When Joyce C. was diagnosed with cancer, she felt powerless. “It felt like a time when I didn’t have choices.”
She is thankful that JamesCare for Life, the OSUCCC – James department offering holistic support programs for those diagnosed with cancer and their caregivers, was there giving her a sense of power back from what a cancer diagnosis initially feels like. Supported through philanthropy, this year JamesCare for Life celebrates 25 years – and after a quarter-century of serving cancer patients, survivors, and their caregivers and families, the program is more in demand than ever.
“The department has grown exponentially in the last ten years. We have a larger group of survivors to begin with because people are living longer and better after a cancer diagnosis,” says Maryam Lustberg, MD, MPH, medical director of the supportive care service line at The James. “Also, patients, survivors and advocates are speaking up and telling us it’s not just treatment that they’re interested in, but overall quality of life and making sure their diverse needs are met.”
When it was created in 1994, JamesCare for Life focused on patients’ needs right after diagnosis. Now, says Annie Trance, director, the department serves 350-500 individuals each quarter – about 75 percent of whom are survivors and 25 percent caregivers – through an increasingly diverse array of programming. “How we provide psycho-social support here at The James has evolved just like treatments have evolved to meet the changing needs of patients and families,” says Trance. “Cancer impacts every area of life. How we support patients has changed drastically because cancer treatment has changed drastically, and quality of life matters.”
JamesCare for Life’s wide-ranging programming is evidence-based, meaning it reflects the latest research within survivorship care and the cancer community. “Anything we’re offering is not just because we think it’s a good idea,” says Trance. “It’s representative of research being done in cancer care to look at the interventions that support wellness and quality of life.” JamesCare for Life offers exercise classes, expressive arts programs, nutritional guidance including a vegetable garden, education and support groups, and other programs impacting mind, body and spirit. Caregiver-specific programming includes an online support group, bereavement programs that deal with grief and loss, and a vast video library addressing topics like managing stress and meal planning.
Additional offerings include programming geared toward young adults with cancer – a group whose stage of life includes major milestones and life transitions that create special needs when dealing with cancer. From fertility and reproductive concerns to career counseling and social opportunities, JamesCare for Life is helping to address these issues and creating a social environment where young adult cancer survivors can come together and connect. JamesCare for Life also manages the Heather Pick Music Program, through which musician volunteers perform at The James to create a healing environment. They are live-streamed on the OSUCCC – James internal television station so patients may experience the performances from the comfort of their rooms.
Philanthropy from grateful patients, families and others, has made these programs possible. “It’s been wonderful to partner with people who want to give back in a meaningful way,” says Trance. “Philanthropy has enabled us to grow as a department and to expand the types of care and intervention we offer our patients.” Donations also ensure the programming is offered to anyone dealing with cancer, free of charge. “It’s important to us that we have a focus on community outreach. We see ourselves as engaging in the community and being a partner in educating the community on survivorship, cancer risk prevention and the types of support available as well,” says Trance.
Patient Jennifer B., for one, is grateful for the support. “It doesn’t matter if you are currently going through treatment or if you have been out of treatment for five years – it’s a resource for not only the patient or survivor but also the caregiver,” she says. “It’s nice to go to events where we are surrounded by families who are going through something similar, so it’s not abnormal. It’s nice to have a sense of community and lean on others when it’s a difficult time.”
How will JamesCare for Life continue to support patients and caregivers over the next 25 years? The offerings will continue to evolve as new treatments emerge and research identifies new holistic methods for helping cancer patients and survivors. And certainly, says Dr. Lustberg, “Virtual services are the way of the future. There will be additional resources through tele-technology and digital health that will make it more convenient for survivors with busy lives, families, and school and work obligations to connect and benefit.”
Getting the word out to patients and caregivers is critical. “Any survivors reading this article should know that it’s OK to reach out,” says Dr. Lustberg. “Cancer doesn’t have to be an isolating experience. There are lots of resources available, and we hope people will take advantage of them.”