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By Jacqueline Lisk
This article is a part of Studio/B’s Breast Cancer Explored series, exploring the state of breast cancer in 2020 through stories from survivors, loved ones, doctors, and researchers.
How did Adam Smith feel when his wife, Jennifer, was diagnosed with breast cancer in June 2019? Well, he felt scared.
He and Jennifer have three children, ages three, five, and eight. Jennifer was scared, too—and, also, exhausted.
“I tried to help her as much as possible, even though she has a hard time asking or accepting help,” Adam says.
Battling cancer is always hard. Doing so amid a pandemic adds a whole other level of challenge and worry. Jennifer feels lucky her treatment was wrapping up as COVID-19 started, but she still needs to attend regular radiation and infusion appointments. Because of new safety protocols, Adam can no longer accompany her to medical visits.
“COVID has made it more difficult to be there for my wife,” he says.
The art of listening
Jennifer notes one of the best ways her friends and family supported her was just by being there. “Not giving me advice or telling me I was strong, but sitting with me, letting me cry, and commiserating with me when things were sucky instead of telling me everything was going to be ok,” she explains.
When Vipasha Agnihotrigupta, an oncology social worker at Boston Medical Center, is speaking with patients and families, she practices reflective listening, a communication strategy in which you try to understand what the speaker is communicating and reflect what you hear back to them. Agnihotrigupta advises loved ones of cancer patients to engage in reflective listening, too.
Jennifer notes knowing when to be quiet is also important. She didn’t always want to hear things like, “You are a warrior,” “You are so strong,” or “You are an inspiration.”
“I’m not any of those things. I’m just a normal person trying to stay alive. It doesn’t seem like strength when you are struggling through it,” she says.
It is not easy to be a caregiver. At times you will feel helpless, angry, scared, or just plain tired. Then you may feel guilty for having those feelings. Be patient with your loved one, and be patient with yourself.
Agnihotrigupta reminds patients and families that everyone is struggling right now—including medical professionals. She has seen people get frustrated with longer than normal wait times on calls or struggle to adjust to telemedicine.
“It is a completely new normal for everyone, but for a patient who is getting chemotherapy or just had a mastectomy, it is particularly hard to exercise patience,” she notes.
As a loved one, you can step in, not just by helping with the administrative elements of cancer, but by being a force of calm.
Tell, don’t ask
Jennifer notes many people reached out to say they would be happy to help, but when the time came that she needed something, it was hard to know where to turn. She appreciated when people told her specific things they would do—such as dropping off food or picking up her child for a playdate—rather than asking what she needed.
Meredith L. Mendelson, executive director of the Ellie Fund, a need-blind, Mass.-based organization that provides free services to ease the financial burden on cancer patients and families, notes it can be hard for patients to ask for help, especially as time goes on. Metastatic patients could be living with cancer for the rest of their lives. So, relying on family or community doesn’t always feel sustainable, she explains.
“People stop asking for help. They begin to feel like a burden. And now there’s COVID, so the whole nation is sort of switching to something new and they feel forgotten,” Mendelson says.
Remember, just because a person isn’t asking doesn’t mean they are not in need. Consider offering something specific—food, help with housekeeping or lawn maintenance, or transportation to appointments.
Four ears are better than two
As Adam and Jennifer Smith mentioned, one of the most emotionally-trying implications of COVID-19 for cancer patients is that they have to go to most medical visits alone. Carol Sneider, founder of Bakes for Breast Cancer, a grassroots nonprofit that uses dessert-oriented events to raise money for breast cancer research, says that “four ears are always better than two.”
If you can’t attend the visit in-person, help the patient prepare by writing down questions in advance. And, if there is an option to join an appointment virtually, do so.
Join a support group
Sneider launched Bakes for Breast Cancer in honor of her mother, who died from breast cancer in 1973 when Sneider was a teenager. People didn’t really talk about cancer, Sneider says.
But people do talk about cancer now, and it is an important step in healing for patients and their loved ones. Agnihotrigupta says many support groups are meeting virtually during the pandemic, and she urges both patients and caretakers to take advantage.
“Support groups allow you to share experiences and learn how other people address issues and concerns. They might make a difference or bring your spirits up,” she says.
Get real about the financial toxicity of cancer
A study on the impact of cancer care found that 42% of patients deplete their life savings during treatment. Recent American Cancer Society Cancer Action Network research finds that 46% of cancer patients and caregivers have experienced a change in their ability to pay for care due to COVID-19.
“A breast cancer diagnosis really sends someone’s life into turmoil—even someone who is employed and fully insured, even without the pandemic,” Mendelson explains. “Nobody saves for cancer. Patients need a financial health advisor, the same way they need a medical team.”
If breast cancer is affecting someone in your household, prepare for this financial reality the best you can. If you are struggling, ask your care team for guidance. They should be able to connect you to resources.
For patients who aren’t fortunate enough to have the support of family and friends, organizations like the Ellie Fund can play a crucial role. But donations are down during COVID-19. To help, consider making a donation to a charity like the Ellie Fund, Bakes for Breast Cancer, Susan G. Komen, or American Cancer Society.
For more advice for caregivers, visit cancer.org/caregivers.
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