Like many, the lives of our study team have been affected by cancer: either as cancer survivors, family members and friends of cancer survivors, or caregivers. We often hear narratives about cancer as a battle to be won, a cruel enemy to defeat at any cost. Those of us diagnosed with cancer are considered warriors, backed by an army of healthcare providers and loved ones. However much this metaphor may resonate with those impacted by cancer, the cancer journey can also invoke vulnerability and existential questions. Which begs the question that drives our team’s work: “How can we improve cancer survivorship so that the focus is not only on defeating cancer but supporting the individual as a whole person?”
Through our experiences, we have quickly realized that having support through a cancer journey makes all the difference for a patient. Working at cancer hospitals, as we pass through the hallways, we may often see people who look like our parents’ or grandparents’ ages. But, every once in a while, we see someone our own age. Our eyes lock as we see them scanning the room for anybody they might be able to relate to. Our hearts sink every time. The cancer experience is tough enough, and even tougher when you feel like an outlier.
Beyond the isolating experience at cancer hospitals, we have also seen the toll of not having support at home. When family members and friends have been diagnosed with cancer during their childhood or in their teens, we didn’t know anyone else going through something similar to provide opportunities for connection, but also to help us understand how to support their mental and physical health. Healthcare providers were often brusque – focusing on treatment, medication regimens, and surgeries – but often forgetting the person at the center of it all, their needs and concerns, and the concerns of their family and friends.
After the cancer was treated, we saw healthcare providers and families consider the battle won. However, the survivor still had so many questions: How do I make peace with my body after this experience? What about my fertility? How will our family tackle the financial impact of this experience? What is my new normal? Support was rarely provided in navigating these important questions. We saw our loved ones caught in the limbo of mortality and independence at a time when they should be enjoying school, building friendships, enjoying extracurricular activities, and dreaming of the future. Childhood and adolescence are challenging enough without adding on the layers of medical appointments, treatment side effects, fear, and isolation.
Based on these experiences, we vowed to do everything we could to make the cancer experience a little less lonely for adolescents and young adults. Through conversations, surveys, and observation, patients told us what they needed, and what might help them through treatment and survivorship. This included information on fertility, social support, financial advice, and information on nutrition and exercise as they struggled with the impact that cancer had on their body and mind. These perspectives brought us together to brainstorm potential solutions. What if the cancer experience and its long-term impact on our lives didn’t have to be so challenging? We vowed to do all we could to make the cancer experience a little less lonely for children, adolescents, and young adults.
Our team has experience working with other communities that face similar questions after life threatening illness or injury. In working with these communities, we have often seen the power of physical activity to serve as a springboard for recovery. By building fitness and physical literacy after illness and injury, and seeing ourselves improve day by day, we can slowly return to ourselves and our bodies, and build confidence that eventually translates to other parts of our lives. Furthermore, physical activity is known to effectively support mental health – particularly depression and anxiety. Finally, physical activity is an activity that can be performed on our own or with others – giving us the chance to focus on ourselves or to connect over something as simple as enjoying a run, hating burpees, or wanting someone to work with us on a tennis swing. What is magical is that these small conversations about the activity can often be the entry point to larger conversations about our hopes, fears, and life experiences.
This is the perspective we bring to our work and hope to share with the world: focus on the whole person, and help individuals identify joyful and meaningful activities which can serve as natural building points for social connection and personal growth after cancer.
By: Celina Shirazipour