One of the most important people in the life of a cancer patient is their caregiver.
“For every patient — or at least, for most — there’s always another person attached to that patient and their diagnosis,” says Kim Sambuchi. She served as the primary caregiver for both her parents when they went through cancer.
A caregiver devotes much of their time and energy to making sure the patient has everything they need during treatment, including the love and support that will help them get through it. But who supports the caregiver?
“It was really difficult,” Kim says of the time she spent caring for her mother, who faced stage 4 colon cancer, and father, who battled lymphoma within a few years of each other. “Both paths were very different. You want to be emotionally strong and show that face to the patient. But I remember leaving my mother’s room at the hospital and going out into the hallway. I couldn’t stop crying. I felt like there was no one I could turn to.”
She remembers feeling overwhelmed with information from doctors and trying to relay that information to her mother — and later, dealing with complications of her father’s treatment while trying to take care of her own family in another city.
In those desperate moments, it would have been helpful to have someone to call for advice and support, to provide a little light in a dark time.
Now Kim is hoping to be that light for others as Roswell Park Comprehensive Cancer Center introduces its Caregiver Coach program.
“It was a very insecure feeling”
Kathy Szymanski has been helping her husband Jim deal with angioimmunoblastic lymphoma, a rare disease, since his diagnosis in summer 2020. His treatment at another center started off poorly, with important tests not scheduled for weeks. Advocating required a great deal of time and stress to get timely care for him.
“I had never really been a direct caregiver to anyone who had an aggressive cancer before, especially a family member,” Kathy says. “It was a very insecure feeling of not really understanding the new terms, the new procedures and the new expectations. I was definitely out of my comfort zone.” As she tried to interpret the results of her husband’s tests, “I saw his bloodwork fluctuating up and down. I didn’t know how to process that.” She frequently made calls to her husband’s care team at Roswell Park for more information and clarifications.
When the idea of the Caregiver Coach program was mentioned to Kathy, she jumped at the chance. “I don’t do well going through things alone,” she says.
The Caregiver Coach program is based on the successful Cancer Coach program based in Roswell Park’s Resource Center: The coach acts as a friend and mentor to someone who is new to the experience, not only helping them with the important details of navigating cancer treatment and finding their way around the center, but also providing moral support and a voice of compassion when things get rough.
“It was nice for me to have the support of somebody at Roswell where I could ask questions,” Kathy says. She compares helping her husband through cancer as being in another country and not speaking the language: Gestures and symbols can only take a person so far before the barrier becomes too great.
The caregiver’s health matters, too
Kim helped Kathy remember to take care of her own needs and to take time out for herself during her husband’s treatment.
“Kathy’s unique in that she knows she needs that time for herself,” Kim says. “They have older children, but she’s the primary caretaker for her husband. When you’re in the thick of things, it’s so hard to do that. Ultimately, caregivers do need to take care of themselves and focus on their needs.”
It was a welcome reminder and a gentle nudge, Kathy says, to be reminded that her health and well-being are important and worth caring for, just as much as her husband’s health.
Kim also has been able to shed a little light on situations that didn’t go as Kathy might have expected.
When her husband finished treatment, there was no discussion about ringing the Victory Bell, Kathy says. Instead, they just went home and she let their friends know the good news. Kim explained that for some survivors, getting that good news doesn’t provide the joyous moment of a huge weight being lifted from their shoulders. Now Kathy understands that her husband might have been more worried about his health and progress than he let on.
“It was nice to hear that, yeah, that’s normal sometimes,” Kathy says.
Let's Start to Heal
This past year has been hard, but together we are stronger. Whether it’s a story of hope, inspiration or a random act of kindness, share your moments of joy with us.Share Your Story
A growing need for supportive roles
Through their phone calls, the women have talked about their families, their cancer experiences and the reassurance that things will make sense someday. Most important, Kathy says she’s glad to know Kim is only a phone call away.
“It was knowing I could call her and there’s somebody who would focus on what I needed,” Kathy says.
They hope to see the program continue to expand and offer assistance to those who once found themselves in a scary place, unsure of where to go and whom to ask for help or support.
“It’s really nice to have other people who are going through the same thing and be able to talk to them, either in a group setting or one-on-one,” Kim says. “I think most people will, at some point in their life, step into a caregiver role, maybe for a few weeks or for a few years. I think we need to bring more attention to it.”
Roswell Park is currently recruiting coaches in order to prepare them to support our caregivers in their very important role. We need to onboard the caregiver coaches before offering the program. Apply to become a Caregiver Coach today!