Jérôme, a young man who faced Hodgkin’s lymphoma twice before the age of 25, is turning his personal battle with cancer into a commitment to support other young patients. His story, initially shared during a televised fundraising event in 2022, highlights the often-overlooked emotional and psychological challenges that accompany cancer treatment and recovery, and the importance of patient advocacy.
Diagnosed at 13, and then experiencing a relapse four years later, Jérôme’s adolescence was profoundly disrupted by the disease and its treatment. He describes a feeling of being “boxed in” by perceptions based on his appearance during treatment – specifically, hair loss and visible illness. This experience fueled a desire to reclaim control over his image and narrative, leading him to explore self-portraiture as a means of reconnection and self-expression under the pseudonym Ralfagram.
“I have always had a difficult relationship with image,” Jérôme explains. “Since my first cancer, people tended to judge me based on my appearance. When you don’t have hair, when you’re a child, when you’re sick, people put you in a box and don’t give you the same opportunities.” His online presence allows him to share his story on his own terms, moving beyond the label of “sick person” and embracing a more nuanced self-representation.
A Testimony That Resonates
Jérôme’s willingness to share his experiences publicly reached a wider audience when he testified during the closing evening of Télévie, a Belgian fundraising event for cancer research, in 2022. He challenged the common tendency to view those battling illness with pity, emphasizing instead the strength and resilience he witnessed among fellow patients. “When we are sick, there is a look of pity that falls on us. We are considered victims. However, when I went to the hospital for my chemotherapy, I really only saw people who were fighting to live,” he stated.
His testimony struck a chord with others facing similar challenges. He received messages from individuals who found solace and validation in his story, recognizing their own experiences reflected in his words. One message, shared with RTL Info, read, “Your journey was very similar to mine. The same cancer, two relapses during adolescence.” Jérôme found this connection deeply meaningful, noting the reassurance that comes from knowing others have navigated the same difficult path.
The Challenges of Post-Cancer Life
While achieving remission represents a significant medical milestone, Jérôme emphasizes that the period following treatment can be unexpectedly difficult. He describes a period of depression and existential questioning, grappling with the realization that he had not envisioned a future beyond his early twenties. “What was hardest for me, I consider to be the aftermath of illness. Notice that you survived, that you were lucky to survive. I was 24 at the time, I was approaching 25 and I realized that I had never projected myself further than 25.”
He found solace in travel and sport, gradually rebuilding his life and rediscovering a sense of purpose. However, it was his commitment to helping others that ultimately provided the most profound sense of meaning. Jérôme now volunteers with a foundation dedicated to fighting childhood cancer and is undergoing training to become a certified patient expert.
Advocating for Improved Patient Care
As a patient expert, Jérôme aims to contribute to improvements in the care provided to children and young adults facing cancer. He shares his experiences with researchers, healthcare professionals, and policymakers, offering valuable insights into the realities of living with and surviving cancer. This includes addressing often-overlooked issues such as the emotional impact of treatment and the long-term consequences of therapies, like potential infertility.
His involvement provides a crucial patient perspective, informing discussions about how to better address the holistic needs of young cancer patients. One example cited is his testimony regarding the importance of openly discussing the potential for infertility caused by cancer treatments and ensuring that patients receive appropriate support and information.
Finding Serenity and Sharing Hope
Today, Jérôme approaches life with a renewed sense of calm and clarity. He prioritizes appreciating the small joys and encouraging others to remember they are not alone in their struggles. “My priority is to enjoy the little things in life and above all to encourage people to remember that they are not alone,” he says.
Jérôme’s story serves as a powerful reminder of the multifaceted challenges faced by young cancer survivors and the importance of patient advocacy in shaping a more compassionate and effective healthcare system. In Belgium, approximately 350 children under the age of 15 are diagnosed with cancer or leukemia each year, underscoring the ongoing need for research, support, and improved care for this vulnerable population.
