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hyarrowen Sorry for the long silence. I've been really remiss in not keeping up with you all, but I've been a) busy and b) tired. It's been an interesting few months, but I got the "cancer-free... for now" from the surgeon last week, so the flood of appointments seems to be slowing down for the present.
In the end, I didn't have to have radiotherapy, which is nice, or chemo, which is even nicer. But I had two operations - a lumpectomy which didn't work and a mastectomy + lymph node-ectomy (?) which did - and with a couple of other procedures I'm suffering from a bad case of anaesthesia brain. It's wearing off, though.
I have to say cancer care is great. I've seen it described as the Lamborghini of medical care, and it's a complete contrast to the cranky old bus that is chronic illness. ("Just go for a nice walk in the sunshine and practice mindfulness, dear. You'll feel much better." "Oh, reely?") It's so nice not to be gaslighted and patronised.
So, as I say, I'm back. I have very little energy and very little brain, but hello again!
In the end, I didn't have to have radiotherapy, which is nice, or chemo, which is even nicer. But I had two operations - a lumpectomy which didn't work and a mastectomy + lymph node-ectomy (?) which did - and with a couple of other procedures I'm suffering from a bad case of anaesthesia brain. It's wearing off, though.
I have to say cancer care is great. I've seen it described as the Lamborghini of medical care, and it's a complete contrast to the cranky old bus that is chronic illness. ("Just go for a nice walk in the sunshine and practice mindfulness, dear. You'll feel much better." "Oh, reely?") It's so nice not to be gaslighted and patronised.
So, as I say, I'm back. I have very little energy and very little brain, but hello again!
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Date: 2025-08-13 01:29 am (UTC)Hello! I am glad you are through the worst of the flood of appointments. May there be even fewer of them from now on.
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Date: 2025-08-13 04:47 am (UTC)The appointments have been so tiring, especially the waiting-room ordeals. I learned to schedule the appointments early and take the current book club book along with me. For the initial investigation last year I took a 600 page book and read 400 pages of it. So proud of myself.
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Date: 2025-08-13 04:50 am (UTC)How was it?
*hugs* for the waiting rooms in particular.
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Date: 2025-08-13 05:03 am (UTC)As for the book, it was Life After Life, by Kate Atkinson. A women living a series of time loops, mostly through the London Blitz, with a long excursion into Nazi Germany. Very good, but next time I'll check the subject matter before chucking the book club book into my appointment bag!
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Date: 2025-08-13 01:48 am (UTC)no subject
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Date: 2025-08-13 03:07 am (UTC)It's so nice not to be gaslighted and patronised.
I've always thought I'd feel that way if I ever got a respectable serious illness, so I feel vindicated.
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Date: 2025-08-13 04:51 am (UTC)And I have to admit that I'm not wearing my falsie very much at all. One in seven women will get this disease, it's time it was normalised, and since I feel ghastly all the time anyway (chronic fatigue syndrome, yay) I may as well take advantage of a socially-acceptable illness.
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Date: 2025-08-19 05:12 pm (UTC)and it's a complete contrast to the cranky old bus that is chronic illness. ("Just go for a nice walk in the sunshine and practice mindfulness, dear. You'll feel much better." "Oh, reely?") It's so nice not to be gaslighted and patronised.
Oh, tell me about it. (I mean, thankfully, not the cancer care, but I remember when I had the Cyst of Doom in my mouth and just the relief of a solid thing people recognised and being treated really well. Although, tbf, that hospital is great on the ME as they have the national centre for the UK in it, so I have been reduced to tears on multiple appointments for multiple non-ME things just because random other medical specialists took it seriously and I didn't have to explain it all over again. But there are always all the other people and places...)
So, as I say, I'm back. I have very little energy and very little brain, but hello again!
*hugs* I wish you all the best for recovering to the usual status of hopefully a bit more energy and a bit more brain than that.
