I went to see a different primary care doctor yesterday than my usual. I was prepared to give him my cancer elevator speech, but he came in, said, “Hi, I’m Dr. So and So. I just reviewed your medical history for the past couple years.” I was shocked. “Oh! It’s a long history.”
I think my shock says a lot about what two years in the medical system has done to my opinion of doctors. Or maybe just my perception of how much time and thought they put into my case when i’m not sitting right in front of them. Of course, they have hundreds of other, sicker patients. But my experience and my health is the most important thing to me–I want to believe that it’s the most important thing to them, too. When I was first diagnosed, there was a lot of activity going on behind the scenes, meetings being had, phone calls being made, slides being sent off all around the world.
Now I get surprised when a doctor does what he is supposed to to–something so basic as spend ten minutes reading my medical history before the visit, or even spend 5 minutes writing up a report after the visit. One of my oncologists, who I see now at least once per month reviews my history and dictates his report in the exam room, and I still don’t think he knows my case from the patient in the next room. During my transplant evaluation, only one doctor I saw read my history before the appointment. I feel a little betrayed. At the time, I called it a liver transplant conveyor belt. Now, maybe, i’m on the chronic cancer conveyor belt.
Don’t get me wrong. Pretty much all of my doctors are wonderful. But I am still learning how to talk to each one to get the most of out my short appointments with them. How to write emails or leave messages to remind them of things they’re supposed to be doing. How, to use an overused word in healthcare, to be my own advocate.
My parents and I learned the importance of this early on. It was my third appointment after I was diagnosed, when we were still learning the lingo and figuring things out. Now we look up diagrams of the mTOR pathway while we’re waiting for the doctor. Then, we didn’t know mTOR from velocirapTOR. My third appointment was with an endocrinologist expert who came highly recommended by my surgeon. The doctor comes in and we immediately start asking him question after question. We didn’t know anything yet, and we had a lot of questions. The doctor answered all of them, but he must have been a little annoyed, because by the end of the appointment we all hated him, and we didn’t feel like the appointment went how it should have.
We saw him a week later, and that time we had rules: Don’t hate him. Don’t ask questions until the end. Let him say what he wants to say first, then ask questions. Let the patient ask her questions first. Now, I like this doctor. I have actually run into him on campus or in the medical building on multiple occasions, and he always knows who I am and asks me how i’m doing.
We still adopt this strategy for most doctors we see. As for being my own advocate, well, i’m still figuring that out. I generally try to stay away from situations where I try to make the medical system do what it does not do automatically because I don’t like spending hours on hold, only to be told to call someone else, or that what i’m requesting isn’t possible. I think this is why my younger sister and my dad handle my billing and insurance now. (Thank you)
Sometimes, my strategies don’t work. I went back to see my old oncologist a few months ago and before the visit, I sent him a very direct and numbered email telling him what I wanted from the appointment. Three appointments and two months later, I finally got everything I had requested.
I called my new oncologist on Monday morning with a new side effect, and finally on Wednesday he got back to me with a prescription. Good thing I had already started treating myself and made a last-minute appointment with aforementioned primary care doctor. Who not only read my medical history before the appointment, but who also called me today to follow up like he said he was going to.
I think I need to go into my next appointment with, as much as it’s possible, a clean slate. And rules: Don’t hate him or the things that you know he’s going to do that annoy you. Let him say what he wants to say first, then ask questions. Make sure I get all my questions answered.