When it looked like it was ‘back to normal’ last year, even though I was already being tested for the forthcoming secondary diagnosis, of course I very much hoped that it wouldn’t be that … but it was, and it’s been a hard year trying to come to terms with what at times truly feels like a ‘life-limiting disease’ in the widest sense …
I got my stable scan about a month ago, and next Thursday I have my bilateral oopherectomy (robot assisted) at Stepping Hill…. with the joy of being at the hospital at 6.30am, having made sure have not eaten anything post midnight (not quite sure how I take my antibiotic!), with no idea if I’m first on the list, or 3-4pm in the afternoon 🙁 To be honest, once you’ve experienced a lot of ‘bad news’, you start to assume that norovirus is going to hit the hospital, or that the surgeon will be struck with the flu, or something else get in the way .. partly triggered by a throwaway line at the bottom of the hospital letter that says to ring before heading for the hospital to check that the surgery can still go ahead! Another weird form of #scanxiety I guess…
At least it’s not my first general anaesthetic this time and I won’t try and take 3 books to read! Plenty of books on the Kindle should I want them …. and it should reduce the risk of all that oestrogen flying round my body!
Managing That New Normal
This, from Gammy Tit, really resonated with me yesterday:
Frankly I’m sick of feeling unfit and old! Of having to think about EVERYTHING I commit to and if I can do it? Will it hurt me? Will I need to sleep in the day to be able to make that commitment? Sooo many things I want to do this Christmas, but I’m committing to only a quarter of what I’d like to do. Frustrating but current reality ?
And she (hopefully) is just dealing with primary treatment. I’m continuing Herceptin/Perjeta every 3 weeks, and denosomab injections alternate treatments to deal with potential osteoporosis)… I had treatment this Monday – so maybe it’s no surprise that this week has felt extremely hard (especially with upcoming operation stress!) … it’s just felt like this (I have slept A LOT):
I’m trying to deal with nausea, fatigue, poor skin (antibiotics/creams), dry skin, lymphedema, brain fog, aches and pains and just sheer exhaustion…. and getting fed up with myself that I seem to be giving up all kinds of stuff and still overtired … I am kind of back to working full time 4 days a week though (from home), 2 swims and a yoga class (though that’s all going on hold) most weeks, not yet fitting in church or much of a social life (and yes, it can get lonely at home).
Stop Stop Stop
Much as I am not looking forward to my operation, I am looking forward to being able to stop and drop responsibility for many things for a couple of months. The leaflet said 6-8 weeks recovery, although a lot of people seem to be doing well by about 4 weeks – which would be great – because then I can have a bit of headspace, and do the life admin that’s still piling up! I’ll head back to work on 10th Feb, which gives me about 3 weeks before New Zealand – which I really hope is going to help mentally as well as physically – even if I’ve got writing deadlines and speaking engagements whilst out there … finding a way back to what’s possible – and hopefully not becoming too frustrated that very unlikely to get back to where I ever was … and no, that’s not being negative, that’s being realistic – which takes some of the pressure off (read about the problem with positivity culture)!
There’s probably more I might have written, but I want to get a quick swim in before the pool closes – as I’m still in my PJs – and I’ve got work to do tomorrow … I’ve had 3 days of doing not a lot – and probably need more – even though most of the time I’m trying to be #busylivingwithmets