The Actual Dance is a play that presents 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. An unlikely survivor. The Actual Dance is the story of that experience from my perch. The husband. This the 4th year of my October daily blogs, my focus is a bit more on myself.
Day 12: “I can’t explain or maybe better said I cannot justify why, but I cannot leave Susan alone. My job is to be here with her in this room. My cot sits near the floor on the right side as you face the bed. In the opposite corner on the same side of the room I set up the table and a chair as a desk for my computer, so I could work and be (in the room) at the same time.”
There is no training for this journey for most people and especially for men. “How do I do this?” Be with a wife or mother or child as they undergo treatment for a life-threatening disease. In Susan’s case of advanced breast cancer, I didn’t even think to look for a how-to manual. I just did "it."
For a good part of the journey I served in the role of what I call a traditional caregiver, especially during the early medical procedures. A “laugh line” in the play is “Hell I did not even change the kids diapers and now I am helping Susan vomit.”
Yet, there is that “other person in the room” entity for which we have no word to describe. The scene in the play demonstrates clearly the caregiver role, but just wait. In an instant the role changes. But that process is for tomorrow. Today, “I don’t know where else I could be.” Tomorrow I find out.
Stat of the Day: 40% of family caregivers are men, meaning there are about 16 million men family caregivers according to AARP.
Task of the Day: Just-In-Case-List. Now this isn’t a will or an evacuation plan for a hurricane or a fire. It is a check list for if someone you love and live with is diagnosed with cancer. Who to call? What are the policies at your work? Insurance? A lot of that can be done early. Just stop right now and start a just-in-case list. Here are some resources and ideas. Book Blog
Resource of the Day: Check out Men Against Breast Cancer. A handy Breast Cancer Action Plan and Caregiver’s Guide for Men, which is free to download.
The Actual Dance: Performances. Donate.