When a loved one is diagnosed with cancer, how do we as caregivers live? Seeking that elusive answer nearly leveled me in the early months of my husband Brett’s brain tumor diagnosiswhen he was diagnosed at 32 in 1998.
The sheer volume of medical appointments both overwhelmed and saved us. We had so much to do that first year that neither of us absorbed the full emotional wallop his cancer wrought. Brett was resolute, strong, and focused on being cured. I was a mess and exhausted all the time, feeling as though 50-pound weights were pushing down upon my body. It was hard for me to do much of anything; even walking—which had been a treasured pastime—felt like a chore. I became incredibly fearful, worried at every turn, waking up countless times at night to see if Brett was still breathing.
I went to therapy, but I actually grew tired of listening to myself. It sounds funny to admit that since the entire point of therapy is to work out one’s problems. All I can say is that I was sick of feeling rotten, and hearing the despair in my voice brought me down even more. Don’t get me wrong, I couldn’t have asked for better medical care, or support from family and friends; the problem was that none of them had walked in my shoes. What I lacked in those early months and years of being a cancer caregiver was a community of people who understood. I needed to know that I wasn’t alone in coping with Brett’s cancer diagnosis. I needed to get out of my own worried head and hear about the daily struggles and triumphs of other cancer caregivers.
I did try a few support groups, but either they were too big or they met in the evenings, when I wanted and needed to be home with Brett. There were no online options at the time and self-help books overwhelmed me. What I did instead was watch mindless television on the Food Network and Home Shopping Channel. It was a little absurd but I needed the escape. Once, I bought a pink duster…just because.
I might have benefited from a like-minded community of cancer caregivers. But Brett and I were fortunate in that a community formed around us, made up of family, friends and neighbors. I barely knew the French woman who lived on the top floor of our apartment building, but I’m sure she, like so many in our building, had seen Brett walking with a cane and me walking alongside him, looking exhausted. One day while getting the mail, she randomly asked if I’d like the keys to her apartment. She thought I might like to sit alone on her deck with her beloved plants while she was at work. “The fresh air will be healing for you. Come have some tea and read a book, or just sit,” she said. Her gesture was so unexpected and lovely. It’s a gift I accepted because one thing was certain: I needed plenty of sunlight.
Looking back on these early years of caregiving, I wish I had worried less about burdening people with my feelings. Brett’s cancer diagnosis was so much for me to process on my own, but at the time I was afraid that sharing my burden with friends would magnify my anxiety.
I had so many friends who would have held me had I let them in. These same friends continued to show up; we didn’t always talk about what was happening, but they put together IKEA furniture in my office, cleaned out my freezer, and brought cookies. Learning to accept help in all forms was uncomfortable, but necessary. Baby steps … this is how I survived the early years as a cancer caregiver.
Note: This column originally appeared on the Cancer Support Community blog and is the second in a series on caregiving.