During the 11 months when my husband, Ahmad, was dying of bladder cancer, few people wanted to hear how he was truly doing. They wanted to hear about hope, courage, and positivity, not about how Ahmad was unlikely to survive or his ruminations on how to live well while dying.

I don’t blame them. Before I experienced it, I wouldn’t have wanted to hear it either. The problem was that we couldn’t escape it because his cancer overtook our lives. The only way out was through. And “through” meant living with the knowledge of pending death and its attendant difficulties and practical realities. I often felt I should candy-coat the story for others to spare them the pain of it, though I tried hard not to.

This is where many people with stage 4 cancer (also known as advanced or metastatic cancer) and their families find themselves: isolated and worried about being a “downer” to everyone else. They are taunted by the excitement of the latest breakthroughs — immunotherapy, precision medicine, gene therapies, and the like — only to learn that none are deemed suitable for them. People with metastatic cancer know all too well that cancer kills people every day.

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While our larger cultural conversation around cancer focuses on survivors and miracles, we don’t hear the stories of dying cancer patients — they are often too sick or too busy to tell them. The stories of the dead are lost. These aren’t stories filled with smiling athletes, gritty thumbs-up poses, and fighter metaphors. They are, instead, about the realization that this disease will kill the storyteller.

Since Ahmad’s death, I have attended cancer conferences and become a bladder cancer patient advocate. At the American Society of Clinical Oncology meeting in 2016, I met Beth Caldwell, a co-founder of Met Up, an outspoken metastatic breast cancer advocacy nonprofit inspired by the AIDS activists of the 1980s.

Beth is blunt. That puts off many in the cancer world, but I find it refreshing. Met Up’s goal is simple: saving the lives of people with metastatic breast cancer by telling the stories of the half-million people around the world who die of this disease each year. The goal of the organization is to direct more research funding to metastatic disease. To its credit, Met Up does not accept pharmaceutical funding support. This allows the organization to speak freely about the astronomical prices for cancer drugs.

A civil rights lawyer, blogger, and mother to two young children, Beth was diagnosed with breast cancer at age 37 in 2014. She has been in continuous treatment, yet now the cancer has spread to her brain.

“There is such a culture of positivity around breast cancer,” she said. “People ask me when I will be done with treatment and I tell them ‘never.’ I will die from this.”

She takes issue with the word “survivor” because she knows her breast cancer will eventually kill her. I take issue with it, too — Ahmad didn’t survive. I suppose I, the caregiver, am the survivor. Most discussions about survivorship focus on living life after a cancer diagnosis. Beth calls herself a “metster.” I don’t have a word for me.

The stories that no one wants to hear may be the ones that help inspire change.

The bladder cancer patient community was recently shaken to its core by the unexpected death of Pat, a longtime advocate. Like many women with bladder cancer, Pat was misdiagnosed for two years before finally being diagnosed with bladder cancer that had spread to nearby lymph nodes (stage 3). Her cancer should have been caught sooner — it isn’t uncommon for women to be misdiagnosed with multiple urinary tract infections before the bladder cancer is identified.

Pat followed the treatment protocol for her cancer, was eventually deemed cancer free, and went on to become a super-advocate for other women newly diagnosed with bladder cancer. She advocated vociferously on their behalf, educating the public about the symptoms of the disease and urging women to be vigilant.

Pat was known to spend hours on the phone just to help one terrified patient. She was one of the first to welcome me, and many others, to Inspire’s online bladder cancer community, treating all of us with compassion.

Pat reached her five-year cancer free mark a couple years ago and continued to be a supportive voice for others with cancer. But around year 6 1/2, she began to have hearing problems and, soon after, memory problems. The bladder cancer had metastasized to her brain and she died in July, roughly seven years out from her initial diagnosis and two years out from the coveted five-year “all clear.”

No standard follow-up protocol would have caught this metastasis. And that has, understandably, struck terror among bladder cancer patients.

It is the stories that terrify and sadden us in which we can find questions to inspire change. Should bladder cancer protocols be modified to better catch early disease? Can we identify who might be at greater risk for less-common metastasis? Should bladder cancer patients have full body scans instead of just abdominal scans as part of their follow up? Why isn’t more breast cancer funding dedicated to metastatic disease, when that is what kills?

