machado: another world cancer day, yet cancer is still that dark horse nipping at our heels
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how many ways can we stop people from dying? getty
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one september afternoon fifteen years ago, i placed a small white pill bottle where i sat at the dinner table. it needed to be taken with food — “after dinner seems to work best for most” the doctor had said, recommending that i keep it where i eat so i wouldn’t forget (how could i forget?).
after listing the many not-so-great things that could happen after i took it, i asked if i could wait a bit before starting the 30-day regimen — i needed a moment to think and prepare. a rash i could handle. hair loss, vomiting and tingling in my legs seemed like the kind of things one should have a moment to brace for. he gave me two weeks.
and so it began, my family’s relationship with the medication that would keep me alive. the next few nights, the bottle sat at the table, along with my family, as i piled soft food onto the tray of my one-year-old son’s high chair so he could smush it with chubby hands. the bottle, wrapped in a bright yellow warning label that screamed it was a cancer medication, was an unwelcome and foreboding dinner guest. for my kids though — my daughter was three — it was simply “mommy’s medicine” to help her blood which was sick. it was neither scary nor strange for them.
cancer remains the dark horse nipping at our heels
the following year, feb. 4 — world cancer day — held a different significance for me than it ever had before. it was a celebration of life and luck, for sure, but also a call to action to raise awareness of things like the need for better screening guidelines, earlier diagnoses, education so that people knew what signs to look for, more funding to support treatment research, access to clinical trials and affordable medication. i had seen all the shortcomings firsthand, but also reaped the benefits. my story was the perfect example of how funding innovative therapies makes a difference.
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as the years passed, normalcy and health crowded the bottle out of mealtime. with the habit firmly formed, i tucked it away in the cupboard. still, as the kids brought their dinner dishes into the kitchen, they’d barely bat an eye as i noisily pushed a large orange tablet out of its foil blister pack, filled a glass with water and gulped fast so it didn’t get stuck in my throat.
then, like now, we would talk openly about cancer. when they asked about the bandage on my lower back, we’d talk about bone marrow biopsies. they came to my appointments and told riddles to my oncologist (“what did the doctor say to the banana? … how are you peeling?”). and when someone we knew died of cancer, we’d go over why it would hopefully be different for me and how maybe when they grew up, everyone’s cancer would be like a simple infection — treatable with medicine. we sometimes even dared to hope that one day, there would be no such thing as cancer.
it’s 2023, and cancer care is once again failing the wellness check. getty
well, it’s been almost two decades, and though there have been some great strides made in the way cancer is diagnosed and treated, it remains that dark horse nipping at all of our heels. and this year, like last year, and the year before that, and even before that — heck, just like 15 years ago — the call to action for our leaders is the same: appropriate screening guidelines, earlier diagnosis, better disease education, access to medication and trials and funding for research and development.
the message is starchy, boring and old, and consistently ignored by decision-makers — or at least pushed to the side — despite the fact that literally, it’s a matter of life and death. still, advocates persist, mobilizing people, educating them and firing them up so that they will use their voices — and words — to push policy in a better direction.
how many ways can we stop people from dying? one is messaging. in 2019, the u.k.- based pancreatic cancer action launched a #pancreasnotpenis campaign after a survey found that almost a quarter of people in the united kingdom identified the pancreas as a penis. there was also coppafeel’s “grab life by the boobs” initiative, ovarian cancer canada’s “ladyballs” campaign, and testicular cancer canada’s “check your furballs” movement.
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but despite the efforts to grab attention to drive change and awareness, it’s 2023, and cancer care is once again failing the wellness check.
yesterday, there was a large gathering to celebrate the life of an old friend of mine, darin diehl — it would have been his 63rd birthday. i met darin early in my journalism career, we worked together for awhile at rogers media. he had joyful, sparkly eyes and a great laugh — the kind of guy who always made himself available to help others. as the years passed, we changed jobs, but chatted occasionally on linkedin about our kids, work and one of his favourite things, his dog.
it’s 2023 and cancer care is once again failing the wellness check
darin reached out a few years ago after a heart attack led to the discovery of cancer in his lungs. it was stage four. though he sounded sombre and serious in a way i had never heard before, he didn’t spend time talking about the seriousness of his diagnosis, or his worries. it wasn’t his style. he wanted to talk research, treatment trials, but most of all, he wanted to use his story of how a heart attack uncovered a deadly disease to help others. and he did, here, here and here.
treatment worked well for darin for a couple of years during which his facebook page lit up with posts about music, friends, family, his dog oliver and travel, each one always with a sentiment of gratitude.
he got quiet after the holidays, and then came a facebook message from his children sharing his passing. it took me some time to send my condolences. not because i didn’t know what to say — i already had in mind the story i wanted to share about how their amazing dad had touched my life in some really, really great ways. but more so because darin was the kind of guy who you couldn’t help thinking he’d be the one to beat the odds — just like my brother and my friend’s dad, and my neighbour’s husband, and that guy in my crossfit class and the man that worked at the local florist shop and a workmate’s wife. i just couldn’t bear to say goodbye to yet another person because of cancer.
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so what’s it going to take to make it stop?
all the stuff that’s already been done year after year, day after day: voices and stories turned up loud; the pain of grief and loss propelling notes of protest to politicians and health-care administrations; writing opinion pieces that are featured in media like healthing.ca; and connecting with others to churn experiences into advocacy.
but clearly, this isn’t enough to get what we need to claim victory against such a powerful adversary, and make it so that in my children’s lifetime, cancer becomes the least of their worries.
the real strength will come from alliances. just as we typically treat cancer by overwhelming it with multiple techniques, each with its own way of targeting the disease — chemo, radiation, surgery, medication — getting the attention of decision-makers is going to take a multi-pronged approach from more than just patients and their families.
imagine the progress that could be made if pharmaceutical companies, advocacy groups, professional associations, biotech companies, industry groups, health system think tanks, media and others partnered to speak out as one about the changes that need to happen in cancer care. imagine if, instead of worrying about optics, market share and succumbing to the unwillingness to play nice with competitors, every player in the health-care system led with their hearts and the realization that we can’t go on like this much longer. it would be amazing.
and maybe then, the tide would finally turn and cancer would be the one under threat, instead of, well, just about everyone.
lisa machado is the executive producer of healthing.ca. follow her @iamlisamachado.
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