by Andrea Walens, PhD
Being a caregiver can take many forms, and it is a role that can evolve. I first learned what it meant to be a caregiver at the age of 13 when my mom was diagnosed with early-stage breast cancer. At the time, my caregiving came in the form of hugs, love and taking up more responsibility around the house. After a few months of remission, my mom was rediagnosed with stage IV metastatic breast cancer. So at the age of 14, my caregiving role changed to making sure my mom’s oxygen line wasn’t getting tied up as she moved around the house, providing meals at her bedside when she didn’t have the strength to come downstairs, and as always, providing love and hugs, especially during her final days.
Being a caregiver for someone diagnosed with cancer, whether early-stage, late-stage, recent or many years ago, is extremely challenging. There are many days when you feel inadequate and want to give up. But as a caregiver, you find strength in the good days, the ones when you can provide more love than physical support, the days when you can smile and laugh with your loved one and enjoy life in the present moment.
As I’ve grown up, especially in the last couple of years, I have been a caregiver for many other family members who have been diagnosed with cancer, including my dad, my grandmother and my granny. Although I can’t always be with them physically because they all live in different states, my caregiving has involved listening to oncology appointments on the phone, doing research online and through my colleagues in cancer research, and providing support in my relative’s decision-making processes.
It’s hard to feel that you are truly a caregiver when you are providing support from hundreds of miles away, but I am thankful for the resources that allow me to provide support for my loved ones who are undergoing cancer treatment. Some of these resources are local, like the Caregiver Conversations series provided by UNC Lineberger, and some are national resources like FORCE’s national events. And although becoming a cancer caregiver at the age of 13 isn’t something I would wish upon anyone, it helped me to grow into a more compassionate, thoughtful and responsible human. With each new diagnosis, I feel better equipped to be there for my family and friends.
That is why I was happy to learn that FORCE is partnering with the National Human Genome Research Institute on a confidential, 15-minute survey to understand the resource needs of caregivers of relatives diagnosed with hereditary cancer. This survey is open to everyone who is or has been a caregiver, whether or not they have been diagnosed with cancer. The results of this survey will help FORCE better understand and meet the needs of caregivers from hereditary cancer families like mine, and like so many others in the FORCE community.
I hope that one day, being a cancer caregiver will be a story of the past, but until that day, know that you are not alone as a caregiver, and don’t hesitate to build a support system for yourself as you help your loved ones through their cancer journey.
Andrea Walens, PhD, is a 29-year-old BRCA1 previvor in North Carolina. She is a cancer researcher, cancer caregiver, cancer research advocate and patient advocate, and volunteers as an Outreach Leader, Peer Navigator and Patient Advocate Leader for FORCE. Andrea enjoys spending time with her husband and her dog Sadie, visiting family, hiking in state and national parks, baking and taking care of the many plants she accumulated over quarantine.