Sometimes the storyteller is blunt, and shocks us with harsh realities. Sometimes the storyteller is the medical trail of someone who was expected to live but who died anyway.

I am now married to Tim Louwers. We both lost our first spouses to terminal illnesses and have lived the isolation of that experience as well as widowhood. Inspired to create a digital space for storytelling that explores death, dying, and mortality, we founded the nonprofit Months To Years. It will also eventually serve as a clearinghouse for resources to help spouses of the terminally ill.

Our goal is to counter the cultural silence around death and dying. All of us need to hear the stories we’d rather not hear. Maybe they will, in small ways, inspire big questions and positive change.

Renata Louwers is a writer, a volunteer patient advocate with the Bladder Cancer Advocacy Network, and the co-founder of Months To Years.

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  • I am disgusted with the medical profession for not doing more for PREVENTION.
    Cancer is a multi-billion (maybe trillion) dollar industry worldwide. The money goes for salaries, and drug development, hardly any comparatively, for anything else. Human Papilloma virus (HPV) has been known as causative (they like to call it “linked) for several cancers. NOTHING had been done about it for about 40 years! Finally, a vaccine around 10 yrs ago. Another cancer-causing virus (oncovirus) is Epstein-Barr, causative for Hodgkins disease, and others. Herpes virus 6 for Kaposi’s Sarcoma; I could go on and on. My point is that it is VERY likely that breast cancer, and many other cancers are caused by viruses as well. The whole Herpes group of viruses are cancer-causers. That said, WHO is looking to find all the cancer-causing viruses so we can develop a vaccine? The answer is NOBODY.
    It it more lucrative to treat than to beat. When will the populace finally rise up and stop giving money to drug companies? When will a research group declare they are looking to prevent, and need donations? I have no answers, but cancer is everywhere and it needs to stop!

  • I was just a young child when I was first diagnosed with leukemia. A young girl who’s fate would have brought her to the grave. But look at me now. I am standing here in front of you and although I may be far different from all of you on the outside, I am still a person on the inside. My physical scars in time will heal, but my emotional scars will remain forever.

    Even after I relapsed and had to start all over again, I promised myself to keep on fighting until I was just like everyone else again, until I could wake up in my own bed and run free without that stupid IV. No matter how painful a struggle no matter how long, I would have fought to eternity to be healthy again.

    I Will Not Die

    I used to think the world was fair and that life works itself out
    But now I’m confused and my heart’s filled with doubt,
    The threads of this dream are starting to unwind
    I’ve come to learn the world is unjust and fate is unkind.

    I always thought you were real but my perception was blind
    You’re blurring my vision and playing with my mind,
    Slowly like the sands of time you’re ripping away at my soul
    You’ve taken all I have, all that makes me whole,
    Driving myself crazy trying to fill that empty void
    But I can’t pull it together, my confidence you’ve destroyed.

    You’ve taken my happiness and replaced it with hate
    So much hatred and anger I just can’t take,
    You’ve poisoned me enough, I’ll break down and cry
    But never will I give up, no I will not die.

    You will not take me down, you will not conquer me tonight
    I will not lie down in my grave I’ll stand up and fight,
    I maybe bleeding but take off that smile if you think you’ve won
    A knife through my heart is nothing, the battle’s just begun.

    There is warrior inside that you failed to see
    A strength you missed while you were judging me,
    She will not give up as easy as you think
    I’m drowning in depression but she will not sink.

    Through all the pain and criticism she will stand tall
    When pushed passed the limit she will not fall,
    I will take whatever you give to me
    And with god by my side I will be free.

    I won’t bow down to you and just take the abuse
    You can’t break my faith, don’t try there’s no use.
    So you can turn that smile into a frown
    Because this is one girl that just won’t go down.

    About the author.

    My name is Christine Mulvihill and I am a 15 year old childhood cancer survivor. I thought that after I was discharged from the hospital everything would be normal or even sort of normal, but that’s not how this story goes. You see, somewhere through all this my soul has been scared and a curse cast upon myself, a curse I will take to my grave.

    My story begins at the age of two in the Children’s Hospital of Eastern Ontario (CHEO).

    I saw the tears in my mother’s eyes and the concern on my father’s face. I had no idea why or what was happening. ”what’s going on momma” I asked her. She didn’t reply, she just held my hand and started to cry.
    http://www.murder-in-oncology.com

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