There Is More That Unites Us

Sarah Horton, author of Being Sarah, a true story about choice, control and breast cancer, is today’s Pink Ribbon Blues contributor.

Photo Credit: Karen Choudhary

I was diagnosed with breast cancer in February 2007. Nearly four years ago. And four years of breast cancer treatment is a lot of hospitals, doctors, and blood tests. A lot. And during the hours and hours of my life that I sit in hospital waiting rooms, I often look round the room and observe the other patients. I see their worried faces; their anxiety; their supportive, concerned partners or friends who are, in my experience, more often women, sometimes men; their relief, sometimes, when they come out of their consultations; at other times their crumpled faces after receiving bad news; that look of tears being held back.

I know what all of this feels like, this world none of us wanted to enter. This helpless, sad place where our emotions are thrown into the air and then come crashing down with a thud. The life and death question always hanging around.

And as I look round the room I feel a deep sense of connection with all these people, the women, their sisters, their friends, their partners. They all share something. We all share something. We’ve been in the same places – the physical places, the diagnosis clinics with biopsies, needles, yards of clear plastic tubing, cotton gowns, dressings, bandages and tape. The theatres – that is, the operating theatres. The eternal waiting rooms. We’ve been in the same emotional places too. When we are in treatment we are definitely in it ‘together’, at least that’s how it feels to me.

And I feel like I could go around the room and hug them, all of them. We’ve been through so much, and we share so much. Yet, I rarely talk to other patients and their friends in the waiting rooms. We sort of suffer alone, mostly in silence, or depending on the hospital clinic we’re in, listening to some daytime television or radio drivel away in the corner as if someone in the hospital thought it would calm us down. Or is it just a way to cover up this emotional silence?

And, if you’re lucky, like I am at the moment, then the periods between the waiting room scenarios become longer. You realise that a whole month has gone by and you didn’t see a doctor, didn’t have a medical appointment, didn’t go for a blood test. If you’re lucky.

On the day I was diagnosed the surgeon who took my core biopsy held up the specimen jar and said, “We’re going to do all the tests we can on this, and you’ll be getting to see a lot of us over the next ten years.” What? I thought at the time. Ten years? They can’t really mean that, can they? Then it started to sink in. It dawned on me that I was dealing with something deadly serious. Breast cancer.

In the world outside the clinics there are thousands of women like me, and their friends and supporters, who really would rather not spend so much of their lives in waiting rooms, so much time being treated for breast cancer. And what do they do? They do good things. They try to make sense of their lives, and the lives of the people who love them, changed forever by breast cancer. They set up support groups. They provide help and support to their ‘sisters’ through forums and the Internet. They organise conferences. They raise money for charities. This work is often done within the framework of a pink ribbon culture that is easy to fit into, to identify with. The message is that ‘we’re all in this together.’ And amongst all this support is the never-ending search for the cure. There’s nothing wrong with that is there?

Well, no. But the sad fact remains that my chances of dying of this disease aren’t really that much different than 50 years ago, despite all the hard work, the running, the raising money that’s been done in the name of breast cancer. In the name of ‘the cure’. The cure that’s always just one breakthrough away but has never arrived. In my experience, there seems to be a general belief that breast cancer patients usually get the ‘all clear’. But the ‘all clear’ doesn’t exist. That’s not the nature of breast cancer. It can and does recur. We treat breast cancer, but we can’t cure it. Not yet. The cure doesn’t exist. Those of us diagnosed with breast cancer, live forever with the possibility that breast cancer may kill us.

We need our friends and supporters, we need our support frameworks, we need places where we can be with each other, where we can explore the ‘life after a cancer diagnosis’, as survivors, or warriors, or patients, whatever we choose to call ourselves. But, particularly with breast cancer, have we been diverted into running ‘for the cure’, looking fabulous ‘for the cure’, being pink ‘for the cure’? It seems we’d do anything ‘for the cure’. That cure we’ve been promised for decades.

