The other day Rethink Breast Cancer shared a pledge on social media to increase our allies, so we could stand united to change the future of MBC. It simply stated the reality of MBC and the statistical chances of a metastatic recurrence after an early stage diagnosis which hovers around 20-30%. “Improving outcomes” because those of us with stage IV MBC truly need the help of our healthy counterparts to keep this going. This campaign was essentially created by some very kick ass women volunteering on Rethink Breast Cancer’s MBC Advisory Board with an inherent drive to change the future of this disease by increasing the allies we desperately need. This was the photo linked to the insta post: Simple but truthful…one sentence: “20-30% of people diagnosed with early stage breast cancer will be re-diagnosed with MBC” with more details below:
Then when I went on Instagram to look at the comments, I was SHOCKED. Shocked in a pit-of-your-stomach, disgusted way where you kind of can’t believe what you’re reading. In an effort to better the lives of those with MBC and to stand united was what the pledge was asking for & these were the comments I saw:
“what a terrifying thing to read on a Monday night”… “cue the recurrence fear and triggered panic attacks”… “not what I needed in the morning”… “read this and bang, anxiety through the roof”…“I like positive posts better”
… “Triggering”… “so triggering”… “scrolling my feed & then seeing this is like a punch in the face”… “well happy Monday”
“to bandy about statistics without context and without warning is irresponsible” …(hmmm… what does bandy with statistics mean? It’s statistics and averages. It’s science. It can not possibly be more black and white. SMH)…
“triggers”… “Worst post ever – I don’t need this and neither does anyone else… disgusting I'm rethinking you” (OK, is it the worst post because we are literally trying to save people’s lives? Howabout most ignorant comment on your behalf…SMH & cursing out loud at this point) …“read about positive thinking and psychosomatic healing,” (ok, I’m not even fucken joking with the self healing bullshit – SO DANGEROUS & helps nobody) …
Oh gosh it didn’t stop there…
“I don’t like stats I don’t like stats”...well I fucken don’t like hippos but they still exist and that’s reality!!! Sometimes things can make you uncomfortable, but that doesn’t mean it doesn’t happen. When did this odd shift happen where snowflake culture uprooted common sense & factual reality? Suddenly honesty is viewed as fearmongering. This is why the general population thinks breast cancer is a treatable, good kind of cancer.
“This type of “statistics” is so triggering.” Ok, firstly, when you quote the word “statistic” you make it seem like it’s not an actual thing, like a unicorn or a far off concept. It’s a FACT!
SO, let me digest what you just said? Because a FACTUAL STATISTIC that many women face as their REALITY is “triggering” & hard to digest we should silence & simply erase any evidence that it exists??? Let that sink in...What in the actual bloody fuck is happening??!! We have regressed this badly with the division between the ebc and metastatic community?? Now, when I’ve been advocating for this disease since having my own metastatic recurrence I feel as though I am fighting for these ill informed-pull-the-wool-over-my-eyes-i-need-to-be-sheltered-by-reality-or-else-I’m-sad population & they have zero clue how our actions may one day save THEIR lives!
I’m all for open dialogue and speaking up & I would love if people had insightful, fact-based arguments but at this point the only thing that seems to gain traction is: “agree to disagree.” “I’m triggered.” Oh man, I googled where in the actual fuck did this stupid, millennial word pop up from? “Triggered” vs “dying,” ya it’s just maybe a bit of a perspective shift. It’s as though one person used this word and everyone jumped onto the bandwagon like it somehow validated the argument of silencing those with MBC. You want to know what triggers me & many with MBC: knowing that this disease is terminal and I need to be on some form of toxic treatment for the rest of my life and never being able to stop! TRIGGER: watching many, many friends die. Listen, I come from the world of healthcare and I never in my career saw as many people die as I do now due to MBC. We are talking weekly. It’s horrendous! TRIGGER: Knowing the amount of funds allocated to actual research is dismal and the rest goes towards awareness and prevention which has not led to increased survival! TRIGGER: having to face your mortality in your 20s & 30s! TRIGGER: Getting scanned every few months to find out if the cancer is spreading or if you may be nearing the end of your life! I could go on and on because when someone tells me they’re triggered by STATISTICAL FACTS I simply wonder what would they do if they actually had the triggers of those with MBC? If reality is just too much then I don’t know what else is left to say?
