When it looked like it was ‘back to normalâ last year, even though I was already being tested for the forthcoming secondary diagnosis, of course I very much hoped that it wouldnât be that … but it was, and itâs been a hard year trying to come to terms with what at times truly feels like a ‘life-limiting diseaseâ in the widest sense …
Operation Ovaries
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 Iâm first on the list, or 3-4pm in the afternoon ð? To be honest, once youâve experienced a lot of ‘bad newsâ, 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 itâs not my first general anaesthetic this time and I wonât 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 Iâm 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 Iâm committing to only a quarter of what Iâd like to do. Frustrating but current reality ?
And she (hopefully) is just dealing with primary treatment. Iâm continuing Herceptin/Perjeta every 3 weeks, and denosomab injections alternate treatments to deal with potential osteoporosis)… I had treatment this Monday - so maybe itâs no surprise that this week has felt extremely hard (especially with upcoming operation stress!) … itâs just felt like this (I have slept A LOT):
Iâm 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 thatâs 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 thatâs still piling up! Iâll 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 Iâve got writing deadlines and speaking engagements whilst out there … finding a way back to whatâs possible - and hopefully not becoming too frustrated that very unlikely to get back to where I ever was … and no, thatâs not being negative, thatâs being realistic - which takes some of the pressure off (read about the problem with positivity culture)!
Thereâs probably more I might have written, but I want to get a quick swim in before the pool closes - as Iâm still in my PJs - and Iâve got work to do tomorrow … Iâve had 3 days of doing not a lot - and probably need more - even though most of the time Iâm trying to be #busylivingwithmets
Photo by howling red on Unsplash