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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  • Thank you for posting this. My husband was diagnosed with stage 4 pancriatic cancer almost 14 months ago. It consumed our lives. Reading this makes me feel less alone.

  • Hello, I wanted to tell the story for my Mom age 75 when diagnosed with cancer who passed away March 2019 from Stage 4 bladder Urothelial Carcinoma cancer. I will give an overall story of what happened to her and would welcome comments on what you think. Hope there’s not a limit on how long my story will be. Maybe my story can help someone you know or at least not make some of the same mistakes I feel we made……
    So my Mom always seemed to have a problem controlling her urine. She had a urologist start treating her, he gave her some pills Sept 2017 and within a few weeks she could not urinate at all….Doctor said discard all the pills he gave her…not sure what they were….. Well after about 6 multiple visits to the Tampa Emergency room, where she was told maybe she had gall/kidney stones and had to use a catheter to drain her urine, she was diagnosed with bladder cancer Jan 21. Urologist told me it was an aggressive type of cancer. She is wearing a Foley Catheter all the time at this point. So they put her on that BCG treatment they pump into her bladder. Why do this for what he termed an aggressive cancer, not sure. April 2018 They take a biopsy again and now it has spread pass the bladder wall. Now we are have her taken to #6 Cancer Hospital in the US, Moffitt Cancer Center in Tampa. They say cancer has spread to bone,lung,liver. No point in removing bladder since it has spread to bone. Put her on 2nd level of chemo, she could not take normal chemo because of her diabetes. Also she was at 80% chemo dosage starting beginning of June 2018. After 2 or 3 month, scans showed tumor shrunk about 40% and my Mom had very little side effects outside nausea/loss of appetite the days she got chemo. They kept her on chemo until mid Sept 2018, did not show much improvement, cancer stayed about the same after initial shrinkage…i think it was undetectable on the liver. We also removed her catheter, where she was urinating on her own without the catheter. So Oncologist says let take a break from mid sept to next test in Dec….this was a mistake i think waited too long for what was an aggressive cancer, but you do you do have to let body recover from chemo, so who knows. By mid Nov, My Mom started having back pain again, which went away while on chemo. Got results from her scans in mid Dec, said tumor in liver was 2cm. I say lets get her on the Keytruda ASAP, which was the plan after the chemo anyway. So she get’s the drug Keytruda end of Dec, and starts having intermittent zombie like symptoms is best I can describe it 2 days later. She would be in a daze for a few hours and then snap out of it. We call Moffitt, they say we are not equipped for Emergencies, take her to nearest hospital…..this was a mistake. She was in an ok condition where we could have brought her to Moffitt and found out later, Moffitt does have an emergency room that could have taken her in, we figure oncall doctor/nurse blew us off even though Moffit gave her the Keytruda. Took her to Tampa General where they kept her for 2.5 weeks to treat her for a urinary infection where she also had some memory loss and slight swelling of brain. Was it from Keytruda/UTI/Tumor growing in liver…who knows??? Tampa Gen had little experience with people given drug Keytruda and Tampa General nurse said she seemed to show chemical imbalance. Tests did not show this. They released her to Rehab/nursing home, and my Mom falls first night there, trying to walk to the bathroom, breaks collar bone. If she had catheter, might have been avoided who knows, but she was never mentally the same after her fall. 5 days later she has a full blown seizure, bit tongue…ect. Bring back to Tampa General, treat her for Urinary Infection again, kept her there for 10 days and put her back on Foley Catheter. Now we finally get her to Moffit for scans end of Jan, find out tumor in liver has doubled to 4.2 cm from previous test in Mid Dec. Moffit Doctor refuses to give her anymore Keytruda, says she has less then 3 months to live. After a gradual decline,wheel chair bound, dementia type symptoms Mom passed away Mid March from liver failure. I am not hear to bash her doctors, hospital or whatever. Could she had lived longer, maybe. And I would have given her Keytruda again, I’ve read so many positive things about it. I also may have been too optimistic after her doing so good with the chemo initially. The whole thing was an emotional roller coaster downhill and I can’t imagine what it was like for my Mom. Thank you for reading my story and I will respond to any questions. I miss you Mom!!!

