Rachel and Sarah

Rachel, June 2011

Ronnie here, standing in while Sarah’s away

Early this morning I took Sarah to Manchester Airport for her plane to New Jersey, to join everybody else there and say goodbye to Rachel. Going there, at the same time and the same terminal, reminded me of a happier day last June, when Sarah set off to go and stay with Rachel and Anthony for a week. Later in the year the two friends both mentioned this magical week, when they published these two parallel posts about each other and their friendship, on the same day, last October.

My Friend Sarah, by Rachel Cheetham Moro

“This year I have spent a lot of time in Liverpool. Yes! The Liverpool of Beatles fame in Northern England. I was surprised to learn that Liverpool’s climate actually rarely sees snow because it’s temperate maritime and the city is a recipient of warm bands of Gulfstream air. So this is why I’ve seen daffodils growing in Liverpool’s parks in February. Spring comes early in Liverpool.

On the deck of the allotment

I’ve meandered down Penny Lane in March and have been a regular visitor to a wonderful public space known as an “allotment”. It’s a kind of cooperative where the good citizens of Liverpool may rent garden plots to raise fruit and vegetables or whatever their inner gardener desires.I’ve clomped around in garden beds and dug for spring onions of all colors, fresh bulbs of garlic, and delicious little new potatoes. I’ve picked tomatoes and cucumbers and wondered aloud what to do with them all. I’ve even picked a pomegranate. A tropical fruit grown in Liverpool? Must be that Gulfstream air.I’ve strolled down flower and tree lined rows of allotments. I’ve shaded myself under an apple tree and I’ve marveled at the bounty of the most beautiful pear tree I’ve ever seen. I’ve sat on the deck of the allotment shed, sharing a picnic and catching the last few rays of summer sunshine and I feel like I never want to leave.

It all comes back

November 2007, picking Sarah up from hospital after her oopherectomy

Today’s guest blog, from guest Editor, Ronnie, picks up on Barbara Ehrenreich’s classic article ‘Welcome to Cancerland’. This one’s about ‘Carerland.’ It’s right next door.

So, it’s Monday evening, this week. Sarah’s just gone out boxing and the phone goes. It’s the hospital, offering Sarah a cancellation slot for her next surgery, this Thursday. ‘Do you think she’ll take it?’ I’m asked. ‘Well, I think she’ll hit the roof, blame me for the short notice, stomp around the house for a few minutes, and then agree it’s probably best to get it done now,’ I tell her. And an hour or so later, this scenario plays out, more or less precisely. Sarah takes the appointment, and immediately begins her blog about it, published on Tuesday.

Tuesday morning for me, I’m out on what’s becoming my regular run. From our house, ten minutes down to Sefton Park, once round the park, twenty minutes or so, then back up to our house – bit more than ten minutes, mostly uphill. Monday morning I’d skipped round this. But Tuesday’s different. In the end, my times are pretty much the same. But there’s a heaviness in my legs and in my heart. Skipping it isn’t. And half way round I realise I’m running through previous preparations for surgery, previous waiting rooms. And it all comes back. Welcome to Carerland.

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?