Saturday, November 06, 2010

Cancer etiquette

In the December issue of Vanity Fair, Christopher Hitchens takes up the difficult and perplexing question of what to say to someone who has cancer. Hitchens, who has Stage Four metastatic esophageal cancer, makes some sharp observations, as usual for him. He urges you not to confide the anecdotes of those who survived (or succumbed). If you ask how he is, be prepared for candor. At the same time, though, don’t make the mistake of assuming that he is ready for bluntness in return.

In his best passage, Hitchens lights into the late Randy Pausch’s Last Lecture (“so sugary that you may need an insulin shot to withstand it”). In fact, I would add a piece of advice that it doesn’t occur to him to pass along. Don’t recommend The Last Lecture to someone with cancer. Pausch’s giddiness has nothing to do with real hope, nor with preparing oneself for death. If you recommend it, your friend will conclude—correctly, as it turns out—that you are not serious about what he is going through.

Hitchens is entirely serious, of course. When people ask how he is, “I get straight to the point and say what the odds are,” he writes. “The swiftest way of doing this is to note that the thing about Stage Four is that there is no such thing as Stage Five.” Astutely, he notes that such a melancholy reflection may lead the cancer patient to become “self-centered and even solipsistic.” So the patient has responsibilities too.

I was diagnosed with Stage Four metastatic prostate cancer (Gleason score, nine) three years ago last month. So perhaps I am qualified to weigh in. While Hitchens is right that “there is no such thing as Stage Five,” it does not follow that Stage Five is inevitable. At least it has not been for me—so far.

Even so, hope is a dicey thing. And as far as I can tell, no one else can raise your hopes for you. There is no standardized method for achieving it, no universally valid argument for its reality. Despair may be a sin, as my Catholic friends told me in the first weeks after my diagnosis, but their telling me so did nothing whatever to lift me out of it. I had to find my own way out. Every man’s capacity for hope is as unique as his taste buds.

Don’t try to make hopeful sounds, then. What I found consoling was the consolation that was offered to my wife. It helped enormously to know that she and the children would not be left alone, even if I were to leave them. Similarly, I guess, it gave me steel to understand that I was important and dear to some people. Three or four of my friends were particularly good at this, dropping into my hospital room to say, “I read something today that reminded me of you,” or, “I listened to something and wondered what your reaction would be.” Only two people thought to send me books—no one sent me any movies—and even though the books they sent weren’t really to my liking, they meant a lot to me.

Then there were those who never even contacted me, including my own sister. Nothing quite makes you more aware of the nothingness that awaits you on the other side of Stage Four cancer. My advice: say anything, keep it light and trivial if need be—better lightness and triviality, in fact, than the awkward groping for profundity—but say something. If you say nothing, because you are afraid that you will not know what to say, then you are abandoning the cancer patient to his worst fears, and indulging your own self-centeredness and even solipsism at his expense.

But silence is not the worst breach of cancer etiquette. The worst, in my experience, is to suggest alternative treatments, to announce that you’ve heard, vaguely and fourth-hand, of amazing breakthroughs in treatment. For then you put the cancer patient in a terrible predicament. He longs desperately to tell you to perform an anatomically impossible sexual act upon yourself, but he must remain polite—he must think of how to protect your feelings, while you have given no thought at all to protecting his.

12 comments:

Lee said...

Even well, I found Pausch's lecture nauseating; not chicken soup, which is bad enough, but castor oil.

I wonder if solipsism is the right word when you are seriously ill: isn't a certain measure of it understandable and perhaps even necessary? A way of going into oneself?

A beautifully written piece. Thank you.

Don said...

Thoughtful piece. I would only add that even if someone can't find the words being there physically is helpful. What have you read that you found helpful in going through this experience?

Shelley said...

This is very helpful, thanks.

Toward the end of my work, I deal with a friend accompanying another through a dark time. I think serious illness is, like the past, another country, and those of us not yet inside its borders need to listen, learn, and abide.

Richard Barager said...

Thank you for your honest and personal discussion of what is a difficult thing to discuss: our own mortality. As a physician who has cared for the chronically ill for over a quarter century, it is a matter of great interest to me.

One of the best known literary explorations of this issue--and still one of the most moving--is Tolstoy's "The Death of Ivan Ilyitch," which is credited with giving birth to what we would now call palliative medicine: elimination of pain and suffering in the terminally ill. A person with a serious chronic illness can either be fighting to live, as Ivan Ilyitch does for most of the story, or preparing to die, as Ivan does only at the very end.

