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A patient with metastatic breast cancer describes how the right words can offer hope to patients and the wrong ones can haunt them forever.
As a patient, I cling to your every word looking for that glimmer of hope. As my oncologist you are my future. You represent faith, trust and confidence. You only have one chance to make a good first impression, and words matter, especially when it comes to cancer. The right words can give a patient hope while the wrong words can send the same patient spiraling into a dark space.
I’ve seen many different doctors over these past seven years since my diagnosis and have heard many differing opinions and experienced various styles of bedside manner. I don’t think I am the type of person who needs to be coddled. I speak from my heart and like to tell it like it is. In turn I would like for someone, in this case, doctors, to not hide or sugarcoat the truth. There are ways things can be said honestly without crushing all hopes and instilling fear and distrust.
Looking back at that very first week after my diagnosis, when my whole world came crashing down around me, I remember asking my oncologist who had been assigned to me by the hospital, “Is this all worth it?” Her answer to me was simple, yet it was an answer that has stuck with me all these years. “Yes,” she said, “You have years to live, not months.” With those few words, hope was planted deep within me.
I would later discover that with metastatic breast cancer, the average life span is only two to three years, with only about 22% living five years. Yet even with the knowledge of those statistics, seven years into this, those words still give me hope.
There are some words better left unsaid. Those words happened in the middle of my fifth year of living with metastatic breast cancer when it was decided that I would undergo 38 radiation treatments to my chest wall. I had never had radiation before and had no idea what to expect. The idea was to radiate the entire area where I was having frequent recurrences. I arrived at my appointment with the radiation oncologist for a consultation, not thinking to bring anyone with me. In hindsight I wish I had. It was during this consultation that the radiation oncologist said to me words I will never forget, words that brought me to tears and words that tore down that hope I have carried within. “This will not increase your survival,” he said.
Once the tears stopped and I could think clearly enough to respond, I asked why I was even there. He couldn’t answer that question. I knew at that moment this radiation oncologist was not a good fit for me. As much as I like for someone to tell it like it is, these were not trust building words. I felt hopeless. I had enough sense to request to never be seen by this doctor again.
Unfortunately, the next radiation oncologist wasn’t any better with his words or bedside manner either. He was made aware of the reason I requested to see someone else and this time I brought my boyfriend, Josh, along with me. As we were in the waiting room finishing up some final details, this radiation oncologist leaned in almost conspiratorially and said, “I am going to f--- you up.”
I was so stunned at that moment nothing would come out of my mouth. Did a medical professional actually say that? Josh was by my side and heard it too. To this day I still don’t know why he said what he said that first day. Those are words I can never forget. I did end up sticking it out with radiation oncologist number two, even with his foul mouth, for those 38 treatments and was able to push those words to the side.
Radiation was the longest, most challenging treatment I have endured since diagnosis. Part of that was the apprehension I felt from the lack of compassion and terrible bedside manner. The monotony of showing up every day like clockwork to be positioned into the radiation machine and remain still while your body is contorted to fit the mold was brutal. I felt dehumanized by not only the treatment but the words. I cringe even now as I drive by the building, but I’ve managed to prove them both wrong.
Words matter so much. They can lift you up just as fast as they can knock you down. I realize not everyone has a filter when they are speaking. I’m sure I’ve said something that someone has found offensive. I’ve learned to speak up when I need to. I hold onto the words of hope and try to let go of the words of discouragement. I just wish more medical professionals would realize their words do matter. I’m here. I’m listening.
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