“But Doctor…I Hate Pink!”

I didn’t say that! But Doctor…I Hate Pink is the the title of a breast cancer blog by Ann, a self-proclaimed breast cancer ass-kicker from Sacramento, CA. I like Ann’s blog because she’s a straight talker. Something we desperately need when it comes to breast cancer. Diagnosed in 2009 with stage II infiltrating ductal carcinoma, Ann walks readers through her diagnosis (which started by finding her own lump and diagnosing her cancer on google), her treatment, the one year anniversary of her diagnosis, and the insights, experiences, and questions that stood out to her along the way.

For instance, it didn’t take Ann very long to learn the rules of cancer survivorship. Within just a few weeks of her diagnosis, Ann already knew the story line she was supposed to enact as a cancer survivor. Aptly named, Clichés, Ann writes:

“After my LONG AND COURAGEOUS BATTLE with breast cancer, I will have to deal with the NEW NORMAL.  The fact that people are LIFTING ME IN PRAYER should help me become a SURVIVOR.  I will then LIVE LIFE TO THE FULLEST, knowing that EVERY DAY IS PRECIOUS…Honestly, I think I need a staycation.”

Yes, that story is overused. And, while cancer – and other major life-changing events- can lead people to develop new ways of getting by and getting on with life that may contribute to their personal fulfillment and a fundamental appreciation of life, the story line is so common in pink ribbon culture (and cancer culture in general) that it has lost much of its meaning. Not only that, the mandate for triumphant survivorship can be an added burden for people who are dealing with new physical, emotional, practical, and existential issues related to cancer.

In PLEASE READ!, Ann reiterates that there is a “right way” and a “wrong way” to “do cancer.” In fact, the “cancer police” as she calls them are readily available to give warnings to anyone who makes mistakes. Apparently, Ann has made her share of mistakes, though I don’t think there is a warrant out for her arrest (not yet anyway!) Based on her interactions with the cancer police, Ann remarks that there are a variety of techniques they use to keep the diagnosed in line. She has received emails, strange gifts, and advice from lots of well-meaning people about what is right and appropriate to think, feel, say, and do as a cancer patient/survivor. Everyone seems to have an opinion about your cancer and what you ought to do about it.

I’ve heard similar stories in my own research…how others enforce the cancer rules with inquisitive questions, helpful suggestions, illustrative examples, personal stories, official health and medical information, nonverbal cues, and often, with gifts. One woman I remember fondly received a very expensive wig from her hair stylist, but she had already decided that she didn’t want to wear a wig. She was clear on that. She told me that wigs were itchy, uncomfortable, and feel foreign, and that a head scarf was more her style. Since the wig was so expensive, she didn’t want to just throw it away, so she returned it to her hair stylist and told her it just “wasn’t her thing.” The stylist was offended, and she felt terrible.

In addition to keeping the diagnosed in line through overt and subtle forms of policing, cancer culture has its own specific language. As in any culture, using language the right way shows that you are a valid member, a cultural insider. A year after her diagnosis,  Ann posts A Letter to the Diagnosed On My One Year Cancerversary, in which she shares what she has learned about breast cancer, including the specialized vernacular. She writes:

“The first thing you need to learn about a diagnosis of breast cancer is that you have to learn stupid terminology such as ‘cancerversary.’…Instead of recovering, you are a Survivor.  You don’t heal,  you have a “New Normal.”  You have foobs and fipples, have rads and get chemo curl…Discussing your fipples with your mailman is only going to lead to confusion.”

People don’t learn the language or the rules until they become part of cancer culture. There is a book called Breast Cancer for Dummies that contains basic information about diagnoses, prognoses, what to expect from treatment, and some aspects of life after treatment. But, even this book says nothing about foobs or fipples! You need to talk to other diagnosed people to learn that. You need to talk to Ann! And as she suggests, sometimes the rules and terminologies are innocuous, and other times they can be oppressive, like the overused story lines of transcendence.

Ann’s blog also has practical information such as what to buy for a mastectomy patient, chemo survival tips, and even a video of what her looked like as it was falling out on day 19 of chemo.

As you might guess, Ann also has some thoughts about pink. The post called Breast Cancer Awareness Month captures it:

“I thought pink cans of soup were stupid before I got breast cancer, and I still think they are.  But, I don’t care enough to rant about it. Instead, in honor of our special month, I will leave you with this poster somebody emailed me:

Happy Breast Cancer Awareness month.  You can send your gifts to my house. I like Progresso.”

Thank you for sharing Ann, and keep on blogging!

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7 comments to “But Doctor…I Hate Pink!”

  • Jessica

    Enjoyable article. I hope more cancer survivors will share their stories.

  • JJ

    Thank-you, Gayle, and Ann for honesty. I am an oncology social worker, and now, a breast cancer survivor. For work reasons, we are active in many breast cancer events and I always thought we were being so noble. Now, I feel like a reluctant poster child of my clinic. In some ways, patients will open up to me, whereas they wouldn’t before, but I also go to GREAT lengths to explain that every woman’s experience is unique to them. Like Ann, I don’t feel heroic, and even though my cancer was fast and furious, so was my treatment. In less than a year I’m cancer-free – most women are these days. In my 3 years in this job, only one woman actually died of her disease because she waited so long to seek treatment (a sad true case of denial). But worse, now I will always be the “resident survivor” and I hate pink October and the language that goes with it, too.

