From a Patient’s Perspective: A Letter to Oncology Teams

November 2, 2023
Suzanne Adriana Remington
Suzanne Adriana Remington

Suzanne Adriana Remington, a retired behavior analyst from Connecticut, has been fighting non-small cell lung cancer (NSCLC) since 2019. Like many NSCLC fighters, she never smoked. In fact, she was an avid runner before her diagnosis. Suzanne has spent most of her working life helping children, and now volunteers with children involved in the court system. She also belongs to ALK-Positive Inc, a group named for the gene that drives their particular cancer. They not only support each other, but raise money to fund their own research. This allows cancer fighters and cancer researchers to truly work together to find a cure.

Dear every oncology team...

You know when you are taking a photo of an individual flower and you get a beautiful close up, worthy of duplication? It can be so beautiful. And you think that is the best way to photograph that particular flower. But then another person takes a photo of the same flower through a wider lens. The flower is now seen as part of field of flowers on a sunny day, with deer in the background. Both photos are of the same place; both are beautiful. And both tell a completely different story.

Even the best of oncology teams might spend too much time taking close-ups of their patients and not enough time looking through the wider lens. I recently felt like one of those patients. A few weeks ago, I asked for a referral to an oncology cardiologist. The nurse/gatekeepers denied the request. Turns out my oncologist was unaware the request was ever made. Last week, I submitted pharmacy-related forms for completion; all but four lines and a signature needed the doctor’s attention. I then called the next day for a progress report. I was told that “things don’t happen overnight” and “I know you are anxious”. Both of these condescending statements focus on the request and not the patient. If one were to widen out the lens, they might find a patient who is self-advocating, trying her best to help the process along. Because I was looking through a wider, hopeful lens -- in which patients and oncology teams ideally work together. I was not anxious. Nor do I like people assuming they can even guess what a person with a lifethreatening illness is feeling. I am simply aware of how busy oncology teams are. And I also understand, as I expect we all do, that the submitted form means that I am one step closer to my new oncology medication; one step closer to my new lifeline. Because that is the real bigger picture. That medication is the literal lifeline for oncology patients. And oncology teams are the ones throwing out the rafts. So, if a patient is making multiple phone calls for a simple request, it is because she feels like she is drowning. This is not anxiety. This is her reality.

Most cancer patients have their benchmark goals. They want to see their child graduate. They want to hold their first grandchild. They want to live to see a cure. These benchmarks are the landscape in which we are forced to live. And most of us do so with grace and with hope. Although it is wonderful when oncology teams can use their close-up lenses and see a patient’s many beautiful details, there is rarely time for that in the busy world of fighting cancer. Most circumstances call for a wide-lens approach. I ask all oncology teams to try to see us through those lenses. Throw those life rafts. We are stronger together.

Sincerely,

Every oncology patient


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