Speaking our Truth

BCAM 3 Minutes

Truth is a big deal to me. From a personality and training perspective, I’m wired to look for and speak the truth. What I often forget to do is package the truth.

But what other people don’t often understand is that I really do appreciate when others speak their truth, give their perspective, even if it’s unvarnished and direct. I detest pretending and fakeness or the people who act one way in one context and another way in a different context. It’s confusing.

And I feel the same way about Breast Cancer Awareness Month (BCAM). I want to know what others think, how they feel, why they do the things they do or don’t do. I think it’s important.

And so I’ve taken some screenshots of a recent conversation on a friend’s page on Facebook. For once, someone who has had early stage breast cancer took off the gloves and told it honestly and clearly from her perspective. I don’t envy my friends who attempted to reason with her because she was communicating from deep in her feelings and reason had nothing to do with it. Read on for my take.

My friend, Natalia Padron, posted this picture, which honestly sums up so many of the feelings of those of us living with MBC. She had some comments about her trepidation about October on her own page, that the awareness campaigns wouldn’t give us the cure we need to stop dying.
This response from a friend of Natalia’s, I believe sums up a big division in the breast cancer community, which includes all 4 stages. Years ago, I wrote a blog about how some of that division affected me. You can read more about that here.
In my view, the first sentence is absolutely true. While my friends didn’t intend to do that to this person and couldn’t anyway, that’s the way she felt. While I know she is speaking her truth, I am profoundly sad that others speaking theirs has this affect on this woman. I am also concerned for her that she doesn’t understand there is no winning against cancer, no matter how much we all desire it and she is at risk for reoccurrence and for progressing to stage iv.
And here it is, the truest statement she said. I believe in my heart that many living with early stage cancer feel this way and just don’t say it. The exclusion we all feel living with MBC, I believe, is because this is how others really feel. They don’t want the reminders or the information that cancer isn’t actually behind them.

Ironically, this woman continued the conversation and all attempts to help her understand that our sharing our truth did not obviate hers failed. She didn’t want to know that her “accomplishment” is a false hope, I believe, because of fear.

Those of us living with Stage IV cancer are alive yet dying. We are terminal. We lose so many friends every day. And that’s scary. It’s scary for us living it. And it scares others.

This last interchange with my dear kind friend, Janice Cowden, is what I think really reveals the mentality of so many. Others want October to be “just” about awareness. To be told that there is a dark underbelly of experience makes them feel guilty for surviving.

And there it is.

Survivor’s Guilt.

It sucks, I know.

I’ve lived for four (4) years with MBC and I see my friends die every single day. They didn’t do anything better or worse than I have. They aren’t better or worse people that I am. I’m just lucky that the medication I’ve taken and am taking is working, for now.

That is heavy stuff.

In my view, in my truth, I think what tells you about the character of a person is what they do with guilt. We all have guilt for one thing or another, that’s just life. What we decide to do about it, that’s what separates people.

I don’t know Janet who posted these heartfelt comments that I know others share. The ladies who took their time to engage and educate this lady, those are women I know. Women who go out of their way day after day after day in the midst of their own pain to help others. Women who have loved and supported me in my own struggles. Women who have earned a piece of my heart just by being alive.

Natalia, Janice and Kelly are all women who have taken the hardest thing that has ever happened to them and used it to advocate for and help others. Their truth is very different from Janet’s and none are less valid. It is what these ladies DO with their truth that is worthy of comment.

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

17 thoughts on “Speaking our Truth”

  2. Ummm you are joking. The comment of get your own month is ignorant and I do hope to god she’s not of the 40% who will be diagnosed with stage 4 or secondary breast cancer. It’s all of our month and it feels like the same reason I was kicked out of a bc support group at Cancer CAREpoint in my first year – I was told I was too depressing. The actual reason was the participants in the group asked me a lot of questions finding the MSW moderators answers both lacking in science backed information and danced on the edge of a slippery slope which was speak to your doctors. The questions were what’s radio mammography? Why am I so angry all the time? Why are all my friends ghosting me? Typical support group questions. To be discussed. Amongst the seven women. When they’d heard I’d be going to the surviving with grace group – all cancers so not even an mbc group – they all tracked me down and asked for my number. I had to give them my blog address instead.

    I appreciate the truth and detest passive aggressive behavior – I appreciate people laying it on the line but with knowledge not ignorance and certainly not with repression of another person’s opinion or feelings. We have so much splintering and fragmentation (as I discuss in my post last week you may recall) but no one had the audacity I guess to say what they felt.

    I’m weird that way. There’s zero guesswork – ask me. I’ll give you my honest OPINION. These are opinions for the most part. Sounds like someone has been hurt before or has had a hard time with their own diagnosis.

    Like I said beware the 40% secondary breast cancer numbers, which may be higher as soon as the SEER database is worked out. Let’s see then how the 13th feels. Yes it’s about awareness – all awareness including men, young women, people of color, old people, and all the continuing chaos in the ecology that doesn’t give much of a chance to anyone these days.

    Much love
    Can’t wait to see you!
    Almost time to go! Yikes!

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  3. good words. The words I hate as an MBC Member are SSurvivor and Warrior. I was a survivor for 6 years and then it came back. I fight for myself every day and even love the Wonder Woman personality, but I would be the worst as a war monger. I hate this month, but I endure. I tell friends and family, “Don’t wear pink for me. It’s only a color (which I happen to love very much).” I will listen to all my sisters and brothers who have MBC, but I don’t agree with all that’s said.

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  4. I was dx’d in 2010. With a lot of luck and treatment…I have remained NED. Don’t call me a survivor, warrior or any of that crap. Am just a person who was dx’d and tx’d with and for breast cancer. I understand that different people have different truth, but I don’t get the anger toward people with MBC speaking their truth. I hate that there is an early stage/MBC divide…it is so counterproductive. And I neither need nor want a participation trophy for completing my treatment. What I want are better treatments for MBC, better surveillance because that’s real progress. And that will help all of us more than pink trash cans and balloons and forced “positivity”.

    But yeah, I understand that’s my perspective.

    Thank you for posting this and the opportunity to respond.

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  5. Early stager here to say I find Janet’s comments heartbreaking and misplaced. I’m sad she feels invisible somehow in her survivorship, but she does not speak for me. I have spent the last 6 Octobers amplifying MBC voices & stories. Here with you, Abigail.

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  6. Pingback: Weekly Round-Up | Journeying Beyond Breast Cancer

    1. I have met so many who do and so many who struggle, there’s always so much more going on than meets the eye. I too was taken aback at Janet’s comments; at the same time, I do my best to try to see past and under the feelings to what is going on underneath. It’s always more. And then we know how much more work needs to be done. Trying to see that rather than my own upset.

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  9. Pingback: BCAM 2021: Day #14 – No Half Measures

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