Rachel of The Cancer Culture Chronicles died early this morning following a long struggle with metastatic breast cancer. Although I find it difficult to write or even see through blurry tear-filled eyes, I need to share this with you today.
I first met Rachel in the blogosphere after Pink Ribbon Blues was released in October 2010. At the time, she used the pen name Anna Rachnel. At first I didn’t know this was a pen name, but I later learned that keeping her identity to herself was a way to speak freely and hold on to a core part of herself. As Anna, she could be and say anything without risk. She was in good company. Some great women writers use neutral pen names or initials to mask their identities or publish in a new arena. Anna Rachnel did the same until her eventual “reveal” in July 2011 following an ordeal in the hospital that compelled her to claim her real name and share it with her audience.
Rachel, then Anna, shared a blog post with me that she had written about what she saw as a truly bizarre phenomenon, breast cancer avatars on Second Life. In this virtual environment, one can have virtual breast cancer, wear pink t-shirts, attend pink ribbon fund raising events, and even go to a support group. Anna/Rachel wanted to know what a medical sociologist like me would think about such a thing. I thought it was as bizarre as she did.
I asked Anna/Rachel if I could republish her essay on the Pink Ribbon Blues Blog. Her enthusiastic “yes” was the beginning of a productive collaboration that involved multiple projects, essays, and cross-postings about pink ribbon culture and industry. It was also the beginning of a friendship that included learning her real name.
Rachel Cheetham Moro.
For awhile I still called her Anna sometimes, but she didn’t seem to mind.
I could write a lot about what I learned from Rachel and how close we became in a relatively short time. But not today. Today is too devastating. For now, I just want to share with you Rachel’s words.
In addition to the insightful and compelling essays you’ll find on her blog, Rachel (re)published several essays on Pink Ribbon Blues.
- Komen By The Numbers January 26, 2011
- Komen By The Numbers: The Context of Research January 31, 2011
- Komen By The Numbers: Education In Focus February 9, 2011
- Komen By The Numbers: 2010 And Still No Answers March 19, 2011
- Factoids, Impressions, and Impressions (or, Take “Action” Against Breast Cancer: Buy Stuff & Support Our Sponsors!) October 5, 2011
Notably, these essays utilized Rachel’s training as a highly skilled accountant to open our eyes to some important considerations of Susan G. Komen for the Cure’s audited financial materials. As the Komen organization continues to be exposed after last week’s funding decisions and public relations nightmare, Rachel’s analysis will continue to be important as we learn more about the inner workings of this organization.
In addition to her essays Rachel was committed to moving the breast cancer conversation forward throughout the blogosphere. Her commentary on the Pink Ribbon Blues Blog alone inspired me and many others to keep thinking, probing, and writing. As I re-read Rachel’s extensive comments below, I see how prolific she was, and I wonder: What will I do without Rachel’s continued insight, commitment, and thought-provoking commentary? I just don’t know.
I will, however, continue to demand better for people like Rachel and to stir the hornets nest of pink ribbon culture and industry even as my heart aches for the loss of my dear friend.