    • I saw comments about cost. So 1 dose of keytruda was 64k covered by Medicare, assuming that’s what Moffit/Merck charges. Also when she fell, rehab/nursing home said she was making any progress so would have to kick her off medicare per insurance company, where you either take your mother home or pay $336/day for rehab/nursing home. I mean how much progress can you make with a growing cancer and a broken collar bone!!!!

  • Thank you so much for your article. I have a sister who is dying from cancer and she is as blunt as can be. She puts off the doctors when she still refuses to take any medication and refuses to be treated like a piece of meat. She is still alive and still shovel snow, clean the house and anyone meeting her would never know she is that sick. The cancer has metastasized to the lungs, breast and vertebrata (bones). She told the oncologist to take a hike when he offered her non proven TEST cancer treatments and she just told the “lung” cancer specialist that her demands on bringing new students (6 times) for pumping water out of her lungs for training was making her uncomfortable. The doctor told her that she was in a famous medical school and should accept helping new “doctors” become professional. They made her feel guilty for just asking to have a person a bit more experienced with the needle going to her lungs since she was in terrible pain (Sherbrooke, Quebec, Canada). They offer to drug her instead. She has had 5 other similar treatments in the past 2 months and can now recognize a very very new doctor to someone who has done at least two or three treatments. She got mad since she felt like she was being treated like a piece of meat. Not a person who has barely weeks to live. She just told the senior doctor to go pump sand and has refused to get another appointment. As Pat she is direct, blunt and has always been a very independent individual. As a woman she is outside the norm and refuses to abide by “what” a cancer patient SHOULD look like when they are dying with non-curable stage 4 metastases cancer. How much more blunt can you be. Life is short and don’t let anyone tell you how to live your last moments. Hurrah for her!

  • Mr Braswell. I can’t tell you how sorry I am. I just lost my sister whom I love very much. Hard for me to imagine my life without her. I am in anger mode. I am angry because millions , if not billions of dollars go to drug companies who are just interested in their bottom line. People are being bankrupted by this disease. Most people are scared to death to get it, so often it seems they put their head in the sand. What we do need is PREVENTION! Most, if not all cancers are caused by viruses. We have the technology to develop vaccines to prevent people from getting cancer in the first place. Currently there is a vaccine for Hep B which is causative (they say “linked to”) liver cancer, and the HPV vaccine against 9 strains of human papilloma virus causative for several genitourinary cancers. Merck made the vaccine as sort of a “peace” offering after one of their drugs killed a few patients and was pulled from the market. Oh, and by the way, medical science has known the cancer role of these viruses since the 1970s! The reluctance of drug companies to make a vaccine against the whole group of cancer virus, the Herpes group, is unconscionable in my view! The main one, a strain of Epstein-Barr is causative for several cancers maybe even the one you are afflicted with. It causes Infectious mononucleoris, but also cancers – lymphomas, sarcomas, etc.
    When nearly everyone is afflicted with this dreaded disease, maybe, just maybe, people will rise up to demand vaccines. Yes, the chemo drugs are keeping you alive, but how sad that perhaps your disease may have been prevented in the first place.

  • I also have terminal stage 4 colon cancer and at the age of 35 was told I would be dead within 6 months. I have a wife and 3 small children. Cancer took away my business, our financial independence and our feeling of security and replaced it with worry fear, pain and more fear. I have never been a quiter so I pushed past all my doctors expectations and have survived for 2.5 years now. I no longer fear cancer, I laugh at it. I am the boss of it. And even though it might kill me before something gets me it doesn’t matter. Even though my social security leaves us with only $50 extra each month , we still eat, we still stay warm and dry somehow. But this article is correct, families facing this feel alone and abandoned. I know we do. But if I can just secure my children and wife before I pass I would gladly pull the plug on myself. Everyone has abandoned us, even my own mother used us and took advantage of us when I got sick. Cancer showed me how cold and heartless the world is. Because if it’s not you, no one cares.

