“What we love, we must protect.”

Sunday. I’m on the train from Liverpool to London. This time last year I’d just had my sixth surgery as part of my treatment for breast cancer.
This time last week I hadn’t found the funding for the trip to Brussels. And I felt deflated and momentarily thought, ‘Oh that’s it I’m not going. Oh well, I don’t mind.’ But I did mind. There are some things you have to do.
And so with only seven days to go before the event, I ask my friends for help. I ask on Facebook, I ask my email list – can you give me fiver to get to European Parliament? And they do. I raise over £400. So I am on my way. Thank you everyone.
I could do a million other things, but I’m not, I’m choosing to do this one single thing – to get to Brussels.
Monday. Eurostar. Brussels. It is starting to snow now and it’s very cold and windy. The European Parliament is enormous. The list of participants shows people from a range of European organisations working in health and cancer, plus six MEPs. I introduce myself to Sandra Steingraber, the American environmental scientist who’s had cancer, who we’re here to see, and I give her a copy of my book.
In European Parliament
In the seminar room and it’s like every picture you’ve ever seen of a European Parliament room. Translation booths all around it, NL, IT, ES, DE and so on illuminated in big red digital letters. Microphones and headphones at every seat. Even the cups and saucers have the European flag printed on them.
Sandra is introduced by the Finnish MEP Sirpa Pietikainen. Then Sandra talks about the new study of epigenetics. That some chemicals can alter the expression of genes, so they create a pathway to tumour formation. She talks about her experience of being a cancer patient. The long walk from the car park to the hospital. I’ve been there. Different hospital, same sense of isolation and darkness.
She says we can’t change our ancestors but we can change our environment. It’s rational. She says, “What we love we must protect. That’s what love means.”
In the panel discussion I ask a question. I speak as a patient, as a person who feels that change must happen, so what can I do? Sandra says it’s all about policy. Changing policy. That our governments must protect us and we have to have carcinogens being de-normalised by governments.
Sandra Steingraber

And yes, this is a good event. But it makes me realise how slowly things change, how slow it is to get legislation changed. Science to policy.

Tuesday. I travel back to London and then to Liverpool. 53 hours away from home, 20 hours travelling and three hours in the European Parliament.

When I get home I receive an email telling me that everyone was very impressed with my determination to get to Brussels. And that everything has repercussions. That it will make a difference.
It’s good to be part of change.

You can see this blog post as a short film (three minutes) here:

“What we love, we must protect.” from Sarah Horton on Vimeo.

Watchful waiting


It’s four in the morning. I should be asleep. But two words tumble out of the darkness and play just out of my grasp. Watchful. And waiting. Watchful waiting. I didn’t know that expression before and now, in that way it happens, I just saw it twice in the same day.

I was at the clinic in hospital last week. I saw my breast surgeon for a check up. She went off clutching her copy of Being Sarah, and beamed at me telling me how proud of me she is. Big sigh. I do like her so much, but I would like my life not to contain sitting in cancer clinic waiting rooms. To not contain a medical file on me that is about four inches thick.

To not contain any of the admin of being a breast cancer patient. But it does, so I have to live with that.

At the end of our consultation I am given the usual yellow form. Alison, my surgeon, gives me one of these every time and she ticks some boxes and writes when my next appointment will be. I then hand it over to the reception staff, or if they have gone home – which they usually have as I’ve spent so long with Alison – I put it in the special red box in the waiting room. All the times I have done this in the last four years, and not once did I ever read the tick boxes. Alison has ticked the one that says, ‘Watchful waiting’. And I never thought of myself like that. That we are watching and waiting for something, or for nothing. As in breast cancer symptoms. 

When I get home I have an email giving me a link to the work of Sandra Steingraber, a ecologist and campaigner for cancer prevention. Her current book is called Living Downstream. These are the opening words:

Once there was a village overlooking a beautiful river. The people who lived there were very kind. These residents, according to the parable, began noticing increasing numbers of drowning people caught in the river’s swift current. And so they went to work devising ever more elaborate technologies to resuscitate them. So preoccupied were these heroic villagers with rescue and treatment that they never thought to look upstream to see why the victims were falling in. Living Downstream is a walk up that river. The river of human cancer.’

This is brilliant parable, an intriguing and clear way of expressing the way we view cancer now. We help cancer patients, but we don’t look at the causes. I continue reading. On the first page of the introduction, she explains that she had bladder cancer thirty years ago, but she is still regularly check for the disease returning. She describes receiving a telephone call from her medical team. Her last test results are abnormal. She has to give another test. After putting the phone down, she describes sitting in her home, her children’s crayons on the floor, the tomatoes are still on the stove, but the world has changed now. She gives another test, and then:

‘I began living within that period of time known as watchful waiting. This is a familiar place to me. Watch means screening test, imaging, blood work, self-advocacy, second opinions, and hours logged in hospital parking garages. Wait means you go back to your half-finished essay, to the tomatoes on the stove. You lay plans and carry on within the confines of ambiguity. You meet deadlines and make grocery lists. And sometimes you jump when the phone rings on a sunny afternoon. Bladder cancer recurs in 50-70 percent of patients. There are evidence-based reasons for feeling jumpy.’

Sandra Steingraber has perfectly described what this feels like. Watchful waiting.

And so what does that mean for me? I return back into my life. I go running. I knit. I plant bulbs in pots. Paperwhites and hyacinths. I plant garlic and onions, to harvest next year. I make quince jelly. I return to my screen printing, finish the latest images that I have been working on. And I am me. Watchfully waiting.

So in the night the words steal into my brain and wake me at four when I should be sleeping.

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.