Back when I was a practicing lawyer and I had my own firm (not that long ago, but it is starting to feel as if it was a million years ago), I had a bunch of rules about communication for myself and for my employees. Since my practice was mostly focused on Family Law (divorces, child support, modifications, paternity, etc.), we walked with clients through probably the most difficult periods of their life. Not unlike going through cancer.
Anyway, my biggest rule about communication is that if a client had to call us to find out what was going on, then we had failed that client. Failed to keep the client in the loop, failed to anticipate the next steps of the case, and failed to ensure that the client knew without a shadow of a doubt that we were on top of things in their case. Hearing things from us first rather than the other party to the case or a witness was key in my mind to keep the relationship between us and the client healthy.
Now that I’m a professional patient, I experience the communication between a professional and consumer from the other side and I’m more convinced than ever that I was on to something. I cannot count the amount of times that I have sat and sat and sat waiting for results of a test. The worst is having a scan or test on a Friday because of how much longer you have to wait. On the flip side, hearing something about a test or scan right away usually means it’s bad news.
The bottom line is that the relationship between doctor and patient is not unlike the relationship between attorney and client. There is the same imbalance of power, of knowledge and the same dependence on that superior knowledge. Not unlike a client, a patient often uses the internet or other people to gather information and try to participate in a different way. Unlike an attorney, doctors don’t seem to be as concerned about patients going elsewhere or that staff do not represent them well.
I am sure that every doctors office I have has a note down about me being a difficult patient. I am always on time and I always follow the doctor’s instructions; I do also expect to be seen timely (or there be a good reason why I’m not) and that I receive return calls. I fill out every single survey I receive and I give feedback (most often instant) for good and bad things. I speak up and I advocate for myself. This has earned me many a snarky look or comment from support staff, who are the most frequent to be falling down on the job with this.
It’s easy to focus on the things that go wrong, the calls that don’t get returned, the test results that are delivered late or rushed. It’s easy to focus on those things because frankly, I hold my breath until I know. I hold my breath until I know whether I’m going to live a bit longer, if the cancer is at bay, if the weird symptoms mean anything, if the new lump in my arm or leg is more or a different cancer. I hold my breath and the waiting seems to last forever, every single time.
I don’t always know if the person on the other end of the line or sitting across the desk is having a bad day or had received horrible news of their own. I do my best to take two steps back when I get an odd or unexpected reaction; however, sometimes I am just not able to. Maybe if things weren’t so raw, weren’t so immediate, weren’t so heavy, I could empathize with the other person. Maybe. I’m not a patient person generally and that comes through most clearly when I’m stressed. Cancer and the treatment of cancer is inordinately stressful.
Everything about my cancer treatment stresses me out. I’m usually good at compartmentalizing in the moment. I’m good at acting like everything is fine, usually. I also get angry. I get angry when I’ve held my breath for 3 months and then I’m asked to wait another day or week. No one knows how difficult it is to get through those three (3) months and then to be told to wait longer is just untenable.
I get that most of the people I encounter along the way during my treatment are just there to do their job. Punch the clock and get home to their families. What they don’t understand (and what my staff at my law firm also didn’t always understand) is that this medical stuff is my life. I will be in treatment for the rest of my life, so for the love of God, don’t make me wait another day or week or month or moment to find out if my cancer is behaving itself.