Comments by Rachel Cheetham Moro
You really summarize how sexualized our culture has become. And it has become so extreme that we have even founds ways to sexualize breast cancer. A cruel and unrelenting disease. We have created a pink sexualized monster that continues to hide from view the suffering that this disease brings with it. When are we, as a society, going to get real and demand better? What Lies Beneath by Lisa Valentine January 12, 2010
I think one of the most egregious uses of statistics is the “5 yr 98%” statistic that is often quoted by Komen for very early stage breast cancer (whatever that means). In fact, I think it’s this statistic that people have in mind when they think breast cancer is curable, or that breast cancer is the good kind of cancer. Way to distract from the very real issues that still dog the breast cancer movement and progress in eradicating this disease. “Survival” and “Cure” are NOT Interchangeable Words by AnneMarie Ciccarella October 25, 2011
This is an important project. It’s an issue that is hotly debated in the breast cancer blogosphere, with even those who’ve had breast cancer maintaining the position, that any awareness is good awareness, even if it is overtly sexualized. I, however, take the contrary view, and agree with both of you, that the message and indeed the realities of breast cancer are lost in these campaigns. I’ll be very interested to read the results of this project, but sadly, I think I already know. Advertising WHAT??? By Nizarys Vargas and Sarah Roman October 19, 2011
I suppose we can never really know how Heather felt about all of these events. But I certainly agree with the point that you make about how “pink” has become synonymous with good cheer, celebration, and lots of razzle dazzle, with no real thought about the realities of what it is to live with metastatic disease. The treatments are grueling and relentless, and sadly often patients continue to seek treatment right to the very end and suffer greatly. Some do it under pressure from families, and others, well who knows? But I can’t help think that the image of the “fighting warrior survivor” that the pink culture has bought us, might have something to do with some patients (and families) being unwilling to say enough is enough. Loss and Remembering: A Story of Heather Beyer by Bill Noren October 17, 2011
This “conversation with despair” is necessary despite it being hard for many to hear. My response to those who don’t want listen, is this. Try hearing the words “you have cancer”. That’s harder. I can’t wait for this film. The Cancer Show: A Cast of Thousands October 15, 2011
My own personal experience has shown that the medical professionals are exceedingly reticent to assign any blame to treatment. In fact if I hear the words ” well tolerated” when used to describe a new chemo or other medication, I think I might just scream. Do we think this reticence to talk about treatment morbidity may be in part due to medical malpractice insurance??? “After the Cure” October 12, 2011
I’d say quite a few of the charitable organizations who call themselves breast cancer advocates would do well to read this. Look at the evidence, evolve the message. Critical Health Literacy and Evidence-Based Practice October 7, 2011
And as we know now, Brinker’s release of the Promise Me memoir was even more strategic than simply telling the emotional story of how Komen came to be. It’s also selling a load of pinkwashed perfume of the same name, with more lines to follow I’m sure under the Komen Beauty brand owned by TPR Holdings. Mmm somehow the innocence and melodrama of it all is now completely lost on me. What a difference a year makes. The Inspirational Vs. The Actual October 2, 2011
The picture of the woman in the advertisement, this perfume, Nancy Brinker’s relentless push to pinkurate the marketplace and drown out competition, and indeed dissension, are all painful metaphors for what is wrong with the breast cancer movement today. The real needs of the breast cancer community have become subjugated to the longevity and marketing needs of Breast Cancer ™, the brand. The backlash is coming. Hold Your Noses: Pink Has A Smell June 20, 2011
Komen’s proud of people surviving breast cancer? That’s nice, but what about the 41,000 per year who don’t – almost equal o the number of participants in this race which seems sadly ironic. Are they proud of their efforts in stemming the mortality, or just proud about how much money they’ve raised? I’m most proud of people like CJ, like the Komen Bandit, like you Gayle and so many others, who are willing to stand up and say that Komen’s pink spectacle and largesse are just simply not good enough. It’s time Komen put their money, resources and efforts towards activities that could actually make a difference to the breast cancer mortality statistics, numbers that right now are nothing to be proud of. Enter the Komen Bandits June 4, 2011
