Life on the Other Side of the Hospital Gown

February 24, 2020
Patricia Jakel, MN, RN AOCN

I have been an oncology nurse for 37 years; cancer was all around, but it never occurred to me that I would be diagnosed with breast cancer. Everyone in my family tree had heart disease, and I was positive that would be my demise. Imagine my shock at the diagnosis of stage III lobular breast cancer. It knocked me down, but with the support of family, friends, and my co-workers, I was able to slowly recover and move towards treatment.

After my diagnosis, I experienced all the emotions and crazy behaviors that I had witnessed in my many, many patients. I was shocked and angry and thought, Why me? Why not me? I was exhausted from telling others and living in terror.

A patient with lymphoma taught me the word “terror,” and now I really understand the meaning. Terror is waking at 3 am in panic, planning for your children’s future minus you, wondering when the cancer will come back and thinking who will attend your memorial. I was in an awful emotional state and I had little control over my responses, I was fortunate as I was biopsied, scanned and started on a clinical trial within 5 days of the MRI. Having a plan decreased the terror, but it is always there, circling my emotions, clouding my responses, and keeping me on edge.

To assist with my diagnosis and terror, I started a journal. Meditation and journeying did help calm my scary inner thoughts. My favorite topic in my journal was Unsupportive Social Interactions (USIs). USIs are defined as specific, unsupportive responses people with cancer receive from others including spouses, family, friends and healthcare workers that can be unhelpful, avoidant, minimizing, and constraining. When patients feel unsupported, that can lead to topic avoidance, increase stress, alienation for one’s social network, depression, and poorer psychological wellbeing.1

My USIs included the following comments:

“I thought you were someone that won’t do well.” -Healthcare Worker

“You will get new perky boobs!” -“Friend”

“Why didn’t your husband find it?” - Friend

“Don’t even think about dying.” - Co-worker and friend

“You’re Pattie- you can’t have cancer.” - A doctor friend

“You should have told me.” - NP crying in clinic during my first treatment

“Why are you crying?”- MD informing me I needed a biopsy again. This would be a 5th biopsy in 2 years.

“Drink 16 oz. of celery juice every day and you will be cured.”- A healthcare professional

I have shared my story and research on USIs with many healthcare providers and I hope they have learned the lessons that I have learned as a nurse/patient.

Based on my experiences as a patient, I hold myself accountable to these principles in my daily care of oncology patients.

  • Be a great listener. You do not need to say anything — just listen, and stop talking.
  • Please think before you say anything. Your comments will stay with me for years.

  • Please don’t share your personal stories, theories, or “miracle cures.”
  • Don’t tell me “you got this.” I don’t ; I am terrified. I am not a fighter and being an oncology nurse or any HCP does not make it easier.

Being a cancer patient and nurse has taught me many life lessons. I won’t say the diagnosis has been worth the insight, but I am fortunate for the insight I gained. I always tried to live life with honestly and kindness, and continuously striving to do better. The cancer diagnosis of hasn’t changed my passion of caring for cancer patient but enhanced my understanding. Go live a great life with kindness and love to yourself and others- life can be short. Be well my friends.

Patricia Jakel, RN, co-editor in chief at Oncology Nursing News, is an advance practice nurse for the Solid Tumor Program at UCLA Healthcare. She oversees the care of 25-35 patients receiving chemotherapy, radiation therapy, symptom management, and end-of-life care. Jakel mentors new nurses to the art of oncology nursing. She is also involved in nursing research looking at moral distress and compassion fatigue. She is a frequent speaker on symptom management, new oncology treatments, resilience building and ethical issues in oncology. She has numerous publications on ethics and oncology nursing, compassion fatigue, and chemotherapy agents.

Reference

  • Figueiredo ML, et al. The role of disclosure patterns and unsupportive social interactions in well-being of breast cancer patients. Psych-Onc. 2004. Doi: 13: 96-105