17. Excerpt from “Being Sarah”

Following press coverage of Sarah Horton’s honest, opinionated diaries during her treatment for breast cancer in 2008, Sarah then began writing a book about her experiences. Being Sarah is a true story that brings into sharp focus society’s perception of breast cancer, the politics of the disease, and the need for prevention. Opinionated, outspoken, and life-affirming, her book is also a protest call that is angry and questioning of the pink culture surrounding breast cancer.

Being Sarah is the book that brings many of the issues about breast cancer culture and industry that I raise in Pink Ribbon Blues to life in the world of a diagnosed woman. The introduction sets the stage for the ongoing impact that pink ribbon culture will have on Sarah Horton’s experience with breast cancer. In the midst of uncertainty, fear, and a desire to make her way through the maelstrom of treatments, side effects, and medical decision-making, Sarah’s engagement with the culture of breast cancer is often an added weight more than it is a pillar of strength. Her participation in a dragon boat team 18 months after her diagnosis clarified for Sarah with utmost certainty that she would not be ‘branded’ by breast cancer.

Being Sarah by Sarah Horton is published by Wordscapes (£9.99, 272pp) and is available online at www.beingsarah.com or to order from bookshops.

From the Introduction to Being Sarah.

She’s asking me to put the pink t-shirt on. Pink, the colour of hope. ‘OK,’ I say, knowing instinctively, somehow, that I don’t really want to. ‘It’s for the photos, for the calendar, we’re all doing it,’ she says, encouragingly.

So I do. But it’s the only time. The only time I ever wear pink for breast cancer. Because I know I have to find my own way through this.

My own way of being me.

Here we pick up Sarah’s story just after here 45th birthday, 18 months after her diagnosis.

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Back in Liverpool I go dragon boating. I know now that there is a world wide movement where breast cancer ‘survivors’ take part in dragon boat teams. That it is a good thing, a sense of showing that there is life after breast cancer. On the internet I read that, ‘All over the world women who are survivors in every sense of the word are demonstrating their ‘can do’ attitude as they take part in dragon boat racing.’

But I don’t feel like a ‘survivor’, I don’t feel I want to be in a ‘special’ club, I don’t feel that I am in any way special because of the disease I happened to have had.

And I am still finding new situations extremely challenging. So, for me, even going to dragon boating is a big step.To actually go into a new group of people and make conversation is difficult. I thought I would want to be with women who have had breast cancer. But I feel I am defined by the fact I have had cancer. I do not want that.

On this Sunday the women are having their photograph taken and they include me in their boat.They have their own boat called ‘Hope’, it is black and pink. I am very new here, have only been a few times and I haven’t been able to fully express or even understand what I am feeling about the special nature of the club just for the breast cancer women. I am given a pink t-shirt to wear, they are all wearing them. I am reluctant to wear it, but I feel I should join in, after all these women have been through a similar experience to me.We share something. I change into the t-shirt. It is too small, and my one breasted-ness is very obvious. I don’t wear clothes that are this tight anymore. I am glad to put the bulky red buoyancy aid on, so it covers me.

They tell me that when we get in the boat I will be asked to take off the buoyancy aid, so that for the photograph we are all wearing pink.

‘I can’t,’ I say. I can feel minor panic. ‘Look.’ And I unzip my buoyancy aid and show my shape, my one breast and my flat side. It is so painful. I am in the wrong place. I am not ready. I should not have done this. I can’t do it. I say I will not go in the boat. But, they are friendly, they do not want me to feel left out and they suggest a solution, I can wear one of their buoyancy aids, which is black, and fits in with the colour scheme of the club, pink and black. This buoyancy aid belongs to someone else, a smaller woman, but I can just about fit into it. We paddle up and down a few times under the bridge so the photographer can take his pictures. When they are done I can change back into the bulky buoyancy aid and forget about it. I find the whole experience completely demoralising.

I reflect on this incident. I so much do not want to be defined by breast cancer, by pink t-shirts. I feel so uncomfortable about it. It’s not that I don’t support them, or that I don’t understand that there are women there who enjoy being in the exclusive club. But it’s not for me. So I give the pink t-shirt back, and leave the breast cancer ‘survivors’ club. I then join the ‘ordinary’ club where I’m not expected to wear pink, where the fact that I have had breast cancer is not why I am there. I buy a club cagoule, black with a yellow ribbon sewn down the length of the arms, and a yellow dragon emblazoned on the left chest. I wear it proudly, proud to have achieved some normality for myself, to have stepped away from breast cancer.

In the changing room I get in the shower with my one breast. I cannot hide the fact that I have had breast cancer, it is too obvious. I am glad I found this club, it is an activity I enjoy, and it challenges me, but I do not want to join in, not in that way.

I so do not want to be branded by breast cancer and wear pink t-shirts.

###

Sarah Horton is an experienced media commentator, and has spoken widely about her personal experiences of breast cancer; choice and control; the politics of the disease; and is a campaigner for more research into prevention of cancer.

In 2011 Sarah was recognized by an invitation to Her Majesty’s Garden Party at Buckingham Palace, and her book Being Sarah was Highly Commended by the British Medical Association (BMA) Medical Book Awards, calling it “well-written and intelligent.”

