BY ALLY NOLAN Patient, Brain Cancer April 26, 2023 elephantsandtea.com
When I was first diagnosed, I didn’t want cancer friends. At the time I was still processing my diagnosis and trying to wrap my head around the fact that in a few weeks, I would be having awake brain surgery, chemo, and radiation. My brain tumor was an incidental find from a car accident, meaning I didn’t feel sick at all. I didn’t experience any of the headaches, seizures, or other symptoms of a brain tumor. I had a misconstrued perception of what being a cancer patient would be like. I didn’t feel like I could relate to anyone else, given my unique circumstances. It was extremely isolating.
With encouragement from my family, I started to be open to talking with other people with cancer. However, I was still operating with a closed-minded view. In my head, if someone didn’t have my exact diagnosis with the same surgery and wasn’t in the same stage of life as me, I wouldn’t be able to relate to them. It didn’t take long to realize that I couldn’t find a fellow 23-year-old living on Long Island recovering from an awake craniotomy due to a rare brain cancer that usually presents in older men.
The first person I ever talked to, my sister first connected me with. This person had the exact same diagnosis and surgery as me. He was in his 30s, married with a well-established career. What could I possibly have in common with him? I didn’t see how we were alike because of our differences at the time.
This festered into loneliness and resentment toward the world, but I was determined to find a friend. The cancer center where I was receiving radiation couldn’t find anyone in their database of peer mentors that had any similarities at all to me. The same situation occurred with a different organization they set me up with.
I finally hit a turning point when my sister sent me a TikTok of a girl who would also be going through brain radiation in the summer of 2022. Our diagnoses were not the same and she lived across the country, but that didn’t matter to me anymore. Someone going through a similar experience with a sense of humor that I appreciated was enough for me. I commented on her video and soon I had her phone number.
My new friend had connected with three other young women who were also receiving cancer treatment that summer. She put us in a group chat declaring we are all far too young for this and we should support each other this summer. And that’s exactly what we did. We had four different diagnoses and lived in four different states, but between the five of us, a bond formed. All our lives have been turned upside down, but at least now we had each other.
Being able to text them at any time either needing to vent or laugh made everything a little lighter and less lonely. Through the summer my perspective changed, and I wanted to connect with more AYA (Adolescents and Young Adults) patients. I started going to different support groups and building connections and friendships with people that had a plethora of differences from me. A few months into going to support groups, a familiar face joined the Zoom session. It was the same man I thought I could never relate to that I talked to on the phone a few months prior. I was finally able to appreciate his insights now.
It’s December as I write this, and I’m still in constant contact with the four women from TikTok. Some of them have completed treatment and are now navigating survivorship and some of us still have a long way to go, including myself. We all hope to meet in person this year.
Some days I feel like everything will be okay and others I feel like my world is falling apart all over again. Having other people in my life who live with cancer and understand the toll cancer takes makes it easier to keep going. All I have to do is send a text and someone will respond with, “I get it.”