My guest today is Ellen Singer. Welcome to OpEdNews, Ellen! Several months ago, your "Top 10 things not to say to cancer patients" was the subject of a newspaper article. Where did this list come from and why did you write it?
Bethelwoods Center for the Performing Arts, Bethel, NY - 40th anniversary of original Woodstock concert
I have a good friend, who is the Library Director of the Crawford Memorial Library in Monticello, NY, near my home. Throughout the summer, they run a series of lectures/informal talks at the library. He asked me to speak and said I could speak on any subject I chose. I thought about it and got back to him. I told him I wanted to talk about cancer. He has a very wry sense of humor. So, I wasn't surprised by his response which was "great, cancer scares people. Very few people will show up and I won't have to put out so many chairs!" Undeterred, I insisted that I wanted to talk about cancer but promised not to be maudlin. So that's where the initial list came from. I entitled my talk "The top ten things not to say to a cancer patient."
What makes you qualified to talk about cancer, Ellen?
Good question. If you mean by "qualified" some kind of medical or scientific background, the answer is "nothing." However, if personal experience can be translated into a qualification, then I am plenty qualified. In February of 2004, after a routine annual gynecological exam showed something suspicious, I was diagnosed with ovarian cancer. In less than forty eight hours after the diagnosis, I had surgery for a hysterectomy and removal of the cancer. The good news about ovarian cancer is that in the last decade or so it has become more and more of a chronic condition (as opposed to terminal.)
But the "bad" news is that it has become more and more chronic. As a consequence, I have spent much of the last seven years on one type or another of chemo therapy. I don't know if that makes me qualified but it sure gives me plenty to talk about. In fact, when the talk was listed in the local newspaper, the editor of the health section called. She told me she wanted to expand my talk into a feature article. I quickly told her the list had just grown out of my own experience and might not reflect that of other cancer patients. She insisted that she wanted to proceed, so I edited and expanded on the list a bit.
I'm embarrassed to say that I see I've already violated a few of your tips. It just shows how uncomfortable and anxious cancer makes us. The good news is that our bumbling is not malicious or intentional. But does that really help? Are you able to differentiate between a truly tactless friend and an insensitive clod? Or doesn't it matter?
We have all violated some or many of these items on my list. I know even I have. Nobody knows what to say when they learn someone has been diagnosed with cancer. My intent was not simply to criticise what people say but rather to offer some suggestions of what is helpful and what is not. And yes, I am able to differentiate between a truly tactless but well intentioned comment versus someone who feels it is their job to tell me how I should be feeling or what I should be doing.
Why can't we refer to those who have cancer but are still alive and kicking as survivors? What's wrong with that? Haven't they survived the disease?
This may well be more of a personal preference than a hard and fast rule. I can appreciate that the survivor term makes some people feel powerful and emboldened to keep on striving to live. That clearly is not a bad thing. But inclusion of this point was inspired by an article by Dana Jennings in one of many articles in the New York Times in which he chronicles his experiences as a cancer patient. On March 15, 2010 he wrote: "We like to say that people "fight' cancer because we wrestle fearfully with the notion of ever having the disease. We have turned cancer into one of our modern devils. . . I sometimes think of cancer as a long and difficult journey, a quest out of Tolkien, or a dark waltz -- but never a battle. How can it be a battle when we patients are the actual battleground?"
This outlook resonated with me. If I am battling cancer, then my body becomes the battlefield just at the time when I need to be addressing my physical body with a sense of caring and healing. War metaphors just seem to fly in the face of that. Also, what does it mean to use the survivor term specifically for cancer patients? Do we call long-time MS patients or diabetes patients survivors? For better or worse, a vast array of diseases are out there wreaking havoc on human bodies every day. In my experience, no diseases are welcomed by patients but they call on us to do our very best at living before, during, and after whatever treatments accompany our diagnosis.
I like that you advise patients to focus on themselves. But it seems so obvious. Isn't that a person's first inclination? Was it yours?
After my diagnosis and surgery, when I was feeling like I had been hit by a truck both psychologically and physically, someone close to me gave me sound advice. Years before, he had been in a terrible accident that required a year from which to recover. He said that early on in that process, he realized more than anything else, his job at that point in his life was to be in the business of getting himself healthy. Of course, he didn't mean that he had to do this without the help of medical professionals. Rather, he was saying that focus on himself was not only justified under the circumstances, but a necessary part of his recovery. I found this very helpful. I am not a person who is accustomed to asking for help. I also had a completely unrealistic view of what I could and couldn't accomplish. I used to think that if I willed myself to do something, then I would be able to do it. Or the reverse was also true in my mind.
Not doing something was simply a matter of lack of will on my part. Well, I found that physical ailments don't necessarily operate that way. My idea that I could and (worse) should be able to just fit cancer and cancer treatment into my life was just not realistic or in my best healing interest. Of course, a positive attitude is important but that is just one of many factors that can help us cope with illness and the accompanying treatments. Asking for help from others and withdrawing from unnecessary outside responsibilities were ways of behaving that I might have previously seen as selfish or self-centered. Especially during the recovery from surgery, it was very freeing to do just that. And I believe that helped me get through some of the most difficult times.
Did you ever feel that you had to act a certain way to make those who were around you less uncomfortable? That would be really stressful.