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Beth Thompson is the Nurse Navigator/Educator in the LiveWell Center for Young Women with Breast Cancer at the Johns Hopkins Kimmel Cancer Center. In this role, she provides education and support to women age 45 and younger and their families, recognizing the unique experience of young adults and families living through and with cancer. Following many years of critical care nursing, Beth was a busy wife and mother of four when she was diagnosed with breast cancer at age 40, and finds these personal and professional experiences invaluable in her education and support of patients and families in crisis. She is especially passionate about patient advocacy and giving voice to the patient experience. Follow her on Twitter @BreastCaUnder45
Strangers in a Strange Land
Maybe I just had travelers on my mind, late in the day, the day before Thanksgiving, as I walked through the waiting room. Maybe thatâ€™s why the people there all looked to me like pilgrims.
PUBLISHED: 12:20 AM, MON DECEMBER 14, 2015
It seems that everywhere we look this time of year, people are traveling. Modern families brave busy airports and highways to share the holidays, and ancient ones follow stars at night in the bedtime stories of the season. In troubling images on the evening news, refugee families pile dangerously in lifeboats and embark on treacherous ocean journeys in search of safety and a better life. So maybe I just had travelers on my mind, late in the day, the day before Thanksgiving, as I walked through the waiting room. Maybe that’s why the people there all looked to me like pilgrims.
The waiting area in our busy cancer center always seems to be crowded with patients; they range from the wealthy, well-dressed and well-appearing to the gravely ill, hunched over in wheelchairs, desperately-worried-looking family members at their side. But as I walked through the waiting area that day, the few people still there were exclusively the latter. No one would have chosen to be waiting there so late, unless the alternative was more dangerous, and I could imagine the conversations that had brought them there: "Things are worse, can we come?" "We'll work you in, just get here when you can."
They all did the same thing as I walked through, the same thing I’ve started to notice that folks in the waiting room always do if you really look at them when you walk past: they look up, meet your gaze, return your smile with a childlike, expectant look that breaks your heart a little. Wordlessly, hopefully, their expressions seem to say, "Are you here for me?" And I couldn't help but think about the journeys our patients are on, too.
It is times like these when my own experience as a cancer patient comes back to me in a flash. I felt as though I had awakened mysteriously, reluctantly, in a foreign land, a dangerous one that I neither planned nor intended to visit, and I desperately wanted to return home. Even (especially, perhaps) after a long career in nursing, I was shocked to receive the diagnosis, and understood all too well that I needed to become fluent in this new language, and fast; a lot was at stake. The air was a little too thin and I couldn't seem to breath quite right; the fear that wracked my body and mind seemed as much a threat to my well-being as the cancer they said was hiding in my breast. I remember how it felt to wait, in the waiting area, in the exam room, for the doctor, for the news, for the morning. Empathizing with patients over a long nursing career, imagining how they must feel, had done nothing to prepare me for this.
Most of the time, though, I didn’t let on how hard it was; I was too busy marketing myself as a “good” patient. I wanted to be seen as informed but not inappropriate, discerning but not difficult. I wanted to make decisions that my team privately agreed with, and hoped they’d let me know with a wink and a nod that I was doing “the right thing." I chose my outfits carefully and fixed my makeup in the car, as if looking pulled together would make me so. I made liberal use of my ICU nurse skills in anticipating and preparing for the worst case scenario, so as to appear an empowered and educated advocate for myself — without regard for how miserable and afraid that approach made me. I was far more nurse than patient and I tried hard not to let it – any of it – show.
I know from my own experience that it is so much scarier and harder than our pilgrim patients let on. Their daily work and lives do not generally include talking about whether you have the “good kind” or the “bad kind” of cancer and the most serious, life-threatening side effects of chemotherapy, and it is beyond surreal to find themselves doing so. They journey farther than we know, over rough seas and through dark nights, from the moment they hear the unbelievable news that they have cancer. We see them before, during, and after they have searched for and summoned every emotional resource they’ve ever had so that they can move beyond the shock and start to make a plan. Some of our travelers have borrowed the cab fare, or have driven all the way from Ohio. Some have brought along their inability to read, but lack a single friend or family member to accompany them. Many travels have been made arduous because the passenger distrusts doctors, is more comfortable avoiding things, or dreads above all else returning to the hospital where their mother died. Some journeys are slowed by the heavy pack of shame: Will we ask about their disease? Will we judge their abortions, their drug use, their mental illness? We do not travel with them on the biggest part of their journey; we only see their snapshots along the way.
It is the time of year — and a time in history — when pilgrims are seeking refuge. We only need to look in our waiting rooms to provide it. We do not have to know where they have been or even where they are going on this journey. We only have to walk with them a little while, to meet their gaze, return their smile. “Yes," we can say to our weary travelers, "I am here for you.”
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More from Beth Thompson, RN, MSN, CBCN
Maybe in these most profound moments after a diagnosis of breast cancer, we are called to be still.
PUBLISHED: Tue March 15 2016