Patients cope with such circumstances in a variety of ways, as I discuss in a blog post of mine entitled "Dying Without God," which reviews a study comparing the coping of patients with advanced cancer who believe in God to the coping of non-believers. The full post can be found on my literature and medicine site, theliterarydoctor.com, but the gist of it is that the faithful die happier but harder than non-believers--they tend to never give up, and sometimes accept futile therapy.

Anyway, thank you again for your poignant thoughts on death and dying.

Paul M. Hedeen said...

Your remarks are pungent, smart, and full of empathy, wisdom, and respect. Thank you.

They made me consider how poor we are (I am) at addressing calamity or endings in general. What, in the end, is consoling, if there is nothing larger than ourselves?

Is this cultural? Is it because we rowed our little skiffs into such vast seas of unbelief, self-serving pragmatism, and outright self-indulgence that we can longer find any landmarks toward which we might orientate our feelings, knowledge, and caring? For we do care even if we do not understand how caring might be expressed.

Panelists, Nonfiction Now 2010 said...

A friend alerted me to your post, and I wrote about it just now on my blog, http://cancerbitch.blogspot.com/2010/11/etiquette.html
I was diagnosed w/ stage 2 breast cancer in 2007. I found that certain people just disappeared. Not those who live in Chicago, where I do, but friends from out of town. They just didn't respond. Because of this, I forced myself to write a condolence card to a friend whose sister had died. I knew that "not knowing what to say" wasn't an excuse.

Zoe Mehta said...

Roger Conley Bone, a pulmonary physician, died of cancer at age 56.
He said:
"1. Good health is often taken for granted; however, it is the most precious commodity one possesses. 2. One's spouse, children, family, and friends are the essential ingredients that allow one to endure an experience such as a serious and unexpected illness.
3. When faced with death, one recognizes the importance of God and one's relationship to God.
4. The things one does throughout one's life that seem so urgent are, most of the time, not so important."
http://www.chicagoreader.com/chicago/as-i-lay-dying/Content?oid=893946

Zoe Mehta said...

I have Stage IV breast cancer. But I am doing pretty well--not going anywhere soon!

I liked Dr. Roger Bone's "A Dying Person's Guide to Dying":

First, it is likely that you will be surrounded by persons who mean well but, in the end, you must die your own death. Dying can be considered a journey one takes alone with a crowd. Family and friends are the first to gather around you, and they offer the most comfort.

http://www.hospicenet.org/html/dying_guide.html

Flatsy McNasty said...

People mean well and I am sure I said some idiotic things to others prior to my own Stage IV breast cancer diagnosis. So I try to be forgiving.

Breast cancer patients are often portrayed as characters in the medical equivalent of a Horatio Alger Jr. story. If only we try hard enough, we can pull ourselves up by the bootstraps of our otherwise defective DNA. Maybe that’s the American Way: If you try hard enough and throw enough money at it, you can solve even the most daunting problem.

My friend, who also has metastatic breast cancer, hates it when people say "You're so brave." She says that's like telling someone: "You don't sweat much for a fat person. . ."

Dick Stanley said...

I never know what to say to a family friend who is dying of brain cancer when she calls to speak to my wife.

I usually fumble out an inane "How's it goin'?"

She always just says "All right" or "Pretty good."

Which always reminds me that most people would say "Fine," or something else dismissive.

D. G. Myers said...

Please don’t take offense, Mr Stanley, but there must be better things to say to someone who has cancer. “If you need anything—anything at all,” you might say—“just ask.” If the person is religious: “You are in my prayers.” If not: “I think about you often.”

My rabbi, terrified of offering false consolation and empty words, arranged for friends to bring a kosher lunch every day that I was in the hospital. The Jewish community, as is typical in such circumstances, brought dinner for my family every night. Other friends drove me to the hospital. Others took care of babysitting for our four kids.

Help, and offers of help, are the best, I think.

sheila said...

My husband was diagnosed with Stage IV colon cancer 3.5 years ago. (At present he is in remission and healthy). One of things I found frustrating was peoples' comments about "being positive". What is the cancer patient supposed to believe? That if they die its will be their fault for not being positive enough? In my experience the cancer wards are full of some of the most positive people you will ever meet, and yet many of them will still die. The best others can do is to offer kind words of support and prayers or thoughts(depending on whether you are religious or not) Refrain from giving advice and don't offer - usually ignorant - views on causes and cures.