How the Cancer Community Talks about Cancer

Jen Sotham

Jen Sotham

From a very young age, I was surrounded by a massive, tight knit network of family and friends, which instilled in me a profound sense of and need for community. Because I had been living abroad for many years when my melanoma went all metastatic, I had to simultaneously jump ship on the community I had spent almost a decade burrowing into AND dive head first into “dealing” with my diagnosis. As big of a double whammy as that was to handle emotionally, I was fortunate in that my aforementioned family and friend network in New York was as big and warm and tight knit as ever.

To safeguard my sanity, I started to attend weekly psychotherapy sessions. This became a critical piece in my treatment puzzle. Cancer is not something that calls for just medical treatment. It turns your world upside down; the emotional and psychological repercussions are as important to attend to as the physical ones. Although I did bond with a few other patients I happened to cross paths with, I opted not to attend any support groups. I had no desire to expend my emotional energy on other people's cancer. As I continued to maintain a personal blog from my own cancer bubble, I had some meaningful contact with a handful of fellow patients who had stumbled onto my blog and reached out. This I saw as the added bonus of getting to help people through my words.

My first contact with CURE Magazine was through a journalist who wished to interview me for an article she was writing about immunotherapy. Not long after the article was published, I reached out to CURE's editors, as my credentials as a journalist coupled with my firsthand experience with cancer made CURE an ideal market for my writing. When my article pitch about blogging through cancer was accepted, I was also invited to become a regular contributor for CURE's website. I was ecstatic - here was a way to gain exposure for my writing and earn some extra cash. Woot!

As a way for my posts to further reach their intended audience, I joined several melanoma support groups on Facebook. I figured I'd post links to my articles on each of the groups' walls, and that would be that. Soon after joining these groups, I found myself staying up until the wee hours, reading (and finding great comfort in) posts from fellow melanoma patients. And then I started engaging; I found myself sending and receiving friend requests, exchanging lengthy messages with strangers - sharing intimate details that had come out neither in conversations with my people nor in therapy.

Over the summer, I published an article on CURE's website entitled “The Language of Helping a Loved One With Cancer.” It immediately started getting some real traction, and I was thrilled to have touched upon a subject that seemed to hit home with a lot of people.

That same week, I was encouraged by CURE's editors to participate in their monthly #CureConnect tweet chat. I was a little nervous - not for the chat itself, but that I wasn't tech savvy enough to figure out how to be part of the conversation. A quick Google search told me all I needed to know... I just had to a user-friendly tool called Tweet Deck, which allowed me create several columns within my browser window: one to keep track of all the tweets with #CureConnect attached to them, and one to keep track of all of tweets that were directed at my username. The chat was fun, informative and connected me to even more likeminded people, some of who started following me and proceeded to retweet the link to my most recent blog post. In this, something phenomenal happened.

Up until that point, my posts had been getting decent traffic... eight hundred hits per post, on average. This particular article about the language of cancer was the first one I penned with the caregiver, as opposed to the patient, in mind. Within two weeks of that tweet chat, the piece got over 11,000 hits. Although I was over the moon at the idea that my words had reached so many readers, the bigger reward was that I realized just how large the cancer community is, and just how much I desperately needed to be part of this community.

Since then, I have regularly engaged with other cancer patients, as well as many caregivers. These are people who, no matter what our ethnicities, socioeconomic backgrounds and political beliefs are, share a deep understanding of what having a cancer diagnoses really means beyond and beneath the facts and figures. We need each other.

This Thursday, Jan. 19, at 9 p.m. EST, I will be co-moderating a #CureConnect tweet chat about the language of cancer. I'm so curious to hear what words other cancer patients find to be either taboo or helpful, to learn about other people's approach to communicating about cancer so that I can fine-tune my own, to connect to my newfound community.