By Mark A. Hicks
As I cared for my late wife, none of the caregiving advice I received applied. Few people have faced the nightmare of cancer that has spread to the membranes that surround the brain of a loved one. I felt so alone and inadequate as I cared for my wife as she suffered excruciating headaches, seizures, aphasia, ataxia, and the ill effects of having toxic chemotherapy infused directly into her cerebrospinal fluid through a port drilled in her skull. And being in the middle of the COVID pandemic added an extra layer of caregiving issues.
To add to the heartache and trauma, my wife’s cancer was very preventable. Information about an inherited BRCA2 mutation risk that could have helped prevent her cancer and save her life was not shared by relatives who were acutely aware of the mutation for years.
Soon after my wife was diagnosed with advanced-stage triple-negative breast cancer, she had genetic testing. Just days after that, our daughter got tested as well. When I learned that both my wife and daughter had both tested positive for the same BRCA2 variant, I realized that preventing hereditary cancer begins with caregiving. With hereditary cancer, caregiving is not just tending to the needs of someone diagnosed with cancer; it extends to those who may be at risk as well.
Caregiving starts by being cognizant of any family cancer history. If there is a genetic mutation that may increase the risk of cancer in family members, that information, including test results, needs to be shared with as many living relatives as possible and as soon as it is discovered. And genetic counseling and testing needs to be strongly encouraged, even if that takes multiple conversations with family members. Communicating about family health history is form of caregiving.
After my wife’s death in 2021, caregiving did not cease. I was my adult daughter’s caregiver on two occasions when she had prophylactic surgery to significantly reduce her risk of getting cancer. And I have continued caregiving through my hereditary cancer advocacy and staying up-to-date on advances in hereditary cancer prevention.
Knowledge combined with caring can be life-saving.
Learn more about Mark Hicks HERE
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