Being a caregiver for a young child with cancer, caring for an adult with cancer, and fighting cancer yourself are all very different experiences. All three are awful circumstances that take a huge toll on everyone involved. And while they are all difficult, anxiety-inducing, and traumatic, all three require very different things from those people.
I’ve had several recent conversations with people who insisted that they understand what I’m going through because of their own experiences with adult cancer. Each of them demonstrated great courage and resilience in the face of terrible experiences. I have deep respect and empathy for the struggles they endured, and I believe that their experiences were just as scary and painful as mine. However, my experience is different in some very significant ways from what they described.
The thing about a child with cancer is that they’re still a child. In addition to the demands of their treatment, they still need all the same things a healthy child needs.
When my wife and I are in the hospital with our three-year-old, there are almost never long periods of sitting around. A three-year-old trapped in a small hospital room requires nonstop attention and activity. There is constant play, snack requests, educational activities, snack demands, trips to the potty, and snack tantrums – when she’s feeling well. When she’s not feeling well, add alternating screams of pain, fits of rage, and long snuggles to the agenda. Don’t forget about the various nurses, doctors, and specialists coming through for consultations, vitals, medicines, and injections every 15-60 minutes. Oh, and did I mention the six-year-old sibling with her own set of needs and demands? It often takes everything my wife and I have in us, plus the help of the amazing child life staff, to get through the day intact. When we do have the time and energy to do something other than caregiving, we tend to treat it as a rare blessing.
Even though our hospital days are hectic and nonstop, I’m grateful that they keep us engaged. When others have told me about their long and dreary days waiting in or beside a hospital bed, it sounded absolutely torturous. I can only imagine the unique combination of restlessness, anxiety, and stress they must have felt during those times. When I do imagine it, I can clearly see how every minute might become a fight to keep their mind occupied with something other than the wait.
In every case, cancer is a terrible disease. Whether it’s attacking an adult or a child, it is a tragedy. But we must understand that childhood cancer and adult cancer demand very different things of the people coping with them. And if we look closer, we’ll see that every single case and every person’s experience is also unique. Let’s not assume that we know what someone else is going through when they say the “c” word. Instead, let’s encourage each victim of this awful disease to give their own voice to their own experiences.