When my daughter was sitting in treatment chairs during the entire twenty weeks of treatment there was no one who looked like her. That tends to be a normal occurrence in cancer treatment and there are many memes that show the way young cancer patients feel when they see someone like them come into the room. But…that meant that there was also no one who looked like me. There were of course people of my age with their loved ones, but the person with the medicine flowing into their veins was a parent, or a peer, not their young adult child. I wouldn’t have wanted to see the room filled with “us” because I knew what my child and I were experiencing and I wouldn’t wish it on anyone, but it did make it a very lonely time.
Everywhere we went there was the suggestion that I find a support group, and I tried. The groups I saw were wonderful, but for the most part they were directed at the other people in the treatment rooms, the “typical” cancer patient and caregiver. There were groups for parents of young children with cancer and although I shared the grief and anger that comes with your child being diagnosed my reality was far and away from theirs. The one group I did find was predominantly faith-based and that wasn’t right for me since that has never been a part of my life. So, just as there was no one who looked like me in treatment rooms, there wasn’t a support group that fit, either.
During treatment that isolation was okay. I was in action mode and focused on doing everything I could to help my daughter live. Once I got home, however, and the realities of what it means to live in survivorship kicked in, I found my mental health taking a hit. I became so hyper-vigilant that it wasn’t possible for me to be in a vehicle I wasn’t driving. Situations that I normally would manage and shrug off took me from calm to level 10 anxiety in an instant. Every time the phone rang my heart would race as I looked at the caller ID to see who it was. When my husband sat me down to talk about how hard it was to watch me struggling, I knew I had to do something.
In April of 2020. In the middle of Covid lockdowns.
Before Adrienne’s cancer diagnosis, my lone foray into social media was using Facebook to keep in touch with family and friends and I shared my writing about the experience there. When I realized I needed an outlet to help me in survivorship, I checked out Twitter.
And I think Twitter saved my sanity.
There is an entire community of people dealing with cancer on Twitter and they took me in. Although I didn’t find a lot of peers there, I was welcomed into the group and the young and old, in treatment or in remission, newly diagnosed or years out, all offered the space and time to express how I was feeling and have it validated. When I was struggling I could tweet about my emotions and be seen. When I was angry I felt heard. When I was working on being in the present and went one-step forward two-steps back they were there to hold my hand.
Recently there was a…change in management of Twitter and it’s now called “X” and tweets are now “Posts”. There were changes in algorithms, people lost followers, more ads appeared. But you know what didn’t change? The cancer community. There were rumbles of shifting to another social media platform and some gave up and left but for the most part all the people I count on to help me on what I now know is a lifelong path to recovery are still there.
If it’s the middle of the night and my brain won’t settle I can put out the thought that’s keeping me awake and someone will always let me know I’m not alone. If I need to say something “out loud” that I can’t say to anyone in my real world because it’s just too scary I can say it there, taking away some of its power. If I need a dose of dark humor to pull me out of a low point I can count on finding it. If I drift away for a while because I am struggling with my emotions I’m always let back in.
Being so intimately involved in my daughter’s cancer experience was and sometimes continues to be one of the most isolating times I have lived through. Social media may have a lot of downsides, but joining people facing one of the worst times of their lives in a place that gives them love and holds space for them is the most magnificent use of this type of technology.
No matter which letter of the alphabet it’s called.
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