Editor’s note: today’s post is from guest author Alene Nitzky of Sunspirit Wellness Services in Fort Collins.
As an oncology nurse giving chemotherapy treatments to patients, I always wondered what happened to them after they left the clinic. They had so many questions and concerns that never seemed to get answered during short doctor appointments.
I’m sure it seemed like forever to them, but to me, it seemed like their treatment period went by so fast that there wasn’t time to teach them half the information they needed. It seemed like we only did things TO them, instead of FOR them.
Patients had very little control once they were diagnosed. Suddenly their lives were turned upside down and cancer became their full-time job—with appointments, scans, test, labs, treatments, surgeries, hospitalizations, and expenses that didn’t have any regard for the order of their lives. Suddenly cancer became the boss.
When they were done with treatment, doctors would tell them, “You’re cancer-free” and show them the door. They were given a survivorship care plan with a schedule for follow-up appointments, for more scans, tests, and labs to detect any recurrence of cancer. Along with that came vague instructions to eat right, exercise, avoid tobacco and alcohol, in the form of handouts copied from the Internet, all generalized and impersonal.
There was one big problem. Their lives had been turned upside down. They still felt terrible, often for months afterward, and they had no idea of a timeline to expect for recovery. To go through all of the distress of a cancer diagnosis and the intensity of treatments: surgeries, chemotherapies, and radiation that had lasting effects, and ending up feeling like quality of life was worse than before, seemed not only like a letdown. It was downright scary, and it was doing a disservice to patients.
There needed to be a way that patients could direct their own outcomes by taking action and having more control and say over how they went forward in their lives.
Cancer Harbors™ was created to meet these needs, to fill the gaps in care. The behaviors and knowledge gaps patients had before their cancer diagnosis needed to be addressed in a personalized way in order to improve their health and quality of life after treatment. Otherwise, it was like taking a bath and getting dressed in the same old dirty clothes.
Knowledge is not enough without learning skills to take action. Instead of being passive recipients of medical interventions, patients with self-advocacy skills can insist on being included as the main member of the medical team, be more assertive in directing the outcomes of their care, be better prepared for doctor appointments, and get the knowledge and answers they need.
Cancer Harbors is an action and skill-based service to help people with cancer learn the whys and hows of better health, setting realistic expectations and goals for themselves in the timeline of treatment and recovery. It’s a low-cost, cutting-edge approach to meeting the real life needs of people who are undergoing treatment or are recovering after treatment for cancer. Through access to videos, printed information, and access to a cancer health coach you can get more peace of mind for your needs, including:
- Setting realistic and achievable goals, priorities, and expectations after treatment.
- Social skills with awkward conversations and relationships around cancer.
- Exercise, healthy eating and weight control with or without hormonal therapies.
- Living with aromatase inhibitors to reduce joint pain, fatigue, and weight gain while maintaining bone health and managing hormonal side effects.
- Coping physically and emotionally with functional and cosmetic changes in your body.
- Advocating for yourself in the healthcare system to direct your own best outcome.
- Managing energy and fatigue.
- Actively coping with lasting effects of treatment, such as poor sleep, lymphedema, and chemo brain.
- Creating a restorative setting for recovery.
- Confronting fears in constructive ways.
- Using technology and social media to connect with better support, experts and professionals for the latest and best evidence-based information.
This approach, through personalized support and coaching, easy-to-understand and ready-to-use action plans, goes beyond anything else currently available in cancer survivorship care.
It’s constantly updated and expanded to meet the needs of people working to restore their lives during and after cancer treatment.
Because living is so much more than surviving.
Alene Nitzky, Ph.D, RN, OCN, is a health coach and cancer exercise trainer specializing in meeting the quality of life and wellness needs of people with cancer. She maintains her certification in oncology nursing. She is the founder of Sunspirit Wellness Services, LLC, and the creator of Cancer Harbors™ and FIERCE™.