Cancer Etiquette: Now That I'm Strong Enough to Make Some Rules

When I was pregnant, like many women, I worked. It was the early 90’s, and I was a school teacher. From stories told by parents and colleagues, I began to believe giving birth was a nasty, brutish experience. For example, a friend told me how, in labor with her first child, the cord wrapped around the infant’s neck and threatened to pull out her insides when she went for the push. Another woman laid out for me in meticulous detail the horror of her unplanned cesarean. My youth and the constant hearing of these stories formed within me the belief that I was in for a grueling long haul to get the baby out.

With cancer, it isn't much different. You’d think, since I am older by about ten years, that elder wisdom would make me shirk off the death stories of cancer. Not so. With cancer, it’s worse. It seems people just don’t know what to say, so they say whatever comes to mind.

When I was newly diagnosed with Multiple Myeloma, it was hard for me. My husband was supportive, though our conversations often ended in tears. During this time, by accident, I met a woman at a nail salon. I don’t remember how, but it eventually came out that I had cancer of the bone marrow.

“Oh, my sister had that cancer,” the woman said. Then she tilted her head and gazed at me with a love that was eerie since I did not know her.

Stupidly, I asked: “How did she do?”

Her answer came soft, like one reminiscing of something wonderful: “She died, and, like you, she was beautiful until the day she died.”

Clearly, the woman knew nothing of her affect on me. For one, I didn’t let on. But I felt like I did that day my father accidentally kicked a football into my stomach. It was as if the breath had been knocked from me by someone completely unaware.

I’ve had more of these experiences than I care to relate. And so have many others with cancer. I believe that if there is a rule of etiquette for cancer, number one is this: do not relate to a cancer patient the tale of even one person you’ve known who died of cancer.

There are so many reasons for this.

First of all, it’s rude. Just like it’s rude to talk about terrible labor and delivery to a pregnant woman.

Secondly, it doesn’t help at all. In fact, the minute you tell the story, it becomes about that person who died and not the person who has risked sharing their cancer story.

Thirdly, no cancer is the same, ever. It's all different people diagnosed with different cancers at different times. Even people who’ve been diagnosed with the same cancer at around the same time know that their treatments, experiences and stories of healing will not match. Comparisons with others who’ve had cancer are like comparing apples with rocks or bridges with string, they are rarely similar except in the most unimportant ways.

The only people who can benefit by comparison in any way from stories of cancer are by hearing them from the people who have had cancer. There is often (but not always) comfort in that.

Fourthly, the best thing to do with a person dealing with cancer is to feel what the person is feeling, as much as you can. Jesus wept when he saw the sadness of his friends at the loss of Lazarus. And he knew he was going to bring Lazarus back! Whatever you do, don’t say “You’ll be fine!” or “Surely there's a protocol for that.” A person who tells you they have cancer is usually looking for comfort not solutions and that’s what you should try to give, if you can.

A final story: during one of my first visits to MD Anderson, I received at MRI. While waiting, a nice looking older man asked me:

“What are you here for?”

“Multiple Myeloma,” I said.

“Oh, that’s terrible. So many people die of that. Who has it?” the man said.

My soul sank into my shoes, but I answered: “I do.”

“Oh,” the man said looking down at the floor.

I heard my name called at the front desk. The old man leaned over and pressed a card into my hand: “You’ll be traveling a lot during this time, try my travel service. I’ll save you some money.”

I wanted to throw the card at him, but I didn’t. How could he try to sell me a service after declaring my probable demise so glibly?

So here’s a cancer etiquette rule that should ALWAYS be followed: NEVER try to sell a cancer patient anything in a waiting room.

I think now I’m smarter about these people who proclaim my death without really thinking about it. But it's still hard not to compare. I suppose it’s human. But it is so hard, when you’re the one being compared. Every person’s cancer journey is different; and few I’ve met ever want theirs to end in death.