Without a cure at hand, what is more logical than focusing more of our energy on prevention? Running ‘for prevention’, looking ‘for prevention’, campaigning ‘for prevention’. And by prevention I mean addressing environmental links to cancer and asking difficult questions of the industries that may be harming our health, while researching the cocktail of chemicals we’re exposed to every day of our lives. We often hear how ‘early detection saves lives’, but early detection means looking for, and finding – if we’re lucky – a disease that already exists. I’d be much happier if the disease wasn’t there to find.

Pink culture seems to have divided people based on their level of comfort with pink. Some of us don’t like the pink, some of us passionately embrace it. Pink’s not for me. But still – I believe there is more that unites us than a colour. There is more that unites us than divides us. I see it all the time in those hospital waiting rooms. The places I never wanted to be.

So why don’t we channel our energy, knowledge, passion, and science toward prevention? So that your granddaughters, your sisters, your unborn daughters, and all the women who come after me…. so they don’t get breast cancer. So they don’t have to go to all the places – physical and emotional – that we have been. Let us do this in a spirit of solidarity. United States’ President Obama said after the Arizona shootings,

“We are full of decency and goodness, and the forces that divide us are not as strong as those that unite us.”

Breast cancer, or any cancer diagnosis, does not define us. We find different ways to express our feelings, to come together, to support each other. We are all finding our way to deal with this killer disease. Let us rejoice in these differences, and let us unite to stop breast cancer before it starts.

Brief Biography:

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 experience. Opinionated, outspoken and life-affirming, Being Sarah is also a protest call, angry, and questioning of the pink culture around breast cancer. Sarah 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. She 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. When she is not writing, Sarah is an artist, a film-maker, a knitter, a gardener and a runner. She lives in Liverpool, UK.

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.

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6 comments to There Is More That Unites Us

  • Well said, Sarah. And you are so right. Without the support and friendship of the other members of this club we never wanted to join, I would not be sane; I would not have been as able to turn myself around time after time, and point myself back to myself, to endure this lifelong “identity crisis” and somehow manage to keep convincing myself that I am more than a diagnosis. However we do that, together and as individuals, ultimately, it has little to do with a color or a fundraising phrase. We need to keep our eyes on the prize, which is a cure for this ubiquitous stalker.

  • Gail

    Sarah, I truly appreciated your book. Your determination, your courage, your honesty, your frustrations, your foresight in seeking out relaxation places to visit and regroup your thoughts feeling and exercise between your sessions of chemo, surgeries etc. I have experienced the nursing side of being with patients with cancer and have experienced watching my husband struggle with his illness. You have opened my eyes to so many new avenues. I pray that I took enough time with my patients giving them empathy and being a good listener and comforter.

    I wish that everyone with any cancer, and their families, could read your book. You have done many a great service, and it had to be very difficult reliving all of those experiences.

  • Thank you Kathi and glad to have you in my new friends.
    And Gail – wow! thank you so much for your comments. And I am SO glad that the book has opened your eyes. Just what every author wants to hear!

  • You’re so right Sarah when you say that nothing has really changed in the last fifty years with respect to breast cancer mortality. Yet what has changed, is breast cancer incidence. It keeps increasing and is forecast to keep increasing, according to a recent study by the National Cancer Institute (http://jnci.oxfordjournals.org/content/early/2011/01/12/jnci.djq495.full). Only by presenting a united front in pressing for change in both government policy and research funding and focus, do we stand any chance of reversing this trend. Thank you for being someone who is prepared to stand up and voice what we know in our hearts. That something is wrong; very, very wrong with the pink view of the breast cancer world. It’s time to get real.

  • You’re so right Sarah : now it’s time to assemble all our forces.
    Your book and Gayle’s book will be my firsts in English! they are the beginning of the way to really end the breastcancer, your ideas are the good ones: they simply begin with the beginning (prevention and knowledge) and not with the ending. Beginning is the best way to be sure to go to the end: real cure!!
    Thx a lot, dears Sarah a Gayle!

  • debbie

    Sarah,
    I love this post. It has been my mission lately to try to show compassion to all people. I am really trying to help my teen daughter understand the concept as she deals with social issues in school. I think compassion goes hand-in-hand with the perspective that there is more that unites us than divides us. You can be passionate about something and still show compassion. Thanks for sharing your experiences with us.
    Deb

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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

** MORE MEDIA LINKS **
** MORE RADIO INTERVIEWS **