What an incredible woman CJ is. And this line here make the point so well about how mets is generally perceived:….”When BC Mets does get public attention it shines a light on the good, strong, positive, and hopeful side of metastatic cancer or to the obituary of someone who fought courageously but eventually succumbed to the disease.” It’s my impression, there is nothing in the information that the public is fed, and indeed to the people that are living with mets, that tells the real story as to what they can really expect. Yes some people do very well on existing treatments, although never “cured”, and yet others do not and succumb very quickly. But what about the reality of how their final years, hours, months and days are lived out? Many would be absolutely shocked and horrified at the indignities, pain and insidiousness of how metastatic disease can play out. I only know what I know having read some blogs of some very brave women who chose to document in some detail their ordeal. Lisa Rendell, a Canadian radio personality and research mega fundraiser who passed away earlier this year was one such woman. This is her last post. (http://www.lisarendall.com/yet-another-complication-hospital-stay/) . What is there to say really, except she was clearly a woman interested in telling it like it is, as uncomfortable as that may be for society. Truth. That’s what we need so badly. Thank you CJ and PRB for continuing to tell the truth. Dian Corneliussen-James: A Woman On A Mission May 28, 2011
You have captured perfectly the frustrations that many of us are feeling. But we struggle to be heard and are told to “lighten up” or “get over it” when we try to discuss the issue and present an opposing viewpoint. As I keep wondering, where will we be when the public grows weary of the boobie fad? Certainly no further to eradication or a cure I’d wager. But plenty more will have reaped their dividends and simply gone home to think about the next big opportunity. Thanks for being the ” interventionist” in this case. Boobies, for Fun & Profit! April 25, 2011
After reading this post and all the others, how can there be any argument that what is going on is completely misguided and inappropriate on so many levels? Let’s stop this insanity now. “Boobies.” I said it. Now, may I have Your Attention Please? April 1, 2011
We have become a society of lazy philanthropists and “slacktivists”. We throw money at a cause and sit back and think we’ve done our bit. If you’re not directly affected by the very cause you purport to support, then where’s the motivation to ask the deeper probing questions? To really consider whether an organization is fulfilling its mission and doing right by its donors and society as a whole? Not much. And that’s just the way the corporations like it. The perfect marriage of altruistic appearances, effective and cheap advertising, and profits, profits, profits. Activism-[Sl]activism: An Essay by Erika Jahn March 25, 2011
We’re aware; NOW WHAT? None of these awareness campaigns take any responsibility for what happens to the women who do happen to get diagnosed as a result of their “awareness”. I found my cancer through BSE, probably because I was aware of something; my body, changes in my breast tissue, the idea of breast cancer etc. But that fact alone is not going to save my life, despite many of these campaign’s assertions that “awareness saves lives”. Why? Because I now have metastatic cancer so when I think about BSE being used as the cornerstone of some of these awareness campaigns, all I can think is BFD! There’s so much more to breast cancer than “awareness”. If only as much emphasis and MONEY was paid to breast cancer RESEARCH. Maybe then we could actually scientifically prove or disprove some of the so-called facts/risk factors that so many of these campaigns rely on in spreading their bogus messages. Maybe we would get better screening methods. Better treatments etc Maybe then we’d have no need to be “aware” of breast cancer because research really could make breast cancer a thing of the past. Another great post Gayle, and such a neat summary of why anymore “awareness” cannot be a good thing. What Good is Awareness if… March 22, 2011
The numbers really continue to astound me. And I agree with your comment on my blog, that some of the research that Komen continues to fund in is, indeed, worthy. But how can they continue to justify allocating almost double the amount to education as a priority over research? $146M to education in one year???? And why does the research allocation % appear to be on a downward trend? If only Charity Navigator could answer some of these questions in their evaluation system. An independent arbiter is certainly needed in this case because we have so little to compare to. In essence, Komen can spend whatever they like on anything, and we the public, have no tangible way of evaluating the reasonableness of their fiscal decisions, except what we can deduce from their published financial reports. And if you don’t have a business analytic background, good luck with that! Rest assured, until I see more transparency and accountability from this organization as to how they are justifying their position on Research funding, in light of their stated mission to “end breast cancer forever”, I will continue to ask deeper questions. As everybody should be doing. Komen By The Numbers: 2010 And Still No Answers March 19, 2011
We can publish all the breast cancer survival statistics in the world and wax lyrical about the benefits of early detection and breast cancer awareness, yada, yada, yada, but it’s all meaningless if we don’t have the scientific understanding of what causes metastases in the first place. It cannot be stressed too strongly, that metastases can occur at any point in time, regardless of stage at original diagnosis. And there is no way of telling whether a person will metastasize or not. If we could solve the issue of metastases we could get a long way in to significantly reducing cancer mortality rates, and yet metastatic cancer continues to be (im)probably the least funded area for breast cancer research. Indeed, breast cancer metastases receives a subset of less than 2% of all cancer research funding by some estimates. Disgraceful and disheartening to say the least. Medical Progress and Stage 4 Breast Cancer: Re-Learning the Lessons of Elizabeth Edwards’ Death March 14, 2011.
