The weight of breast cancer

metastatic breast cancer

Some days the weight of it all is too much.

Here we are nearly halfway through the month of October and my self appointed task of a ‘post-a-day’. Well, I have to tell you I’m actually finding this quite hard. Hard, as in difficult. Yes, the admin of scheduling  the posts, even though I do have a plan, but things change. You know life happens – or death – so Steve Jobs gets an impromptu post. And I am indebted to Ronnie here, for his help and guidance as we look at the schedule and decide what will work.

And then there are the comments. Moving. Sometimes achingly so.

I’m saddened that there’s even enough subjects for a post-a-day, in fact there’s more than enough. I’m moved by my friends’ reactions, by what they write. By how deeply this touches people around me. Oh, but the weight of it all. Continue reading

The story of Being Sarah

Today it’s exactly one year since we launched my book. You can see a 90 second film of me reading from the book here:

One of the questions people often ask me is, ‘How did you write a book?’ Well, it takes a long time and a lot of editing… and for me a lot of anger and determination. I wanted my words to be heard. So I thought my readers might be interested in the story of how my book came into being. And, fortunately for me, my good friend Rach over at the Can-Do Women blog has already written this, so I’m going to let her tell the story of Being Sarah. Many of you will also know Rach as the snarky and opinionated voice of The Cancer Culture Chronicles.

We did this interview on a Skype conversation in January 2011, the first of many hours of talking together which has led to a deep friendship, despite the 3,500 miles that separate us. You will hear more from Rach during the following month.

Thanks Rach for this and all our conversations. 

“Today I’d like to introduce you to Sarah Horton, author, artist, entrepreneur, blogger, filmmaker, activist and an all-round highly accomplished and creative Can-Do Woman. I had the pleasure of meeting Sarah through my other blog, The Cancer Culture Chronicles, an insider’s view of living with breast cancer in today’s society. I found Sarah’s story to be so incredibly inspiring, and I am delighted to be able to spotlight her achievements here today on the Can-Do Women blog. Here is a part of Sarah’s story.

Being Sarah

22 February 2007, day after diagnosis.

In February 2007, at the age of 43, Sarah was diagnosed with breast cancer. To hear those words uttered is a moment so terrifying and raw, that one barely has time to think, let alone be able to string a sentence together in any cohesive manner. Yet, that’s exactly what Sarah did.  Despite being paralyzed with fear (or perhaps “despite” should be read as “instead of”), Sarah began to write in earnest.  On the day after her diagnosis she took a leather-bound journal, had her husband Ronnie take a picture of her at their kitchen table, and  began compiling her thoughts, lists of questions for the doctors, research for treatment decisions; anything that seemed relevant to the horrifying road on which she was about to embark. Continue reading

Some days are.

Being Sarah BMA Book Awards

Me, Ronnie Hughes and Fiona Shaw in Russell Square. A gorgeous golden moment.

Some days you know are days you’ll always remember, even when they’re happening. And this was one.

Me, my partner Ronnie Hughes and our good friend and adviser of ‘all things book’ Fiona Shaw, are off to London for the day to attend an awards ceremony. The 2011 British Medical Association (BMA) Medical Book Awards have recognised my book Being Sarah. Out of nearly 700 entries it’s rated as Highly Commended in the section of Popular Medicine, which means it’s in the top 15% of books that have been reviewed. We are all delighted.

We meet at the station in Liverpool and get the train to London, happily chatting for the two hours it takes, and look at the gastronomical recommendations for our lunch from Ronnie’s friend Liam Black. The sort of restaurants that say ‘napery’, meaning table cloths. All much posher than we’re used to, but hey, this is a day off, a celebration! 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?