Like the vast majority of long-term cancer survivors, my story has no “happily ever after.” I survived bone cancer in my right leg over 28 years ago, yet being declared “cancer free” was only the beginning of my journey.
When I hear about cancer in the news or on my Facebook feed, the stories are always heartwarming tales of courage and strength or else tear-jerker stories of devastation and defeat. There are no uninspiring cancer stories or cancer stories with messy, confusing, ambiguous endings.
The in-between, unfinished cancer stories—neither triumph nor tragedy—are whispered among long-term cancer survivors, their loved ones, and a handful of physicians and allies who run survivorship clinics and advocate for policy change. About 14 million people currently live past a diagnosis of cancer in the USA—many for 10, 20, even 40 years or more—and we are grateful, but frankly our stories tend to suck.
That’s because the vast majority of long-term cancer survivors live with late effects, illnesses and chronic conditions caused by chemotherapy, radiation, surgeries, medications, and other cancer treatments.
Late effects include heart disease, diabetes, kidney and liver failure, neuropathy, lymphedema, chronic pain, autoimmune disorders, and infertility. They include physical and cognitive impairments and disabilities. They include mental illnesses, such as depression, anxiety, and post-traumatic stress disorder.
Late effects impact our close relationships—emotionally, physically, and sexually. They make it difficult to buy groceries, drop our kids at soccer practice, or sometimes even to get out of bed. They impact our ability to work, often leaving us unable to support ourselves and our families, and without jobs, we lose our health insurance, and then we often lose hope, too.
Late effects are why there are few truly happily ever after endings to cancer stories. At best, long-term cancer survivors can hope for realistically ever after. We do our best, accept help when we can get it, think creatively about possibilities, suffer with as much grace as we can muster, and spend copious amounts of time waiting. We wait to see physicians, counselors, and physical therapists and to have CT scans, MRIs, x-rays, blood tests, and outpatient procedures. We go to the pharmacy—a lot.
But you’d never know how my life or other long-term cancer survivors’ lives really are by watching cancer dramas on TV, hitting the health section of CNN.com, or reading almost any popular nonfiction book on cancer. I’ve been involved with a wonderful local American Cancer Society Relay for Life event in Santa Clara, CA for years, and the only time I have ever heard the term “late effects” at those events is when I speak it myself.
You have to really hunt to find the realistic view of life after cancer. Go to the excellent sites such as Livestrong, American Cancer Society, National Cancer Institute’s Office of Cancer Survivorship, or the National Coalition for Cancer Survivorship, but you will have to dig to find the bad news on long-term survivorship—it’s there, it just doesn’t get top (or second or third) billing.
I get it, I really do. Late effects aren’t heartwarming, and they mostly aren’t dramatic either (although people do die from late effects). Chronic illness is a downer. Hearing about late effects doesn’t make people want to “race for the cureTM” or “celebrate more birthdaysTM” or write a big check to build a new cancer center. Late effects aren’t inspiring or comforting to those currently undergoing cancer treatment.
Late effects are the collateral damage of the war on cancer, the flaming debris from the cancer moonshot’s blast off, and the unintended consequences of the latest scientific breakthrough in cancer treatment. We omit late effects from our cancer stories to our peril.
I am not a fairytale character who Suffered Bravely, became a Miracle of Modern Medicine due to her Healthcare Heroes (and her own pluck), and then got her Happily Ever After ending. I’m a real woman who suffered from cancer, gratefully survived, and now lives a life with late effects—which means good days and bad days, laughter and tears, love and mistakes, scrubbing sticky countertops and eating chocolate.
I’m living realistically ever after.