  • In the hospital I met an Angel, and her name was Sarah. She was in the room next to me and she had leukemia too. She was a very sweet girl and we had fun together, she helped me not to feel as different. We shared a lot of things like pizza parties, we played in the art room and we gave each other the drugs that were impossible to take. It seemed much easier to swallow when she gave them to me, compared to 5 nurses holding me down while they poured it down my throat. Out of all my friends on the fourth floor she was the best. She was an amazing friend even if she was only 3.

    But eventually all angels must go back to heaven. And about a year later my angel Sarah went back to heaven. She died in her sleep, because the doctors failed to find a match for her bone marrow transplant. It made me sad just to look at the empty bed on that fourth floor in room 420. Although it was 10 years ago that she died, I will always remember her because she will forever be in my heart.

    Sarah’s Story (Murder In Oncology)
    By CHRISTINE MULVIHILL

    My name is Sarah, I am but 4
    Trapped staring at the ceiling and at the floor
    I don’t even understand what I’m fighting for.

    I never did wrong I always did what was right
    Now it hurts so bad I can’t sleep at night.
    Why is my mommy crying what is going through her head
    I’d give her a hug if I was allowed to leave my bed.

    My stomach is starving but cannot eat
    I want to get up but I’m much too weak
    I lay down my head and drift off to sleep
    I pray to the lord for my soul to keep.
    Then I stop breathing and through the dark I see a light,
    My name is Sarah and cancer murdered me tonight.

    Read more at http://www.murder-in-oncology.com

  • This is an excellent article! It’s so crucial for our reluctant “modern” society to seriously consider the void that exists regarding dying and the terminally ill.

    Thank you for being such an active voice, and for all the work you do. You’ve inspired me, and others, more than you know.

  • Hi thanks so much for your story … and I am so glad to eventually find someone who says it how it is … no sugar coating. I have started an NPC in South Africa and as you say everyone only paints this great survivor picture and not the reality of what the person suffering and their family really have to endure. Please send me your email address I would like to chat further with you.

    Regards

    Jenny

    • You’re one of a few people interested in what cancel is truly like. What if it is not a happy ending? Should we not prepare for that too. Christine did prepare for both endings and was well prepared to die when the time came. And because of her I was also well prepared.

  • My daughter talks about the difficult stuff in her website, here is an example;

    What If Faith is Not Enough
    By CHRISTINE MULVIHILL

    When reality finally hits you it hurts
    When the truth comes into focus it’s brutally painful.
    Hope isn’t always enough
    It’s not always a happy ending.
    What happens when faith is not enough?

    I get hot flashes
    My depression splashes
    My soul is cold like stone,
    the fear of being alone.
    So now I lay me down to sleep
    I pray you lord my soul to keep
    Don’t let me die before I wake
    I pray you lord my soul do not take.
    I barely have a past
    And may have no future
    Empty pages of a book
    A story left unwritten
    A life left unlived
    A hope left in the dust.
    Please don’t take me yet
    Your mercy you won’t regret
    I am down on my knees
    Begging you please
    Don’t take me away.

    At night I dream a misty graveyard
    A tombstone the name I cannot see
    A flashlight in the darkness
    A figure so lifeless I cannot breathe.
    Then I awake not as fearless as I may seem.

    If this is my future
    And if it comes to pass
    And this breath be my last
    Then this thought to you I cast.

    What if faith is not enough?
    Then life would be rather tough
    With nothing to believe in
    And nothing to justify
    Nothing to keep you sane
    Nothing to grasp when you fall
    You will have nothing,
    nothing at all.

    Sometimes that is how I am
    Falling in the darkness
    With nothing to take hold
    This feeling leaves me cold
    hearted, soulless, empty.
    All I feel is the pain of being unreal
    No one knows how this life feels,
    when you are so lifeless.

    So now I lay me down to cry
    I pray you lord you can’t let me die.
    Now I lay me down to sleep
    Close my eyes without a peep
    Never to be opened again.

    Your body goes warm then cold like rain
    Slowly your body numbs,
    to your fingers and your thumbs.
    As your body stops working, you feel the cold mist of death
    And peacefully while you’re sleeping you take your final breath.

    Read it all at http://cinder.smulvihill.com/

    At one time it was called murder-in-oncology.com but many people complained so I changed it, but the URL is still there

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