As someone who’s been in treatment for 54 months now (yes, that’s four-and-a-half years of infusions, scans, EKGs, random other tests, blood draws and doctor appointments), my life is a lot different than that of most people close to my age. To make up for that, I have a pretty good number of real-life friends and acquaintances living with metastatic cancer but I wouldn’t feel nearly as seen and heard if I didn’t also participate on social media.
There, I’ve met people living with many types and stages of cancer, as well as other diseases and health histories. Some of these individuals are funny, some serious, some post pictures of nature while others fill my screen with images from their hospital or from cancer-related events. Though I sometimes forget that the “www” at the start of a formal website stands for “world-wide web”, this is precisely what I have on Facebook and Twitter: A web of friends and strangers telling their stories, reaching out across what feels like a physical extension of our own bodies, delivering “likes” and hugs and comfort to each other and to ourselves.
I follow “cancer muggles” as well, including cancer researchers and oncologists (who’d probably object to their muggle status, which is a term from the Harry Potter series for anyone who is not privy to his magical world). I value their voices, insights and the discipline with which they think about cancer. But if I’m going to be honest, I’d point out that too few of these people hear enough of the patient voices out there.
Though both “sides”, doctors and patients, say they (mostly) want shared decision-making and patient-centric care, those goals are more easily stated than reached. Listening to so many different perspectives on social media and at cancer conferences makes me think that one of the obstacles is how little time doctors have to hear us during appointments. Yes, a good doctor has the time to listen and respond appropriately to needs and I like to think that most of us have doctors who know at least the outlines of our “real” lives and histories.
Listening online to the everyday experience of patients with cancer could truly further the understanding of doctors toward those they already serve so well. They would learn how we address the too-often-downplayed issues, like chemotherapy-induced neuropathy; how we discuss and learn about clinical trials; where to go for support in a particular geographical area; and, perhaps most meaningful to me as a metastatic patient, they would be exposed to the loss we experience every day in our close communities.
I sometimes wonder about the hope that oncologists express when they use terms like “chronic” or “tolerable” when talking about my own life. They must objectively know that my disease is not chronic and that a side effect labelled “tolerable” is hardly that when it involves diarrhea that demands a change of clothes or neuropathy that makes one walk with caution.
I love it when I see oncologists join the lively #bcsm discussions on Twitter (though I mostly read them after the fact). I believe these doctors’ understanding of life with cancer and their skill as physicians and researchers will improve with this openness to really hearing and valuing the patient voice. I learn so much from the doctors and cancer organizations I follow on social media. I know they could learn a lot from patients in return.