"Experts by Experience" ... That's Us!

I just saw that a new series is being developed called "Experts by Experience." I just love that title. It is especially meaningful to me today because of a recent experience at my cancer clinic.

Years of Experience

I go for treatments every two weeks. I have been getting the same treatment at the same cancer center for 4.5 years. I think I might qualify as an "expert by experience."

The time before last when I went for my infusion, I was surprised to hear the chemo nurse (who I had never had before) read that the drug would be given over 30 minutes. The entire time that I have been in treatment, my infusion has always dripped over an hour.

I questioned the nurses (the one who was in charge of me and the one responsible for ensuring I was getting the proper drug) about the timeframe. I was soundly reprimanded by both for questioning their skills. They assured me that there were never negative reactions to Opdivo and that protocols had changed. I was not to question them. Their job was to be experts, mine was to be the patient.

But, here's the deal. I am the expert when it comes to my treatment. I am far more knowledgeable than they are where I am concerned.

Expert Patients Bring Valuable Experience

I was a little nonplussed about the change in treatment time ... and more so by their reaction to me questioning it. I had had some discussions with my oncologist a few months before about upping my dosage and decreasing the infusion time to 30 minutes. I had decided I did not want to do that because I was faring so well under the current protocol. "Why mess with success?" was my thinking ... and he agreed.

Nevertheless, I trusted that the nurses knew what they were doing and allowed the infusion to be given over 30 minutes without further questioning. However, apparently, I had not done myself any favors with my nurse. In all of the time I have gone for treatments there, I have never been treated as poorly as I was by that nurse. I assume it was because I had the audacity to question her superior knowledge.

The visit ended by the nurse yanking the needle out of my port in such a way that not only hurt when she did it but hurt for several days thereafter. There was still a scratch there this week when I went for treatment.

So ... fast forward to my infusion yesterday. My favorite chemo nurse (FCN) came in to see me. While we were visiting, I told her about the poor encounter I had had at my previous visit.

She told me that she was shocked that I had had such an experience because (1) the nurses generally fight to have me as their patient because I am easy to treat and (2) I have been getting treatments for so long that I am an expert in my specific treatments.

Don't Be Afraid to Speak Up

And, here's the most interesting part of all ... my infusion was once more dripped over an hour yesterday. My FCN called Pharmacy to learn why the infusion was over 30 minutes last time and back to an hour this time, but she wasn't able to find out. I will have to remember to ask my oncologist at my next visit just what the protocol actually is these days.

Fortunately, I fared just fine with the infusion being given over 30 minutes. But, I learned something. Next time, I will push a little harder to get an answer besides, "oh, protocols changed a week or two ago. Don't question us." Furthermore, a good nurse will listen to his or her "expert patient" rather than blowing them off or, worse, getting angry at them.

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