Aaaand what gets me is when the argument comes back as “but this is how I FEEL.” There’s a reason the word FEEL is in bold. Because that’s a subjective sort of thing but stats are objective and factual, sooo it’s like comparing apples to oranges and I’m just like WTF am I being pranked??!! Like these are not the actual comments are they🤯?!!!!
I just end up going...WOW...and fuck...seriously…holy shit where did all these people come from & under what rock were they living under up until now??!!!
I’m just over here like: holey moley guacamole and that’s the G version of the F version that came out of my mouth, which left me with a series of hot flashes because it was so infuriating!!
You try to start a conversation and they end the conversation...you ask for facts and they simply respond; “ Agree to disagree.” “Unfollow.” Oh gosh you totally validated yourself with that peace out …cop-out...running away response.
With that, do others see past this garbage as I do? It’s just I’m all for opening the conversation and talking about things but they just state how they feel when they wake up to this. And I’m over here just going it’s not about feelings so much with this post as it is “hey, I’m trying not to die. Can you help? Please?" Don’t know how else to sell the dire nature of it all? I don’t know how to be clearer anymore. I literally put it into 5 words but it’s still... “I’m triggered” 🤦♀️...and until we can stand united, lean into the nitty gritty horribleness that is MBC, this disease will never become chronic. The fear that boils over with the early stagers and their comments is a direct result of what they actually don't want to acknowledge which means to progress...to become metastatic...and die. By shying away from this issue, it won’t make it go away. Until we start talking and discussing the reality that is MBC, we won’t make strides to end it. When people say “I’m angry” I say, “ya, I am angry I’ve been faced with my mortality with MBC since I was 28yrs old & I’ve known more people die from this then I’d like to.” Asking to simply live is viewed as though it’s a privilege but it is my right and I am done with the silencing of our voices...of invalidating the importance of OUR LIVES. Let the uncomfortable begin because we are silent no more.
Did anyone not think that maybe if this disease wasn’t deadly then all you early stagers over there popping your Ativan due to being “triggered” wouldn’t be fearful anymore because people would no longer die? Just stop and THINK about it. THINK…EMPATHIZE...and then THINK about it some more. I don’t know how to make this more understandable. I don’t know how to make it clearer?! I have plenty of early stage friends who get it and stand united with the MBC community, but then when comments propagate to try to shut the MBC community up…ya, you’ve picked the wrong gal for that because I am done. Respect is earned and it’s a two way street. However, many comments simply want us to stop talking about it. We need to hide under a rock and just die apparently or else we have caused people to feel “triggered.” Hypocrisy at it’s finest… Ignorance at it’s peak… Stupidity in it’s lowest form.
The one thing I am done doing is apologizing for what my reality is. Don’t ever apologize for vocalizing your reality. EVER. The moment we apologize, simply because of other’s comfort levels we begin to deny the truth and what it truly means to have MBC. When did silence change the course of the future with anything? When did not standing up for all that you believe in have a positive impact on the future? The more we try to silence and deny what is happening the more we become a part of the problem and not a part of the solution.
My life for the past 5yrs has been about survival, whilst researching everything under the face of the sun to try and change the grim stats and learn about MBC. We are trying to help YOU. If you were drowning and I threw you a life jacket to help, but rather you say “no no I won’t drown I can tread water”…ya, for how long before you, yourself drown? You can’t tread forever!! There will come a point where you need that life jacket, and will realize that those throwing it at you are us; those with MBC.
