Unwritten me, written
Updated: Aug 19, 2020
Why unwritten me? I’ve been banging on about blogging for forever it seems, so I could say it’s because it’s taken me this long to write it but, while that’s a neat narrative device, it’s not quite my true.
When I was called back for a biopsy after my mammogram in 2017 I immediately assumed that I had breast cancer. While it turned out that I did have The Cancer (grade 3 pleomorphic invasive lobular, ER/PR+, HER2-), I had physically, mentally and emotionally unravelled in the 3 weeks before I got the definitive diagnosis.
It soon became clear that I'd drive myself to distraction if I kept assuming the ‘bad’ when the actuality of the reality was still unknown and the ‘good’ was still in play.
Inspired by the Natasha Bedingfield song, I gave my head a wobble and decided that until something had actually happened (pathology, scan results, side effects … all the cancer whatevers) it wasn’t yet part of my story – it was unwritten. Now I mantra ‘unwritten’ like a mo-fo when I start to become mentally undone. It works. Mostly.
This blog is also unwritten because I write about cancer things that medical specialists didn’t talk to me about. Cancer-related fatigue, chemo brain-fog, medical menopause, to name a few, are all part of the oft-cliched ‘new normal’ for a cancer patient.
I’m now 2 years out from the end of primary treatment (FEC-D chemotherapy, skin-sparing mastectomy and radiotherapy) and have had the first phase of my DIEP flap reconstruction, yet I’m still struggling with the fall-out from treatment. None of which I was prepared for, but all of which impacts my life every day.
It’s unwritten because I write about things many non-cancer bods (aka cancer muggles) don’t know about, don’t want to know about and/or don’t expect ‘good’ cancer patients to talk about.
As a ‘good’ cancer patient you’re expected to be positive, inspiring, acquiescent and generally graciously grateful (and if you’ve got a good shaped head to rock chemo alopecia then you’re acing it!).
Post-treatment a ‘good’ cancer patient shouldn’t talk about the not-so-good late effects because that’s all behind you now and you’re alive, aren’t you?!
Bollox to that I reckon! Cos cancer is pretty shit and the shit doesn’t stop when invasive treatment stops. And sometimes things – treatment, medical professionals, friends, family – could do better. And us cancer bods need to be able to say that, otherwise how will things change? I’m not into blame-shaming but I am into curious ‘what if-ness’ if it gets a re-think on how we are expected to ‘do’ cancer. I realise there’s a danger I’ll be seen as a whinging Pom but coming from Liverpool (UK) it’s in my Scouse DNA to call things out.
I moved to Australia from the UK to study at the University of Sydney in 2013. International students get some cultural coaching for Aussie life, including: if you’re asked “how are ya?” it’s more of a rhetorical nicety. Even if things are going to rat’s, the expected response is: “good, thanks!”.
Since my diagnosis there’s been an expectation for me to radiate this sunny positivity as anything else is seen as a Negative Mental Attitude that unsettles many muggles (and which some believe can have a detrimental impact on prognosis. Spoiler: it doesn’t. And if you’re of a mind that it does, then this probably isn’t the blog for you).
That’s not to say I only write about the negative, because another unwritten is that there are some life-affirming positives that have come out of my Cancer Shitshow. Not that I would ever have wished for it but, you know, it is what it is and some of that ‘is’ is good.
My unwritten written isn’t good or bad; positive or negative; right or wrong. It’s all these things sometimes; some of these things all-times; and sometimes none of these things at all. And, yeah, that makes it messy. Cancer is messy. It’s multi-faceted. It’s ambiguous. It’s complicated. It’s nuanced. And it has a dark humour.
And as more and more of us are fortunate to live life after a cancer diagnosis (and not just "survive"), it’s increasingly important that our lived and felt experiences are talked about both within the cancer community and outside of it too.
So this is unwritten me written: foobs, flaps (surgical, vaginal and mental) and the nuanced bits in between. Good and bad; sometimes a bit ranty; often a tad sweary.
*fat boobs – a term used in the breast cancer community to refer to breasts reconstructed from fat tissue from the abdomen (the DIEP flap reconstruction).