As ever, thanks for the messages. I read each and every one. I don’t always respond to them directly but I appreciate any advice and am strengthened by the well wishes.
I wasn’t going to post today, because it’s been a bad day for me mentally and pain wise and I didn’t want to seem less stoic than I’m trying to be. Then I thought I should, because it’s real, and holy shit this is tough at times, it’s truly a staring into the abyss level of mental torture.
I was quite down this morning, bit of a dark night of the soul last night. Really deep mid back pain for most of the day has got me down quite a bit, a bit of relief here and there though. Hot water bottle seems better than painkillers to be honest. Worried it’s getting worse, trying to keep the dark thoughts out. Trying to have faith in God, feel like I have mixed success with that, in one way it’s comforting as it feels like I don’t need to be in control, I can just hand over the reins to God and he will make sure I’m ok, yet at the same time I’m struggling with faith quite a bit doing the old ‘why me’ quite a bit. Need to stop that. I mean, why anyone?!
Went a 15 minute walk and felt like a total crock, had to sit down when I got back. Really not used to this frailty.
I had a bit of a scare last night as I became shivery when I went to bed, so checked my temperate and saw I had developed a low grade fever 38°c which totally freaked me out, but responded to paracetamol. Everything is freaking me out, every new pain. Nights are bad anyway as the night sweats are unreal, I’ve never had anything like it. Poor DH is lying next to a slippery eel, and one who is basically clinging on to him for dear life all night. No more fever as yet today, thankfully, a bit trepidatious of what tonight will bring. I get scared at night and in the morning. During the day I manage a bit better.
Not mentioned this before, but I feel like I look like total shit. I’ve felt for ages that my skin has been sallow compared to how it used to be, my hair a bit lifeless. Thought it was my age. Losing weight in the last 2 weeks has done nothing for my face though, look really gaunt and drawn, although vanity is the least of my worries. DH says he still fancies me, which is lovely although I don’t really know if anyone in my situation is particularly alluring.
DS had a Politics AS level exam today, he thought he did well, and I’m so pleased for him. Another positive is that I finally got the call this morning for the first scan - MRI. Monday 3pm. Thank goodness. Hoping for a call for the PET scan soon too. Someone asked about private insurance and do actually have private medical insurance, but mixing private and NHS at this stage apparently is not advantageous for cancer care in NI, the private and NHS don’t really communicate with each other and there is no private cancer care at all in NI, which was news to me and does make me wonder what we’ve been paying a fortune to Bupa for! What we have done is make a private appointment with a specialist liver surgeon, apparently the ‘best’ there is here (no offence to the others). That’s on the 12th, was the quickest appointment we could get even privately. Sometimes I envy people like the royals, not for the other parts of their job, but I bet they wouldn’t have to wait for scans and oncologists! Feels somehow like my life doesn’t matter as much.
Anyway, sitting with my mum here. Poor DH is working in his study, he’s working the oddest hours ever at the moment, thankfully he can wfh for the most part and for that I’m so grateful. I think he needs the distraction of work, a bit of normality in an otherwise completely awful situation.