More than 50 years after her mother's first diagnosis, Barbara begins to reflect on the many lessons that came from a family member battling oral cancer.
Barbara A. Chernow, PhD (Columbia University), is the founder of Chernow Editorial Services, Inc., a company that produces medical and professional books for publishers worldwide. She has also edited many reference projects, including the Columbia Encyclopedia, is the author of Beyond the Internet, and has taught at NYU and the New School. She published an article, The Other Side of Grief, in the Brooklyn Quarterly .
Most bloggers write about current experiences. My story is different. It spans the 33 years of my mother’s two bouts with oral cancer—one maxillofacial, which she survived with great courage and in the face of many challenges, and one squamous cell, which took her from us. The intervening years brought personal triumphs and daily traumas; the subsequent years resulted in recurring catharses of grief for her caregivers.
Of course, much has changed since my mother’s first diagnosis in 1963. Yet my family’s journey was so extensive that it still offers many lessons—some practical, some inspiring, some simply sad. They emphasize the need for better awareness and public education, for accurate presentation of the diagnosis and treatment options, for explaining anticipated changes in functionality and outward appearance, for careful selection of a medical team that is both highly skilled and compassionate, and for understanding the impact of the disease on the quality of life of everyone in the patient’s circle. It raises issues about palliative care versus surgery, of coping mechanisms and emotional support, of how to function as a survivor, and how best to negotiate the path to end-of-life decisions.
This is my first post, and my goal is to expand the dialog by sharing experiences and learning how others have responded to the challenge of advanced oral cancer. What can we teach each other and how can we help those about to embark on this journey?