Losing Rachel

Rachel and her dog Newman

My friend Rachel died on 6 February this year. From metastatic breast cancer. She was 41. She will be greatly missed by her beloved husband Anthony, her family, her friends, her dog and the thousands of people who read her sharp, angry and witty words on her blog where she challenged mainstream breast cancer culture: The Cancer Culture Chronicles. She was my friend. In fact, she was one of my closest friends, found in the blogosphere and we became close despite the 3,500 miles that separated us. Her death came too soon, I was not ready for this and the grief has been profound.

In the grief of Rach I’ve been remembering other things. Sort of introspectively remembering my life since my breast cancer diagnosis, things that happened.

Oh Rach

The Skyping begins. Rachel interviewing Sarah for her Can Do Women blog, January 2011

Still Ronnie, standing in while Sarah is New Jersey.

Is it still too soon? I want to write Rachel something lovely. Something as good as anything I’ve ever written. (Something as beautiful as her friend Chemobabe’s eulogy, or as world-changingly essential as Gayle’s) She deserves at least that. But I can’t, yet. I need to take the fact and my feelings about her death to the park, to the cathedral, to the river – to my sacred places. I need to tell them about her. And my sense of loss. Until I’ve done that I won’t find the words, my words, for my friend Rachel.

So, for now, here is a very short poem.

World without cancer

Some days chocolate is a necessity. Real friends know when.

Let’s face it, Facebook has redefined what we mean by ‘Friends’. You know when someone asks if you know so and so, and maybe you reply, ‘Well I do know her/him, I mean she/he is my friend, well my friend on Facebook that is.’

Does it mean anything?

I’m one of those people who have in the past accepted every friend request on Facebook, only to regret it days later when my News Feed is filled up with Farmville requests or some other Jewel type annoying games. Well I think they’re annoying anyway. That’s not what I want to use Facebook for. Or announcements about what you’re watching on TV right now. No thanks, I’m just not interested. And it amazes me how the most banal comment can attract 28 comments. I just can’t do trivial. I mean I love to engage with real lives, and lives lived in joy and delight. And I do enjoy ‘normal’ now a lot more than I ever thought I could. But sometimes I feel that my world is filling up with trivia that doesn’t enhance it, and anyway, really how can anyone have 1,159 friends? Or 159? Maybe 59 at most? If you are seriously going to engage with them and have meaningful conversations as well as some fun. By the way, I don’t know the right answer. I hate those Facebook messages that go ‘post this if you’re really my friend, let’s see who is paying attention’, because what I think is well, no actually, if you’re really my friend – TALK TO ME.

So, I’m one of those Facebook users who does cull their Friend list. Yup, I unfriend people. And you know when I unfriend someone with 2,543 friends, I know they won’t even notice. If I wrote on their wall, would they even notice? And when I get a Friend Request, I respond with a message, ‘Do I know you? Have we met? Do we have something in common?’ Because I’m not interested in becoming ‘friends’ with someone if we don’t have something to talk about. I mean, real friends, that is people I know in the flesh, I interact with them, I chat, heck I even have lunch with them sometimes. And I am careful who I spend my time with. Because I know that time is limited. I feel that more keenly now. No, I’m not being a miserable cancer patient who’s predicting doom and gloom that will result in my early death. That’s not what I mean. I also know that I have less energy now too, and the energy I do have I want to spend it wisely. Not waste it. I can’t. It would be unfair on myself.

What I mean is, that doing this blogaday has shown me something. It has shown me how deeply affected I am by the conversations I have when they are real.

‘Death. Life’s change agent.’

February 2002, Ronnie switches on our latest 'new' computer

Today’s post is not the one I’d scheduled. Yesterday the world woke to the news that Steve Jobs had died. Last night we got out our photo albums and looked back at the memories of computers we’d owned. Apple computers that have changed our lives and enabled us to create the life we have, and the work we do. We’re just getting ready to go out walking today, checking the tides on my iPhone, grateful that we’re alive to be living in such a technological miracle. So today’s post is a guest post, written this morning by my partner Ronnie Hughes. 

“I know a lot of people are bored, not to say, pissed off with breast cancer. Even this early in October, it can feel like there are no other cancers out there to be concerned and angry about. Somebody said, and it might have been me, ‘Nobody’s putting on pink t-shirts and running round the park for bowel cancer are they?’ It’s like the pink industry hoovers up all the charity, leaving no room for anyone else.

June 2010, Steve Jobs

Well now, one of the most famous men in the world, Steve Jobs, has died of an unfashionable cancer, pancreatic cancer. And suddenly, it seems, October has become ‘Life and Death’ month. And all the media channels are alive with the kind of talk that we, in the post-diagnosis world, take for normal.

Anger, at a life being taken too early, and loss, for what else he may have done. But also people are writing and talking about the things he said. About death, the valuing of every day and the importance of doing what you love. Particularly in his Stanford speech in June 2005. And it’s in this speech, more than anything else he ever said, that we get a view of Steve Jobs that those of us in ‘cancerland’ can clearly recognise.

‘The enormity of our task.’

I’ve recently finished reading The Cancer Journals by Audre Lorde for the sixth or seventh time. It’s such a deep and inspiring read. Every time I read it I find I am touched again on many levels by Audre Lorde’s insightful and skilfully expressed emotions – anger, loss, fear – they jump off the page.

I bought this book over four years ago newly diagnosed with breast cancer having recently had a mastectomy in March 2007. At that time I hung around in the cancer sections of bookshops looking for, well, looking for what? I’m not sure  – answers maybe to all the ‘whys?’ I had:

Why me? Why so young? Why so little choice? Why do I feel so alone?

