By Mindy Buchanan, CEO
At Camp Koru, we so often hear our campers say, "Non-survivors don't get it" - meaning those of us who've never had cancer don't understand survivorship...and the challenges that come with it.
That lack of understanding by friends and loved ones is a burden. It not only make survivors feel isolated; it also burdens them with having to explain their challenges - to give examples or try to find the words that just don't do the feeling justice. It's exhausting and still might not convey the lived experience of fighting and surviving cancer.
I myself am not a survivor, and fully admit, I can never truly "get it". But in honor of National Cancer Survivors' Day this week, I'd like to share a bit of wisdom I gained in my nearly eight years of cancer advocacy - wisdom that I put to use every single day in my work at Project Koru.
It's called "Comfort IN, Dump OUT."
Coined by Susan Silk and Barry Goldman, this method is applied to being in relationship with someone who is experiencing trauma. In short, the idea is that the affected individual is centered, with their closest relatives and friends surrounding them in the innermost circles. The more distant circles from the center make up those with more distant relationships. Wherever you fall on your person's circle, you can turn to an outside circle (person with a more distant relation to the individual experiencing trauma) and say whatever you need to for comfort. But inward, toward the center and the person at the center, you are there to purely support and avoid laying any of your worries or issues at their feet. This article does a great job of explaining this in greater detail.
For National Cancer Survivors' Day, I want to talk about how we apply this model to young adult survivors.
The National Cancer Institute says Adolescent and Young Adult (AYA) cancer survivors face a unique cancer burden. There are many things an AYA will navigate that younger and older survivors will not. This includes loss of independence, financial toxicity, loss of fertility, long term side effects of treatment (such as being thrown into menopause at age 25), and the list goes on.
This means that although a friend or loved one is out of active treatment, they are still experiencing trauma.
We see this effect through "scanxiety." The days, or even weeks, before a cancer fighter or survivor's scan can be extremely nerve wracking for them, and yes, you, as their loved one. If you're scared for your friend/spouse/sibling/etc., that's okay. But remember, "Comfort IN, Dump OUT." Try your very best not to leave your worries, your fears, your discomfort at their feet. They're already scared. Be their shoulder and only share your concerns with those in a more distant circle.
Here at Project Koru, we create environments where survivors can come together and share their experiences without worrying whether those listening "get it." That relieves a burden. That creates community. And that helps young adult cancer survivors heal.