Life with metastatic breast cancer has many predictable side effects—pain, fatigue, and nausea. However, during my three years living with metastatic breast cancer, I’ve noticed some less predictable side effects that present when communicating with those who don’t have metastatic cancer. Although nobody signs up for this disease, we also don’t sign up to be cancer educators, but that’s often what we become. Here are some of the questions people ask that allow me to educate them about metastatic cancer.
“When will you be done with chemo?” For a quick response, “never” or “I’m on chemo for the rest of my life.” Sometimes I’ll expand, “This treatment will work until the cancer mutates, rendering it ineffective. Then we’ll try a new chemo until the cancer mutates again. We’ll do this until we run out of chemo options.”
“But you don’t look sick.” Sometimes I’ll simply reply, “Thanks”; other times, I’ll use it as a teachable moment. “If you could see my insides, they’d tell a different story. As for my outside appearance, I’ve lost my hair in the past, but this chemo doesn’t cause hair loss. Unlike treating early stage cancer, we can’t cure metastatic cancer. We can only hope to keep it from invading other organs, so this chemo has different side effects than early-stage treatment.”
“But you’re doing ok now, right?” This is where a person with early-stage cancer might reassure the questioner about their excellent prognosis. But metastatic breast cancer is incurable, inoperable, and terminal, so reassurance is futile. For a quick answer, I say, “I’m having a good day today” or if I have time, “The doctors don’t know how to get rid of this cancer, so I’m living with it forever. One day at a time, I have my good days, but they are tempered with entire days in bed.”
The question that nobody asks, but everyone wonders about, is my mortality. If the cancer can’t be killed, does that mean I’ll die? In short, yes, but we don’t know when. Luckily, I have more chemotherapies waiting in the wings. However, eventually it will do irreversible damage to my vital organs, and it will be time for me to wrap up. It’s difficult for people to hear this, but I’ve had many years to process this information, so I don’t mind talking about it—just not in front of my kids.
Despite holding an M.A. in Communication, I find the communication-related side effects of living with cancer quite perplexing. Still, it’s important that those with and without cancer keep the conversation alive to promote better understanding of this disease.
Camille Scheel was diagnosed with stage III breast cancer in 2007 when her kids were 6 and 1. The cancer metastasized to her bones in 2012. She is author of Camp Chemo: Postcards Home from Metastatic Breast Cancer, available October 2015 at book sellers and CampChemo.com.