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PATIENT PERSPECTIVES Stories Worth Telling: Documenting and Journaling Cancer Treatment as a Journey to Mitigate the Psychological Impact of Treatment on Patient and Caregivers
By: Ben Eslick; Khalid Alkhatib, MD; Phillip M. Pierorazio, MD; Kim Jones | Posted on: 01 May 2022
Introduction and Objectives
Testicular cancer (TC) is one of the most curable cancers. Because of the successful utilization of the platinum-based chemotherapy treatment, the cumulative cure rate now exceeds 98%. Despite this high cure rate, the psychological burden of being diagnosed with cancer and undergoing treatment is profound. As a stage 2 TC patient, I recall my conversations with my oncologist about the importance of staying active and motivated. Still, the discussion of how to stay active and motivated was often avoided. I thought of using my skills as a storyteller to write about and reflect on my journey through my treatment, with the objectives of journaling my experience and identifying the challenges I was facing in order to explore my feelings in-depth on a personal level and with my beloved family and friends.
Methods
Documenting and filming my treatment journey.
Results
The results were valuable at a personal level; it was also an excellent exercise for my loved ones, who helped me to understand their perspective as caretakers. I was able to approach my perspectives in-depth, which in turn helped me to manage my mental health. I discovered that it all came down to my outlook. The way I viewed my cancer and its role in my life made all the difference. Having cancer was a unique experience to write about, provide my feedback and give my creative spin. Understanding this helped me to change my negative outlook and, in a sense, regain control of my life. I no longer viewed cancer as a pointless hindrance forcing me into a hopeless situation. I saw it as a challenge now, the kind of challenge it takes a hero to overcome, and I got to be the hero in my own story. Once I had a finished story, I had something to share with others. A story, titled Uniball, evolved to be produced as a film, teaming me up with testicular cancer organizations, colleges and film producers to create a unique patient perspective cancer film. With the goal of raising awareness of TC, directing people to resources they need and engaging in a fulfilling, creative project ultimately gave my cancer a purpose.
Conclusions
A story doesn’t have to be a film. It can be music, art, books, or blogs; the only prerequisite is expression. The biggest surprise of writing my story was seeing just how many people were interested and helped from my perspective. Authenticity goes a long way, and a story that helps people understand how to overcome the adversity you’ve lived through is always a story worth telling.