Sarah DeBord was diagnosed with metastatic colon cancer at age 34. In the years since, she has turned her diagnosis into a calling, and become an advocate for other young adults diagnosed with colorectal cancer and parents with young families facing cancer. She works as a communications and program manager for the Minneapolis-based Colon Cancer Coalition , volunteers her time with the online patient-led support community COLONTOWN , and blogs about her often adventurous experiences of living with chronic cancer at ColonCancerChick.com.
In the patient-centric world of oncology, let's not overlook who stands watch and gives without expecting anything in return.
I try to be very intentional and inclusive when referring cancer. I say “patient” to refer to someone in active treatment. Many don't subscribe to the belief that they are a survivor until they have actually been declared free of any disease. I say “survivor” to encompass anyone who has been diagnosed with the disease and considers themselves as such no matter where they go from that fateful day forward. And I always include the caregivers, because they are as much a part of the cancer diagnosis as the person diagnosed.
I was always keenly aware of the sacrifices made by caregivers for the sake of their person. I watched my former husband as he compromised on work, missed meetings, let go of hobbies and spent weekends making up for my lack of presence and ability to be an equal partner in our relationship and home. But a chance meeting with another caregiver left me with a profoundly changed perspective of caregiving and helped me see cancer from the point of view opposite the infusion chair or hospital bed.
She illustrated that caregivers are equally impacted by cancer, but all too often stand in the shadows, sit in a corner and are overlooked as the attention (and glory for lack of a better word) goes to the patient. While we fight for our lives, they face the fact that they may have to one day live without us. While the patient will deal with the brunt of the physical pain and misery of cancer, caregivers experience their own burden and pain as they stand witness to something they cannot fix and something they cannot make better. They are there while the patient sleeps, goes off to surgery or is on a medicated high to ease nausea and pain. They are there for conversations patients might not be lucid enough to hear, and those long moments of solitude while their person slumbers under a cocktail of drugs meant to help.
"I experienced every single moment of cancer," she told me, "while he often slept under various layers of medication. I had to experience every conversation with doctors, every injection by nurses, watch him wince in pain as he slept, and read every pathology report while being the comforter and not the comforted." When you stand in the corner of the room while everyone comes to pay their accolades to the patient, we need to remember that caregivers are experiencing cancer, too—just on a much different scale.
They have to experience every moment with the clarity a patient can frequently be excused from. They often pass up to opportunity to relax and unwind in their own way because they need to be on their game—the partner often becoming the parent. So while I can take a pill to knock down my nausea for a good night's sleep, the caregiver needs to stay sound should they be needed in wee hours of the morning.
So cheers to the caregivers. You have seen us in our most humble and helpless moments. You have done things for us that we would have never imagined asking anyone to do. You have seen parts of us used and abused and you never looked away. And you never said no regardless of how simple the request. Our diagnosis is equally your diagnosis, and though you don't experience the pain and sickness you still experience cancer in all its miserable glory. You are present for it in all those moments we are not and though you don't always get the accolades you deserve, as patients we know you deserve them tenfold.