The first time I had cancer in 2006, I was more passive and more trusting.
My breast surgeon had a personal preference for a port in my arm rather than the chest, so that’s what she did without discussing pros and cons with me. A port in the arm requires a blood thinner and my dosage turned out not to be high enough, so my body produced blood clots and a month later my arm started hurting. I called the surgeon’s office on a Friday and they paged her, but she had gone camping and never got the page. I did not try a second time, so I suffered all weekend with a steadily worsening condition that left me with permanent vascular damage from post thrombotic syndrome.
I later learned my surgeon expected me to call the cancer center for any problems like that. I had naively expected her to be the one to help me since she was the one who installed the port. The miscommunication and subsequent consequences taught me a lesson: I could not hand over my care blindly to anyone else. There were limits to their involvement.
When I was diagnosed a second time, which was during the 2020 COVID shutdowns, I needed a completely new care team because I had moved to a different state and I attended most appointments alone due to COVID policies. My new oncologist, a man, made a comment that was condescending. It sparked an internal battle about whether should try educating this arrogant man in how to speak to women. Did I have the energy for that battle at a time when I felt stressed and vulnerable?
I decided to find a new oncologist. Moreover, I conducted an interview during the first appointment to make sure I felt comfortable working with her.
While the hospital where I had gotten my biopsy was staffed with mostly caring and competent nurses and administrative staff, the radiologist ignored me when I made it clear multiple times that I wanted a positive diagnosis to be delivered directly to me and not just to my oncologist. I had already had my annual checkup with the oncologist, you see, so I had no reason to return that year unless cancer created a reason to return.
What happened? The radiologist left me in the torment of not knowing all weekend and into the following week after a Thursday biopsy, wondering if I had cancer or not. He alerted the oncologist’s office the day after the biopsy, but I did not get an answer until early the next week after leaving multiple messages and finally speaking to his assistant because he would not return my calls.
I decided my money and my insurance company’s money could be better spent with people who would listen to me, so I never returned to that hospital, its doctors, or its breast center.
When I went through radiation therapy, the radiation oncology nurse gave me a packet of instructions that obviously had not changed in ages. It included advice about the avoidance of deodorant and restrictions around topical creams/ointments considered safe to use during treatment that were not based on evidence but were instead based on assumptions never actually proven with research.
How did I reach that conclusion? It just so happened that I was in grad school at the time, working on a doctoral degree and preparing to start the dissertation phase. I had been taught how to conduct research and how to use critical thinking to assess the validity of statements. When I researched peer reviewed articles, looking for sources within the last five years that addressed the safety of using deodorant during radiation therapy for breast cancer where the radiation beams could potentially reach the armpit, I learned that the scant studies conducted in this area found no skin reactions statistically more severe for people who used deodorant than for people who did not. It did not matter whether deodorant was applied thickly or lightly, and the timing of deodorant application to treatment did not matter.
Likewise, my research found that ingesting foods and dietary supplements with antioxidants could work against the benefits of radiation therapy (like the nurse said), but the application of topical creams that included antioxidants, such as bag balm or calendula cream, did not put patients at risk. In other words, the nurse’s advice was wrong. The doctor backed up my wish to use calendula cream on my skin, but he would not tell the nurse to stop miseducating patients because she did not report to him.
So, I wrote a letter to the executives of the cancer center’s parent company and presented my research and sources. They conducted their own investigation and eventually agreed to change their standard of care protocols.
The person I was before I had cancer would never have stood up for myself like this. The person I became after cancer is stronger, fiercer, more tactful and less willing to put up with facilities and medical professionals who do not treat me with professionalism and kindness. I’m not a jerk about it. I just don’t put up with crap.
These days I’m using that mindset of how to look after myself and applying those lessons to care for a parent with dementia.
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