How I Manage When My Social Media Friends with Cancer Disappear

When my daughter was diagnosed with breast cancer at 27, I tried to find resources for mothers like me with twenty- or thirty-something-aged children in the same boat, but there was almost nothing. I wholly believe in peer-to-peer support, and I was searching for people who would understand what it was like to sit in treatment rooms week after week and see no one who looked like me. Despite my talent for Google searches, I only found one group, but unfortunately, it was not a good fit for me for a number of reasons.

Cancer is an isolating experience for both the person with the diagnosis, as well as the care providers in their lives; not finding a group of my actual peers made me feel even more alone. It was when I turned to social media that I finally found a place where I felt I belonged and heard, and it has been a lifeline to me ever since.

It may be hard for some people to understand how close you can feel to people you likely will never meet in person. Before my venture into this sphere, I wouldn’t have understood it either. It can also be hard to fathom how you can grieve and worry over someone whose life you only know from reels and 280-character posts.

But I do.

Many of my social media friends have metastatic, or stage 4, cancer. They are on their first, third or sixth lines of treatment or even in clinical trials. They are in No Evidence of Disease (NED) status, lying on beds of nails awaiting the latest scan results or bloodwork to see if they will have to go back into treatment. They are people who will probably never, ever ring the bell.

And sometimes, they just disappear.

You never know why they stop posting. It may be that they are taking a mental health break and stepping away from social media for a while, which can be a remarkably wise step. They may be on a wonderful holiday celebrating the end of treatment or a good scan result or just because they want to.

Or they may be in hospice. Or gone.

If their family members have been brought into the social media discussion, they will often be asked to let people know on the cancer patient’s accounts what’s going on. If it’s news of someone’s passing, when they do, it’s like an open mic memorial service as their online friends talk about their value to the community and how much they will be missed. It’s an unknown but comforting hand on the shoulder of their loved ones expressing sorrow at their loss. Despite their personal struggles, their social media friends put their own stuff aside and reach out to offer solace.

This is a group of peers walking the same path and knows that a hand has let go but the circle will close again once the breath of acceptance has been taken. Even though they know the next hand might be theirs and so that breath needs to be a lot deeper and can be harder to let back out, there are still there.

My daughter is NED today, but the specter of return is always hovering in the background, and scans and appointments still appear on her calendar six years after her diagnosis. I have tried walking away from cancer, but I can’t, because my child can’t. Cancer is a never-ending story, and it sucks, and the social media cancer sphere helps me cope with that. I am grateful to be a part of them, and for them to be a part of me. Losses and all.

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