This post is going to be about how important being heard has been to me across the years since my diagnosis in 1978 as late effects have surfaced, and in many instances, persist.
For some reason, I decided to look for an image to pair with the post before I wrote a single word. I went to my favorite site for high-resolution photographs* where photographers make their work available for use free of charge.
I searched ‘listen’ expecting images of people listening to one another to pop up. Instead images of noise-canceling headphones, earbuds, and air pods populated my screen. All things that keep an individual from being heard; it’s like having don’t talk to me written on your forehead along with the subtext I’m not listening. Ergo, you are not going to be heard.
Sign of the times, yes?!
Sad, yes?! personal opinion
My voice and my ability to articulate my concerns have been my greatest assets through the years as I’ve shared the decision-making responsibility with my healthcare providers.
Let me say, however, that being heard demands that the person on the receiving end listens to what you are communicating.
During my treatment days through to the day I left for my first year of college, my parents were my voice. It is because of their voice that I received treatment in the first place. They refused to do nothing which was the recommendation at the time.
They were heard.
As a 17-year-old with college on the horizon, I wanted to assume responsibility for my unique healthcare needs from the safety of the nest. My parents listened and they began to pass the baton to me.
I was heard.
Having eagerly accepted this new responsibility, I continued to be followed by my pediatrician in the primary care setting. You see, I viewed myself as a healthy person [and] healthy people are seen by primary care providers, not pediatric oncologists though I know they were collaborating in the background.
I was heard.
My pediatrician [and] my parents continued to educate me about the potential long term implications of my cancer treatment: ovarian failure, infertility, premature menopause, recurrence, breast cancer, thyroid cancer, skin cancer, heart failure, so on [and] so forth.
It was quite an intimidating list, thus it was delivered in bite-size pieces throughout my teenage years. By the time, I was leaving for college, I was well aware of the risks, the signs, [and] the symptoms I needed to report in short order IF they occurred.
They were heard loud and clear; this was serious business!
The kicker was there was no consensus on how often and how I should be screened for these late effects. So, WE decided on an annual history and physical along with a chest x-ray.
I walked away from my treatment with 2 things: an intermittent chronic cough [and] a major chest wall deformity. Both of which were the result of my radiation therapy.
What is significant about this was my propensity to develop pneumonia with upper respiratory infections [and] the decrease in the degree to which I can expand my lungs. CT scans became a knee jerk reaction when my cough flared or I developed a cold that would linger a tad longer than in others.
I knew they were looking for lung metastases with each scan and I also knew I didn’t want to live in fear every time I coughed. So, for awhile, I stopped reporting my cough. I got away with it because I was in college now. Sooner or later though my mom would pick up on it and a CT scan was booked until I finally said, “no more.”
I was heard.
I went to nursing school at Johns Hopkins University’s School of Nursing and I was clear on my career objective. I wanted to be a pediatric oncology nurse and I wanted ALL of my clinical rotations to be within the cancer center.
I was heard and granted the privilege of caring for many adults, children, and teenagers being treated for cancer.
It was during my years at Hopkins that I began to envision survivorship within the context of wellness. Individuals receiving primary care that included screenings for late effects as communicated by pediatric oncology in the form of a treatment summary.
Little did I know that Wendy Hobbie, ARNP was already providing late effects care at Children’s Hospital of Philadelphia; however, her practice was within the cancer center.
In 2000, I was hired by Dartmouth Hitchcock Medical Center to serve as their pediatric oncology nurse practitioner. I provided active therapy care, end of life care, and survivorship care. In fact, I was able to bring my vision to fruition in collaboration with the Department of Pediatrics.
I was heard, and more importantly, my patients were heard.
Sadly, I also know what it is like to go unheard, to not have a voice in my care. I was unheard for 42 days following my heart transplant in 2008 and I depended on my husband to be my voice.
He did a phenomenal job, but I was still frustrated by my inability to communicate with him and with my medical/surgical team. Don’t get me wrong, they tried so hard to understand what I was trying to say, but usually to no avail.
I wasn’t being heard, understood.
As a patient, you have the right to refuse a medication, a procedure, any type of intervention that you don’t want.
There were a few things that I refused while in the ICU. One was a medication, Pentamidine, used to prevent a specific type of pneumonia post- transplant in patients who are allergic to sulfa-based drugs like myself.
I wasn’t heard, understood.
The pentamidine was given and I promptly had an anaphylactic reaction. I had no idea why I wouldn’t give my consent: intuitive refusal, lack of understanding, or perhaps, an exertion of control.
Regardless, I wasn’t heard, understood.
Today, largely because of my voice being heard, I am the benefactor of excellent healthcare provided by the best internist in the metro Atlanta area and a second to none group of specialists that we bring in when they are needed.
Relationship building with each of my providers has taken an investment of time on both sides, and we’ve learned a lot along the way. Of this I am certain, I am screened with appropriate diagnostics for age-related conditions AND the potential late effects of my cancer treatment at appropriate intervals.
My providers listen and I am heard just as I listen and they are heard. We are partners in optimizing my health [and] minimizing risk, illness.
Fellow traveler, I encourage you to know your treatment history [and] the recommended screening guidelines for adult survivors of childhood [and] adolescent cancer, then find your voice and make sure you are being heard by your providers.
Be gentle and patient with yourself as your voice grows over time; also, be patient with your parents as letting go of responsibility for you, your healthcare isn’t an easy thing.
If you find yourself in need of informational or emotional support as you travel this path, please feel free to reach out.
You are not alone.
*Photo Credit: unsplash