This year during Black History Month, my son’s school, which is very white and very affluent, met with students from a high school in a poor neighborhood where people of color are the majority. They talked about what’s going on in their neighborhood, and how they needed help advocating for the school district to provide bus passes for all students at the school. They need the bus passes because it isn’t safe for kids to walk to school in their neighborhood, because there’s so much crime. Our school stood with the high school students at the school board meeting, to show that we were behind them and we care about their community.
Our students learned what being an ally is–it’s not about being part of the community that needs help, but about standing with them and using our privilege to help them. An ally is someone who not just cares about a community in need, but also does something to support them. And what that something is, is what the community says it needs, not what allies think that community needs. So, being an ally requires listening to the community and then asking “How can I help?”
There’s been a division in the breast cancer world between early stage patients, and metastatic patients. Recently we had a #bccww chat where we talked openly about why this is happening. My theory is this: historically, metastatic patients have felt excluded from the larger breast cancer narrative about “beating” cancer and then celebrating with pink feather boas and “survivor” events. Metastatic patients don’t beat cancer, and we don’t survive cancer–we die of or with it, and mostly of it.
For a long time, metastatic patients were mostly silent about it. It’s hard to speak out when you’re the only one in your community with metastatic breast cancer, and until the birth of social media, we often felt very isolated. But social media has been a game changer. We can now connect across geographic boundaries, and we don’t feel so alone–and so we’ve begun to speak out about how the early stage-focused narrative of breast cancer excludes us. And we’ve begun demanding that the breast cancer world include us and hear our voices.
That’s triggered a backlash from some early stage patients who believe in the early stage narrative. Like Joan Lunden, they say we’re too bitter and angry and that we should follow the dominant narrative about staying positive–as if being honest about the reality of treatment only ending when we die is us just being “too negative.” And sometimes people in the mets community say things that belittle the experience of early stage patients, as though having early stage disease is no big deal. As if we’re not all experiencing something traumatic in having breast cancer, at any stage. Our traumas are just a little different–ours is ongoing trauma, and early stage patients’ is past trauma that has a continuing impact.
This division between early stage and metastatic breast cancer patients is a serious problem. We need to begin to build trust and understanding between us, because we in the metastatic need allies in the early stage cancer community. We need allies who see we’re in need and then do something to help us.
I think it’s vital that early stage patients open their hearts and learn what life is like for metastatic patients. Too often our voices are still ignored, as are our pleas for help to the wider breast cancer community. Our needs aren’t part of the breast cancer advocacy that the National Breast Cancer Coalition pushes. While prevention is a noble goal, it ignores those of us who are already living with metastatic cancer and need help now, before we die. And when we bring it up, too often we’re silenced. Listening to us a necessary first step for early stage advocates to be an ally to our community.
And that something is helping us advocate for research dollars to flow to better treatments for metastatic cancers. 90% of cancer deaths happen because of metastasis and yet very little of the research dollars flow to metastatis research. In breast cancer, it’s only 7%–and virtually all deaths from breast cancer are from metastatic breast cancer. I know some folks like Susan Love have questioned that figure, but if you look at how MBCA conducted its research–literally going through every grant to see what it area of research it was funding–you’ll see that this is a solid figure. And an alarming one.
And, I hope people with early stage cancer will understand that we need allies because we’re dying. It’s not easy to be an activist when your ongoing chemotherapy leaves you too tired to get out of bed. It’s not easy to get the ear of people in power when you can’t afford to travel because you can’t work anymore. It’s not easy to demand change when you’re dead. The privilege of surviving cancer is something we in the metastatic community don’t have, and we really hope that early stage patients will use that privilege, their staying alive, to help us who cannot stay alive. We literally can’t do this alone–we need allies, who listen, and then ask “How can I help?”
Your post has really stuck a cord with me.
Ever since my diagnosis last year, I’ve really struggled with the gap in attitudes and resources for stage IV compared to the early stages. I’m finding it really hard to deal with. You summed up so much of it so well. Thank you.
(Plus, I was only saying today to someone how I want to be a good ally to people with breast cancer).
Thank you for this Beth. You brought up a very important topic in advocacy.
Having been in the field of justice issues as my line of work for many years, (before MBC), I am well aware of the disparity between us and them. Early Stage vs Metastatic.
I am a firm believer that metastatic breast cancer is a justice issue. We want to be heard, we want a voice…..we want to be given respect, as humans, who are dying of a disease, that could be cured if the money/research was put behind it.
We need Allies like you said, who can stand up for us…..walk beside us…..be strong for us when we are not able to.
I feel like most of the time, what we get is….”Just shut up and be happy and grateful for what you have.”
Its like the human sex trafficking trade….its rampant here in the US. It affects hundreds of thousands of women and children. It happens in our neighborhoods, cities, states. BUT YET, everyone turns a blind eye until it AFFECTS them….until its their neighbor, their daughter, etc…. Until it touches a very personal space. But until then, most will hold the issue an arms length away, because they are AFRAID.
I know its a pretty extreme example but HELL, we are dealing with an extreme disease.
My question to myself is then: “What can I do to bridge the gap, to find the allies and equip them to help?” And this is where I will start.
Thank you for being a voice for us with metastatic disease.