Sarah Horton also writes a blog where she shares her experiences of life after breast cancer treatment, the ups and downs, milestones and lingering fears, as well as joy in life, including photos and film. Sarah previously wrote an essay for Pink Ribbon Blues titled, “There Is More That Unites Us.” During October 2011 Sarah’s blog is featuring a post every day for breast cancer awareness month.

When she is not writing, Sarah is an artist, a film-maker, a knitter, a gardener and a runner. She lives in Liverpool, UK.

 

For more consciousness raising essays, check out “30 Days of Breast Cancer Awareness.”

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1 comment to 17. Excerpt from “Being Sarah”

  • Mary

    Sarah, I just finished reading your book and appreciated your honest portrayal of what BC entails treatment and emotion wise. Like you, I found I could take nothing for granted and had to “choose my poison”. After mastectomy, and much research, I elected, to the chagrin of my oncologist, to forgo all adjuvant therapy. I saved my insurance company roughly $100,000 over a five year period and have lived to tell the tale. In order to do this I had to dig out the absolute benefit of Herceptin, at the time recently touted for Her2+. The absolute benefit was 6-8% as opposed to the 54% relative relayed by my second opinion oncologist. I don’t believe she, herself, realized it was a relative benefit and we tend to think in absolutes. Who wouldn’t do it for a 54% benefit, unless perhaps one did their homework

    I used to look forward to the turning of the leaves, but now that everything seems to turn pink, instead, my enthusiasm has dwindled. We have awareness, now is the time to turn our efforts toward finding the cause and a good dose of prevention. For those affected we need kinder, gentler treatments, that leave us intact, emotionally and physically. Too much pink does an injustice to the real destruction we go through in the name of a “cure” which is not a reasonable expectation, even for those of us with early stage disease, at this juncture. Now, the best we can hope for is remission for a good long time and that will make us the “lucky” ones. I think “Pink” tends to profit the makers of “pink products” more so, than it does us.

    Thank you for writing this very honest portrayal of your experience and pink washing.

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* GAYLE IN THE MEDIA *

"Seeing clearly through the pink haze" Toronto Sun

*Sad face*: Being happy does not help you live longer" New Scientist

How should we address breast cancer when norms continually change? The Guardian

Your Fun 'No Bra Day' Photos Are Overshadowing Terminal Breast Cancer Patients Broadly

Backlash against “pinkwashing” of breast cancer awareness campaigns BMJ

Breast Cancer to Rise 50 Percent by 2030? Hey, Not So Fast! Health News Review

Breast Cancer: The Flaws in the Cause iafrica.com

How to Make the Biggest Impact With Your Breast Cancer Donations Money

The Very Pink, Very Controversial Business of Breast Cancer Awareness Racked

NFL, Pink Ribbons Not Enough to Win over Women CNN

3 Questions We Need to Answer for Breast Cancer Awareness Month Chronicle of Philanthropy

The problem with National Breast Cancer Awareness Month Women's Health Magazine

Pink Ribbon Envy: Living with an Uncool Cancer The Nib

A Year After Bombings, Some Say 'Boston Strong' Has Gone Overboard NPR, All Things Considered

Canadian Mammogram Study KCRW, NPR Affiliate

Time to Debunk the Mammography Myth CNN

Breast Cancer: Awareness, Activism & Pinkwashing NPR Charlotte

Buying Pink Al Jazeera's The Stream Watch »

The Pink Backlash Orlando Sentinel

Why Jolie's Test Costs So Much CNN

Preventative Mastectomies: Disease and Deception BlogTalkRadio

Angelina Jolie and the 'Breast Cancer Gene' KCRW

Our Feel-Good War on Breast Cancer The New York Times Magazine.

The Story Behind the Pink Ribbon Campaign Sisters Talk Radio

WISH Interview Women's International Summit for Health

Making Cancer About The Patient, Not The Body Part CBS Pittsburgh

Sexy breast cancer campaigns anger many patients USA Today

The perils of pink The Daily

Komen pink campaign creates breast-cancer blues for some Dallas Morning News

A yellow flag for the NFL's pink New York Daily

Gayle Sulik named #7 in SharecareNow’s Top 10 Online Influencers in Breast Cancer

Breast cancer cancer causes so easily derailed Philly Inquirer

Komen Charity Under Microscope for Funding, Science Reuters

The Fight Against Cancer - And Abortion? Salon.com

Susan G. Komen For the Cure defunds Planned Parenthood. In Deep with Angie Coiro

Amid Breast Cancer Month, Is there Pink Fatigue? NPR's All Things Considered

How is Breast Cancer Culture Undermining Women's Health? America’s Radio News Network

Pink Ribbon Culture and Breast Cancer The Kojo Nnamdi Show

The Big Business of Breast Cancer
Marie Claire

Does Breast Cancer Awareness Month Crowd Out Other Diseases? Slate

Pink Inc. Has Many Starting to See Red The Sacramento Bee

Get Your Pink Off Ottawa Citizen

Komen Pink Ribbons Raise Green and Questions USA Today

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