And did Audre Lorde answer my questions? I think, actually, now looking back through the years which I see now as layers, I see there are shards of answers to all the ‘big’ important connections I’ve started to piece together, and they have all started from seeds in this book:

• the links between the causes of breast cancer and the environment;
• the sense of a ‘bigger’ industry, Cancer Inc.;
• and particularly about how women are encouraged to treat breast cancer so, ‘nobody will know the difference’.

Audre Lorde writes The Cancer Journals in 1980. That’s 30 years ago. 30 years. Wow – that’s a long time. For so little change.

Being Ronnie

Me and Ronnie near the summit of Helvellyn, Lake District, July 2011

This post is a guest piece from my partner Ronnie Hughes. Ronnie has written before about why we walk together, and here he shares his experience of being my carer, and how breast cancer affects his life as well as mine. 

“I am in the waiting room staring at the message on my phone. The message Sarah has just sent from the other side of the doors they won’t let me through. The doors of the Rapid Diagnosis clinic. The message says ‘It’s ultrasound next’. It will be another hour before they let me through the doors to care for a terrified Sarah. But with that message, for me, it begins.

And we enter the whirlwind of cancer. The whirlwind so accurately and even thrillingly described by Sarah, in her book, that there’s no need for me to repeat the story here. But I do have things to add. Because two lives are changed on 21st February 2007, Diagnosis Day. And one of them is mine.

Early days, we cling together, shocked and ignorant, staring at Sarah’s mortality. She asks me to help her start documenting this, an instinctive artist even in the middle of the biggest crisis in her life. So the stills camera that was bought for holidays and good things, as well as our work, is cradled in my hands, focussing on Sarah’s bruised breast. And soon enough, on the scar where her breast used to be. Hundreds of photographs, and hours of filmed interviews follow. It helps me, in a way, to feel useful and objective. But it also distances me in that way cameras do, so I wonder, even now, if I’ve yet felt all the grief I’m going to?

Return to me

I am now 16 days into the fifth year of my life ‘since’. Since I was diagnosed with breast cancer. That dividing line drawn on that day where everything comes ‘after’. Where life changes in an instant. Except you don’t know it at the time. This time of year when the anniversaries come thick and fast – diagnosis, surgery, more surgery… decisions… second opinions…. and so on. The time of year that’s my favourite time of year; the growing light, the signs of spring, our wedding anniversary, and now it’s all messed up – with thoughts of dying.

Because four years later I didn’t know what to expect.

The words from Rumer’s song ‘Take me as I am’ come to me:

“Is there a place where all I’ve lost will be returned to me?”

And that’s what I expected really. That my life post-treatment would be about finding everything that was lost. But over the last months I am finding it’s not about loss… those things are gone, not lost – they are stolen. That’s different. It feels as though they are irretrievable.

Proverbial buses and no stage V

There’s an expression I’ve heard about being run over by a bus…. it’s a light, throw away comment that’s used when two people are saying goodbye, and one of them says, ‘See you tomorrow, unless I get run over by a bus.’ A strange expression.

I recently found myself thinking about the bus, after reading Peter Harvey’s article called ‘After the Treatment Finishes – Then What?’ I’ve read this before, last year, when I did feel I was at some sort of end of treatment, that is the major surgeries, the big treatment decisions that are all behind me. For now. But even when I re-read it, I find it reassuring, hearing again that this time for any cancer patient can be as challenging as any of the other times I’ve faced in the last four years. Because that is certainly true of my experience of the last year.

He writes about the fear cancer patients have after treatment about recurrence. He says that it’s impossible for others to understand what living with this threat is like:

The difference between those living with the threat of cancer returning and those free from it is that you have seen the bus coming and don’t know whether it will stop in time.

In her blog post ‘Over Our Heads’ Chemobabe describes this sense of living with uncertainty as life under the dangling sword. How our ‘sights have been pointed upward’ and we are forced to look at the possibility of the sword entering our lives. Because the sobering reality of breast cancer is that early stage breast cancer, stage I, even after treatment, can and does return as late stage breast cancer, or stage IV. There is no stage V. Uneasy Pink has written very clearly about the stages of cancer in her post ‘Statistics’, highlighting how staging is linked to your survival chances – which is just another way of saying how long you might stay alive for. Might.

It’s obvious from the comments to Uneasy Pink’s post that there are women out there who feel deeply connected with others, whatever stage they are at. And yet I’ve heard Stage IV women tell me that they’ve been shunned at support groups. They’re the future no-one wants to have. They’re the worst case scenario, the nightmare walking in the door. Too much pressure to hear ‘survivor’ and number of years beyond diagnosis, to give ‘hope’ to the newly diagnosed. Anna Rachnel writes about this so eloquently:

Living with metastatic breast cancer is a strange and lonely place to be.  Because now there are no real milestones, except the one that no one wants to talk about.

And, depending where you get your statistics from, 25% to 30% of women diagnosed with early stage breast cancer will develop metastatic cancer at some point. And then the survival rates become very dismal. Unless the proverbial bus doesn’t run us over first. Sobering? Very. And the fact is that cancer research is skewed towards early stage breast cancer. The Cancer Culture Chronicles recent post highlights the fact that 2% of the US cancer research funds are allocated to stage IV cancer. Despite the fact that it causes 90% of cancer deaths.

It just feels wrong, that’s all.

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.