Be that constant
As an oncology nurse navigator, Carol talks about how important it is to build trust with your patients and to give them and yourself lots of grace as you navigate new situations together.
I really do try to reflect. I very much believe in reflective nursing, and I try to look at every situation and say, "What did that teach me? How did I become..." I can say one story that I often think about because it was distressing for me initially, was a patient that came in, and she had newly-diagnosed CNS lymphoma. So, central nervous system lymphoma, so she had to be on the regimen called MTR.
And MTR is a pretty quick... Lot of things going on every two weeks. Initially, every week, you have something to take from that regimen, the rituximab. And then, every two weeks, you're in the hospital getting methotrexate. And then, you also have this drug you take every other cycle, temodar. So, it's a complex... For the nurse to sit there with the patient, look at the calendar, and you're writing, okay, this is what it's going to look like.
We're just going to go two weeks at a time because things could change. Two weeks at a time, this day, this day, this day. This day, you're going to go here. This day, over here. This day, you need the CT. [inaudible 00:01:10] I mean, all of these things. And this one family was really having a hard time with it. They weren't elderly. They were actually, I think, probably in their mid fifties, working still. And "How does this fit into our lifestyle? What about my journaling club and my book club that I go to? What about this? What about when I'm doing this, and how am I supposed to fit this into my life right now?" And I remember her husband being very angry and just upset about everything from like, "Why does this have to happen on this day?"
And his tone. And I remember standing there and walking away from that situation and being polite, "Well, this is because of this, and we'll talk again." But I remember that walk to the cancer center and almost crying because of his tone and his anger. And I didn't know how to help him, but it was distressing to me to, out of coming from out of an emotionally, in my personal life, an emotionally abusive relationship. And I was trying to separate those two. And why was he so angry? And it bothered me for so long. They came in every two weeks, and I would seem them rounding. He told me, "You know, I was so afraid. I was so afraid for my wife. I needed to know. And I know you didn't have all the answers. The doctor didn't have all the answers, but I needed to know. But you stood there and you were a constant."
And they developed trust in us as providers. About a year later, I was walking over here, and I saw them. And they waved me down. And they're like, "Carol, Carol." And she waived the folder that I had given her when she left. And it had duct tape, silver duct tape, around the paper folder. And she goes, "I want to tell you, I have kept this close to me. Every single thing that you told us, we kept in here, and this folder has meant so much. And we have made it through this journey, all of us together." And it was a great moment because I remember our interactions, at first, and how fearful they were.
It shaped my experience because it reminded me in a very strong way that when people come to you either stoic or angry or all the reinforcement we do with patients that ask repeated questions, it's because they're afraid. They are so afraid, and you really never know what's going on in somebody's mind. And so refrain from making those judgments, and just be there for them, and be that constant. And eventually, they will, hopefully, learn to trust you.