I want more

Nearly October. Autumn is here.

I was looking back through my recent blog posts and thinking that it actually looks like I’ve been having a good time lately. And yes, I suppose I have. But I recognise that they are good times. There’s plenty of other times when I’m worrying or being annoyed about the admin of sorting out medical appointments – yes, still. But on the whole, mostly, this summer has been good for me. And I’m glad.

And now it’s autumn. The evenings are noticeably shorter and cooler now, the curtains drawn before 8pm. The leaves are turning. And soon it will be October.

Ah, October. Breast cancer awareness month. You’d think I’d like that wouldn’t you? What with wanting us to eradicate breast cancer forever. Well, yes awareness is good. But awareness of what? That there are so many pink charities and pink events out there that if you contribute to one of them then you’re helping us, people like me. That we’re nearly there – winning the war on breast cancer. Well, actually, we’re not.

I’ve written before about breast cancer charities, about how up to 40% of the money raised, by well-intentioned people, may not actually go anywhere near research for prevention or cure or treatment. It will go to the running costs of the charity. To help them promote their work, to encourage more people to raise money for them, for more pink events. And there are some of us who don’t think that’s good enough. We want more. I want more.

That’s why I wrote my book. That’s why I write a blog. That’s why I continue to talk about breast cancer, about awareness.

I was approached by a contact, a friend of a friend, to be a guest at a ‘Wear it Pink’ event. You know, one of those jolly events where everyone has fun and at the same time raises money for a breast cancer charity.

My friend assumes that I will say no, because it is pink. But I decide it might be a good opportunity for some education.

So I send over a couple of blog posts for my new contact to read, and some links to some articles about pink and ask her to read them and come back to me. She does, and we arrange to meet.

And then, at my favourite café, we sit down and I talk about breast cancer. I tell her briefly about my own treatment, the years I’ve been a patient, the amount of surgery. That I have more surgery in November. She is obviously shocked. She didn’t realise that it could take such a long time.

And then I tell her about secondary breast cancer. That no amount of treatment will guarantee that I will not have a recurrence. I am not telling her this to shock her, it’s just a fact I’ve learned to live with. Mostly.

Her eyes fill with tears. And she says, ‘I thought you just had a mastectomy and that was it.’

Well, I’m sorry to break the news but that’s actually not it. And I’m talking to an intelligent woman, similar age to me, and she doesn’t know this fact.

She doesn’t know that breast cancer can spread to your bones, your liver, your brain, your lungs, your skin, can form secondary tumours away from the breast, even after mastectomy. Even years later.

She doesn’t know that mammograms are only a screening tool, they don’t prevent cancer.

She doesn’t know we don’t know how to prevent breast cancer, that we can only treat it not cure it.

She doesn’t know that young women get breast cancer too, women younger than me die of breast cancer.

She says to me, ‘I thought you’d be delighted when I told you about the pink event. I see now how it could be offensive. I’m sorry.’

‘Don’t be,’ I say, ‘you didn’t know. How could you? Everything you see about breast cancer looks pink and positive. I’m trying to tell you it’s not like that, the reality of breast cancer.’

Extract from Being Sarah:

Women band together for breast cancer. Which is good. A ‘faint feeling of belonging’ and a ‘dilute sisterhood’ is how Barbara Ehrenreich describes it. But, in my experience, they are not angry. Too obedient. Feminism, the ‘F’ word, it seems that it is a dirty word now. That anger and feminine don’t go together. Being a feminist is seen as ‘bad’. Angry is bad. That would make me very very bad then.

Barbara Ehrenreich says that the lack of anger she found in the American breast cancer culture made her feel isolated, no-one was questioning why so many women get this disease. The same happens here in the UK.We have a massive pink culture around breast cancer. And we are bombarded with images of women smiling their way through what is a devastating illness. Who is asking the questions? Surely there’s a big enough movement, the pink movement, that they could be really putting pressure on government, to be asking the questions? But they are not.

So this is why I am enraged about pink. That’s how they control us is it? Quiet and smiling. And I wonder whether this is a failure of feminism? Why not just chain me back up to the kitchen sink? Then I won’t be able to get near the places I can have my say: speak on TV, or write a book.

Gayle Sulik, author of Pink Ribbon Blues, wrote recently:

“Cancer is not a ribbon, a screening test, or a leisure activity. It is not a sassy t-shirt, a proclamation of survivorship, or a gift worth giving. It is a disease. For 65 percent of those who are diagnosed, it will be the eventual cause of death. When we ignore reality in exchange for feel-good fund-raising activities, we alienate and forsake those for whom cancer is a major cause of suffering.”

Yes, the pink movement has alienated me. So, this October, breast cancer awareness month, I will be posting a piece on my blog every day. Some of the posts are written by me, some are by guests, and some are by my fellow bloggers. I’ll be raising awareness and showing some truths about breast cancer culture. It’s time to change the conversation, to challenge the status quo.

And the first guest piece is written by my partner Ronnie, whose last piece about being my carer was my top viewed post since starting this blog. For the start of October he’s actually interviewed a very special guest from within The White House!

So, this October, please come by and join the conversation.