I created a Twitter account for the blog. I wanted to be able to share my story, my trials and tribulations, and my successes with a wider audience than just my friends and family. One of the accounts I follow on Twitter is @anticancerclub, which is a private blog turned media site. One of the articles posted there the other day was a letter from a woman who is an oncology nurse who also now, herself, a cancer patient. Her blog is called, Here Comes the Sun.
The post is titled, “Dear every cancer patient I ever took care of, I’m sorry. I didn’t get it.”
I think this, and other letters like it, are must reads for any person who cares for someone with cancer.
There is an arrogance that comes with being the one who went to understand how to treat disease, particularly cancer. Or there’s the failure of fallibility that comes with going to school for 12+ years to be a doctor. I see this arrogance in some of my own healthcare professionals. I think I notice it more in oncology than I did with my orthopedic surgeons or my internists. Not that they were without their moments.
In oncology, the more arrogant ones have this abject certainty that whatever side effect you have will go away in x weeks or months or within a year. They don’t know. They have no experience. They don’t participate in the support groups. They don’t hear the voices of the millions who were treated and are recovering still 10 and 20 years later who say they still suffer the after effects of chemotherapy. These doctors and nurses only have what they’ve gotten from the pharmaceutical companies or what they’ve seen in other patients, IF they were paying any attention. To be clear, quality of life before, during and after chemo is not generally forefront on their radar screens.
There needs to be a special set of training courses for healthcare professionals to learn how to put their egos aside and just listen. To each other and to their patients. I spent two days caught in the middle between three departments in the hospital who couldn’t do this. I also spent the better part of a week going back and forth with my oncologist about whether or not I needed a trip to the ER when I got a cold virus. Why? Because we were talking past each other. Yes, it was as much my fault as it was hers. Cancer, and all the emotion wrapped around it, also contributed to my inability to make sure that I was asking the right questions or to state what my needs were clearly.
When I was in the surgeon’s office the other day for my surgical consult, I felt like she made the right faces when I talked about the effects of chemo on my body. Those faces meant that she had some level of understanding how much it sucks to go through all this treatment, and how much she understood how badly I want to get through the surgery and radiation so I can breathe and maybe start to live my life again. Funny how all it takes to communicate empathy sometimes is a look. Thank you to those doctors and nurses who do get it.