Living Every Moment: Debbie’s Experience with Follicular Lymphoma

Debbie has been living with a blood cancer, follicular lymphoma (FL), since 2011 when she was initially diagnosed during her studies in England. While living with an indolent cancer has had its challenges and can be filled with uncertainty, Debbie seeks to find joy and live every moment to the fullest.

For Debbie, being diagnosed with FL came completely out of the blue. At the time, she was attending university in England and attributed many of her initial symptoms, like fatigue and weight loss, to studying and being in a new environment. But after two weeks of tests, she was told she had FL and needed to start treatment immediately.

FL is a cancer of the lymphatic system and a type of non-Hodgkin lymphoma (NHL) that develops when the body makes abnormal B lymphocytes. In FL, an indolent, slower growing cancer, the lymphocytes slowly build up in the lymph nodes or other body organs, making it difficult to detect. [1]

“It’s a roller coaster,” Debbie describes her experience with FL. “Some days are better than others, but you have no idea how you’re going to feel at any given moment.”

From the beginning, Debbie was grateful for the support of her friends and family – specifically her husband who has been an important emotional support, holding Debbie’s hand “both metaphorically and physically.”

While there is no cure for FL, it can be treated, allowing people to often live for many years with the disease. However, it is likely that the lymphoma will return at some point. For individuals who relapse or become refractory, second-line therapies are often successful in providing another remission. Oftentimes, the age and overall health of the individual plays a role in treatment decisions as well, and an “active surveillance” or “watch and wait” approach might be used. [2]

Debbie has been in remission for nearly ten years, and she says there’s a part of her that’s always waiting for it to come back. She lives with the day-to-day uncertainty around if or when the cancer might come back.

“The pressure grows the further you go without having relapsed,” she says. “It hangs over you constantly.”

While living with an indolent cancer has its challenges, Debbie seeks to find joy and live every moment to the fullest. In addition to spending time with her family, friends, and pets, she has taken up calligraphy since her diagnosis and says it helps to take her out of her everyday life.

For others who are recently diagnosed with FL, Debbie encourages you to “find someone to talk to and not to compare your journey to anyone else’s” adding, “we’re all very different.”

Learn more about Debbie’s story:

References

1. https://my.clevelandclinic.org/health/diseases/22606-follicular-lymphoma

2 https://lymphoma.org/understanding-lymphoma/aboutlymphoma/nhl/follicular-lymphoma/relapsedfl/