Unfortunately the relentless assault by “pink” on the minds and wallets of consumers, has lulled the masses into a false sense of security. That they are doing good. That the money is helping. That we are winning the war on cancer. That there’s no need to ask deeper questions or demand real transparency or accoutability. Wrong on all counts. I should know. I have Stage IV breast cancer and I really don’t know what, and if, I can pin my hopes on anything coming out of the current breast cancer realm. Indeed it is time to get real. It’s Time To Get Real January 3, 2011
I applaud NBCC’s efforts in articulating this mission. I also applaud them for being able to openly admit that what we’ve been doing in the past, and continue to do, isn’t working. In fact NBCC’s website categorically states that we have FAILED in the current strategy to end breast cancer. A new paradigm is required, and this 2020 mission is it. Imagine if Komen were to put their marketing muscle and financial resources behind NBCC’s mission? Could we imagine this? And if we can’t, why not? The Dream of Eradication February 10, 2011
I’m glad the men enjoyed meeting women at the pink party. Too bad some of them are statistically slated to die of breast cancer with no hope for a cure in sight. Pink parties and 25% or less to research just isn’t going to cut it. As the pinkifications get bigger and more grandiose, so does the disconnect between Komen and the very people it’s meant to be helping. Komen’s Leadership In Question February 2, 2011
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. 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. There is More That Unites Us by Sarah Horton January 21, 2011
I’m offended that the Komen organization has insinuated that our legitimate questions and concerns about their practices may be construed as being distracting and misleading to their supporters. As someone who is dealing with metastatic breast cancer, I most certainly have a vested interest in ensuring that Komen fulfills its stated mission of ending breast cancer. However I personally cannot sit back and trust that everybody involved in the breast cancer “industry”, to which Komen is a significant stakeholder, have my best interests at heart, when an organization’s actions speak otherwise. Until my disease is “cured” in the sense that the general public understands the word “cure” to mean, I maintain my right to demand accountability and transparency from the nation’s largest breast cancer fundraiser. This is not meant to be distracting, nor is it intended to detract from the good works that are currently ongoing. It should simply be read as a demand for action and a signal that more needs to be done. If the National Breast Cancer Coalition is saying “It’s time to move beyond awareness to action, and it’s time to peel back the pink to see what’s really happening in breast cancer research, treatment, prevention and cure”, then why is it so difficult for Komen to critically reevaluate its priorities and change course, so that the public can rest assured that it’s hard-earned dollars really are working “for the cure”. The question should not be who is legally entitled to use the words “for the cure”, but where is the cure? Susan G. Komen for the Cure Sells Out the Pink to Get the Green January 14, 2011
Rather than presenting itself as the poor pink Goliath, perhaps Komen could better use it’s huge arsenal of “slingshots” to really be the “David” to the ” Breast Cancer Goliath.” The bloggers are just sick of being sick and just want answers to legitimate and reasonable questions. We are still waiting, and until we get answers, we are going to keep asking questions. Poor Pink Goliath January 7, 2011
When I first started my blog in 2009, I really had no idea just how important it would become in helping me deal with this disease. What has surprised me even more is just how many people are interested in what I have to say. Indeed, the writing does send out tentacles that demand to be heard and invariably evoke a response and hopefully a call to action of some kind. We must keep writing to keep being heard. It is imperative. “the terrible stories” December 21, 2010
Aside from these lawsuits being morally reprehensible on so many levels, Komen’s push to be seen as the last word on “For The Cure” in the breast cancer realm seems a tad deceptive. How do more breast cancer “education” and “awareness” campaigns result in a cure? And early detection and screening programs…also no guarantee of a cure for anybody diagnosed as a result. Just how much of Komen’s fundraising is directed to research that could be classified as “For The Cure”? According to the WEGO Health post mentioned in your essay, it may be as low as 17% in 2009. Is anyone thinking of suing Komen for misleading advertising?… Every dollar, every minute, and every resource that Komen wastes in protecting their “brand” with these lawsuits, is another dollar, minute and resource that is not being used to help women reclaim their lives from this insidious disease. Please address directly the issues raised in this and other essays, and restore the public’s faith that the Komen organization really is in this “for the cure”. The Battle “For the cure” – The Phrase, That Is December 21, 2010
