Pay it forward: Survivors offer emotional support to others

February 1, 2017

By MARGARET GILLERMAN

"I thought it was the end of my world, my darkest day, and I picked up the phone," Carol Couch says, recalling the time she called the Providence Portland Medical Center's peer cancer support program.

The Portland, Ore., grandmother says chemotherapy for breast cancer had left her feeling drained, confined and isolated. "I couldn't load my family with any more worries," she says. 

"I was sick, I didn't want to leave my apartment, I couldn't drive. I ran my fingers through the entire Providence directory and sure enough there was the breast cancer number. I called and a person answered at the breast cancer outreach program. By the time I got through talking to her — we chatted 10 minutes — I was totally out of my funk."

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Couch

After her recovery, Couch says she felt grateful for the support she had received. And so, beginning in 2009, a year after she finished therapy she enlisted as a peer volunteer. Couch turned 80 in January.

Breast cancer survivors like Couch have been supporting their peers undergoing treatment through programs provided by Providence Health & Services since 1988. Today the main services are through the Breast Cancer Peer Support Program at Providence's two Portland hospitals, Providence St. Vincent Medical Center and Providence Portland Medical Center. Providence is now expanding peer support to patients with other cancer diagnoses as survivors express an interest in helping others with similar diagnoses. Peer support is also available for patients undergoing inpatient rehabilitation at the Providence Acute Rehabilitation Center following traumatic injury or illness, such as stroke. (See sidebar.)

Voice of experience
Beth Ruml, a nurse and licensed clinical social worker in oncology at Providence St. Vincent Medical Center, has worked with the Breast Cancer Peer Support Program on and off as it has grown.

"There's no more effective healer than a wounded healer, someone who has walked the walk," Ruml says. "People want to talk to each other. They want to know, 'How did this feel? How can I cope with this? How did you communicate about this with your family? How do you deal with a husband who doesn't want to touch you?' All these are questions only someone who has been there really understands deeply."

The peer program got its start because a breast cancer survivor, Chris Mulder, told her oncologist she had not felt emotionally supported during her treatment; she wanted to make sure other patients never felt that bereft. "It planted the seed and it grew," Ruml says. The precursor of the Providence peer support program started in that oncologist's office and Ruml facilitated those early support groups.

"I'd come in after a long work day, exhausted, not sure how I'd get through the group session. But I always left totally invigorated, inspired and charged, because that's the energy of a group of women helping women. I was inspired after each meeting, experiencing the strength of these women and their compassion for each other."

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Ruml

Vulnerability and boundaries
Today Ruml helps teach in the orientation program for peer counselors in the breast cancer program. Volunteer counselors need to be one year posttreatment and be recommended by an oncologist based on their coping skills and personality fit for the role. The precautions are needed because peer volunteering may be emotionally difficult for some cancer survivors. Ruml says preferred traits for peer counselors include emotional intelligence and good mental health.

In orientation, "we spend time talking about communication skills and boundaries, which can be tricky for the new support people," Ruml says. "Peer volunteers are vulnerable. We want them to share, but it's easy for them to get overly invested in the newly diagnosed person's journey, especially if there are a lot of similarities to their own.

"Their story is their gift, and it's also their vulnerability," Ruml says. "Women may have questions regarding options for surgery, lumpectomy or mastectomy; options for reconstruction (or not); talking to and caring for young children; dating and sexuality after breast cancer; and working through treatment," Ruml says. "These are very common situations that women care about."

Couch, the peer support volunteer, says, "People just want to share what they're concerned about to somebody who gets it." In addition to connecting with patients through referrals from the programs, Couch says she also meets patients through her volunteer work at the Jill Lematta Learning Center, a lending library in Providence Portland Medical Center's cancer center.

Typically, patients will indicate to their clinicians that they want to speak to somebody who's experienced cancer treatment, and peer mentors are paired with those patients. The meetings may be in person or by phone.  

Couch says that once she contacted a woman who had been recently diagnosed, and the woman was so upset they agreed it would be best to meet for a face-to-face conversation.

"The diagnosis to her meant what it means to many when we hear it — we think death — especially older people. That's what we grew up with." The woman said she didn't know how to tell her son about the diagnosis.

Couch told her how she explained to her family about her diagnosis.

The woman asked her, "'What's ahead? How terrible is it? What's chemo going to be like?'" Couch says, "I could share the good and bad of chemo and what doctors can do for the nausea." The woman wanted to know, "'Does radiation burn?' I could share what I experienced, so she wasn't so panicky."

By the end of their conversation, the woman was calmer and less afraid, Couch recalls, and that left Couch feeling satisfied. "I feel like I was saved on my dark day, and my goal is to be open and pay it forward," she says.

 

Peer counselor knows the tumult of sudden health crises

John Etter hasn't had an easy go of it: over almost two decades he's survived two major strokes and a minor one, chronic arrhythmia, congestive heart failure, respiratory arrest and aggressive acute leukemia. He's also had two hip replacements. All those health setbacks and comebacks have left the 65-year-old retired lawyer feeling very thankful to be alive.

