I just didn’t know…

Fiona Shaw

Fiona Shaw at the BMA Medical Book Awards in September 2011

 “I was 34; I knew people who’d had breast cancer – some who’d died. Some who’d lived. I read about it – hell, I’d even done a Run for Life. Turns out I didn’t have a clue. Working on ‘Being Sarah’ changed my life.”

says Fiona Shaw, editor and publisher of ‘Being Sarah’.

“But the messages surrounding breast cancer are so complex and contradictory I just don’t know what to do about it…”

Today’s post is by Fiona Shaw who runs her own publishing company – Wordscapes. Since working together on the book Fiona’s become our friend and she often turns up in my posts, you know doing stuff like going to Buckingham Palace and swanky book awards in London. She’s a super-smart fun person, her zest for life is infectious and I love the time we spend together. She can also spell better than anyone I know. And yup, she’s even done a Race for Life!

This is Fiona’s post:

“And so October heralds Breast Cancer Awareness Month (BCAM), and – this year – a Being Sarah blog every day. Each and every one of which, I hope, will inform, challenge or add something to breast cancer awareness – in its widest sense. Because I can honestly say that, before I started work on Being Sarah, I didn’t have a clue about breast cancer, and the issues, debates and controversies surrounding it. They are, I guess, out there. If you’re looking. But they’re just not questions and debates that are covered by the mainstream media. If I now know just a fraction of the things I didn’t know before, then it’s down to Being Sarah.

So, awareness of what? That breast cancer exists? What we can do to help early detection? How we can try and prevent it? Does BCAM help raise money? Provide information? Encourage screening? Or offer support? Probably, and I can see why it would want to do all of those things – but, instead, it seems to me it’s become a whole month of girly pinkness, and it’s just not telling me the whole story. Like a month-long pyjama party where we sit up in the dark, telling scary stories about mammograms and mastectomies; and products in the supermarket all suddenly have a saccharin pink tint – not quite rose-tinted, exactly, but definitely a myopic lens, its unwavering gaze trained on the contract, cure, cheer chronicle.

It raises money, sure. It raises awareness, yep. But we need to make sure it raises our general level of understanding, too.

I think I’d always thought that there were an awful lot of hereditary factors in cancer in general, and in breast cancer specifically. Don’t ask me why – I’m not sure who told me, or when, but that’s what I thought. And a lot of research now still seems to be directed at genetic factors. But between just five and ten percent of all breast cancer is genetic – there’s over 90% of it out there that’s unaccounted for. And, given that the lifetime risk for someone of my age getting breast cancer is one in nine, that’s a hell of a lot of breast cancer patients. So that’s the 5-10% that’s completely beyond my control. What else? How do we go about avoiding it – can we? What causes it, what are the triggers, and can we protect our children and future generations from it? There’s just so much I don’t know.

Shock tactic headlines from Middle England’s papers scream accusations and sneer judgements: eat healthily; exercise more; stop smoking; have children younger. All sound advice, I’m sure, but throwing it back at the patient can’t be any way of getting to the bottom of the cause. Or starting a movement towards prevention rather than cure. And – although I know a straw poll of ‘people I know who’ve had breast cancer’ can’t possibly be representative – Sarah, and my best friend’s mum, amongst others – people I know who’ve been through this, are actually some of the ‘healthiest’ people I know; they’re fit, active, non-smokers. Some have had children young, some not so. So that still doesn’t seem to give us anything to go on.

Just yesterday, in fact, I was forwarded an email with Sheryl Crow talking about her breast cancer. She said that women shouldn’t drink from plastic water bottles they’ve left out in the car – that the gradual heating of the water in the sunshine causes the toxin dioxin to leak into the water – a poison increasingly found in breast cancer tissue. This was apparently, in part, why fast food drinks containers were changed from polystyrene to paper. But it doesn’t help my confusion. Or fury.

Cancer in general – rather than specifically breast cancer – often comes across, when discussed in the media, or by ‘experts’ on the telly, as something we bring on ourselves – the product of unhealthy modern lives. Smoking; drinking; obesity; stress, oh, and being materialistic, selfish hedonists and having our children too late in life. Whereas I’d prefer to know why the fuck people can sell us drinks that, if you leave them sitting around for a while, produce a toxin that causes cancer. Do they? Can they?