It’s completely exhausting trying to always be the positive and upbeat heroic “survivor”. I really think this concept of the “she-roic survivor” was invented just to make everybody else feel better. There is a dark side to this disease, and it’s not something that anyone likes to admit or talk about openly. Why? Because we’re brave and strong survivors who are not supposed to show any chinks in our armor? Because being negative will supposedly make us succumb to our disease quicker? I’ve said this before, but if I really believed that positive attitude had any scientific and physiological effect on the progress of my disease, I would be so radiantly happy that the sun would shine from my proverbial “you-know-what”. To the positive thought police? It’s my disease and I have to live with it. Let me feel what I feel. l am only human, after all. On “Positive Attitude” December 7, 2010
Exactly like the ad-copy I saw for Bradford Exchanges pre-lit Breast Cancer Awareness Christmas Tree on one of their targeted Facebook advertisements….“Celebrate the season of hope with pink-ribbon pizazz in this breast cancer support pre-decorated pull up Christmas tree.” So Christmas is now the “Season of Hope”, and apparently we need pink-ribbon pizazz in our lives? Isn’t incurable Stage IV breast cancer enough? Like I said in my recent blog entry, they have even found a way to put the Breast in Christmas. Merry Breastmas. “Celebrate Life” Breast Cancer Support Fleece Jacket November 20, 2010
How do [we] know for sure that breast cancer itself has just become another part of ridiculous pop culture? When the Supreme Court is going to hear a case debating the merits of the term “boobies” all in the name of freedom of speech and “breast cancer awareness”. What a crock. Does anyone even care that the correct term is “breast”? Read more here. NY Times Magazine’s “Think About Pink” November 17, 2010
This list gives me such hope that sooner or later people will start listening and we will see meaningful change and action. Thanks for all that you do in moving this fight forward. Pinktober, and A New Era November 9, 2010
Pink “awareness” is one thing but “accountable awareness” is exactly what we need, amongst other things. Filtering the pink noise out to get to information that might actually help me (physically and mentally) is an extremely frustrating process at best. With all of the money pouring into the breast cancer cause, why is this still the case? The Pink Leftovers November 4, 2010
Absolutely spot on. I can’t imagine having to go through this without the vastness of the Internet as a boundless communication tool in which I have found amazing support, narratives, dialogue and community. It must have been a very lonely world in Ms Lorde’s time but how profound for her to recognize the importance of the cancer patient’s voice. Audre Lorde’s Cancer Journals October 31, 2010
I’ve been talking to a lot of people about this issue, particularly in this last month. Even from within my own circle there seems to be a sense of that there’s no such thing as bad publicity, it doesn’t matter how money is raised so long as it’s raised and it least having the pink visual gets people thinking or can start a conversation. But the problem is that no one seems to be digging deeper than that and truly questioning what “awareness” really means and where the money is really going. That is the danger of the “TIONS” as you so aptly put it. There has been a complete dumbing down of what a breast cancer diagnosis truly means, and you are so right when you say that our attention has been diverted by all of this pink noise. Society needs a wakeup call in the form of rational debate and critique so we can move forward in the fight, and I believe you may be leading that charge. Kudos to you. Run If You Want To! October 25, 2010
Gayle – I’m sure there aren’t many instances that you are rendered speechless, but I certainly appreciate it in this case. Many thanks for featuring my blog post. And to leave you with another thought on this topic. I think it’s so interesting, nay frightening, that given a chance to create from scratch an alternative existence in an alternative universe (albeit virtual), that Breast Cancer wasn’t one of the things that the Creators chose to leave out. What does this really say???? Breast Cancer Avatars on Second Life? October 22, 2010
I think this pretty much sums up how lazy our consumerist society has become when it comes to charitable acts. So someone only has to “Like” Purina via Facebook. Let’s see who’s really benefitting here. Facebook gets detailed data on the “Likers” so that it can sell more targeted advertising space for all manner of products e.g. cat products, general pet care, health care services and products, pink-ribbon tat, other cause-related tat, and goodness knows what else. Purina gets a nice uptick in sales of cat food because everyone feels good about purchasing their pink pet food, and they get pretty effective advertising for the bargain price of $150,000 (I believe they are donating $2 for every “like” up to $150,000). After Komen takes their slice of the $150,000 for overhead, how much do we think is actually going to help ERADICATE breast cancer and help people like me? Seems like the benefits to the company’s involved, are a LOT more than the $150,000 it’s “costing” Purina, and once again my illness is the bargaining tool. Where’s my benefit??? Cat Nap for the Cause October 20, 2010
