Breast Cancer Awareness Month (BCAM) has begun and today I want to address why this is a difficult month for those of us living with Stage IV Metastatic Breast Cancer (MBC). The sad fact of the matter is that BCAM has been traditionally overtaken with the pink-wearing, boa wearing, bra-on-the-outside-of-the-clothes wearing, hooping and hollering, dancing and celebrating early stage survivors. Thus, the over-arching narrative peddled by all and sundry is about the triumph over breast cancer and the pinkwashing of a disease that is terminal/fatal for those of us who are Stage IV.
I’d like to lay out some of the reasons that BCAM sends those of us who are Stage IV either to vacillate on the spectrum between isolating ourselves from social media for the month or become enraged and spend time challenging retailers for the month; I’m sure no one can guess which one I tend to default to.
However, and this is a major issue, addressing what I see and experience is exhausting. It’s draining, it’s a struggle all month long.
The reasons laid out below are my own and don’t represent the opinions of anyone but me. I’d love to hear if the reasons resonate or not with each of you!
First of all, in all of the 31 days of October, those of us with MBC get one day, the 13th. I’ve often wondered if selecting a day with a traditionally unlucky number to recognize those of us unlucky enough to be diagnosed with a disease that will kill us was intentional. Perhaps it was. Just like only allocating 7-10% of the funding for research into a cure for breast cancer to those of us who are dying, allocating one day for awareness of those of us #dyingforacure is equally puzzling. In my view, we should apply the principles of triage to the problem — focus on those of us who are dying at a median rate of 2-3 years post-diagnosis rather than those who are at least 70% likely to end treatment and live a “normal” lifespan.
And yet, the focus is on those who’ve triumphed over the “easy” cancer and touting the “easy” testing (i.e., mammograms), which don’t even detect much/enough of the disease that murders my friends daily.
Secondly, the pink ribbon is EVERYWHERE. On bananas, on yogurt, on beauty supplies, shirts, stamps, etc. Yet, if one queries those companies about how pasting that ribbon on everything helps those of us with breast cancer, the answer is usually extremely minimal, if at all. There are exceptions, but the usual answer I receive is pennies to selected charities for every dollar spent. Then those same charities often use the majority of those funds in administrative costs like salaries and “educational” campaigns, meaning very very very little gets to actual research funding, which again, is allocated to MBC at the rate of 7-10%.
Also, many of the products that boast a pink ribbon actually are or contain elements that CAUSE CANCER.
Starting to see why this is so difficult?
Third, facts about breast cancer are readily available and most women will admit to knowing much of the facts about early stage breast cancer. The one (1) in eight (8) statistic of the general risk of breast cancer, for instance, is widely known. The pink ribbon is widely known. And yet, important facts about those of us who are dying at a rate of 116 men and women per day in the United States is much less known. In fact, my personal position is that we are sidelined and pushed to the back in order not to “scare people.”
I’ve many personal examples, from the social worker who uninvited me from a support group because I would scare the other women to the early stagers who unfriend me on social media because they don’t want the “negativity” of my perspective as a terminal patient to upset their pink bubble.
I’m sure everyone who reads my words will have their own perspectives and I’m normally open to and accepting of the fact that people often view things very differently. There are a few exceptions and this is just one of them — my viewpoint is simply too personal to be moved.
As a terminal patient who has a small statistical likelihood of living for another eighteen (18) months, this subject is literally life or death for me. The BILLIONS of dollars spent every year on breast cancer are largely not allocated towards the greatest need. Breast Cancer in the United States is big money, from the pharmaceutical companies to the Post Office to the “charities” that line their pockets more than help actual people in need.
And I see the faces of all the women we’ve lost when I see those ads.
I see my family, my husband, my children, viewing these ads after MBC murders me.
I see the husbands and children of the women we’ve lost when I see those ads.
I see all the women who never got to have children, who grieve that they can’t find a partner because of the fact that they are terminal.
I see the young women on my timeline talking about ending her life because her daughter is young enough to forgot losing her mother and maybe that would be kinder.
I see and hear the frantic calls I get nearly every day of people going through the initial diagnosis, progression, being told there are no more options, being told to get their affairs in order, being told that life as they knew it is irrevocably changed.
With all of this in my head and in my heart, BCAM is a minefield. The ads are triggers. The pink ribbon everywhere is like a knife to the heart. When retail workers or people who are walking to raise money or owners of Etsy shops tell me how their products are productive for the “survivor and thriver” communities because they are encouraging people to check their breasts or the sexualized depictions of breasts are “cute” or necessary to raise awareness, I literally want to vomit. None of that helped my dear friend, Emily Garnett. None of that helped any of the men and women we’ve lost and will loose to this relentless and overwhelming disease.
And so, this month, I will share facts about MBC every day. I have partnered with Adiba Barney of KnowMBC because I’m not artistic in the slightest and she has amazing content, plus profiles of many of us living with MBC.
So, stayed tuned and feel free to comment with your perspective/opinion. Just be aware that while I will do my best to respond in a level headed and kind way, I may be too triggered to temper my words. You have been warned. 😉