Martha lives in Illinois and was diagnosed with metastatic breast cancer in January 2015. She has a husband and three children, ranging in age from 12 to 18, a dog and a lizard.
Think you're in control of your healthcare team? A recent experience reminded this patient that though it's her body, others may not consider her in charge of its care.
I like to be in control of what happens to me and I bet you do too. I have a voice in where I live, how I spend my time, how I spend my money, who I spend time with, and so much more. Having a voice and having control are simply integral to my experiences as a person.
Cancer has been hard in that respect. Ceding control to a doctor, even when I have a "voice" that is part of this team effort of my care, was a mental struggle against my inclination toward control freak status. Sometimes someone else knows better, and my husband and I selected my oncologist knowing she was most likely the best possible doctor for me. The fact that I've been on my first treatment for nearly five years tells me we chose well, and so has she, with her treatment recommendations and advice.
Still, if I can't have total control at the countless appointments that sometimes overrun the life I'd prefer to be living, I do expect to have some control. One part of that is knowing what to expect with any test, office visit, or procedure. I need to be fully informed, preferably well in advance, or I feel a lot of emotions that I'm pretty sure doctors wouldn't want me to be feeling: confusion, fear, anger, the desire to change doctors or just stop taking part in my care altogether.
I have been irrationally upset at changes to the front desk staff, and I struggle to stay in the chair when I see an unfamiliar nurse approaching me during visits for IV treatment of Herceptin and Perjeta. I still remember my fear with a lung biopsy in January 2015, when I didn't know what to expect and was so unprepared and overwhelmed that I wouldn't have known what questions to ask even if I'd felt able to ask them.
So imagine my response when an unfamiliar person entered the room during my most recent oncology appointment. He was alone. I had never seen him before. I certainly had not selected him as someone to question me about my care, check me physically, or inform me of my test results. Who was he? He didn't introduce himself, other than his name, until I asked if he was a medical resident.
It turns out that the cancer center has hired a physician's assistant to spend much of his time with my specific oncologist. Like oncologists seemingly everywhere, mine is often running behind schedule. I don't usually mind. I know there are a lot of patients and I know that she answers questions and takes her time if someone needs it. She shares that quality with all of my other doctors, of which I've accumulated several.
I have extremely mixed feelings about this new addition to my healthcare team. I appreciate that his presence means my oncologist doesn't have to spend as much time at the computer during our visit. I am somewhat grateful for another pair of eyes and hands considering any possible changes to my physical body, and I like that perhaps my oncologist feels less pressure to rush.
But I am concerned that because I am an "easy" patient - someone who doesn't tend to complain and has certainly had great response to treatment - I will have less and less time with my doctor and that I now must add overt pushiness to a set of other skills I've developed as a patient. I resent that my oncologist didn't consider my comfort by introducing me herself to this new, not-selected-by-me member of "my team". It reminded me that though it is my body, others do not consider me in charge and in control of its care.
It could have been so easy to make this a seamless change. It's too soon to say how it will finally play out and, just like I do with the chemo nurses, I'll reserve judgment until I know more but I wish my oncologist had done better this time.