If someone used a book as a metaphor to describe living with cancer and cancer survivorship, I think many adolescents and young adults (AYAs) would suspect the book is full of platitudes and move on to reading something else. The metaphor is relevant here, I promise. My interest in cancer survivorship stems from being the son and nephew of multiple cancer survivors in my family; six of them to be exact. This interest developed into me becoming a clinician and researcher who focuses on improving cancer survivorship for AYAs. As a researcher, I help AYAs tell their stories through composing written narratives and creative art. Along the way I’ve learned some lessons about cancer survivorship from the AYA community and the cancer survivors in my family.
A delightfully insightful AYA shared this perspective with me; “I had to find a place in my life where cancer fits. The chapter is only part of the story.” This idea is equally simple and profound. Conceptually reducing cancer to a chapter in a story suggests an ability to set limits on an illness that has no regard for whom or upon which aspects of that person’s life it intrudes. This is a reminder of the difference between cancer being part of versus the focus of a person’s life.
On a personal level, I noticed how none of my family members defined themselves by their cancer diagnosis. Instead, they took pride and lived in a manner which celebrated cancer survivorship. Each of them had plot twists during their chapters with cancer which made them wish to tear the pages out of these chapters and shred them in frustration. They ultimately proceeded page by page through the ambiguity and uncertainty of these plot lines, awaiting the opportunity to begin a new chapter.
There is so much to learn from previous chapters about a person’s life before receiving a cancer diagnosis which informs who they are as individuals. This information helps people like me better understand a cancer survivor’s future goals and how to help optimize their cancer survivorship experience. Experiences from living with cancer can inform future perspectives and choices people make, but do not need to define their personhood. Entering cancer survivorship doesn’t always mean survivors automatically know how to assimilate their cancer experience into their lives. Everyone’s story is still evolving, and the solution for how to assimilate these experiences might easily lie a couple chapters ahead.
By: Robert Bennett