Five years. Stuck on my eyes.

Summer is in the air. My fellow bloggers are writing about it.

Nancy’s Point writes about The summer that wasn’t…. I can so relate to that. My fifth summer now since diagnosis, missed the first one with surgery, the second one with side effects of treatment, the third with more surgery, and most of the fourth, last year, with depression. Ah, the long and winding road of breast cancer treatment.

Bringing up Goliath writes about an Old Acquaintance, enjoying laughter and looking forward to things. But scared to jinx it by writing about it. I feel the same. Worried that the ‘good’ feelings will slip away from me if I tell everyone about them.

Chemobabe has been on vacation with her family and writes about Shifting Time, about how tense things become for us all during treatment.

“Time changes shape. Horizons shorten. The Present Tense of crisis is fueled by adrenaline, colored by anxiety. There is so much to worry about. Health. Money. Health.”

I didn’t know the ‘Present Tense of crisis’ would last so long. But it has. I only recognise that it’s been so tense particularly now by the absence of it. Continue reading


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

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?