For many years I worked as a respiratory therapist in a pediatric ICU. For readers that have never done that kind of work, it means I took care of kids on ventilators, among other tasks. I experienced long shifts where there were hours of boredom punctuated by the need for intense precision when I had to do everything I could to repair a clot in the line. In many ways I was fearless, because I knew the kids I worked with and their families counted on me.
When I was diagnosed with breast cancer, it was an entirely different thing. It threw me for a loop and I thought about dying all the time. I didn’t feel fearless anymore.
I went through the stress and anxiety all on my own. I worried that I would have to remove both breasts to stay alive. I felt isolated, particularly because my diagnosis happened during COVID. I was in turmoil and my mind was in an entirely different space.
I was afraid and I didn’t feel like I had anywhere to turn.
Ironically, I didn’t have to go through my first cancer diagnosis alone, fifteen years prior. When I had been diagnosed with uterine cancer in Chicago, I was immediately referred to Gilda’s Club Chicago. As soon as I heard the words, “You have cancer” I was told there was somewhere to go to help me manage all that I was going through. My hospital had signs up all over about Gilda’s. Medical staff mentioned it to me several times. It quickly became my sanctuary.
This time around, no one mentioned Gilda’s Club. In fact, I assumed there wasn’t one in Madison. At one point, a nurse navigator gave me a 100-page booklet. In chapter 11 there was a single page that mentioned Gilda’s Club and cancer support. It was buried and lost among all the other information.
That’s not good enough. I need for the doctors, nurses, and patient navigators in our community to know that patients dealing with a cancer diagnosis are not thinking straight. We are not who we usually are. We’re in another mental space. For us to find our way through the darkest days, we need their help and guidance. And we need Gilda’s Club.
This time around, I got lucky. My cancer was not aggressive, not invasive, and it was slow growing. It responded to hormones and my doctors were able to surgically remove the tumor.
I found out about Gilda’s Club Madison one month after my surgery and although I wished I had been supported from the beginning, it has still had a positive impact on my ability to manage the emotions surrounding my cancer.
Through Gilda’s Club Madison I have attended the breast cancer support group and I been part of a weekly coffee connection where I get talk with many other people dealing with different kinds of cancer. I attended a workshop on death and dying and even participated in yoga with other survivors.
In addition to spending time at Gilda’s Club, I also chose to get my first tattoos at the age of 75. I did this in an effort to re-embrace my body and overcome my fears. The bluebird flying up from my surgical scar is in memory of my dad and is similar to the soccer team bluebird he had on his bicep when I was growing up. The other is an origami crane. According to Japanese lore, folding 1,000 cranes will bring good luck and health. My daughters and I have folded many of these over the years and they have a special significance to me.
So – what is your path to cancer support?
If you’re facing cancer and feeling bad, I want you to know it’s common to feel alone or down. Sometimes it can simply help to know it’s common for you to feel frightened, even if you’re usually fearless. I just want you to know you don’t have to go through cancer alone.
Schedule a time to visit Gilda’s Club Madison and meet with one of their mental health professionals. All the programs are offered at no cost.
You will benefit from all you can learn about your treatment, managing costs, and getting support. Part of the awareness should be that your feelings of fear and anxieties are natural and others can help you feel less alone. For me, Gilda’s helped me appreciate being alive. My second cancer experience was a wake-up call that every day is a gift. Trite, but true. We aren’t guaranteed our next days but we are in this together.
-Kathryn, Gilda’s Club Member