In closing, I ask others to try and understand how awful this all was. The individual who has worked tirelessly to help start this entire allies campaign does not herself have MBC, but she is currently watching her mother actively die from it. She is an ally that stands with us, despite her immense heartache due to her own reality. In my heart, when I saw this campaign launch I thought how amazing it was that this woman is spending her own time, while her mother is near the end of her life, very well knowing that this campaign won’t help her own mother but may help others. Can you let that sink in? She has used her precious time in an effort to possibly better the lives of those with MBC & those early stage bc patients who will progress from becoming a statistic, and the responses literally were as dumb, uninformed, and simply so disgusting that my jaw dropped. If we can’t talk about the hard stuff, then we are failing. We are failing ourselves from recognizing what the reality of this disease is. We are failing society by pretending this doesn’t happen. If you think a single sentence noting the statistical odds of a recurrence are “triggering” then god have mercy on you because the day you learn your cancer has spread and your time is limited…ya, you’ll realize what an actual “trigger” is.
I have realized that after being diplomatic in educating the public on MBC that diplomacy is out the window at this point. If you choose to write a completely ignorant response, by all means expect to hear my wrath because I am fucken over it! I am over trying to be nice to simply ensure I don’t “trigger” a panic attack. OK snowflake, let me start here by saying that life is not fair. Bad shit happens to good people ALL thetime, but by pretending it does NOT happen what in the actual name of all that is holy do you think will change? We will never make this disease chronic because we are burying our head in the sand to simply protect our “comfort” levels because “I don’t want to hear this.” We need to stop soothing and catering and apologizing to those that are uncomfortable hearing this because people are continuing to die right now and they need actual help! This entire pledge has absolutely NOTHING to do with feelings. It has to do with life & not dying. It has to do with helping to change the future of which that is triggering you and your panic attack. That’s it.
With all the awful comments came the rally of the MBC community, along with early stagers and those who love them to stand up for what is right. I thank you all for not backing down and for educating with facts what is the sobering reality for far too many. I am proud of those who chose tospeak up instead of retreating to silence. I heard you. WE heard you and I applaud the hard work that many do in desperation to try and change the current statistics. You will be what moves the pendulum forward. These conversations NEED to happen so let’s keep it going. Advocate for yourself. Hiding won't change a thing. Spread the word.
Educate yourself…and please will you stand with us by signing the pledge to show your solidarity that we will no longer sit on the sidelines and pretend this doesn’t happen. Rise above all the background noise & let’s make the biggest noise anyone has ever heard because quite frankly silence = death and chatter in the background can be our fuel to burn and ignite our collective voices to once and for all say: WE ARE HERE. YOU WILL HEAR US & WE WON’T BE SILENT NO MORE!
SIGN THE PLEDGE TO BECOME AN ALLY HERE: https://e-activist.com/page/48027/petition/1?ea.tracking.id=fb&utm_campaign=MBCAllies&utm_source=Facebook&utm_medium=social&fbclid=IwAR2FcvlH79zonUa4ItWBZk22yHFNoCuCba59vFTbqxe1aJf8cXk64LiERhg
WARNING there are FACTS below so if you’re triggered by reality now is the time to pop that Ativan and work on your deep breathing & eat a pickle (I love pickles):
- If you are one of the people who responded with: “that’s not true” to statistical facts about the fact that survival hasn’t increased in decades then you should educate yourself on something called lead time bias which you can find here from the NIH : https://www.cancer.gov/about-cancer/screening/research/what-screening-statistics-mean
- If you want some quick facts about MBC check it out here at MBCN: http://mbcn.org/13-facts-about-metastatic-breast-cancer/
- If you want a detailed report on MBC check out the Global Status of Advanced/Metastatic Breast Cancer Decade Report: https://www.breastcancervision.com/sites/default/files/review-mbc/global_status_of_mbc_report_summary_041416_digital.pdf
- Did you know we do not keep track of metastatic recurrences of breast cancer? Therefore, people such as myself who were initially diagnosed at an earlier stage are deemed “cured” and a success, despite later advancing to MBC. We have absolutely no idea how many people in North America are living & dying of MBC as we only keep track of de novo patients. If you would like to know more about this very important topic check out this piece written by the Huffington Post discussing this very issue: https://www.huffpost.com/entry/where-is-the-data-the-epi_b_12311030
And please go to Rethink Breast Cancer’s Insta page (@RethinkBreastCancer) to find this thread and leave your comments. We can’t stop talking about this. This is about people’s lives and we need to recognize that this is happening. Stop sugar coating a deadly disease and stand up for what is right! Goodnight & peace out!!!