And I do even bring some good news on that front, if you haven't seen it. There's been a UK-based DecodeME research going on (15k ME sufferers took part, including yours truly. I spat at a thing for science!) and their initial pre-print results came through last week and they have clear indication that ME sufferers have significant differences in their DNA to non-ME sufferers but the brief report as yet is here.
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Date: 2025-08-23 01:58 am (UTC)I had forgotten about the enhanced awfulness of anaesthesia on ME/CFS brains, but it’s totally a thing and explains a lot of my woolly-mindedness in the last few months, if “had a boob removed” isn’t enough. Still, it’s nice to have an extra excuse for my partial prosopagnosia.
You are so lucky to have a national centre for ME as your go-to. It’s so exhausting having to explain it over and over again. I had a referral to pain specialist who turned out to be a physio… He said that when he was in pain, he went for a run and always felt much better afterwards. I said, in tones which made it clear it was lucky we were on a video call, that I was very happy for him. I guess we’ve all got stories like that. But I hope your mouth is better now.
We plod on. Who knows what excitements next week will bring?
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Date: 2025-08-23 12:47 pm (UTC)Aw, glad to be able to point you there! <3 Things have definitely been coming a long way with it, over here at least, anyway. Ironically, the whole Covid & Long Covid thing seems to have helped give research a kick, especially following on from it being identified as an inflammatory disease. I haven't had the same kind of reaction you're getting for at least 10 years, although I got it all the time as a teenager in the 90s. *hugs* So hopefully, things will shift down under too as more evidence & info builds up!
We still have graded exercise being technically the recommended NHS treatment, so we've a way to go yet, too & I never quite know when I'll get someone who really doesn't get it. I still brace myself for the dreaded explanation and God-knows-what reaction, but these days only the vile benefits people are horrible about it irl, but being vile to everyone to save money is their job description. Even my optician knew about the effects of ME on the eyes last time I went! I felt like I'd shifted to an alternate dimension. So, I very much hope yours shifts a bit too - it really is about time!!
(I hope now I've said this, I don't jinx anything next time I have to go somewhere...)
He said that when he was in pain, he went for a run and always felt much better afterwards. I said, in tones which made it clear it was lucky we were on a video call, that I was very happy for him.
!!! *hugs again*
Anyway, take good care of yourself! I hope you recover well, with less crashes. <3<3<3
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Date: 2025-08-25 12:02 am (UTC)COVID and Long COVID has been a wake-up call here too, bc doctors are getting it too, so it must be real! But there was an Insight programme a few weeks ago (um, the equivalent of Panorama, if that's still going?) in which they laser-focussed on the one woman who said she'd recovered from MECFS and rheumatoid arthritis. (I wouldn't be surprised if that was a case of the Salt Paths.) Our MECFS society took Insight to the ombudsman over that one. The fight never ends.
As for crashes - they come with the territory; I keep doing more than I should a) bc of the appointments and Life in General b) bc I want to. cf my sub-Antarctic trip over Christmas. But sometimes you gotta, you know? I do envy you your self-discipline in not overdoing it. That's a huge achievement.
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Date: 2025-08-25 08:36 am (UTC)Life makes things hard to manage all the time, if not impossible! Obviously I try to be careful, but it's not so much discipline as I just can't right now - I think the Endemetriosis, now merging into the Menopause has just screwed things up because I can't build up energy with the ME like I ought to be able to, even though I do the right things - I just go up and down and if it's being like that just going over the road to Tescos takes way more out of me than it used to. But it is better now than with the Menopause than the full on (asymptomatic, ha) Endemetriosis because I'm not being wiped out by pain for 2-3 weeks of every month as well and it will be over at some point!!
Anyway, let's hope some of the medics one day work out a way that neither of us need to make all these endless calculations of energy before we do anything. And, despite life, do go gentle on yourself where you can. *hugs*
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Date: 2025-08-27 01:36 am (UTC)these endless calculations of energy before we do anything
This sums it up. And people don't see the payback, and... But you know the score.
*hugs back*
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Date: 2025-11-22 05:04 pm (UTC)no subject
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