Several organizations provide invaluable support to patients facing chemotherapy treatments alone.
By Diana Price
Patients undergoing chemotherapy for cancer often spend long days in an infusion room, receiving treatment. Though many treatment centers make an effort to create a welcoming environment and provide excellent care, the experience of sitting for hours can still foster a mix of anxiety and boredom that patients find difficult even in the ideal setting.
Many patients face chemotherapy alone, making treatment days even more challenging. Family members are often obligated to work or might live too far away to accompany the patient, and in some cases patients feel guilty about asking friends or family to step in.
The good news is that this need for companionship and support among patients facing chemo alone is not going unnoticed. The following profiles highlight several volunteer-driven organizations that are stepping up to ensure that patients are not alone at this challenging time, and they illustrate the powerful impact that these services provide.
When Marriann Gofonia was undergoing chemotherapy for breast cancer, her family, including her five daughters, and many friends made a point to show their support each time she went to the infusion center. Their tight-knit clan often filled the chemotherapy room at Banner Good Samaritan Medical Center in Phoenix, Arizona, with laughter and opened their arms to other patients who were receiving treatment. When Marriann passed away in 2009, her daughter, Alyssa Dinowitz, felt compelled to return to Good Samaritan to continue to share her family’s love with the patients who remained. “When my mom died, I felt an obligation to go back,” Alyssa says. “My heart was broken from her loss, but it was healing for me to continue sharing some joy—the patients were a gift to me.”
Realizing the uplifting impact that her visits had on patients who had no family or friends to accompany them to treatment, Alyssa founded Chemo Companions (chemocompanions.org), a nonprofit organization dedicated to bringing “comfort, conversation, laughter, and nourishing essentials to the chemo lounge.” With the mission to “make a positive impact on the lives of those undergoing cancer treatments by offering friendship and emotional support,” Chemo Companions matches patients in need of companionship with trained volunteers who offer their time and support during chemotherapy.
Three years since founding the organization, Alyssa continues to be inspired by the patients she meets and the depth of the connections that are made through the program. “I am humbled by the grace, dignity, and peace each of these patients embodies,” Alyssa says. “I have made lifelong friends.”
Jill Kincaid, of Evansville, Indiana, was inspired by the transformative impact that friendship and simple hospitality can have on patients undergoing chemotherapy. After accompanying her sister, Karen, to chemotherapy while she was being treated for breast cancer, Jill saw firsthand the difference that could be made by reaching out and offering basic kindness and a bit of TLC to patients who were facing chemo alone.
Jill and Karen agreed that something needed to be done to ensure that all patients were offered these basic kindnesses. Together the sisters presented a formal proposal to the treatment center where Karen was receiving care (Oncology Hematology Associates [OHA] in Newburgh, Indiana) to allow volunteers to be present in the infusion center to provide companionship and practical support to patients, as Karen wrote at the time, “because no one should have to go through chemo alone.”
In February 2012, six months after Karen passed away, the program that the sisters dreamed of—Chemo Buddies (mychemobuddies.org)—was adopted by OHA. Since that time Jill has worked tirelessly to see her sister’s spirit live on through the organization’s commitment to bringing joy and comfort to patients. Jill spends five days a week in the infusion center at OHA, along with a dedicated group of volunteers who serve three-hour shifts, to provide general support (bringing blankets, snacks, or entertainment to patients), establish relationships, and connect with patients who are otherwise alone.
For Jill, the goal is simple: be a friend. “I tell my volunteers to act as if that person in the recliner is sitting in their living room—to treat them with the same hospitality as you would a visitor in your home. Above all, don’t see them as patients but as people. Chemo is a long day, and having a friend to sit and talk with is a major stress reliever. If patients are sharing conversation with you about something in their lives, they aren’t sitting there focusing on the cancer or their fears.”
Tigerlily Foundation Chemotherapy Buddy Program
When Maimah Karmo was diagnosed with breast cancer in 2006 at age 32, she quickly realized that she faced many issues related to the diagnosis that are unique to young women with cancer. “Young women diagnosed with breast cancer often do not expect this diagnosis at such a young age,” she says. “There is a lack of support for this demographic. They are often younger than other women undergoing treatment, have young children, and face issues with fertility, work/life balance, relationships, and just an overall lack of peer interaction.”
Many young women also find themselves facing chemotherapy alone. Friends may be too busy with their own lives, family may live far away, and spouses or partners may need to care for children or maintain professional responsibilities instead of accompanying the patient to treatment.
At the conclusion of her second round of treatment, Maimah founded the Tigerlily Foundation (tigerlilyfoundation.org) to help address the many needs of young women (ages 15 to 40) diagnosed with breast cancer. Creating a program to match patients with “buddies” who could accompany them to treatment and help provide support was a priority. In 2007 the Chemotherapy Buddy Program was launched. Young women who contact the organization can request a buddy by filling out an online questionnaire, which includes specific information about diagnosis and staging; they are then matched with a volunteer who has had a similar experience. “The program provides the patient with the opportunity to connect with someone who is going through or has gone through something similar, which offers important psychosocial relief,” Maimah says.
The Tigerlily Foundation Chemotherapy Buddy Program has matched more than 200 young women since it was founded; and, like all Tigerlily programs, it is available to women in all 50 states. The program is managed by Latina Starling, a survivor who began working with the foundation as a volunteer and was later herself diagnosed with breast cancer. “I personally became her buddy after the diagnosis,” Maimah says, “and in the three years since she completed treatment, she has continued to give her time tirelessly.” Maimah hopes that the buddy program will continue to benefit women across the country. “Nobody should have to face breast cancer without the support of someone else,” she says.