When I was halfway through chemo, I heard about a movie theater that showed weekly matinees for parents and their babies. My first child had been born a week after I was diagnosed with breast cancer, and I was eager to participate in something regular parents did. Bringing my son along to oncology checkups did not count as normal.
I packed the diaper bag and headed uptown to the theater, eager to join in pre-movie chats about nap cycles and pacifiers. But when I walked into the theater and saw 200 mothers—half of them breastfeeding—all I could think was, “I am not like them. I have cancer. I don’t belong here.”
Cancer is isolating. Young survivors learn this the minute we walk into the oncologist’s office and realize all the other patients are 30 or 40 years older than we are.
But we also feel the isolation on the other end: among our peers.
While our friends continue to go to bars, advance their careers, or join Mommy & Me classes, we’re stuck in a parallel universe—one filled with radiation burns, follow-up tests, and recurrence anxiety.
It can be hard to bridge the gap, especially after we finish treatment. Once our hair grows back, friends expect us to be back to normal. They may not perceive the profound ways cancer has changed us.
Sometimes these changes make us feel old before our time. One guy described the challenge of planning a bachelor party for a friend. How, he wondered, could he show his friend a good time? While other guys were partying, he focused on work to distract himself from his acute lymphoblastic leukemia. When his friends were relaxing at the beach, he stayed at home for fear the chilly water would make him sick. “When my friends are living dangerously, I proceed with great caution. Did cancer completely take away my spontaneity and coolness? ….Did cancer make me lame?”
If our friends have a hard time understanding our less-than-cool health preoccupations, we can’t always relate to their cancer-free worlds.
Nita was diagnosed with breast cancer just as she was finishing law school. She had a double mastectomy and reconstructive surgery, but her body rejected the implants. Then her post-treatment medication threw her into menopause. In the midst of all this, she started her first job.
“I would be sitting at work with other young associates,” she told me. “And I could not relate to them at all. They were talking about how stressed out they were, how hard it was to make billable hours. I am like, ‘How important is that?’ Or they would talk about relationships. It seemed so foreign to me. I was convinced that dating couldn’t be a part of my life after cancer. How could I possibly feel comfortable talking to them about it?”
Not fitting into the groups we used to or thought we would can leave us wondering where we belong now. Theresa, who got leukemia in her early thirties, expressed the dislocation in terms everyone can understand.
During my freshman year in high school, I ate lunch every day alone. The cafeteria—and the intricate social maneuvering that it required—was too utterly petrifying for me to handle…As I got older and more mature, my identity as a pretty cool gal emerged, and by twenty, I had honed the ability to walk into any room and just make it work, you know? Getting cancer absolutely dismantled this ability. The tubes are out and the hair is in, but I once again find myself in that vast hollow vacuum of a high-school cafeteria: I don’t know where to sit or if I’m really supposed to be here at all. As cancer survivors, we have experienced some great losses, and for some, the most anguishing is this perceived loss of communal affiliation and approbation that comes from being healthy.
The loneliness of experiencing cancer as a young person may never completely go away. But for Theresa—and for so many of us—- seeking out other young survivors can ease the isolation.
As long as we find people our own age who understand things like biopsies and chemo brain, we will have a place to sit in the cafeteria.