I listened quietly to the gentle music drifting from the two musicians on our little stage thinking, this is my Sunday morning playlist. The kind of soft, lilting melodies that wrap you in warm sunshine, sweet smelling hayfields and make you feel there is nothing urgent to be done, ever.
I wandered over to the table selling CDs of the bands playing at our little festival of folk (in my village it’s less Glastonbury, more Pleasestayawakeonbury) but there wasn’t anything by Jan Vaisey and Ian Harvey there, so – and this is SO not me – I rushed over to them as I thought they were leaving, and asked rather stupidly were they on Spotify? Gah! Well, no, they weren’t and they’d never even made a CD, they just gigged where they could and enjoyed making music.
Anyway, cut a long story short, they weren’t leaving and Jan and I talked a lot more during the evening, because it transpires she not only has a beautiful voice but she’s also just six months out from aggressive treatment for breast cancer, and today was the first time she’d trusted herself to sing again in public without the words pinned to her nose in case she forgot them.
Chemobrain is a bitch.
Which brings me to something else that’s a bitch – organisations trying to help and support women facing traumatic decisions about surgery for breast cancer, when they fail to think things through and answer genuine questions in a balanced and meaningful way.
Yes Breast Cancer Care, sorry, but I’m talking about you.
I’m going to pull you up on an answer you gave in issue 24 of Vita magazine (I’d link to it but at the time of writing it’s not online) because it’s important to every woman facing or living with mastectomy that bias is addressed. I know you probably didn’t mean it to come across the way that it does, but I’m afraid that’s no excuse.
I think you fail to recognise the distress that facing annual screening of a remaining breast causes, and the very real fear of recurrence that most of us live with once we’ve had cancer once. Or twice.
Ok four times in my case but I’m still here so keep reading…
My biggest concern is when you write:
“Some people think having both breasts removed will give them piece of mind but there’s a risk of complications… as well as the potential emotional, physical and sexual impact”
“Surgeons are usually reluctant to remove a healthy breast for these reasons”…
It feels like you’ve addressed the writer’s fears and answered her question by implying that there is no peace of mind in prophylaxis and surgeons won’t do it because it’s emotionally damaging. Neither of which is true, and both of which are likely only going to add to the poor girl’s stress and confusion, never mind those reading that are also facing surgery, or what it says about those of us that chose to have both breasts removed.
I say chose. Clearly none of us chose to have cancer. We’re operating within a limited range of ‘how do I want to stay alive?’ options here.
These are very personal decisions, and every patient has the right to explore every option, upsides and downsides, with her oncology team and anyone else she turns to for support. Every woman’s situation is different, the choices we make we live with the rest of our lives; we shouldn’t have to justify them or have them feel dismissed.
The truth is, every surgery carries risk of complication, and every treatment for breast cancer has the potential to impact upon a woman’s emotional physical and sexual health in ways none of us are prepared for. But with love, support and understanding we recover. A woman who opts for prophylaxis is just as emotionally, physically and sexually resilient as one who doesn’t. It’s fear of the unknown and uninformed choices that cause the most damage.
Who we are runs so, so much deeper than our body parts.
You know, I read recently in a support group that someone was “lucky” with the treatment they’d received, supported by HCPs, given options, second opinions, supported in the choices they made, able to talk through fears and thoughts at any time with their team.
That shouldn’t be luck, that should be standard for every woman.
breast cancer care, we need you to be part of the solution, not the problem. And if you want to gain a deeper understanding of the real world issues involved, reach out. For starters, there’s a powerful group of women at Flat Friends that have trodden (or are treading) this path who’d be happy to help.
And thank you for listening.
Talking of listening, if you need to relax after all that, and with apologies for the quality of the recording I found on YouTube, here’s Jan and Ian “You’ll never leave Harlen alive” 2009
I’m proud to be their new Number One Fan 🙂