what are we afraid of?

Death. We are afraid of death.  Or at least I am afraid of death.

This is a question that I posed to Shelley Snell when we met for coffee last week.

Shelley has been living with Metastatic Breast Cancer (MBC) since 2013. She was diagnosed with early stage breast cancer in 1996. But then the cancer came back again and again – first in her breast and then it moved to other parts of her body. When breast cancer shows up outside of the breast, like in the bones, lungs or brain, it is called Metastatic Breast Cancer – or Stage IV. This means it is terminal. 90% of women with metastatic breast cancer die of MBC.

I am a person who had early stage breast cancer. I’m both curious and mortified by the fact that when our early-stage treatment is over, we often leave our metastatic sisters behind. (Note: men can get breast cancer too. My pronouns are female in this piece, but what I say here applies to all genders).

Death is a cold hard fact that I didn’t allow myself to think about before I got cancer. I naively thought breast cancer was treated at the cancer hospital and voila! It was gone. I did not know that for one in three patients, it returns in metastatic form.

Nearly 30% of women have a recurrence of breast cancer that is metastatic. Another 6% are diagnosed metastatic “de novo,” which means their initial diagnosis of cancer is metastatic. So that means roughly 36% of everyone who gets breast cancer becomes metastatic or terminal at some point during the course of their disease.

One in three. That’s a lot of people dying. This is one Canadian every 2 hours. 

Metastatic cancer has been called ‘misunderstood’ or ‘forgotten.’ And why is that? It comes back to death. We do not want to talk about death. So we leave those who are dying behind.

I’ve seen these fractures in communities before. When my son was born with Down syndrome, we lost a number of friends and family who could not ‘deal’ with his diagnosis. Then when he was five, I watched in horror as our own Down syndrome community abandoned a mom whose son with Down syndrome was diagnosed with leukemia.

Now the rate of childhood leukemia for kids with Down syndrome is ten times the rate of the regular population. So leukemia weighs heavily on our minds when our kids are little.

But for our own community of moms – many of us had been abandoned when our kids were diagnosed – to leave one of our own families? This mortified me.

What are people afraid of? Death. This young boy with leukemia represented our biggest fear. So instead of supporting this family in their pain, people ran away as fast as they could. They could not turn towards this family’s pain because they represented their biggest unspoken fear – that their child would die.

This happens too in the cancer world. In our rush to ‘put cancer behind us,’ we abandon those who live with metastatic cancer. So much so that Shelley tells me many women with MBC are not welcome in lower stage breast cancer support groups.

I represent the grim reaper to them – the manifestation of a future they don’t want to imagine. -Susan Anthony, MBC Advocate

That means women with MBC end up isolated and alone. Teva Harrison beautifully captured this sentiment in her book In-Between Days. Teva died on April 27, 2019 of MBC at age 42. I’ve shared the video she made for the website MBC Time at the top of this post.

The metastatic community has struggled to get traction in advocacy, organizing and fundraising because they keep dying. This sounds harsh but it is true.

Shelley believes the only way the MBC community will be able to effectively address the disparities in research funding and multiple challenges of living with metastatic disease is if early stagers like me band together with women with MBC. There’s also a fracture between young women with breast cancer and older women with breast cancer. As someone diagnosed in her 40’s, in between the older and younger worlds, I have felt this too. The only way there is going to be any progress on metastatic cancer is if we work together.

That means we have to stop running away. Oncologists, family and friends keep telling us after lower stage treatment is finished: ‘get back to your life.’ But the fear of cancer recurring is real. Cancer recurrence is a real thing.

There can also be animosity between diseases. “Some people say your disease gets all the attention, while others say, your disease, your problem,” Shelley shares.

The same is true in the disability community. I’ve heard this about having a child with a disability: your kid, your problem. This is a sad testimonial to our North American obsession with being independent and rejecting the concept that one day we might become vulnerable and need one another.

Shelley has great knowledge about the history and politics of breast cancer.

“During the birth and evolution of of the pink ribbon culture, support was often based on the notion of ‘don’t scare the newbies,’” she says.

Women with MBC scare the newbies. Us early stagers are in deep denial that metastatic breast cancer can happen to us. We think that if we do everything right with treatment and are compliant in following doctor’s orders, our cancer won’t come back.

But it doesn’t work that way, as cancer is too smart for these easy explanations. Shelley believes it’s unlikely MBC will be “cured” but will be controlled one day as a chronic disease. There are many environmental and genetic factors at play. Sometimes random shit happens to clean living and otherwise healthy people.

“Research is also looking more closely at ‘prevention’. Preventing MBC is preferable, but what about those living with and dying from MBC right now? Have we become expendable?” asks Shelley.

It is in everybody’s best interest to support MBC research. Shelley tells me only around 7% of research funding raised for breast cancer is directed to MBC research. That’s a low percentage for a disease that will come back to haunt more than one third of everyone diagnosed with breast cancer.

People with MBC are often left feeling like collateral damage, Shelley says. I believe there should be no woman left behind.

