BCAM: October 1st

Advocacy, BCAM 5 Minutes

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. 😉

Published by Abigail Johnston

I'm a daughter, a wife, a mother, and I've been living with Stage IV Metastatic Breast Cancer since March, 2017. All of the words I publish are my own.

Published

27 thoughts on “BCAM: October 1st”

  3. I hear you, Abigail and I thank you for your courage in spouting off in an intelligent way! The pink thing really gets to me. I posted on FB asking people to NOT wear pink for me.In the picture of me with that post, I wear a pink blouse. I love pink! I have lots of bright pink clothing! My author website is done in pink. But all these adds for t-shirts with pink cats, dogs with pink ribbons, and now face masks in pink – NO!!! And I absolutely died when I went into the mall near my old home in California and saw tricked out bras representing dead women. NO!! It’s not about my bra either. Not that there are not cool things that mention MBC or cancer that aren’t cool to wear. I do have a face mask that has YOU ARE … with all the positive words written across it. That’s what I want people to think about all breast cancer havers. WE are so much more than a damn pink ribbon.
    I will now leave my soapbox. But I warn you that I might comment on every single post your write! Thank you.

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    1. Feel free to comment on every single post!! I love the engagement and hearing from others. Even if people disagree, I really do enjoy understanding how other people think. It’s not a one size fits all issue. Love and hugs to you! ❤️

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  7. Personally, having MBC, I try not to burst the bubble of the happy pink cancer survivor, trying to save money for the cause or wearing pink the month of October. I know when I was first diagnosed with breast cancer and was considered “cured” after all the treatment and surgeries, I wanted to share the happy. I will now however try to educate anyone who appears to want to hear about MBC or make sure I drop in a statistic about MBC.

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    1. This is such a tug of war for me! On the one hand, yes, I totally understand the personal need to celebrate milestones like the end of active treatment or the end of chemo. I’m fully in support of celebrating whatever is needed. However, I’m also well aware that the “cured” narrative is sold to the early stage community is FALSE. There is no cure for cancer. No one is cured. Each early stager who finishes treatment and cancer is thus undetectable has then the status: “No Evidence of Disease.” This is the truth. Is it bursting bubbles to share the truth that should have been shared by the medical establishment? I struggle with this. Everyone that I’ve talked to who has been early stage, though they were cured, and then had a reoccurrence of any stage is mad at their doctors for the false information. This adjustment can often erode any confidence that person had in their doctors. Just a glimpse into my tortured brain as I try to figure out how much to share or not share.

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      1. I agree the statistics aren’t widely shared with breast cancer patients, but not many people can live with the hammer hanging over their head, the knowledge that they aren’t cured, only on hiatus from when/if they’ll get MBC. Bad enough I HAVE MBC but I still remember what it was like to think I was “cured”. I think that’s why I leave them with their happy pink bubble. For the moment, a breast cancer patient can feel like they’ve conquered the worst thing possible. Time enough in the future for some of us to know we never were cured.

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  8. Abigail, I’m sorry October is such a hard month for you. Thank you for sharing your perspective on BCAM. I do have my annual breast cancer post scheduled for tomorrow, but I’d love to have permission to reblog this post on Reclaiming HOPE as well tomorrow. As you said, a lot of us know the statistics and the basics of early-stage interventions, but we hardly know anything about MBC. Also, I love the fact that you point out how little money goes to research through all these “pink” products. I think a lot of my readers would find your post eye-opening, to say the least. Blessings to you, sweet friend. I’ll be praying for you as you navigate this difficult month.

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    1. Feel free to re-blog any of my posts this month! I’ll be doing a post per day with MBC facts and highlighting the experiences of those of us with MBC. Each post will explain different elements that distinguish early stage breast cancer from MBC. If you or your followers have any specific questions, I’m also happy to continue the daily posts after the end of October to address any other issues as well! Thanks for spreading the word!

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  9. Abigail,

    This is an important, heart-stopping, and searing post that taught me a great deal. Once again, I hope you will try to share your work with the larger community. Maybe send it to The Atlantic: they like to run contrarian pieces. Certainly op-eds in newspapers.

    You have a powerful voice that can move many. Your reasoned fury is most persuasive.
    Annie💕

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  10. Pingback: BCAM: October 1st – Connect IV Legal Services, Inc.

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