Oncology nurse Diane Byrnes Paul founded the Cancer Hope Network (CHN) in 1981. CHN is a non-profit organization that provides free one-on-one emotional peer support to adult cancer patients and their loved ones. The Support Volunteers are all cancer survivors who are at least one-year post-treatment or are successfully undergoing maintenance therapies. The volunteers are available to support patients during diagnosis, treatment, and recovery. In this interview with DailyNurse, Diane Paul discusses her experiences with patients as an oncology nurse and describes the work of the Cancer Hope Network and its volunteers.
DailyNurse: How does CHN address the needs of cancer patients?
Diane Paul: Our goal is simple: to connect cancer patients, survivors, and loved ones with someone who understands what they’re going through. Our professional Programs Team, made up of healthcare and social work professionals, connect clients and volunteers based on a variety of factors. Ideally, matches are based on shared diagnosis or similar treatment protocols.
Cancer is more than just a physical challenge. Life experiences have a huge impact. Our Programs Team works to meet those needs as well. Psychosocial factors – working through treatment, facing a diagnosis as the parent of young children or the helplessness of a husband who has spent his life as provider now finding himself dependent on his wife– can play a key role in finding the right volunteer/client connection. A case in point, our team matched a client who was a teacher requiring a leg amputation with another teacher who had undergone amputation. While their shared diagnosis and treatment created the initial connection, their ability to discuss how and what to disclose to their students was incredibly helpful.
One key benefit offered by CHN is the fact that our Programs Team follows up with each match, following the client and volunteer for the length of the connection. The team can provide additional resources when helpful and can step in when the needs of the client require additional support – or in the occasional instance when a client and volunteer are not a perfect fit. Using our cadre of volunteers, CHN is able to provide efficacious peer support for patients and caregivers.
DN: What are usually the first questions nurses hear from families and caregivers?
DP: Many cancer patients ask, “how are other patients doing on this treatment?” To tolerate the side effects of treatment and maintain a fighting spirit, patients need to know they are not alone in their feelings or their fight. They need hope that only a cancer survivor can provide.
Connecting with a trained survivor who is on the other side of treatment is a powerful driver of hope. As doctors and nurses, we tell patients about potential side effects and challenges. But when a survivor tells you of their isolation after a stem cell transplant and the things that got them through it, or you can talk with a survivor who’s neurogenic bladder hasn’t stopped them from playing tennis, “you will get through this” takes on new meaning. Anecdotally, we have seen that connecting with a CHN Support Volunteer can improve treatment compliance and help patients continue treatment through challenging side effects.
DN: What can cancer survivors do to support current patients?
DP: There is hope in knowing that no matter how difficult the diagnosis, how terrifying the treatment plan, or frustratingly exhausting the side effects, you are not alone and can survive. Someone who has walked this path before you and are here to walk with you. And that is where CHN’s volunteers often have a dramatic impact.
Hearing your doctor say “you have cancer” is a time-stopping moment. Our cadre of trained survivor volunteers have faced more than 80 types and subtypes of cancer, representing more than 98% of the cancers that will be diagnosed this year. They speak 15 languages and represent a cross section of demographics and life experiences (our youngest volunteer is 24 and our oldest 94.)
Thanks to that diversity, when a patient or their loved one calls CHN, we can connect them with someone who has been in a similar situation. That is what made us revolutionary in 1981 and keeps us relevant in 2020. Clients matched with a Support Volunteer can speak to someone who truly understands what they are going through.
DN: How do you find survivors and caregivers who are willing to mentor those who are currently facing the challenges of cancer treatment?
DP: Many volunteers come to us after having been matched with a Support Volunteer during their own cancer experience. People like Cyndie, who found great comfort with her Support Volunteer and has now served as a CHN volunteer for more than 20 years, helping others find comfort and hope through their treatments. Others are referred through their oncologist’s office or via support groups they have been a part of, while some find us online when researching ways to give back.
We hear time and again that training and serving as a Support Volunteer is an important step for many through survivorship. It is a way for them to “pay forward” their own experience and an opportunity to create something positive out of one of life’s worst experiences.
CHN welcomes volunteer applications from any survivor or caregiver more than one-year post-treatment. Learn more at https://www.cancerhopenetwork.org/how-to-help/volunteer/become-a-volunteer.html.
DN: What are some of the key points that you stress when training volunteer mentors?
DP: Our volunteers complete an extensive application process that includes an interview and then are required to attend either in-person or online training sessions. The training helps volunteers prepare to share their own cancer experience in a way that is helpful and supportive to patients and caregivers. It also covers best practices – setting boundaries, actively listening, guiding conversations and more.
Support Volunteers share their own experiences, but do not make treatment recommendations. The organization is nonpartisan and non-denominational. After training is complete, our volunteers are supported by our professionally led Programs Team. In addition to making matches, the team provides ongoing training and guidance for volunteers.
DN: Was there a specific experience that prompted you to make CHEMOcare/CHN a full-time project?
DP: In the early 80’s when CHN was founded, the physical side effects of treatment were more difficult than today. There were limited medications to combat the gastrointestinal, hematologic, and other toxicities patients suffered through the course of treatment. Today there are a variety of medications and complementary therapies to help people combat the side effects of undergoing cancer treatment. However, one thing has not changed. That is the psychosocial impact of the diagnosis.
I had an uncle at the time undergoing cancer treatment, and something he said resonated with me. He told me that the worst part of the treatment was what it was doing to his mind, not his body. The fear of dying, the feeling of loneliness even when surrounded by loved ones, the multiple changes to one’s life the disease evokes; these are the issues my uncle and patients all talked about. The idea for the program evolved from my uncle and my patients all needing help I could not provide. They needed to see a cancer survivor, someone who knew and understood exactly how they were feeling. I saw that after meeting with a survivor, patients had a renewed sense of hope. Through that vicarious experience they felt that they, too, could survive. That is the essence of CHN and that is why the program is so necessary to include in the armament of resources provided to patients.
About Cancer Hope Network (CHN)
Cancer Hope Network (CHN) provides free one-on-one emotional peer support to adult cancer patients and their loved ones. Our 400+ volunteers are at least one-year post-treatment or successfully undergoing maintenance therapies. They offer support from diagnosis, through treatment, and into recovery.
Most support visits take place by phone, with conversations that last between a half hour and an hour. Support visits between survivor and cancer patient or caregiver occur as often as needed. Some individuals prefer to remain in communication throughout their treatment and into survivorship – connecting before or after a major milestone like surgery or a first radiation treatment – or during regularly-scheduled calls. Email communication is also an option to stay connected. In non-pandemic times, support visits take place in person or onsite at one of our hospital or community partners.
Patients and caregivers can request a confidential match by calling 877.467.3638 (877-HOPENET) or visiting cancerhopenetwork.org. They may also be referred by nurses, social workers and other healthcare professionals An online form can be completed at https://www.cancerhopenetwork.org/. Oncology professionals may refer clients or request materials at https://www.cancerhopenetwork.org/get-support/support/referral.html
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