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

Immediacy

South Stack lighthouse, Holy Island

In conversation with our accountant last week I said, ‘Never mind the VAT, what about the puffins?’

She’d told me in an email that she had recently been on a sailing holiday around the Hebridean Isle of Mull, and shared a picnic with puffins. The puffins had just arrived back on land from sea, ready to start breeding, and were cleaning up their nesting sites. I was enchanted with this image. A picnic with puffins. It also reminded me that puffins visit a nesting site on Anglesey, much nearer Liverpool than Mull. The Atlantic Puffin spends most of its time out at sea, but comes back to land to breed between April and July. Meaning May is one of the best times to see them.

Puffins are small seabirds in the family of auks. All have small wings and on land are fairly clumsy, as they are designed for fishing and swimming underwater. They are characterised by their colourful stripey beaks, only like this in the breeding season, and bright orange feet. I’ve never seen one because, although they do come to the UK, they choose remote inaccessible places to breed, out of the way of predators like mammals. Now I am reminded and I want to see one.

So, I say to Ronnie, ‘Shall we go and see the puffins?’ And he knows that I mean tomorrow or the next day. There’s a sense of immediacy that happens after a cancer diagnosis. If it’s happening now, then I want to see it. Now. So we do. 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?



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.



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.