[CANCER] Trying to find ‘the new normal’

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 …

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 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

Photo by howling red on Unsplash


[CANCER] (Not) Managing Fatigue

‘ You set such high standards for yourself’ … a comment I get a lot … and it’s very true. I expect that I can do my job well (contribution to society, be a good team player, produce publications, give good feedback, etc), be a good friend, exercise, eat ‘well’, do what I said I would, etc …

I don’t think it’s sunk in that cancer is for life (and TBH even if I hadn’t got incurable cancer, it would still cast a huge shadow and have a physical impact on my life)… and part of me is still just waiting for things to ‘get back to normal’ … but got that ‘new normal’ to deal with now… and there is just not as much space in it. Pre-diagnosis I was working 50+ hour weeks, plus trying to fit the rest of life in … I was cutting back on some of the extra activities because I was so tired (that would have been the tumour growing and sucking all my energy), but then cancer bounces in … it’s got no respect for whatever is going on in your life (including pregnancy, no – not me) and takes over.

At times, cancer feels like a full time job … as you may see from my #waitingroomfeet … not forgetting a tonne of cancermin (cancer admin … related to hospitals, work, etc) and trying to keep people in the loop… and when some days I’m not waking up til gone 9am, then desperate for bed again early evening … it’s hard to fit life in. Cancer patients are told that exercise will help with cancer related fatigue, so I’m trying to do that … last Thursday however, I went to a dance class at the gym (normally a class I think is easy), and for the next 48 hours or so felt like I was swimming through treacle .. brain and body both shutting down on me. This week tried 17 mins in the gym on Tuesday and 32 mins today – though then heading out to try Wizards Unite in the evening sunshine left me sat on the sofa too tired to move … in bed now though!

Bearing in mind that I’d only had docetaxol 16 days before, I probably shouldn’t have been too surprised, but … still getting frustrated…. but considering I re-started exemestane last week (daily, for life), had my Herceptin & Perjeta infusion on Monday (yes, this is 3 weekly forever, or til it stops working), and restarted with the Zoladex injection on Tuesday (will keep having those monthly til oophrectomy done) … and had a very frustrating wait Monday to see oncologist but then no one knew what the appointment was for! Made it into work Wednesday for an event booked pre secondary diagnosis, and again Thursday morning for a meeting, then I started running out of fuel… challenging when have a writing deadline trying to work towards!

The American Cancer Society has some good information, the MS Trust tries to describe fatigue to those who equate it with tiredness, and I was scrolling through Twitter earlier and came across this:

Suspect I’ll find some links to add to the comments later… and think of all the other things I was going to write … about feeling like you’re missing out, and loneliness … but I’ve taken my sleeping tablet (need to wean self off those too) so good night!