In the research field, organizations like Metavivor (USA) are focused on directing 100% of donations to fund MBC research. The MBC Project recruited participants for their international open access research project through social media. Five years ago there was a handful of conferences addressing MBC research, in 2019 there are regional, national and international conferences.

Through advocacy, MBC Patient Advocates like Shelley have emerged as a powerful voice, demanding equitable research funding and expanded participation in clinical trials, as well as promoting improved patient engagement at all levels of medicine. There is still much to be done.

I listen carefully to Shelley. She carries so much wisdom that I’d be a fool to turn and run away, even though I am afraid of death too. But Shelley doesn’t scare me. She’s articulate, passionate and has led a fascinating life, which has included living in Africa. We quickly find a connection over coffee, discovering we both lived in Manitoba for a spell.

She says bluntly: “We are so uncomfortable with hard emotions, but life is painful. Life hurts. Turn towards the pain and face it.”

So what can us early-stagers do? We can be welcoming to our MBC sisters at support groups and in our lives. We can stop treating other human beings like they are contagious. If the thought of MBC triggers our own fears about death, maybe that’s a sign it is time to look at our own emotions and values around dying.

We can support financially too. Shelley and her friend Susan Anthony started MBC Canada to provide information and resources to the Canadian MBC community. They launched their website last fall.  There’s a donation button on the site. I just contributed $50. It is easy to do and took me two minutes. It isn’t much, but it is something.

Shelley wants to keep the website going and organization growing, but Susan died last October within weeks of their website launch. Shelley is having a tough time keeping up the site while living with MBC herself.

Every little donation helps. MBC Canada’s focus is supporting the Canadian MBC Community by providing information, resources and services to MBC patients. They’re committed to directing donated funds to the benefit of the MBC Community, not to salaries and administration costs.

To move forward, first and foremost they need people. They need to raise funds to start their assistance programs. They also need Advocates familiar with MBC. If you can give your time, please connect through this form on the MBC Canada website.

Always research carefully before you give money – many of the more mainstream cancer organizations focus on lower stage awareness and put very little money directly towards metastatic disease support and research. Canadian Cancer Society donations targeted for MBC Research should be marked “for metastatic breast cancer research” on the payment instrument. Funds raised at CIBC For the Cure Walks can now be directed specifically to MBC Research by incorporating the word “Metastatic “ into the team name.

I invite those without cancer and those with early stage cancer to consider these questions: Why are we afraid of people who are dying? Is it that we don’t want to look at our own fear of dying?

Perhaps, as Shelley tells me, looking at our own fear will be the one thing that will actually set our hearts free. I don’t know about you, but I’d don’t want to live out the rest of my days in fear. I want the kind of heart that’s been set free.

As my book publishing date inches closer, one thing that I am committed to going forward is to amplify other voices through my book, this website and my Twitter feed.  I take the lead from people like Marie Ennis-O’Connor and Nancy Stordahl, both women who had early stage breast cancer and who are committed to supporting women with MBC.  The power lies in all of us doing what we can do. This is what I can do. What about you?

This essay is dedicated to Shelley Snell, whose wisdom and generosity informed this essay.  It was written in memory of so many women who died of metastatic breast cancer.  They were deeply loved and are sorely missed: Teva Harrison, Susan Anthony, Nina Riggs, Lisa Bonchek Adams and Beth Caldwell among thousands of other women.  And of course, the godmother of us all, Audre Lorde.  

 

 

 

 

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2 thoughts on “what are we afraid of?

  1. Katharina Staub says:

    “So uncomfortable with hard emotions.
    Life hurts…turn towards the pain and face it”.
    A wise woman indeed.
    We don’t do a good job teaching children about hard emotions. When babies are small they are all hard emotions. It’s like adults “ unteach” them as children mature.
    All I can say is that living in the moment is all we’ve got.
    Katharina

  2. nancyspoint says:

    Hi Sue,

    Brilliantly said. All of it. There is such a hesitancy to talk about death and emotional pain in general. Pain is just as much a part of life as joy. As is death, of course. Sure, it’s hard to face and talk about the hard stuff, but that’s all the more reason to do it. We needn’t hide from our fears.

    I agree that fear is part of the reason why MBC has been a swept-under-the-rug topic for so long. Thankfully, this is changing, but there is a long way to go. It takes a long time to unwind all the pink shenanigans that has gone on for years too.

    Like you, I believe we all need to come together and work on achieving the common goals of better understanding why BC metastasizes, how to stop it, or at least slow it down when it happens and, of course, how to prevent metastasis (and breast cancer, period) in the first place. Ultimately, advocating for those with MBC helps us all. Regardless, it’s the right to do.

    I will be an ally for those with MBC. Always.

    I am sorry so many friends and family abandoned you when your son was born and that so many abandoned your friend when her son was diagnosed with leukemia. Fear is a powerful force, as you know so well.

    Thank you for this post and for your advocacy and thank you so much for the mention. I’m humbled.

    “The power lies in all of us doing what we can do.” Indeed it does.

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