And I have.

The memento book, completed on my walk to remember Rach.

I am back from my pilgrimage walk for Rach. I am filled with memories, and I filled my memento book with words and images. These words: Continue reading

Immediacy

South Stack lighthouse, Holy Island

In conversation with our accountant last week I said, ‘Never mind the VAT, what about the puffins?’

She’d told me in an email that she had recently been on a sailing holiday around the Hebridean Isle of Mull, and shared a picnic with puffins. The puffins had just arrived back on land from sea, ready to start breeding, and were cleaning up their nesting sites. I was enchanted with this image. A picnic with puffins. It also reminded me that puffins visit a nesting site on Anglesey, much nearer Liverpool than Mull. The Atlantic Puffin spends most of its time out at sea, but comes back to land to breed between April and July. Meaning May is one of the best times to see them.

Puffins are small seabirds in the family of auks. All have small wings and on land are fairly clumsy, as they are designed for fishing and swimming underwater. They are characterised by their colourful stripey beaks, only like this in the breeding season, and bright orange feet. I’ve never seen one because, although they do come to the UK, they choose remote inaccessible places to breed, out of the way of predators like mammals. Now I am reminded and I want to see one.

So, I say to Ronnie, ‘Shall we go and see the puffins?’ And he knows that I mean tomorrow or the next day. There’s a sense of immediacy that happens after a cancer diagnosis. If it’s happening now, then I want to see it. Now. So we do. Continue reading

Anger has an important place in breast cancer culture

The following piece appeared in The Big Issue in the North, 6-12 December 2010
Photo: Karen Choudhary

Sarah and Ronnie, June 2010
When Sarah Horton got breast cancer, she encountered an industry that encouraged her to be nice about it when in fact she was filled with rage. Why are we content to seek a cure, she demands, when we should be finding out how to prevent the disease?

So, if the worst happened to you, would you: go camping more? Run on a beach in Cornwall? Spend more time at the allotment? Knit gloves for babies and best friends? Learning something new? Go out to play with a child every week?

Well, I did all of them. In 2007 I was diagnosed with breast cancer, aged 43. I was shocked, because healthy, fit women don’t get breast cancer, do they? But yes, they do. And I was terrified.

I faced a series of hard decisions about hard treatments. I set out to find out what would give me the best outcome – the best chance of staying alive – to give me choice and control. That involved lots and lots of doctors appointments, second opinions and questions. But what I decided most of all was that I wanted to have a life, a life full of camping, activities, retreats and gardening.

Yes, I have been treated. But the reality of treatment is far from pleasant

My treatment for breast cancer involved six operations over a three year period. I’m now living in a life beyond diagnosis. Not cured – that is never used for breast cancer. The disease is too fickle, too unpredictable to say that it is out of my life forever. There is still no guarantee that I will not die of this disease. But for now I am well. I still have regular doctor and hospital appointments but they are fewer. I am lucky to have had the support of an amazing partner, Ronnie, who has helped make this period of my life loads better than it could have been.

So in between my treatments and surgeries, we went camping in the Lake District, St Ives and Islay. We used trips to Bath to see a private doctor as a chance to have a short break away from home, to visit the arboretum at Westonbirt, in every season; bluebells and magnolia through to burning acers in the autumn. I completed the RHS Certificate in Horticulture at night school, losing myself in the science of plants, the theory of propagation. I went on a bee keeping course in Gloucestershire, a birthday present from Ronnie. I went swimming, to my yoga class, dragon boating, walking.

They’re the good bits. But I wouldn’t want to give the impression that having breast cancer is a good thing. Because the media’s doing a good enough job of that as it is. The media portrays breast cancer as a treatable disease. Yes, I have been treated. But the reality of treatment is far from pleasant. The operations I’ve had, at the hands of my brilliant NHS surgeons, include mastectomy, oophorectomy and breast reconstruction. I’ve spent hours of my life in hospital, and my treatment is still not finished. I have been terrified, feared my own death, an early death. I have felt ill and exhausted and mentally drained. All of this and felt like three years of my life has been lost, lost to this disease. Breast cancer kicked a hole in my life that’s so big I couldn’t see the edge. I still can’t.

Breast cancer charities and companies selling pink products put a gloss over the terror of breast cancer. They promote cheerfulness and acceptance in the face of this mutilating disease. There is always a fundraising event going on for breast cancer, and we, as good citizens, are bravely doing our bit to raise money for research to “beat” breast cancer, to find an elusive “cure”. And yet the breast cancer statistics continue to rise.


