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:

1. 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.”
   
   
2. 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.” (Looking for other cancer-specific gifts? Visit our friends at Mend Together who provide curated gift options, along with a handy updater tool and (coming soon!) volunteer signups. cancerhopenetwork.org/mendtogether)
   
   
3. 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?”
   
   
4. 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 click HERE.

The post What do I say? Keeping your foot out of your mouth when a loved one is facing cancer. appeared first on Cancer Hope Network.

For every cancer patient fighting through tears and depression, there are others whose experience includes rage and frustration. For four decades, CHN’s trained volunteers have been providing one-on-one peer support to cancer patients and their loved ones, and they’ve seen it all. As they navigate hard conversations with their matches, CHN’s Programs Team is here to help.  

Each month, we host a Volunteer Roundtable. Rounds are part of our ongoing Hope Check series and provide an opportunity for ongoing training and discussion.  

Earlier this year, our discussion focused on handling controversial topics and finding hope in difficult conversations. The session was led by CHN social worker Maggie Koonz and included a review of best practices and literature.  

The volunteers who joined the discussion represented a vast array of experiences and time with CHN. From Donna, who’s “been with Cancer Hope since before it was called Cancer Hope Network!” to Terry who was celebrating her one-week anniversary as a volunteer, the group was engaged in sharing their thoughts on difficult conversations.  

The discussion centered on three deep-seated emotional reasons behind a patient’s outburst and ways to find what works for each conversation.  

Fear 
“When the topic is treatment, they may not be trying to convince you. They may be trying to convince themselves. It’s ok to say I don’t know,” said lung cancer survivor Sue. “They may think I’m an idiot, but they won’t start to fight with me or get me into a situation I don’t want to be part of.”  

“When clients are bringing that topic up, it’s often driven by fear. Sometimes, they need comfort. Sometimes that fear is increased by the unknown. Using their words to change the subject and get them talking about their cancer or chemo can be helpful.” Support Volunteer Donna has had similar experiences. “When someone is fighting, it’s often because of their fear.” She works to help people find practical ways forward through their fear.  

Anger 
For clients who suffered through misdiagnosis or botched treatments, there may be anger. Sometimes, that anger is directed at decisions they’ve made themselves. “I’m still mad at myself that I was a smoker” is common. Support Volunteer Teres, who survived colon cancer, shuts those conversations down. “I encourage my clients to focus their energy on things they can change. Guilt doesn’t do anything.”  

Loss of Control 
Cancer is a loss of control. Rachelle, a breast cancer survivor, recognizes that lashing out is sometimes a way to search for that lost control. She directs conversations to topics and activities that will acknowledge that fact. “What will help them have agency? Sometimes, people aren’t looking for advice.”  

Whatever the challenges our clients are facing, as survivors and caregivers, Support Volunteers have a unique ability to understand. “Just picking up the phone is an incredible act of vulnerability and courage,” said CHN Coordinator and social worker Maggie Koonz.  

“It’s important to be vulnerable,” said Teres. “When we as volunteers truly share our circumstances, and how far we’ve come, it gives our patients a feeling of hope.” Greg finds that his lived experience, and his ability to answer the “Are my feelings normal?” questions produce a sense of palpable relief. “Being vulnerable with a person makes a connection very fast.”  

That vulnerability and connection builds bridges past the fear, anger and loss of control. It allows real communication to take place and hope to take hold. Looking for connection? Want to build a bridge to hope? Click HERE or call 877.467.3638 (877-HOPENET) to get matched with a Support Volunteer.  

The post Reasons Behind the Rage: How to help when cancer patients lash out appeared first on Cancer Hope Network.

It’s hard to hear your doctor say the words “You have cancer.” It’s heartbreaking when your friend or family member shares their diagnosis. Once the shock wears off, the questions and fears can be overwhelming.

How should I respond? What if I say the wrong thing? What are the best ways to help? Words are failing me. I’m scared. I want to DO something.