Gayle, you say that “Breast cancer is no longer hidden”. I agree with you on this point to some extent. However, I think the reality is that despite the pink ribbon movement and all of the “awareness” it has generated, many, many people still do not really comprehend what a breast cancer (or any other cancer) diagnosis actually means for the person going through it. Nor do I think the majority of people really understand the complexities of this disease and how almost impossible a proposition of a “cure” really is. I think the pink ribbon culture has bought us more ways to get diagnosed, more ways to get treated and more ways to get supported, but I don’t think it has bought us deeper understanding of what it will take to eradicate this disease. If it had, then we would know unequivocally that pink ribbon culture isn’t the answer. Starting a Conversation October 18, 2010
To me this evidence alone, only reinforces the point that we need to stop with the color coded ribbons and popularity contests, and see the eradication of cancer as an integrated effort immune to the power of corporate greed and powerful lobbyists. For the good of the country, fighting cancer should not be a for-profit business! Economic Interests October 18, 2010
I can’t tell you the number of times people have said to me that staying positive and happy will keep me winning my “battle” with breast cancer. People always ask me how I’m feeling, but don’t really want to hear the answer, unless I’m upbeat and sunny. People are always saying to me “Oh you look great”, but they don’t really see what is going on, and nor do they really want to. So many people say “Oh we must catch up”, but then never call or just simply ignore me. I now surround myself with a few very trusted friends and even now there are only a couple whom I feel completely comfortable talking with, and who “get” me. If I’m feeling off, I just don’t see people. For me, the pink ribbon culture has created standards of “strength”, “inspiration, “beauty” and “survivorship” that make it very difficult for me to express what I’m truly thinking and feeling. I highly doubt that Matuschka’s photo would ever be published now in the mainstream media. No one wants to hear it, see it or think about what a breast cancer diagnosis really means unless it’s tied up in a pretty pink ribbon and living happily ever after. Look what I just found on the Jezebel blog…. Scar Project. Remembrance October 15, 2010
The vested interests in my continuing decline in health are staggering and frightening. But if we’re talking about this from an economic perspective, here is my question. If all the people afflicted with breast (and other) cancers were magically cured, with no further treatment required, and were able to fully recover enough to go back to full-time work, would the commensurate increase in individual wealth, federal/state income taxes and the country’s overall productivity be enough to more than offset the loss of the pink profit centers for the corporates and healthcare industrials ? If the answer is yes then we might have a chance at getting somewhere in the fight to eradicate cancer for good. Are there any economic studies out there that you know of that address this question? Birth of the Perpetual Fundraising Industry October 15, 2010
I absolutely agree with you that there is not a one size fits all approach to breast cancer screening. Consider the facts of my own case which I believe show some of the limitations of the current mantra.
At age 33, by chance, I discovered what simply felt like a hardening of tissue in one of my breasts. There was no pea shape, no lump, no hard edges, no pain, and nothing to really suggest anything was amiss except a feeling that I had that something didn’t feel right. Upon meeting with my nurse practitioner I was examined (where she said she couldn’t feel anything), asked some standard questions pertaining to any known risk factors (in my case no family history, no smoking, no obesity etc, no, no, AND no!). I was summarily excused and told to perhaps consider breast massage and come back in 6-months if I still felt something. After begging and pleading, because I just felt something wasn’t right, I was given a prescription for a sonogram, since mammogram wasn’t considered appropriate for my age. Once again, nothing was found, and Nurse P summarily waved me off once again.
At this point, many people would have given up and put this feeling out of their minds. But something inside me wanted definitive answers. I called a trusted friend and got an appointment with her ob-gyn. Once again, this Doctor couldn’t feel anything nor did a second sonogram show anything conclusive. But this time was different. The Doctor listened to my concerns and agreed to send me for a mammogram that day. It came back highly suspicious. Two days later I went for a biopsy and had the diagnosis. Advanced stage invasive ductal carcinoma with axilliary node involvement. Tumor was large but with extremely undefined margins, hence it never felt like much at all, except to me. Oh, and the kicker, turned out I was BRCA1 gene positive as well, despite no family history whatsoever.
So my point in all of this, is that I tend to tune out any discussion that I hear about screenings and awareness as touted by the pink ribbon brigade. My case completely fell outside any of the advertised guidelines related to screening, statistics and risk factors. In fact, it was adherence to those very guidelines that I believe caused that Nurse Practitioner to tune out my concerns and wave me away. I would wager that if I had taken her advice to come back in 6-months, I don’t think I would be here today writing this post, some 7 years later.