Lesley
Lesley Glenn recently posted…My Humpty Dumpty Life: A Balance Between Love and Pain
Here, here, Beth. Cancer is a terrorist, and breast cancer in particular is a stalker, I’ve always said, no matter what stage you are diagnosed at. I know I don’t have to tell you that a lot of us early-stagers have felt left out of the pink party as well, from the get-go, especially if we have even a smidgen of awareness that none of us is exempt from ever developing mets. I’ve lost too many friends to this damned disease ever to be lulled into drinking the pink koolaid. What astonishes me is those who do drink it, even when they should know better. There is no cure. Period.
I am 100% an ally!
Thank you, Beth! I only had a few months as an early stager. Mets were found after 11 months. So far, though, my mets are in the chest area – lymph nodes, chest wall, pleura. I asked my doc if I am REALLY Stage IV with only this and he said yes. My early-stage friends have been my rocks, though. It is the friends of early-stage friends who can’† seem to grasp why it was over for the others after a year but not for me. They want to know when they can celebrate my “last chemo”. I have told then “at my funeral”. As I have a rather dark sense humor, I suppose they think I am joking. I do get tired of trying to explain. I am on my fourth generation, Afinitor.
I didn’t know Joan Lunden had called us “bitter and angry”. If so, she has changed her tune, because she is a supporter now. I did read the “bitter and angry” description in Amy Rohbach’s book. Amy also whines about why we “can’t just let the others celebrate.” (I have never seen a metster try to stop them.” Amy was on the brink of our world at her last diagnosis. I truly wish her well and hope she never gets here. But I agree with Maggie Smith as the Dowager Countess, “A lack of compassion can be as vulgar as an overabundance of tears.”
When I was early stage, I was very much aware I was one scan away from crossing the line into MetsLand. And I was an advocate – not hardcore, but I did squeeze in letters to Congress and FB posts between clinical trial infusions and Zoladex injections, which I hoped would keep me from mets. (Spoiler alert – it didn’t work.) To me, it was self-preservation. I knew mets was a real possibility and I hoped that if I did cross that line, there would be better treatments waiting for me. I’m a fairly optimistic person – both then and now – but I’m not going to sit around waiting for a miracle. I have to save my own life.
At the same time, there were a few barriers to becoming an ally. As I mentioned, one was being just plain drained from 18 months of early stage treatment (the brain invaders were found just 6 months after completing treatment). Another one was not wanting to disturb the mets community. As Mandi said, advice on thoughtful and appropriate ways to be a early stage ally would be helpful. And third, loved ones, namely my husband, were very resistant about me putting any effort towards advocacy because they saw it as me staying in Cancerland. (Since I had aggressive treatment apparently that meant I was cured.) So early stagers might want to educate themselves but their family can’t handle it and want them to stick their head in the sand.
Just my ramblings as someone who’s been on both sides.
To clarify, it wasn’t just a matter of self-preservation. But I think it’s effective to appeal to people’s sense of self-preservation, not in a scary you are doomed to get mets way, but simply educating about this real possibility and that all of us should be working together so none of us have to face an early death from breast cancer.
I completely agree–if we can make mets a chronic condition with a decent quality of life, it makes a metastatic recurrence so much less terrifying than it is now when mets is a terminal diagnosis and the median lifespan is only 33 months. Cancer is like a terrorist–it’s scary because it kills people seemingly indiscriminately. If we can stop it from killing, it’s not scary anymore, and don’t early stage folks want to stop having to live in fear of what a metastatic recurrence means? I was never an early stager, so tell me if I’m way off base here!
Actually you are so on-base it’s like you are in my tumor-growing brain.
I can’t tell you how many times as a high-risk earlier stager I thought, “gee it would be nice if every bone twinge didn’t incite a panic attack” or “wouldn’t it be great if I could decorate the Christmas tree without turning into a sobbing mess because I’m scared it’s the last time I’ll be healthy enough to enjoy it?”
Honestly, I would be happy to live (emphasis on “live”) with MBC as a manageable, lifelong condition. I know some people think we are selling out by not insisting on a cure, but HIV and autoimmune patients don’t have cures for their conditions either.
Hi Beth: I’ve been following you since October when you were on Capitol Hill, and I continue to read and learn from you and your amazing voice. I’ve had Stage 1 breast cancer, but I’ve also watched so many friends and family go through breast cancer, including MBC. I can’t sit by and do nothing. More funding and effort needs to go towards metastatic research and support for people with MBC. Back in October, I wrote the Senators on the Health, Ed, Labor & Pensions Committee and asked them to include those key provisions that you wrote about in their legislation. But that’s just a start. How else can I help?
I am an ally. Always.
Nancy’s Point recently posted…Cancer Is All About Worry
Very well said. I do think there are many who want to be allies, it would be helpful to be able to point them to how they can help and what they should do (here, go to the 10 things someone can do to help metastatic awareness even if they don’t have metastatic disease). I know I have some early stagers who have asked. I usually ask them to share the story of metastatic, that we don’t have a cure, we are still dying. Hmm, maybe I will create a resource (Metup too?).
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again, so well said Beth. As an early stager by the skin of my teeth (“At least stage 3C”) who was once diagnosed at stage 4, I have vowed to make this my life’s mission – to give those with stage 4 a voice, raise a awareness, and most of all – funds for the best research I can find. The Cancer Couch website and foundation will be fully up and running this week to do that.
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