Helping Caregivers Find the Right Words

Kim’s Story

In 2008, several years before we met, my husband Bill was diagnosed with Stage III colorectal cancer.

With a combination of surgery, chemoradiation, chemotherapy, and careful monitoring—with no detection of spread—he thought he’d beaten the disease for good. A decade later, however, the cancer came back. In 2018 Bill received the diagnosis of Stage IV colorectal cancer with metastatic disease.

This was Bill’s second cancer journey, my first. In those early days I cried all the time. I was always crying: imagining myself not waking up beside him every day.

As a caregiver I felt lost and disorganized. Cancer is a whole new world of language unto itself. And we were in a situation where surgery wasn’t possible. What happens when they can’t cut it out? When you are part of a patient population where complex therapies are the best and only option, understanding them is incredibly important.

I knew that for my husband’s sake I had to get past the tears. When we came to CCRAN, I soon found the monthly peer support group sessions activated my natural sense of curiosity and helped me to overcome the fear and negativity.

And when I began to receive the Scientific Notes from CCRAN by email, they contained much actionable information and helped me to feel less helpless. In my work, I like to be smart and organized—to have the right words. I wanted to use those same skills to help Bill.

With CCRAN’s help I gradually acquired the vocabulary. When Bill had conversations with his care team about what avenues of treatment or therapies he might try, I was able to listen purposefully, make sense of the information we were given, and better support his journey.

More than anything, though, I am grateful for how CCRAN has brought us together with other patients. The shared experience and the learning have turned a potentially lonely and isolating battle on its head.

Through the many supportive conversations I’ve witnessed, and been part of, I have seen despair turn to hope right in front of my eyes. I’ve watched grown men change their attitudes and say, “I’m not going to be afraid of chemotherapy anymore!” because they were inspired by another patient’s bravery and determination.

And I’ve been comforted to know I’m not alone, having seen my own journey reflected in other caregivers. There’s a woman I’ll never forget, because she was so much like me: her husband was calm and she was frantic with notebooks and pens during the monthly support group sessions. “What was that word?” she would ask, or “How do you spell that?”

I thought to myself: this woman is in the right place. She will learn the right words here.


Kim McGinley