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Peer counselor John Etter visits a patient at Providence Acute Rehabilitation Center last summer. The rehab unit is part of Providence Portland Medical Center in Portland, Ore.
Photo by: Jeff Krausse/© Providence Health & Services

He carries that positivity when he visits patients each week at Providence Acute Rehabilitation Center, an 18-bed facility that is part of Providence Portland Medical Center in Portland, Ore. As a peer volunteer, Etter helps with patients' emotional recovery after strokes, brain injuries, spinal cord injuries and amputations.

"I know what it's like … and how vulnerable people feel," Etter says. "Two weeks before a stroke, you're thinking about what you'd do the next week, and then in a blink of an eye, you're in the ditch, you can't move your arm or walk, you can't speak. You have had a major loss of function."

Etter offers empathy, and an upbeat take on life after rehab. Etter credits stroke recovery treatment at the inpatient rehabilitation center with giving him a "jumpstart on life" — confidence, a positive attitude and information he used to advance his recovery. After his second and most severe stroke, in 2005, he was paralyzed on his left side. He spent two weeks undergoing intensive inpatient therapy at the rehabilitation center, followed by 14 months of outpatient therapy.

"Like the pledge you might make when your plane is about to crash, I made a promise that if there's any way I can do it, I want to give something back," Etter says. "Then I found out I could be a volunteer." He has been a volunteer for about 10 years.

Ann Sandstedt was Etter's physical therapist after his stroke in 2005. Now, as clinical supervisor of the acute rehabilitation center, she oversees a staff of physical and occupational therapists and speech-language pathologists. She also runs the peer volunteer program with Lauren Logan, an assistant head nurse in the unit. The peer program was begun by a recreational therapist, Jill Davis.

"The patients love it — it's nice to have someone to talk to who has gone through acute rehabilitation and all that entails and is someone they can directly relate to," Sandstedt says. She adds that some patients experience significant depression after a stroke, brain or spinal cord injury or amputation. The peer volunteers can relate, while demonstrating that better days lie ahead. "The patients can share thoughts and feelings they're having and see someone who has gone through the program and is living a full, active life. It helps them see beyond the current time and see that there is hope, that what they're going through doesn't have to be the end of their life."

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Sandstedt

Patients at the acute rehabilitation center are medically stable but require physician supervision, nursing care and therapy intervention and are not ready to leave the hospital. "The people who work here are all highly skilled and provide top notch care; and, in a short time, most patients make improvements functionally," Sandstedt says.

While some patients may fully recover, others can't return to the way they were and must make permanent adjustments. Sandstedt tries to match patients with peer volunteers with similar diagnoses and recovery paths.

Peer volunteer and former patient Amanda Russel, 29, is a freelance illustrator. At the age of 23, Russel had sudden onset spinal cord damage caused by transverse myelitis, a neurological disease. It permanently paralyzed her from the waist down.

She underwent an intensive three-week stay at the rehabilitation center in 2010. When Russel earned her Bachelor of Fine Arts degree, her thesis included a book of paintings related to her recovery. After her graduation in 2012, she brought it to the center as a way of thanking the therapists and others who had worked with her. "They did so much for me and I felt that I owed them a lot," Russel said.

She's taught art classes at the rehabilitation center every other Sunday for several years, bringing in some of her own supplies. Sometimes she took three buses to the center. She learned to navigate the bus system using a wheelchair while she was a patient at the rehabilitation center. She's now on a hiatus from teaching the classes after some health issues.

Etter had his first stroke in 1997 at the age of 45. He says he recuperated quickly except for some challenges with word recall that lasted about two years. A succession of cardiovascular and pulmonary illnesses followed. He was diagnosed with leukemia in 2014 at a time when his doctors were preparing him for a cardiac ablation procedure to treat his heart arrhythmia. He underwent chemotherapy, and is cancer free.

Etter says with the grace of his faith and his family he has come to "appreciate the good and let it push out the bad."

Etter says when he visits a new patient, he lets the patient guide the discussion. "We talk about a lot of things, many are personal.

"I ask them about what they're going through and we talk about anything — how I felt, how they feel," he says. "Hopefully it provides them comfort and some incentive."

Some relationships outlast a patient's hospitalization. Through the volunteer program, Etter met an elderly gentleman from Iran, and learned that the man has two law degrees and is "an enlightened soul." Seven years later they are still good friends. He regularly meets another patient he befriended for coffee. Still another patient calls him frequently to ask about some symptom, "Is this normal?"

The program "reminds me to be humble and how fortunate I am to have a positive recovery," Etter says. "It keeps me grounded."

Etter says that from "life-changing" crises, "you get a new perspective. There are many things in life that are immediate, but few that are truly important. That's why I have to do this. It's important."

— MARGARET GILLERMAN

 

Copyright © 2017 by the Catholic Health Association of the United States
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