This as-told-to essay is based on a conversation with Theresa Brown. It has been edited for length and clarity.
In 2017, my twin daughters had just turned 18. I was an empty nester, and I was eager to think about what I wanted to do with the rest of my life. I was looking at what my next job could be. That role, it turns out, was as a cancer patient. At age 52, I received a diagnosis of stage 1 breast cancer.
I had worked as an oncology nurse for 10 years. I thought I knew cancer. But it turns out that no matter how well you know the disease and how empathetic you think you are, you can’t understand the reality of being a cancer patient until you’re on the other side of the table.
This fall, I will have been in remission for five years. That’s the magic number where some doctors may even use the word “cured.” Reaching that milestone has given me space to reflect on being a cancer nurse and a cancer patient. This is what I’ve learned.
As a cancer patient, the level of fear you experience each day is unbelievable. It doesn’t matter how treatable the condition may be — you’re in a fight for your life. Nothing puts things under a clearer lens than being in a life-and-death situation.
Yet, it so often seemed that the care providers around me didn’t understand the stakes. For example, they were in no rush to get me my test results, making me wait a weekend when they could have easily given me a call on Friday and cut down on days of anxiety.
I understood in some ways. As a nurse, I needed to protect myself by putting walls up before my shift. I couldn’t operate effectively if I took on the terror of my patients. Yet as a patient, I wanted a provider to acknowledge and empathize with just how scary being a patient is.
Fear can put other emotions into overdrive. When I was in the process of getting a diagnosis, I had a breast ultrasound. The technician told me she saw a mass. My doctor said, “You will not leave here today without an appointment for a mammogram.”
But when I went to book the mammogram, the scheduler was gone. I sat there, shaking with sobs, tears streaming down my face, as someone told me, “Oh, you just missed her.” That person had no idea how devastating that small setback felt.
The department where I had radiation was different. I couldn’t stand the TV in their waiting room, so each and every appointment I waited in the hall. They happily came to get me outside, never making a comment about the little bit of extra work that I created for them. They knew I needed to be handled with care.
Having cancer means losing control, and good cancer treatment returns your autonomy. But the healthcare system can chug along at its own pace unless patients make their voices heard.
We deserve to have timely test results. We deserve to have concepts explained simply if we don’t understand. We deserve to be treated with empathy and have our emotional reactions respected.
Now, lots of people ask me how to get better care. I tell them to be polite, be civil, but be firm and direct. If you act with anger or emotion, you might be overlooked, but if you calmly explain that a system or individual is not creating an environment where you feel cared for, you just might get the treatment you deserve.
Theresa Brown is the author of “Healing: When a Nurse Becomes a Patient.”
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