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. Continue reading

Real?

Summer camping at Hill Holt Wood with Ronnie.

I’ve just been away on a short camping trip with Ronnie in a beautiful wood in Lincolnshire. We had one night alone and then spent the next two days with a group of people from Hackney Community Transport who we’ve been working with over the last seven months on their ‘social enterprise champions’ project. A fabulous experience. And it didn’t rain!

Back at home, and I’m going through my emails and there is one titled ‘Sad news about Jane Smith’. No, Jane Smith is not her real name, but she could be one of thousands of women like me, who’s being diagnosed with breast cancer in their early 40s.

I know immediately that she has died. Of secondary breast cancer. Of course, the email does not mention that, it says she had ‘a long illness’. We are spared the details. I feel so many mixed emotions. Including anger. Continue reading

Loud opinionated Jane

JaneRA

JaneRA died of breast cancer in December 2009. I ‘met’ her through the forum we both used, a breast cancer forum. She wrote a piece to be posted both on her blog and the forums she used after her death. Loud opinionated Jane, loudly spoken even after death. Unashamedly unsentimental, Jane saw nothing good about breast cancer, and always expressed herself in an honest forthright manner. After Jane died the forum, BCPals, took over the responsibility of hosting her blog so her words can still be found and read.She wrote about the reality of her breast cancer treatment, her opinions on assisted dying, about her dislike of breast cancer fashion shows and pink October, the stereotypes of the ‘valiant survivor’. Due to the nature of her tumour she had started to lose her voice, and was saddened by that, but she made up for that with her words – she called her blog her new voice. She was never afraid to make her points very clearly. I am still moved by her words, and both cry and laugh when I read them.

I recently shared her final piece with my friend Anna Rachnel, and we thought a lot of people would like to read this.


So here it is.

Jane’s final post:

As many of you know I never found anything positive or uplifting about having breast cancer … nevertheless getting breast cancer in the age of the internet has meant a support and information network which was unknown 15 years back. Thank you to everyone who has helped me on these forums since I first logged on in February 2004. Thank you for your support and information, your kindness and laughter. Thank you for great discussions and debates.

My death is but one of the 12,000 deaths from breast cancer this year. More than 45,000 women will face diagnosis in this time. My death is unremarkable. I am 60, not a bad age, even in the west, but still a premature death. Premature, too, are the numerous deaths from breast cancer of young women with young children. They are there, unnamed in the statistics.

I’d like to think that among those of you reading of my death today are some young women, newly diagnosed with triple negative breast cancer, the relatively unusual type I had. Today you are very frightened, crying and confused. But I want to imagine that you are going to be all right and that after your treatment is over you will decide to get involved in cancer campaigning.

But not for you are the appearances in Fashion shows, not for you fundraising at pink pampering parties, not for you airbrushing the reality of this disease into some designer must-have condition. You will decide on a harder more radical route … and a movement will begin to challenge governments, and research scientists, the medics and the charities. You won’t be smiling sweetly about good 5 years’ survival statistics … you’ll be saying that 12,000 deaths a year is not good enough, that effective prevention and treatment, let alone a cure, is barely off the starting block, that this is awful and it has to change. There was the whisper of such a movement recently … I hope the movement promised comes to fruition with determined committed campaigners.

Winding forward to say 2050, I hear you talking to your grandchildren about the old days when breast cancer still killed, and generations of women died years too soon. For now in 2050 few people get breast cancer and no one dies of it any more.

This is my hope, my hope for all your futures. Please smile and raise a glass for me in that hope. But avoid soppiness, or any references to bravery and fighting … there were none. Like the thousands before and after me, I simply did the best I could to live as well and as long as I could. We are ordinary women dealt a bad hand by breast cancer.


I too hope there is a new movement, a movement that comes with determined committed campaigners. And you know when I read Jane’s post back in 2009 I wondered – who is going to ask the difficult questions? Who will take this ‘radical route’?

Well, here we are over a year later, and I think the questions are being asked, by Gayle Sulik, author of Pink Ribbon Blues, by Anna Rachnel on her Cancer Culture Chronicles blog. I think Jane would have enthusiastically joined the discussions. So if you’re out there asking questions then drop by and join us. I hope you will.



Shining shore and pink ribbon blues

 



Today we went on one of our favourite walks. To the shining shore. The river Dee estuary. The mud is full of wading birds. We stop at our favourite stopping place overlooking the estuary. It is completely still. So still we can hear the noise the beaks of the shelducks make as they waddle along in the mud hoovering it up, some sort of feeding habit. We have our lunch. I’ve brought Gayle Sulik’s book with me, Pink Ribbon Blues. I have the last 40 pages to read. I want to finish it and reflect.




Gayle Sulik makes brilliant observations in her book about the whole breast cancer culture. And it’s about time we started to take notice, because breast cancer statistics are increasing, not decreasing. And we’re spending more money on treating women, but – a woman diagnosed with invasive breast cancer gets more treatment now, but still ‘has about the same chances of dying from the disease as she did 50 years ago.’ (p159) That’s not progress.
This is a brilliant book that looks at the real issues around breast cancer. Gayle Sulik skilfully analyses the pinkwashing of corporations who manufacture products that may in fact be contributing to breast cancer, who are manipulating the goodwill of millions of US citizens who believe that by supporting pink products they are helping to find that all elusive ‘cure’ for breast cancer. But that prevention isn’t on any agendas.
She is not afraid to look at the difficult subjects, like the questions about the effectiveness of mammography, the possibility of over-treatment due to increased screening, the pharmaceutical industry that profits from the drugs we use to treat breast cancer: ‘The industry that benefits from the increased use of mammography and pharmaceuticals is at the core of what has become pink ribbon culture.’ (p210)
Gayle Sulik also looks at the whole cheerful culture of breast cancer. The upbeat message of breast cancer survivorship, and the ‘normalization’ of the disease, ‘specifically the suppression of any feelings that might destabilize upbeat social interaction.’ (p237) This culture that promotes so much positive demands on women, and yet suggests ‘that the women who do not survive are not optimistic enough.’ (p243) I have often reflected that you wouldn’t think that breast cancer is a disease about death. It’s presented to us as so palatable and acceptable. It’s time to challenge that.
In chapter eight Gayle Sulik refers to the ‘terrible stories’ of breast cancer. The women, like Audre Lorde, who wrote about their experiences with anger and honesty. That the cheerfulness as the way to survive ‘succeeds in blaming the diagnosed for getting cancer in the first place, limiting women’s personal expression to sanctioned cultural scripts.’ (p342) That breast cancer patients only have a few words to express our experiences, and that we are forced into the role of ‘ triumphant survivor’. And that society looks away ‘from what might be causing breast cancer, the environmental factors, ignoring the profit in medical system’, with no ‘real investment’ in prevention. (p342)
In the final chapter Gayle Sulik talks about the stereotypes that are reinforced for women:  breasts and pink. And that pink ribbon products trivialise and ignore the reality of breast cancer whilst ‘degrading women and putting them in their place.’ (p372)
I was diagnosed with breast cancer, in the UK, in 2007. I have always found the pink ribbon culture to be too cheerful for my liking. And no, I’m not a survivor, I’m not better or different than the thousands of women who die of breast cancer, treated and just lucky – so far. Let’s hope this book can finally start to change the tide of pink so that we start to see a future that seriously looks at prevention, the environmental links to breast cancer, and is really free of the fear of breast cancer for all women.

This book could change the world. If you have any interest in us really making a difference to breast cancer statistics, then please – read this book.