Saying the Word Cancer for the First Time

I remember the first time I said the word “cancer” out loud, admitting to myself that I indeed had the diagnosis. Saying this type of word for the first time was much like saying a cuss word for the first time—a forbidden fruit of sorts and brace yourself for impact kind of moment. Once you form the words and the sound of the word echoes in your ear, the initial fear of the word slowly subsides and you begin to slowly process your diagnosis. I felt like a kid in elementary school sounding out the word for the first time—can-cer much like fu-ck.

In the last year, I became a patient advocate at my local hospital. I felt I needed to be able to share my cancer journey with others to give some type of reason behind having cancer. A lot of my work involves handling patient concerns and misunderstandings. Although I am new to the healthcare industry, I am beginning to understand that most concerns are not clinical. A lot of concerns stem from communication.

In looking back at my time as a patient, I can understand why communication is crucial and how easily a patient can misunderstand or be confused when discussing his or her care and diagnosis. I remember distinctly asking my husband or mom to attend appointments with me so they could take notes. I could hear the words the oncologist was saying but at the same time, I was trying to process these words. By the time I processed the initial information, we were already discussing treatment options and surgery as I was still focused on what stage I was and what that meant, what were my chances of survival, etc. At the end of these appointments, I would quiz my husband and/or mom, making sure I understood everything correctly. I still have these notes. I look back and wonder how I was able to process and be on the other side.

From this experience, I realized the power of words and how they could be life-changing in an instant. I have never been a big fan of physicians using big words to describe diagnoses. I prefer a layman’s terms kind of approach. I realize just how ignorant, too, I was when I was getting a biopsy and not realizing that when they said that they saw something “suspicious” I should be concerned. I looked at their faces but could not quite interpret that “suspicious” meant “you probably have cancer.” Shit, why not just say that? I realize you cannot just say that but damn, the not knowing part sucked more than knowing.

On the other hand, my breast surgeon seemed to know all the right things to say and spoke to me as if I were his own daughter. This phone call brought me peace.

As an advocate, I focus more on the human experience. That is my conversational style. I prefer to walk in, introduce myself, and find something interesting about the person–where they are from, what is the best barbeque in that town–anything to establish trust and to speak in their terms. I write these facts down so I have something I can talk to them about when visiting them again.

All that to say I think that the words we say to those who are sick, have cancer, matter. They are not just patients with a God-awful diagnosis. They are someone’s mom, sister, best friend, daughter, co-worker, etc. They had a life before the diagnosis and Lord willing, they will have life afterwards. Cancer is only part of my story, not the end.

Teach patients the power of saying the word “cancer” out loud and if needed add a cuss word too. It helps. Trust me. Let us humanize how we speak about cancer and put it in terms that can processed. Give people time to process before continuing the conversation. Give the person a time-out. Let them breathe.

Cancer. I had breast cancer. I am still going to the oncologist every three months. I am in early menopause. I am only 37. Hot flashes are a bitch. I am OK and will be OK. Normalize conversations with patients. Normalize the word cancer. Normalize speaking human and less clinical.