When you get cancer, there’s no road map. The ground beneath you shifts. But there’s no guide on what to do next. And even if there was one, it’s daunting, and there are no guarantees. Though the specifics of the diagnosis and treatment plan are different for every case of cancer, the experience of feeling isolated and overwhelmed is pretty universal.
I experienced this firsthand with my close friend and colleague, Jennifer Kraemer-Smith. We’ve been close friends for 11 years and have shared many major milestones. We bought homes at the same time, had our first babies within three months of one another—and even went on to have our second babies a few weeks apart. But when Jen was diagnosed with stage one breast cancer in 2012, an immediate space formed between us. Add to it that she was newly pregnant with her third child, and our lives diverged even more radically.
Jen and I had talked for hours about the intimate details of our labors and deliveries, and texted our way through colic and mastitis. But cancer was new territory. We danced around small talk, and awkwardly dug into details about Jen’s diagnosis. Questions like “How can I help?” and “How are you feeling?” got old even before her first chemo appointment.
Your doctor is tasked with answering your medical questions. But those questions may not cover your other related anxieties. Pamphlets about coping with cancer don’t cut it, and going online can lead you down a rabbit hole you are better off avoiding. Talking to friends and family can be like walking through a minefield, too. People flood you with tales of their experiences, or the random and removed story of their best friend’s childhood babysitter’s sister-in-law—which has nothing to do with what you’re going through. Worse, people distance themselves, as though cancer could be contagious.
Though it’s clearly easier than being the one who is sick, being in the support system of someone with cancer is also a challenge. Ask too many questions, you appear to be nosy. Ask too few questions, you appear thoughtless. Raise practical topics, you’re missing the big picture. Ask questions about the big picture, overwhelm the patient.
Unfortunately, we’ve had years to master the art of communicating about cancer. Jen successfully treated it and gave birth to a happy, healthy little girl who is now almost four years old. But Jen’s cancer returned in 2014. And when it did, we were determined to find a more organized way to confront it, emotionally. We looked (and looked, and looked…) for support materials that were both meaningful and user-friendly, and came up empty handed.
So we created The Cancer Conversation. It’s a set of 40 cards that breaks down topics that are often overwhelming into small, digestible bites to help spark the difficult dialogue between the patient and the people in his or her support system. It covers practical topics, like how to make the most of your short time with your doctor or prepare for an unexpected hospital stay, as well as the emotional terrain, like how to answer nosy questions from strangers. We made smaller sets of cards for friends, couples and caregivers who need guidance too. These cards split their focus between how best to help the person with cancer, and how to get the support and relief you need, too.
We hope our experiences—as someone battling cancer, and someone cheering on the sidelines—will help other people communicate and cut to the chase. And creating The Cancer Conversation has been incredibly cathartic for us personally. It freed us to talk about topics we never would have approached together, and doing the research made us realize how universal that struggle is.
Andrea Delbanco is the executive editor of TIME for Kids.