It’s not what you can’t do, it’s what you are doing that counts.
There’s a common misconception that a cancer survivor is someone who is finished with cancer treatments and well into remission.
“From the minute you’re diagnosed and start fighting, you’re a survivor,” says Paula Harrelson, RN, Touro’s Cancer Survivorship Program Coordinator and a breast cancer survivor for almost 13 years.
Harrelson says that patients receiving a cancer diagnosis are so overwhelmed by information, by appointments and most of all, by emotions. Her job — using a whole-team approach — is to link patients to resources, help make their journey easier, help navigate the process, focus on the positive and help them get the best experience they can under the circumstances.
Following the initial phase of treatment, patients receive a survivorship appointment to review where they’ve come from and where they are headed. Harrelson confirms their diagnosis understanding and then creates what she calls Cancer Cliff Notes — a summary of diagnostics, pathology and treatments like chemotherapy and radiation. She assesses needs and makes referrals for other physicians a patient may need to see and how often. Half of the visit is focused on health and wellness.
“We basically do a head-to-toe checklist,” Harrelson says. Education on risk factors is key. A lot of times when people are receiving cancer care they let the rest of their healthcare slide, so the Survivorship team makes recommendations on dental appointments, skin cancer checks, colonoscopy, weight control and smoking cessation. Harrelson may see a patient several times per year as their needs change or whenever a patient would like.
Touro was ahead of the game when it launched the Survivorship Program two years ago. Similar programs are now becoming a standard of care for cancer hospitals in the United States, especially as survivor rates and years of survival increase. Touro has stayed ahead of the game as the first hospital in the state of Louisiana to offer Survivorship Training and Rehabilitation (STAR), a rehab program with physical, occupational and speech therapy specific to cancer patients.
Making the leap from chemotherapy infusion nurse to the Survivorship Program Coordinator was easy for Harrelson as she is passionate about regaining control and living well after cancer. When she was sick, the Survivorship Program concept didn’t exist. “The time after my treatments was really the most difficult,” she says. “Getting back to life, working full-time, getting over the side effects and changes in my body … there’s a lot of care that goes in to trying to be well again.” She says in some ways, surviving cancer eventually helped her take better care of herself than ever before.
“The main thing most people learn from surviving cancer is that you don’t take your health for granted,” Harrelson says. “And it helps you to appreciate how much you mean to other people and how much they mean to you. You’ve been a caregiver your whole life and now you need care. You get to figure out what matters to you, and cancer helps you sort through all the fluff and all the things that just don’t matter.”
A good Cancer Survivorship Program offers comprehensive services with a whole-team approach, including:
-Oncology providers committed to excellent survivor care
-Supportive care services
-Resources and connections of a large academic hospital
-Strong ties to community affiliates
The Cancer Survivorship Program at Touro gives patients a chance to meet one-on-one with an oncology nurse, whose expertise includes cancer care and the specific issues survivors may face during and in the years after treatment.
Touro’s Survivorship Program also provides a wide range of specialists to help with the many different challenges and stages of cancer survivorship. Patients have access to a variety of services based on their needs:
-Psychology, social work and spiritual counseling
-Survivorship Training and Rehab (STAR) customized physical therapy, occupational therapy and speech therapy
-Palliative care and pain management
-Free support group meetings with survivor health topics like bone strength, spiritual practice, medication management, stress control and healthy lifestyle choices
Harrelson says it’s very normal to struggle with adjusting to a cancer diagnosis and life after cancer. With the right information, resources and support, her patients are prepared to live their best lives both during and after cancer. Harrelson tries to focus on the positive and even having fun! She has started taking teams to the Sistah Strut breast cancer walk and is planning other events like a Relay for Life team to help patients give back and stay involved in the community. “I tell them it’s not about what you can’t do — it’s about what you are doing. Together, we’re getting better than ever!”