Cancer Survivorship: Breaking The Myth of “Nurses are Bad Patients”

The Queen of Cups I collage by Julianna Paradisi 2017

Are nurses are the worse patients?

Upon completion of treatment for breast cancer, my surgeon remarked, “You got through treatment really well. In the beginning, I didn’t think you would.”

The comment struck me as odd, but I was curious. “Is this because I cried when you diagnosed me?”

“Yes.”

Thoughtfully, I replied, “I cried because I understood the diagnosis. I understood it would change my life.”

In return I received a patient smile.

The first plastic surgeon I chose was forthright in his opinion of me as a patient, however, “You nurses are the worse patients.”

I asked, “Are we your worse patients, or your most educated ones?”

He promptly discharged me from his care.

* * *

I received excellent treatment for breast cancer. My survival and good health are proof. But there were gaps in the emotional support I received.

It’s been nearly two decades since I had breast cancer, and all those years I accepted the label of being “a bad patient;” the one that asked questions, the one needing proof the  medical recommendations were best practice.

Then I became an oncology nurse navigator, with patients who are nurses. They have taught me I was not a bad patient, just a nurse-patient, set apart from non-nurse patients. And there are subsets of nurse-patients I help: those bringing an oncology background to their diagnosis, and those who don’t.

Nurses assume accountability for their care

Nurse-patients with oncology backgrounds manage their cancer diagnosis differently than their colleagues without. I suspect this is because they bring their own toolbox: They work with oncology surgeons, medical oncologists, and radiation oncologists. They personally know and handpick their treatment team. They’re still scared, but the support they seek is more pragmatic: how-to’s for managing treatment, work, home, and family life.

Nurses without an oncology background wonder if we are referred to top-notch practitioners, and receiving state-of-the art options, contributing more stress to our cancer diagnosis. We tend to get second, and sometimes third opinions about treatment recommendations. We are more likely to travel to nearby cities (and sometimes other states) with larger, nationally recognized cancer programs for consultations. We may delay starting treatment to fit in the extra consults. Our family and friends may not understand why we won’t simply “do what the doctor says.”

Here’s my unproven hypothesis explaining why this happens:

The Hot Seat: Nurses are compelled to advocate for themselves

Nurses, in our role of patient advocate, are educated to question doctors. We are accountable for catching, and preventing mistakes.

In my nursing education, this training happened early in the morning before our clinical days, in a potentially brutal ritual dubbed, “The Hot Seat.”

In “The Hot Seat” one by one, nursing students gave report on the patient (s) they were assigned that day: diagnosis, age, treatment plan, and goals for outcome. Our instructor cross-examined each student about everything: medication indications, dosage, side effects, and lab values to monitor. She inquired about imaging, and anticipated needs the patient may have at discharge. The more questions a student answered correctly, the more difficult the questions became. The fewer answers a student mustered, the hotter the seat became.

Nurses know unasked questions lead to harm

In The Hot Seat we learned critical thinking means always ask the next question. It’s the question you forgot to ask that leads to harm.

Nurses know the importance of asking questions. When we seek treatment outside of our specialty areas from doctors we do not know, we manage the stress by asking, “Why?”

My understanding of this means that nurses are some of my favorite patients. I remember what I needed to know to ease my stress during cancer treatment, and I offer it to my nurse-patients. Once they understand how oncology treatment works, they often become so independent in caring for themselves I rarely hear from them.

And I’ve certainly never discharged one from care.

 

 

 

Breast Cancer Issues: Physical Activity During Treatment

The following post is the second of a series resulting from preparations for a forthcoming breast cancer conference panel discussion on survivorship.

by jparadisi 2012

by jparadisi 2012

When I was diagnosed with breast cancer I was a pediatric intensive care nurse working twelve-hour shifts, a long-distance runner, practiced weight-training, and a gardener. After the diagnosis, these activities came to an abrupt halt. Surgical procedures meant no running for weeks at a time. Weight training was limited by restrictions. Chemotherapy meant avoiding infectious patients, let alone managing critically ill children with my chemo-brain. Gardening was okay, but only so long as I didn’t get cuts or wounds that could become infected due to a lowered WBC.

