D

uring 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.

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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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  • Thank you for sharing your story and perspective. I am the parent of a child diagnosed with cancer at age 9; worrying about my child’s health continues these 20+ years later…

  • A very moving, emotional story. One that strikes close to home. Cancer is looming over my life.

    Mother died slowly and agonizingly from stomach cancer when I was 19. I was a CNA and was her caregiver for the duration. This was long before Hospice Care and Home Health services. Pain management was minimal as the doctors were abhorrent for her to get addicted rather than alleviate her pain. Her death was simply a relief for me and her.

    Her paycheck that disappeared severely limited my college education. Had to work my way though.

    3 packs a day caught up with my father at the age of 66. Lung cancer.
    Strangely, his Oncologist did not believe in Hospice services. My Stepmother and Dad fired him and sought a competent doctor.

    My stepmother died from a re-occurrence / metastasis 9 years after the original onset.

    If I don’t die from something else first, I have no doubt cancer wlll be my fate as well. When that happens, I have told my wife and family that I may decline “treatment” to delay the inevitable. Also told them that I consider suicide and one of my management options and not to interfere in any way. My advance directive is not only Do Not Resusitate but also includes Do Not Treat and medical condition. (flu, UTI, Pneumonia, etc. ) My wife does not want the job of managing my Advance Directive. Simularly, no one in my immediately family wants the job. So I have an assigned advocate that will consider my family’s wishes but will follow my instructions to the letter.

    I’m 68 now. Living the good life while I can. Every day is precious.
    Carefully planned irresponsibility is the key to happiness.

    My

  • Thank you for this article! Our 34 yr old daughter died in 2016 of metastasized triple negative breast cancer. Because of all the success in treating BC, friends and family could not grasp how little was known about TNBC, few research dollars at that tome( more now a mere year later), the low incidence in Caucasian women and low survival rate. Just returned today from saying goodbye to close friend in Boston whose lung cancer has spread to her brain, and held the hand on another dear friend the day she died in March from colon cancer, another one people think of as very treatable these days. These 3 losses in 16 mths have been very difficult for me and for my family. So, I appreciate all you had to say. Beth Morgan

  • Agree, we have to talk about the reality of cancer and how not all the stories are ‘positive’. Learning how to cope and to die with dignity is what we will all learn. Thanks for sharing this important viewpoint.

  • Well said!
    Unlike any other illness, a cancer diagnosis forces people to face death and acknowledge that their lifespan is finite. There are equally deadly diagnoses but for some reason cancers stand out in this regard.
    I have seen a few people acknowledge their prognosis without the terror experienced by so many. Society at large, medical culture and well-meaning advocacy groups encourage the notions/ metaphors of fighting a war and survivorship which just do not help those with incurable disease. Terrified patients eagerly sign on, looking for any ray of hope and self-determination. Good support for the incurable is otherwise hard to come by outside of hospice, which is still viewed as “giving up”. Nowhere is this more evident than in the responses to John McCain’s recent terminal diagnosis.

    • During a particularly difficult time during her treatment for glioblastoma my wife wrote: “I am not fighting or battling cancer, I’m just putting one foot in front of the other and moving forward“.

      And that is what she did, every day, with strength and grace. She did what ever was necessary to make it through one day to the next.

    • Admirable without a doubt. Many people just cannot manage her acceptance due to overwhelming grief and fright. I only hope when my time comes I’ll manage like she did. And the powerlessness and helplessness of loved ones is a tremendous burden itself. One can only say I love you and I respect you (and act out of those).

  • “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.”

    i really don’t understand the point of this article. why exactly do all of us need to hear these stories? and secondly, what positive change will they effect? is there not sufficient funding for cancer already?

    • Are you, your family and all your friends, totally comfortable talking about end of life issues? Do you all have wills, durable powers of attorney for health care, funeral plans, guardians lined up for minor children? And about cancer research, would it surprise you to learn that most researchers have to spend more of their time lining up funding and dealing with the paper work related to that than they spend in actual research? Cancer is not just one disease. Breast cancer is not just one disease. Many cancers are very hard to manage. Side effects of treatment are so hard on some that they decide to stop treatment. Some stop treatment because of the price. When I told people that I have terminal breast cancer, some could not make eye contact with me. There is a lot of discomfort out there about death, dying, terminal illness.

  • First, my uncles died painfully of cancer, so I understand the issues.

    Second — there are plenty of books on death and dying — Nuland’s “How We Die” is a classic. And the pioneer, Kubler-Ross. IMHO, death is hardly shocking.

    Third — why optimism? Why not? Why surrender and “go gently into that good night?”

    As to funding — cardiac issues impact 300% more people than cancer. They’re also important. And contrary to Bernie Sanders, there is not a bottomless pit of taxes to draw from.

    • You said, “Third — why optimism? Why not? Why surrender and “go gently into that good night?””

      I am on my third major cancer, this one has no cure. The emotional earthquake over having an incurable cancer is far, far worse than it was with the two that were potentially curable (14 years out for one, 7 for the other). Not having optimism and surrendering are two completely separate things.

      The reality is that when a cancer has no cure optimism isn’t warranted because unless you get hit by a bus first likely you WILL die of that cancer. The burden put on people to be optimistic is uncalled for. No one does that to folks who have had strokes, heart attacks, etc. Why cancer?

      Surrendering (eg stopping treatment) is a personal decision of when enough is enough, when hospice is a better choice, when you want to preserve at least a few dollars for your family to live on vs living 1 month longer, when you’d like to take that last vacation and you can’t if you are doing chemo… I have watched several family members decide to stop treatment for very rational reasons. Did I want them to die? Of course not. But I understood why they made the decision they did. That is something very real to those of us who have cancers with no cure.

  • My wife died just over a year ago from a glioblastoma. She even participated in a clinical trial for an immunotherapy. She was otherwise young and healthy and lived with her disease for over 3.5 years. We were fortunate to have great medical care and amazing community support. But the apparently never ending news stories talking about all the major progresses in cancer treatment. For glioblastoma there are simply no good options and only one ending.
    https://wordpress.com/posts/anatomyofabraintumor.wordpress.com

    • First, I want to tell you how sorry I am about your wife. My sister has pancreatic cancer, not quite stage 2. It is terrifying. Cancer seems to be the new chronic disease worldwide. I have spent over 40 yrs on the science side of the medical profession. I am angry because more and more evidence points to microbes as the causative agents of many cancers. Yet, little research is being done, and when it is, it is poorly supported. Yes, while we want our cancer-victim loved ones to live longer lives, and support new drugs to make that happen, prevention of the disease (more on that later) in the first place needs to begin with fervor. How will we protect the next generation? Vaccines! For example, the Herpes group of viruses is KNOWN to cause several cancers. Why then, do we NOT have a vaccine yet?? Human papilloma virus (HPV) is also the causative agent of a number of urogenital cancers, and possibly retinoblastoma of children (theoretically acquired during vaginal birth ). It took over 40 yrs to produce a vaccine! There is not a lot of money in vaccine production. It is much more lucrative to treat associated cancers with pricey blockbuster drugs. Wouldn’t it be wonderful if your wife’s cancer could have been prevented in the first place. The “war on cancer” has been lost! It is time to find out WHY this is happening, and increasing. Virus is capable of turning off protective genes, and allowing the cancer genes (oncogenes) to grow out of control. It is time to advocate for causes and prevention, and to stop blaming cancer everything from diet to lifestyle.

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