it’s not actually helpful to tell something with a diagnosis like this that it Might Get Better Someday! Look On The Bright Side Of Life! Statistically, that’s very unlikely. I prefer to work in the real world, and if that real world has dealt me a shitty pack of cards, I have learnt to my massive detriment that pretending that the real world doesn’t exist leads to really bad outcomes.) shit, where was I? Ah yes. Boobs. Tick, done and dusted.
This year, I was feeling slightly more ready for more surgery again, this time to remove my ovaries. This was a significantly simpler operation, and usually done as keyhole daycase surgery. So I got all that in train (basically told my doctor to submit a referal for me to the gynae/oncology unit) and then I had a scare - basically, ovarian cancer symptoms are almost nil - right up until it kills you. That’s because the symptoms it causes that are ’visible’ are low key and also symptoms of approximately one million other illnesses. But I guess with the surgery now sort of coming into sight, my mind was so focussed on it that I was hyper aware.
I had a bunch of these symptoms - weight loss, constipation (from the girl who usually manages three good ones a day), back ache, and difficulty peeing - and spoke to my lovely lovely lovely new doctor. We agreed that as it was over a year anyway since I’d had a pelvic scan, it was probably a good idea for me to have one. Soon.
So, off I toddled to somewhere near Hayle, and then the next day, as luck would have it, I whizzed off to Truro to meet the gynae consultant. All went smoothly (he even gave me a smear as I was probably due one!) and he put me on the waiting list for surgery. In my head this was going to be about six months to a year down the line, given what we know of waiting lists. He seemed to think 8-12 weeks was realistic, but that sounded very optimistic to me.
Two days later, on Friday 1st April, I got a phone call - I had a date for the operation, and it was the 21st April! Craziness. I accepted, of course, but it really threw me into a tailspin. J and I had been vaguely discussing me moving into her boyfriends spare flat - it’s a lovely little self contained flat in his renovated barn that he lives in. For one reason and another it was going to make sense to move before the op, even though that would be a bit of a mad dash to get it all sorted.
We got it all done and mostly settled in by the operation date, and I was pretty relaxed going in to the operating theatre on the day. I had several conversations with the relevant people about my experiences before and how keen I was to avoid anything like that happening again. Lots and lots of reassurance that it would be most unlikely to be anything like as bad.
I bet you can see where this is going. Spoiler alert - you’re right. It went to shit.
I came round from the anaesthetic in complete agony. Again, I had no idea what was going on, just completely out of this world pain. It all took a while to calm down, and eventually I was moved to the high dependency ward. The consultant came down and told me that unfortunately (that word was used a lot over the course of the next few days) somehow an artery had been ‘nicked’ during the insertion of one of the ports. When they had come to take it out at the end, blood had splurged all over the place. Oops. Anyway, it was all fixed with a few stitches and it should all be super duper alright ever so soon. All to be expected don’t you know, pain. Because, chronic pain. Argh.
It was supposed to be an in and out surgery, day case. It wasn’t - I ended up staying in for five nights and then pretty much discharging myself because I was so fed up. They wanted to keep me in longer to keep tweaking my meds and more consults with the pain team. But I was just so fed up by then. The biggest and most important thing to do with pain meds is to take them consistently and at the right times. Something which being on a ward makes almost impossible. I knew being back in my cosy flat would be better for that.
I went home, and I talked to my doctor almost every day for weeks, and we fought the usual fight to work out exactly what combination of meds was the right one.
Aaaand…… here I am today and it’s just not alright. It’s not ok and I want to get off this bus. It’s taken this long to get the pain under control and I’m bloody exhausted. This merry go round of pain and fatigue and brain fog can just fuck off frankly. I lost all creative ability (smidges of that are just coming back but I haven’t painted for ages and I haven’t done any creative crochet.) and I have been sleeping for hours and hours. Yesterdays beach activity was about 20 mins, and I slept (passed out kind of slept) for four hours after that.
So yeah. I went back to square one and I don’t know what square I’m on now. I want one of those ladders you climb in Snakes and Ladders, and no snakes please.
I‘m sorry I’ve been so quiet and so not there for anyone or anything, but I hope you can understand.
Almost forgot - I’m also in menopause now which is fun. I’m on HRT but it takes a while to kick in, I go through phases - sometimes loads of night sweats and sometimes I just get stuck in that week before your period where all you want to do is eat chocolate. 😆 Funtimes people. Fun Times.
Big Big Big thanks to J for her unwavering support and help, and a new friend T for his care and attention. Couldn’t have got this far without them.
Have a dog video for happies.
Ovaries - you are officially over and out.