And it’s not just water bottles, either. I didn’t know that there were things in cosmetics – preservatives called parabens – that might speed up the growth of tumours; or the sheer number of environmental carcinogens surrounding us – things we can’t see, can’t escape, but can, and DO, have a potentially fatal impact on us. Call me naive, but I failed – and still do – fail to see why things like that are still on sale to us, every day, everywhere. And I’m not talking about the nanny state stepping in to protect us from the worst excesses of ourselves. I’m talking about a world where millions and millions of potentially lethal chemicals and toxins are sold every day, and millions is being ploughed into ‘curing’ – rather than preventing – cancer, making someone else, somewhere else, billions. And no-one even questions that wonky logic.

But, if the attention’s being deflected from these wider issues and thrown back on to us, where does that leave the doctors and the researchers and charities in working out how to prevent cancer?

So what can we do? Well – there are a few charities out there that promote research into cancer prevention, rather than cure. But, by-and-large it seems that cancer is an industry, and the charities aren’t immune from it either. The Guardian noted that of Britain’s richest 100 charities, cancer was the most valuable ‘sector’. It’s emotive – we’re all terrified, frankly. Or guilt-ridden. And the money keeps rolling in.

I didn’t know that Breast Cancer Awareness ribbons were popularised by a pharmaceutical company, who nicked the idea off a breast cancer patient who had just wanted to show a bit of solidarity with fellow sufferers. And I will always question, now, how much of so-called ‘pink products’ even goes to the charities. You guessed it – the lion’s share it ain’t.

Because I didn’t know the half of it. And I’m not saying that I do now –but it’s a conversation we’ve got to keep alive. The rising trend in the incidence of breast cancer is telling us that it’s a problem for my generation, and the next generation after that. It’s up to us to challenge the status quo and ask some questions; force some answers. Think about where our money goes and to what end. And who’s gaining the most at the moment. Because I just don’t believe that it’s the breast cancer patient.

I suppose there isn’t really any incentive for these mega-rich pharmaceutical companies to look too hard into cancer prevention, given the amount of vested interests tied up in keeping people sick and creaming the revenue from making them better. Not well again, you’ll note, just better than they were…

I didn’t know either that with breast cancer you never get the ‘all clear’ that the media likes to report; life never quite returns to normal; that the chance is always there, hovering, of secondary cancers invading other organs.

Believe me God when I say that the second anyone is diagnosed with breast cancer then I would wish for nothing other than a cure for them; but believe me too when I really wish they’d never had to go through all that in the first place.

So let’s not preserve the status quo. Feed the sacred cow. Like we couldn’t possibly conceive of asking questions or casting doubt. So whether that’s through a book like Sarah’s, or blogs like these, it’s up to us to demand something better for our mothers, sisters, daughters and friends – and the men too who get breast cancer. Let’s talk, challenge, question and debate, and not just accept our medicine with its spoonful of pink sugar.

Earlier this month Ronnie blogged that ‘pink’s not wrong: it’s just not right enough’. So if we do nothing else this October, maybe we can get a bit more savvy about breast cancer ‘awareness’. No platitudes that it’s OK – women survive today; that a cure is enough; or even that it’s some sort of twisted feminine right of passage. It’s time to wake up and face up to a few truths. And there’s a role for all of us in that.”

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8 thoughts on “I just didn’t know…

    • Love ya too Dolly! Wow, it’s amazing me who’s reading this… It’s a very strange feeling when something that feels so personal is out there. But hey, guess it’s out there now! xxx

  1. Excellent Fiona! Very thought provoking and yes I got angry reading it thinking about the issues you raise. Great ‘spellin’ too!!!! thank you for writing Karen x

    • Ha – thanks. I imagine I’m just sitting there in a room, ranting away. And then it’s kinda public! But yes, still amazes me the amount of things that just aren’t talked about, and the basic misconceptions we’re pedalled… xx

  2. Fiona,
    Well, if you didn’t “know before,” you have certainly learned a lot! Great post hitting on a lot of really important issues. I always keep saying too, I don’t mind the pink. Pink is fine, it’s just not enough. As you said, we must challenge, question and debate. It is time to wake up and face up to a few truths. Thanks for writing this and thanks for publishing Sarah’s book.

    • Thanks Nancy; honestly, I can remember being amazed, and confused, and terrified by so many things I learned working with Sarah. I hope pink does an important job in getting people to think about breast cancer and the issues that surround it – it just frustrates me when that’s the only dimension people have, and they don’t feel the need to know any more or ask any questions because of what they’re told within those parameters. I guess only time will tell whether it provides an easy entry point or narrows the field of vision…

  3. Brilliant post Fiona….. and yes we should be debating as well as making the media see a lumpectomy, mastectomy, radiotherapy, chemotherapy and meds is not a cure, its extra time. Or like someone else said the hope is that it won’t be the cancer that kills, but a bus when navigating along London’s streets.

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