Charities and companies selling pink products put a gloss over the terror

Breast cancer continues to be simplistically portrayed by the media. You get diagnosed, you go through your treatments bravely; you have the support of wonderful friends and family, and you turn into a “fighter”. You’re now a “survivor” and you may well be wearing a pink t-shirt.

But breast cancer is a range of different types of cancers, with diverse characteristics and treatments. It would need several different cures – not one catch- all, nice, simple one. I will never hear the word “cure” spoken to me by any of my doctors, because we can’t cure breast cancer. Even treated successfully, it will carry the chance of recurrence, forever. So, having become someone who lives with that fear of recurrence, I started to think about how much better it would be if breast cancer didn’t happen in the first place – if we started to prevent it.

We all know there are lifestyle factors for good health because the media keeps telling us, and I’m not going to bore you with them here because I followed them and still got breast cancer, as did many other women. The focus of prevention needs to be about how toxic our lives have become – the whole range of chemicals that surrounds us, even if we’re not aware of them.

The Breast Cancer Fund in the US produces a report each year, The State of the Evidence, which evaluates scientific information linking breast cancer and the environment. The “environment” means chemicals found in plastics, food, air and water, personal care products and household products. They may be tiny amounts of different chemicals but in combination, over a period of time, they could be causing cancer.

Recently some of the world’s biggest food companies announced they are removing the chemical Bisphenol A from packaging, amid growing concern it is causing a wide range of illnesses – including breast cancer. This is good news but it’s just a start. We need to be looking at many more chemicals and evaluating their safety.

Other writers have suggested that if the breast cancer movement – that is, the pink ribbon movement – aligned itself with these scientific concerns about environmental factors, it would link them with anti- corporate social movements, something the pink brigade don’t seem to want to do. It doesn’t sit with the nice-ness of breast cancer. Or all those nice pink products on the shelves. It’s suspicious and questioning of industries that use these chemicals, and of the governments that are not protecting us from the harm they might be doing. And that’s not very nice. But where is nice getting us when one in every nine women will be diagnosed with breast cancer at some stage in their lives?

I fiercely resisted the accepted route after diagnosis, which tried to ensure my experience of the disease was feminine and palatable. It wasn’t nice – I felt rage. I felt anger. And yet it did not seem that being angry was OK. But anger has an important place in breast cancer culture. If we get angry, then maybe we’ll finally get a movement where there is real pressure to look for the causes of breast cancer and prevent this disease.


We need to be looking at more chemicals and evaluating their safety

I’ve written a book, Being Sarah, which documents my struggle to find choice and control over my treatment, rather than obediently accepting the drugs offered to me. It’s a few weeks now since I published the book. People who’ve read it have been emailing me, telling me what they think. And they say it’s both angry and happy, it’s compelling, inspirational, life- affirming, opinionated and outspoken. It’s thought-provoking and challenging. It’s not all about breast cancer. It’s about life, actually. And what’s more precious than that?



Green silence

This week I am reminded, again, that I am a breast cancer patient. The doctor’s appointment yesterday. His empathy and understanding. I can hear my words echo in his small office, I don’t really know where they came from. I don’t cry but I can hear a lot of emotion in my voice. His honesty when he tells me that other cancer patients express similar feelings after treatment, about anger and sadness and grief. And that they can last a long time, maybe a year, he says. 

I am drawn back to Audre Lorde’s words in The Cancer Journals. She wrote this book in 1980 after her breast cancer diagnosis and mastectomy. She writes so well about her pain, her loss, and her anger. She has been, and continues to be an enormous inspiration to me. 

‘I have found that battling despair does not mean closing my eyes to the enormity of the tasks of effecting change, nor ignoring the strength and the barbarity of the forces aligned against us.’

I recognise myself in her words. My desire for change, change in how we view breast cancer, serious not trivial; how I want it to be a disease that we prevent.

‘It means for me, knowing that my work is part of a continuum of women’s work, of reclaiming this earth and our power, and knowing that this work did not begin with my birth nor will it end with my death. And it means that within this continuum, my life and my love and my work has particular power and meaning relative to others.
It means trout fishing on the Missisquoi River at dawn and tasting the green silence, and knowing that this beauty too is mine forever.’

I think I want to find myself doing more of whatever my own version of trout fishing is, and tasting green silence.

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.