Keeping Your Foot Out of Your Mouth When a Loved One Is Facing Cancer

Advocacy Groups | <b>Cancer Hope Network</b>

While initial training starts the Support Volunteer journey, continuing education plays a key role in providing high-quality peer support for patient and caregiver clients. Our Hope Check: Volunteer Roundtables focus on critical topics and needs of the oncology community. Today, we share wisdom from a recent Rounds conversation.

Cancer is isolating and scary. For 40 years, Cancer Hope Network has trained cancer survivors to step into that fear, serving as mentors for newly diagnosed patients, providing comfort and companionship.

To folks whose primary experience with cancer has been seeing pro-athletes wear awareness ribbons or making gifts to a colleague’s cancer fundraiser, the isolation often faced by cancer patients can be shockingly appalling.

Jane, a longtime Support Volunteer, recognizes the fear that sometimes drives friends and family to disappear after a diagnosis is shared. “I’ve been both a cancer patient and a caregiver – most people if they find out you have cancer are either afraid or thinking ‘thank god it’s not me.’ I was lucky to have very supportive family and friends.” Russ found a similar experience when facing non-Hodgkin’s Lymphoma, but he also found comfort in unexpected places. “People are tempted to withdraw. They don’t want to bring negativity. I tell the clients I mentor to be open. You don’t know where your next bestie will come from. People you expect to be most helpful disappear. My brother called once in a year, but my neighbor down the street was also a survivor and I found myself sitting on the deck drinking iced tea almost every day.”

What Not to Say – and when to say something
For friends and loved ones learning about a diagnosis, a fear of saying the wrong thing can be paralyzing. No one wants to be “that person” who made a traumatic time worse. (Ovarian cancer survivor Gayle recalls people telling her that she “didn’t look sick.” Her response? “You don’t look stupid.”)

Discussing cancer, even a non-terminal diagnosis, often feels like a discussion of mortality. It’s a difficult choice: avoid the topic entirely, making the patient or caregiver feel ever more isolated or lean into the awkward.

For patients undergoing treatment, the choice is simple. Saying nothing is worse than saying the wrong thing. “There’s nothing that will make it all better,” shared Rachel DiQuattro, CHN’s Programs Coordinator and certified death doula who frequently leads support workshops. “Be honest. It’s ok to say ‘I want to be here for you; I don’t know how, but I want to learn.’” Perfection wasn’t most important to Support Volunteer Greg as he cared for his wife. “Care, compassion and trust are the main ingredients that allow errors to go by the boards. My matches today aren’t based on technical expertise – but on solace.”

Reaching Out in Meaningful Ways

The group discussed four approaches to connect in practical ways:

  • Communication - Once the initial conversation is complete, consistency can make up for any inadvertent slips of the tongue. Lung cancer survivor Bonnie begins her matches by listening – and then listening some more. In her “regular” life, she’s supporting a friend long-distance by setting up a call chain to keep everyone informed. “I can’t be there every minute I’d like, but I’m offering continued support.” Jane’s check-in texts with a friend have turned into a nightly phone conversation. “Knowing that someone else is going to call and check on you is especially good for long distance caregivers. It lets the person know you’re thinking of them, gives them something to look forward to.”
  • Gifts – Breast cancer survivor Rachelle was especially moved by a friend’s gift of an oncology massage. “As a massage, it wasn’t great – but what was wonderful was having my body touched in such a meaningful, loving way.”
  • Acts of Service - For Jeff, who has survived multiple cancers, a kidney transplant and more, help has come in many ways. The “touch of compassion” was particularly appreciated. “Sometimes, just a touch on a shoulder was so meaningful. Knowing that someone cared.” Support Volunteer Rachelle treasured the people who showed up to drive. “I don’t drive. Rides were really essential – for chemo, radiation, acupuncture, even trips to the grocery store. People were very good about giving me food – but wanting to be able to make my own decisions about what I could eat was really important.” She was also thankful for the friends who showed up with their sleeves rolled up. “Sometimes, the thought of doing the laundry, changing the sheets and cleaning the bathroom was just too much. Cleaning was a big help – I even had a friend who changed the kitty litter.”

    Patricia appreciated friends who gave a list of ways they could help instead of making her think of things she needed. “It’s like sales,” laughed Jeff. “Give them a choice. Do you want me to mow the lawn or wash the dishes?”

  • Rallying the troops(Acts of service 2.0)– People want to help. For loved ones separated by distance, unable to stop by for a cup of tea, a batch of dishes or a ride to chemo, coordinating local helpers is a practical way to be helpful, as Rachel found when she started a spreadsheet of needs and the local volunteers to fill those needs. “People want to help, but they don’t know what to do – they need someone who’s a little pushy to help them. I can’t help watch her kids, but I can make sure someone goes over once a week to give her a break.”

Accepting Help

For patients and caregivers used to taking care of things on their own, accepting help in any form may be difficult. But our Rounds group was quick to point out that helping is incredibly empowering for the people who are giving the help as much as the ones receiving the help. Give them the opportunity to help.

“As a caregiver, you’ll feel overwhelmed,” Jane recalls. “I tell them the mistake I made when Jeff was first diagnosed. I tried to do it on my own – and then it took a long time to accept help once I was overwhelmed. I tell them I made that mistake the first time around, but not the last time around. That was a lesson I learned, and it was a hard one.”

Whether accepting or offering help – the thought really *does* count. Want to connect with a survivor or caregiver who’s been there? Call 877-HOPENET (877.467.3638) or visit cancerhopenetwork.org.