The Actual Dance is a play about the events of the year 2000 from the point of view of the spouse of the woman going through breast cancer. From diagnosis to her life as a survivor, Susan Simon, my wife has endured. She is an unlikely survivor, at least according to her doctors. What is presented in The Actual Dance is the story of that experience from my perch. The husband. A man whose experience with breast cancer has been that it never turns out well. Moreover, death has been somewhat of a constant companion in my life. My memory of loss goes back to when I was 4 years old, with grandparents, aunts, uncles and siblings, as well as parents, being lost to various diseases, but mostly cancer. My reaction to Susan’s diagnosis in retrospect is not surprising. Of course, in my mind, it never was going to end well. But I’m getting a little ahead of the story.
Day 4: “The Buddy”: Should I have been my wife’s Buddy?
This year I am focusing more on “The other person in the Room.” It is great and standard advice that anyone with serious medical condition, especially cancer, have someone with them at their medical appointments: “The Health Buddy”
I have come to question though my decision to be that “Buddy” as Susan went through the breast cancer journey. I am proposing a question today for which I don’t have a good answer.
Should I have been her “Buddy.” Is it not possible their needs to be even a “third person” in the room to do what the “Buddy” is supposed to do – hear the news and the advice and the next steps in a way that all the questions that need to be asked are asked and all the information is taken home.
As it turned out, while I was there to hear the news with Susan, it was me who struggled. “Susan never indicated she was worried, or if she was she didn’t’ tell me. She was always very matter of fact. …” is the line in the show about those moments.
The next moment – the moment when we get called into the doctors’ office to get the bad news -- it is I who senses the import of the words. And I basically “lose it.”
Dr. Jennifer Harvey, head of beast imaging at the University of Virginia School of Medicine said it dramatically after a performance of The Actual Dance at a conference she had organized.
She said that a person getting the “bad news” will remember that moment forever. They will remember the lighting, the smell and furniture as a frozen moment in time for the rest of their lives.”
What she described though wasn’t really Susan’s experience. It was mine – The Buddy. It is my insight this year – now five years into performing this show and writing about it – that “The Buddy probably ought not be someone who is what I’m trying now to define as “The other person in the room.” The love partner of the patient, the one whose soul is intertwined with the person being told they might die.
Perhaps the word is “The Partner.” Maybe both need to be in the room? Or maybe both need “The Buddy.”
Stat of the Day: Communicating “bad news” is not easy for either the patient or a doctor. In one study 73% of the respondents did not understanding the term “median” survival when it was used by their physician. They also didn’t understand a lot of the technical terms used by the doctor. And recent studies show Doctors also struggle with delivering bad news to patients.
Task of the Day: Who is your buddy? This might be obvious to some people. While our first inclination will be to bring a “partner”, my suggestion is to come up with a “Partner Plan B.” Yes, a husband or wife or a life-partner probably will want to go with you. And yet they may not be any more able to digest the news than you—the patient. So, consider finding a less emotionally involved third party --- that is third to you and your “partner.” there a trusted friend? A clergy person or someone from your church or synagogue? And make sure when you let the doctor know he or she might need a bigger room.
Resources of the Day: Patient Navigators can also be helpful in the process. Most hospitals have “patient navigators.” The American Cancer Society has a helpful for locating one here. There are also a growing number of independent “patient advocates” services that help navigating the larger health care system, including insurance. You can search for someone here.
The Actual Dance: Performances. Donate.