We’ve talked to experts – the cancer survivors and caregivers who serve as CHN Support Volunteers – and have five practical ways to help.

Choose your words carefully. Or just be.
It sounds simple. But in their rush to find common ground, people say some pretty awful things. “My aunt/cousin/colleague’s friend died from that!” “Did you smoke?” “Have you tried (insert alternative therapy here)?”

Think first. Don’t blurt out the first thing that comes to mind. There’s still a chance you’ll say something you wish you could take back – but it’s much less likely.

It’s ok to talk about topics other than cancer. “You don’t need to say ‘I’m sure it’s gonna be ok,’” suggests two-time survivor Dale. “You don’t know that. Keeping the conversation as normal as possible was so meaningful.”

Still not sure what to say? Saying nothing is ok too. Sometimes, there aren’t right words. But your presence – physically or digitally – can make all the difference.

Don’t ask, do.
Grabbing your keys (and a mask!) can help too. Survivor Ed recalls how meaningful it was to have his brother-in-law driving him to treatment. Support Volunteer Mona’s friends took her dancing after her first chemo. “My friends were there to encourage me and give me strength when I was weak. I realized it’s true that you never know what strangers will become your friends and family.”

Asking for help is difficult. Offering help removes that burden from the patient we love. Anything that moves beyond “let me know if you need anything” is progress. Support Volunteer Kathy remembers small, everyday gifts of time and help. “Sometimes, those ordinary moments are the best moments. The little things mean so much more than the big.”

Check in. Consistently.
Time and again, survivors remember the loneliness and isolation cancer brought. “I found out who my friends are. And who they weren’t,” said long-term cervical survivor Ellen. “Some people shut down and turned away. I know cancer scares a lot of people. You don’t know what to say. I don’t myself. But people who were just there made a huge difference. The smallest kindnesses mean something.”

Life’s busy. Checking in matters, but it doesn’t have to be dramatic. Survivor after survivor mentioned silly emails, funny memes and the quick call to say hello.

If life keeps getting in the way, setting a reminder or alarm is a good way to build the consistency you want to give and that your loved one so desperately needs.

Think practical. Think small.
Small portions make a big difference. Jenn recalls friends who brought a meal each week, “it was often enough that we could eat for a couple days. It wasn’t too much – and it was spaced out.” For caregiver Marlys, small, freezer-ready dishes made life while her husband was in hospice care more manageable.

If cooking’s not for you, gifts like pajamas, hats or (audio!) books are loving that’s a simple click away. Our friends at MendTogether have created a wonderful suite of resources, including cancer-specific gifts for purchase. Click HERE and a portion of all sales support Cancer Hope Network. Cleaning services make life easier. This really is one of those times that the thought counts.

Connect
Help isn’t just for patients. For caregivers thrust into a world of appointments and pickups and newfound duties while balancing their own responsibilities, it’s easy to feel overwhelmed. It’s also easy to feel guilty about being overwhelmed when you feel you “should” be focused on your loved one who “has it worse.”

“You have to call and get help. I’d call my daughter to come stay with him for a few hours. You need to have someone you can call on so you can take breaks. I couldn’t let myself get worn down – my oncologist said I had to listen to my body – no matter if it’s 80 degrees out and you should be out planting flowers, if you’re tired, lay down and take a nap. You can’t do it by yourself. You’re a person, you’re a human and you cannot.” ~Anne, survivor, caregiver

Most of all, remember that you and your friend are not alone. This journey is new for you, but you’re not the first to travel this road.

Speaking with someone who has faced a similar experience can provide comfort and hope. It can also provide more practical solutions and tips. Request a caregiver/friend match for yourself – or encourage your friend to request a free and confidential match with a trained survivor Support Volunteer.

“Doctors can only go so far – they’ll feed you the information that’s needed,” says esophageal survivor Joe. “Cancer Hope Network has volunteers who have gone through the gauntlet and we’re able to talk to people on the same level and go through what’s about to happen to them.”

The post How to help when cancer shows up appeared first on Cancer Hope Network.