  • Maggie H

    I am a 4-year survivor and there are some things that I wholeheartedly agree with and there are some things that I am semi-offended by in this spotlight of “But, Doctor…I Hate Pink” blogger. The “club” isn’t something any of us ask to become a part of but just because some of us choose to embrace it, doesn’t mean we follow rules. Each woman’s breast cancer journey is completely unique. But there are some of us that find comfort and solace in having breast cancer friends that can identify with some of our feelings and with some of the common occurrences that come about during the journey. We use jargon and some fun and made-up words to describe some of the nuances. I personally have never heard of foobs or fipples…and if I choose not to use certain breast cancer jargon, I can’t imagine any of my breast cancer friends would care one bit. Who are these cancer police? I am affiliated with many breast cancer organizations and have met hundreds of breast cancer survivors. Not one of them has ever chastised someone for not embracing verbiage or for referring to themselves as recovering from breast cancer rather than referring to themselves as a survivor. I hate the phrase “new normal” and have had many conversations with others about it. Sure, you will hear most saying things like, “If you stay positive, you will be able to beat this” or “Thinking about death isn’t going to get you anywhere good, so try to stay busy and don’t read statistics.” There are so many well-intentioned people out there and most of them have no clue about how you are feeling or what they can do to help someone with cancer. A lot of people say some really dumbass things. Before I had breast cancer, I had no idea what to say to someone that just heard the words “You have cancer.” It’s just like going to a funeral and saying “He’s in a better place” or “At least he’s not in anymore pain.” Maybe the person who is grieving just wants to be sad and doesn’t want to hear that their loved one is in a better place because for them, the best place for them to be is here.
    I became somewhat of a poster child for positivity and strength after I was diagnosed. I had my son and 13 days later I was told I had cancer. I was devastated and sad and just couldn’t imagine how I was going to get through all of it with a newborn. I have always been an upbeat person but faced with a potentially deadly disease, I had no idea how to navigate my life. I had no idea how to make this into a good thing. But, somehow, in the last 4 years since my diagnosis I have found the “silver lining” in it all. How is learning or hearing the word “cancerversary” stupid? I sent out an email to a bunch of my girlfriends inviting them to join me at dinner to celebrate my cancerversary. I didn’t find the evening stupid at all. Actually it was quite the opposite. We all celebrated life and we didn’t even talk about cancer at all. We got together to celebrate the fact that this disease that gave me a 35% chance of living for 5 years, has not taken me out. I am not saying that anyone needs to celebrate on the anniversary of their diagnosis but why is it stupid if I choose to do so?
    I don’t feel heroic either but I can tell you that I think I have a made a positive difference in many women’s lives because I have spoken to them honestly but also positively about my experience. I am no Polly Anna but I have been told that even though my prognosis was grim, I have a way of showing women that the experience doesn’t have to be a big black hole. Cancer sucks! Chemo sucks! Having both of your breasts removed sucks! My reconstructed breasts, or as I refer to them, the Frankenstein breasts, suck! Having long-lasting or possibly permanent chemo brain and ADD because of treatment, sucks! But, I have come to a grand enlightenment of sorts that I never would have come to if it weren’t for breast cancer. Why isn’t okay for me to live life to the fullest post-cancer? No one is saying that you have to do this but if the alternative is not taking anything away from the cancer experience that is good, what will one do? If I have to go through all of the stuff that sucks in order to see my son grow up, then that is what I am going to do.
    I agree that some of the pink is a little much. But, I am grateful that as women we are able to raise money for research. And I do believe that there will be a cure in my lifetime. Breast cancer isn’t a one size fits all but a cure still can be found for each of us…And if that is too positive then I guess that is what I am.

  • Gayle – As a matter of fact I found Ann’s blog after finding yours and I also really like Ann’s viewpoint. Very much like my own but so much better articulated and developed to be sure.

    I started my own blog because I just found it increasingly difficult to express to people around me the frustration that I felt at being part of a cancer culture that I just didn’t identify with. Hence The Cancer Culture Chronicles was born. Partly as therapy for me in dealing with these frustrations, as well as a way to deliver the messages and lessons I have found to be important in my own experience without having to deal with people looking at me like I had two heads and dealing with the uncomfortable silences that invariably followed when I tried to engage in conversations about it. The prevailing cancer culture most certainly deems what I (and others like Ann) have to say to be counter-cultural and is quite shocking to the average person. One of the first entries I wrote in my blog was inspired by an article written by Barbara Ehrenreich called “Welcome to Cancerland” and it really resonated with me. (There is a link to it on my page for interested readers: http://cancerculturenow.blogspot.com/search/label/Barbara%20Ehrenreich)

    Having been first diagnosed at a relatively young age (33), and now dealing with metastatic breast cancer at age 40, I have long struggled to find people (including healthcare professionals) who “get” me, for lack of a better word, which can be very isolating and alienating. It’s been a boon to find others who think like me on sites such as this. Thank you for your good works in this important area.

  • Thanks for writing. I hope I did not imply in any way that this is a club people sign up for. Certainly not. And, there are different aspects to the culture as you point out. The book goes into detail about these varied aspects of the cancer experience. There is no one size fits all way to get on with life after breast cancer, but there are patterns of similarity and patterns of difference among groups of people. I want to highlight some of the aspects to getting on with life that are often omitted from the cancer story. I also recognize that putting on a positive attitude for others and feeling positive for oneself are two very different things. I’m glad you feel positive. Be who you are!!

  • I just ordered your book, Pink Ribbon Blues, and started reading it last night. Can’t put it down, it’s so well written and a real game changer. I had to smile when I saw on the first page, the discussion of Barbara Ehrenreich’s article, Welcome to Cancerland. It really is a brilliant article and, in the context of the history of the pink ribbon movement, quite before it’s time I should think. It’s all just inspiring me to more meaningul action. Thanks for telling it like it is.

  • I remember the first time I read Ehrenreich’s article. It blew me away. Meaningful action is what I hope will result from this book. Thanks for writing!

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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 **