I’m not sure where I stand on the recommendations that are currently out there, but the bottom line is this. The touted guidelines failed me, and will continue to fail those women who fall outside the statistical norms. Let’s not get caught up in statistics when it comes to our own bodies. Let’s have policies and a health system that encourages us to be our own advocates. Let people make up their own minds, in consultation with the medical professionals, as to whether they want the stress and other risk factors associated with cancer screenings. If you think something is wrong, find your voice. Be heard. You might just save your own life. You are so right. There is no one size fits all approach to screening (and treatment AND research) for this this insidious disease and this is the danger of a campaign that is primarily focussed on mammography by questionable statistics. Pink Kitsch, Brought To You By NBCAM October 9, 2010
I completely identify with this quote from your post….”In this type of cultural environment even the diagnosed must carefully decide what to reveal about their illness experiences, and what to hide.”… I think for many of us dealing with catastrophic illness, this feeling of being unable to express ourselves fully for fear of how other people might react is a major source of frustration and anger. At least it is for me. Ironically, I was even severely rebuked at a breast cancer support group that I attended (and never went back to) when I vented my frustration on this very issue.
The kind of comment made by eoleary29, is one that I hear quite frequently. In fact I saw this one just the other day which I found utterly disturbing and offensive in the extreme……
“……….I would hope that instead of being bitter over a simple color, you would appreciate that you’re still alive and do your part to help future generations. That includes buying things for the cure AND spreading knowledge.”
We shouldn’t really be surprised. Comments such as these come from a position that really is a direct consequence of the pink marketing movement. That is, the pink movement has done a spectacular job in training the masses to buy into the pink ideology by using fear AND guilt as fundamental tenets of it’s campaigns. The unfortunate flipside of that message is that we, as poor little breast cancer victims, should be eternally grateful for benevolence of any kind and basically put up or shut up. Not me, that’s for sure. Go Pink, or Go Home! October 6, 2010
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.)
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. “But Doctor…I Hate Pink!” October 6, 2010
This is such an illuminating post and drives home so many excellent points on so many levels. Standing behind colored ribbons and all the hoopla and pageantry that goes with it has trained the average person to think that this is how we “fight” breast cancer and all the other dreadful afflictions in the world, and that this is enough. The “cure” is held up as the holy grail that the warriors in the fight must continue to strive for at all costs, all the while ignoring, and dare I say marginalizing any real attempts to understand the role that our environment plays in causing cancers to occur in the first place…It reminds me of an article I read in the New York Times last year . It was about the cancer research grant system and how studies that result in “incremental progress” (read: short time line and result in another annuity for the cancer drug companies) are more likely to be funded than those studies deemed to be more uncertain, and invariably focussed on environmental causes and prevention (read: long time frame and no annuity for the cancer drug companies). As you rightly point out, unless there is a complete shift in mindset in the way that we as a society view the fight against cancer we cannot move forward in any meaningful way and cancer will continue to be the plague of our time. When the Saints (And Celebs) Go Marching In… October 4, 2010
I am so pleased to have found your blog. As someone living with breast cancer, I have come to realize that the pink ribbon movement is not the answer and I strongly believe that we can do a much better job of harnessing and capitalizing the power that it has created to advocate for meaningful change of existing cancer sphere paradigms. I look forward to following your work, and hearing more from this side of the debate. On This BCAM Eve October 1, 2010
And, when Rachel wrote these, I knew my work mattered.
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 meaningful action. Thanks for telling it like it is. “But Doctor…I Hate Pink!” October 6, 2010
It is quite simply an honor to know you and your work. Your immersion into this world is not for the faint of heart. But your steadfast attention to the facts and your willingness to be an opposing voice in this pink wilderness is proof of where your heart lies. With those who deserve better. Yes. Let’s amplify. Every Silver Lining Has A Cloud August 19, 2011
As usual Gayle you provide a thorough analysis of the issues. And whilst everybody else seems to be celebrating these latest findings you are quite rightly asking why, and continuing to demand better for all women. Thank you for this post. Mammogram Mania July 3, 2011
No Rachel, Thank you.