The Toughest Lesson

A year ago this week, I finished the last infusion in my treatment course for stage 3 breast cancer. It was technically determined that I had no evidence of disease in the fall of 2020 after six rounds of “hard chemo” and surgery. (I jokingly refer to my fall 2020-spring 2021 course as “chemo light”.) The rest of treatment after NED, to paraphrase my oncologist, was standard of care meant to prevent recurrence and to keep my genetic mutation from completely losing its shit again (okay, I may be heavily paraphrasing).

There are so many painful lessons that someone learns during cancer treatment, whether its your own diagnosis or that of a loved one. A year or so into survivorship, I’m still learning so much about this process and about my identity. Cancer changes you, whether or not you want it to. One of the toughest things I’ve learned this past year is that people do not want to hear your story.  

That last statement is a generalization, so please take it with several dashes of salt. However, it has been proven that abandoning a friend (or even a spouse) when they get a bad diagnosis is apparently a brutally common occurrence. I’ve also heard from survivors and thrivers online about how they’ve been discreetly “unfriended” because they talk “too much” about their experiences.

Cancer is a difficult story to hear. People enjoy happy endings and lighthearted tales. They don’t want to hear about nausea, or the way your eyes itch when you don’t have eyelashes, or the trembling of your limbs as you move through your initial MRI scan, terrified of what the results will show, or what your appetite is like when everything tastes like metal for six months because your body has become a toxic wasteland as chemo rages through both your good and bad cells. None of that is pleasant.

I learned to rush through the tough parts of the story, try to make it not sound so bad, or pull in a joke, or avoid it altogether. When someone recently asked me about how I found the lump, I backtracked: “Well, actually I found it when I was pregnant”– rushing forward as I noted their terrified eyes– “but it was okay, I was seeing the doctor so often then anyway, haha, now I’m doing great! Look– I have hair again!”

I don’t laugh to make light of my experience, or of cancer in general, but because if you don’t laugh, you cry, and it’s painful when you run out of tears. I’ve learned that it’s easier to share my story in writing, which I’ve been doing both through fiction and nonfiction. People can step away from the written word, think about their reaction, return to it when they feel ready. I feel like the grim reaper sneaking up on them if I share too much in person.

It’s tough to listen to someone walk you through a sad and painful story. What advice can you offer? Which words are the right ones? Even I don’t know. But I do know that most times active listening is the best gift you can offer a person. Be present. Offer a hug or help in some tangible form (a meal, a cup of coffee, an hour of babysitting).

These suggestions aren’t specific to cancer diagnoses, but to anytime someone needs help. As a teacher, I often listen to my students share about ailments, losses, heartache, and troubles at home. Not everyone is a teacher, but we could all benefit from receiving a listening ear, and we could also all benefit from being a true listener to one another more often.

Simply listening and offering a kind word is enough. I can’t tell you how much a simple card with “I’m thinking of you” meant to me when I was sitting alone in the cancer center infusion room in the midst of a pandemic not knowing what to expect next.

Each of us carries our own burdens and tragedies. Sometimes, these are written in the lines of our face and shadows of our eyes; others are dragged like invisible chains. We’re not meant to walk this life alone. Listening, truly listening, to a friend or acquaintance share about something difficult, whether it’s a loss they suffered, an illness or injury they sustained, or some traumatic experience, is tough.

Obviously, it’s more pleasant to talk about an upcoming event or even the weather. (I live in the Midwest; some days all we talk about is the weather, and for good reason. It snowed again a few days ago, though it’s been “spring” here for a month now.) It’s not easy to listen to someone else’s hardships. Sometimes, it even hurts us as listeners. But I think we need to do it. We don’t need to have all the answers, or even any answers; we just need to open our eyes and ears to one another.

Below, I’m including a list of resources specific to people going through cancer treatment as young adults and to patient caregivers more generally. Please feel free to share this post or these resources with anyone you think would benefit from them.

Young Survival Coalition

YSC’s link to caregivers and co-survivor supports

Wildfire: Literary magazine specific to young women with breast cancer

Organization specific to women with breast cancer diagnoses:

First Descents, a program that provides healing outdoor adventures to cancer survivors, those with MS, and healthcare workers. Focused on those under age 40.

List of additional resources for young people with cancer from the American Society of Clinical Oncology

Mayo’s Cancer Center blog

Additional links to resources for caregivers National Cancer Institute, Livestrong, and the National Coalition for Cancer Survivorship