Surrendering an active lifestyle in exchange for the other side of the bed was not an easy adjustment, and I held out for as long as possible. During treatment I didn’t have the energy to participate in these activities to the same levels as before. I continued running after my first chemotherapy infusion until one day I completed 1 1/2 miles and then completely bonked. I had to walk back home that 1 1/2 miles with bone deep fatigue. Grudgingly, I gave up running while on chemo.

For some, physical activity is a go-to method of stress relief. For many cancer patients, when this tool is needed most, it is unavailable.  It requires developing new tools for managing stress.

It’s important for nurses and health care providers who are not physically active to understand that a lack of physical activity actually creates stress for patients who are. It’s one reason your adolescent and young adult patients often become sullen. Physical activity is part of their mind-body connection.

The median age of breast cancer diagnosis is 61, so It follows that many hospital-based exercise classes for breast cancer survivors are structured with the intent of increasing physical activity and function for older, sedentary survivors. While beneficial, these classes may not meet the needs of the physically active, regardless of their age. Breast cancer patients who beg to continue swimming, running, bicycling, and even skiing are not uncommon. Here’s some exercise tips for physically active breast cancer patients:

  • Review your level of physical activity with your medical oncologist and surgeon before resuming or starting an exercise program. Surgery remains the cornerstone treatment for breast cancer, and physical restrictions apply post-operatively to promote healing. Mastectomy, reconstruction, and lumpectomies require different periods of recuperation. Some chemotherapy regimens used to fight specific types of breast cancer have potential to affect the heart. Those with metastatic disease may have other restrictions. Forgoing your activity of choice is difficult, but it’s important to remember that taking the time to heal is an investment in overall wellness.
  • Consider alternative forms of exercise. Walking is commonly prescribed during treatment. Meditation labyrinths are a great way to get some exercise and practice mindfulness at the same time. Some hospitals, spiritual centers, and churches have them. Ask about stair climbing-I used a Stair Master (once cleared by my surgeon), and did not have the energy to run outdoors. Running machines are another option: If you get tired, you can stop without having to get back home.
  •  If you are medically cleared to use a gym make sure to bring antibacterial wipes to wipe down the machines before use, if they’re not provided: If you are receiving chemotherapy, you are more prone to infections from opportunistic germs. If you take a yoga class, (another commonly recommended activity for breast cancer patients) bring your own mat, and wear plastic flip-flops to avoid fungal infections from the studio floors.
  • Remember, physical fitness is not what you do in the short-term, it’s an accumulation of activity throughout a lifetime. Going through breast cancer treatment tests your body; it’s working hard. Support its healing through good nutrition and adequate rest.

Shifting Closer to “Where Science, Humanity and Art Converge”

A goal is a dream with a deadline.

-multiple Internet attributions.

 

I have a new job, one that I envisioned when I transitioned from pediatrics to oncology nursing in 2001.

I am an oncology nurse navigator.

If you don’t know what an oncology nurse navigator is you’re not alone. Most of the time when I tell another nurse about my new job, his or her eyes go blank, and I get a sincere, but confused, “Oh congratulations!” Surprisingly, or maybe not, it’s my layman friends who get it right away, “It’s about time the medical profession started hiring people to help us find our way through the complexity of health care.”

I can’t agree more.

Patients are referred to a navigator after a diagnosis of cancer. The role involves patient education, distress assessment, providing resources, and emotional support throughout treatment. The goal is patient-centered care that prevents patients from “falling through the cracks” of the health care system. Confusion arises because some duties of the nurse navigator resemble those of case managers and social workers, however, nurse navigators offer comprehensive oversight of patient care needs, and advocacy. Further, the American College of Surgeons’ Commission on Cancer mandates patient navigation for cancer program accreditation. A source of more information is the American Academy of Oncology Nurse Navigators’ website.

One of many adjustments is my work hours have increased from nearly full-time to full-time. But there’s so much to write about! As I get a handle on things, I suspect the focus of JParadisiRN blog will shift closer than ever to “where science, humanity, and art converge.”