One of the most important things for me as I have navigated the rare and stigmatized diagnosis of anal cancer is the maintenance of my dignity and respect. And although I personally, as a patient and advocate for my dreadful disease, have persevered head held high, I was reminded drastically this past week that not everyone embraces that mindset.
I was in a place where I had come to expect unconditional support, the imaging center where I receive my follow up care. I was being prepped for my PET scan for restaging so naturally tension was running high for me. I am one year out from my last recurrence and my confidence in my body's ability to maintain my NED status is not very high.
Perhaps that makes me more sensitive. Be that as it may, I had just been led back to the PET preparation room. It's a long unit with tiny curtained doored cubicle just big enough for a recliner. They have back-lit photos of nature scenes in them I'm sure were placed to help soothe and relax in that magic hour of "no stimuli" in which cell phones, books and television are not allowed. This is of no consequence to me as I can take a nap anytime and anywhere the opportunity presents itself to me. I was weighed and measured (I haven't grown - lol) and then led to cubicle #13. I sat in the chair, a cozy warm blanket offered to me while I waited for my radioactive injection of sugar.
Enter my nurse, stage right, pulling back the curtain and wheeling in the small table with all the things needed to start my IV. She introduces herself and sits on a small wheeled stool at my chair side. I say hello and answer all the required questions. Yes I had been on a low carb diet since yesterday and no I had not consumed anything other than water for the last 6 hours. No candy, gum or mints consumed. I was good to go. We chatted as she searched my right arm for an acceptable vein. When I mentioned my profession our conversation eased into an easy camaraderie, nurse to nurse.
The discussion naturally wove it's way to my cancer and when I told her I had anal cancer she looked over her glasses and said to me "Not the HPV kind, right?" with a judgmental tone that I have heard before so many times on this journey. I didn't say anything to her but was thinking that I couldn't believe my ears. First of all, there is no place in the care of cancer patients for that kind of behavior. You may wonder why I just didn't call her out on her comment. I am well equipped with the facts about anal cancer, HPV prevalence in the USA, and the fact that my tumors all tested negative for the virus. I think that as a patient in a vulnerable position it is a very difficult thing to do and frankly, I shouldn't ever have to do anything like that. People are separated from their loved ones and caregivers for this test prep and there is a trust level there that has to exist. I was disappointed in her thoughtless words. They displayed lack of compassion and her ignorance about my disease so I immediately mentally checked out. She seemed puzzled at my sudden regression from conversation as she finished her work quickly saying that someone would be in to inject me shortly. The gentleman that appeared 10 minutes later with the lead covered syringe containing the prescribed calculated dose was kind and warm buffering the acidity left behind by my last encounter.
Let me be clear, my cancer is rare and I don't think every nurse can be an expert on the nuances of every kind of cancer. However, compassion needs to be doled out in generous portions. There is no room for blaming victims for their cancer. It makes me mindful as I go about caring for the cardiac patients in my community to be ever conscious about the words on my lips because I want them to know that I care about their condition and their dignity is paramount to me. As nurses we need to remember to speak kindly and not judge...our patients are listening.