Help Me Live: 20 Things People with Cancer Want You to Know

Read an Excerpt

I awaken in my dormitory-size room at the St. Placid Retreat Center and can hardly wait to peek outside at the thin-limbed maple tree, its wide five-fingered leaves waving slowly up and down as if fanning royalty. The 6 a.m. green grays will soon glow with reflected light from the sky, and coffee calls.
What a thrill to be on my own with absolutely nothing to do but finish the final chapter of this book!

On a private writing retreat at a wooded monastery in Lacey, Washington, I am high on life, as they used to say in the ’60s. Having survived cancer, I have just returned from “Cancer as a Turning Point,” a free conference that freshened my heart with hope. My nineteen-year-old son, Brett, has recently called on my cell phone to ask if I know anyone who would like a newspaper subscription, which he wants to purchase out of compassion for the lackey outside Safeway who is selling them. And my husband, David, has left a voice mail, saying with love rich as mocha fudge, “I miss you so much.” It doesn’t get much better than this.
As I move through the dappled teal-and-purple-carpeted hallway in my slippers, I step gingerly to avoid disturbing the other retreatants sleeping behind doors labeled for Benedictines such as Heloise, Leoba, Mechtild, and Hrotsvit of Gandersheim.

In the modern fluorescent-lit communal kitchen that still smells of microwaved popcorn from the night before, I quietly turn a jar-size stainless steel knob next to the faucet. After pumping hot water into the plastic filter to brew my espresso-roasted go-juice, I leave the kitchen, silently shutting the door behind me, and tiptoe back down the hall.

Laptop cradled tightly against my left ribs--ribs that were split apart two years ago so a lobe of my lung could be removed--I enter the propped-open door labeled “Parlor” across the hall from the room named for Hadewijch (who, by the way, penned the words, Love conquers all things). I set my computer on the red-checked gingham loveseat and bend to lift the brass doorstop.

I close the door so I can tap-tap-tap on my keyboard without disturbing the man in Hadewijch, who is just eight feet away. I have met him and his egg-shape body. His black suspenders hold up gray pants, and a quarter-inch elastic strap attached to his tortoise-shell spectacles reaches around his bald head, securing his glasses to his face. With his silver beard and eyebrows and plaid flannel shirt, he looks like a cross between a leprechaun and a lumberjack. He recently lost his wife of fifty years; walking with his head down last night, he appeared to badly need some rest.

Safe in the well-insulated parlor, my fingers type automatically and with impunity to the background of my laptop’s electronic whir. Deep in thought, calm and focused, a loud KAPLUNK! instantly raises my pulse from 60 to 120.

The door, which I had closed so gently that it had not even made a click, had not closed completely. Gravity or some other natural law had asserted its rule to complete the action.

If it had been able to talk, this is what the heavy hunk of wood might have said to me: “The road to hell is paved with good intentions! Due to circumstances beyond your control--nature, nurture, whatever--you have and may continue to unintentionally disturb people you wanted to avoid hurting at all cost!”

I relax into a quiet laugh and ask myself, “Okay, so what then is the point of having written a book about how to avoid exacerbating the pain of people who have cancer? Since you will likely hurt them anyway--since they may hear words differently than you intended them or may attach a different meaning to your actions--why even try?”

What’s the point?

In deciding how to act or in choosing what to say or not to say to people with cancer, we rely on advice or examples presented by role models from childhood on. We emulate them. Real-life people and events, fairy tales and stories, movies, television, newspapers, and even comic books model what works and what fails; all inform us and show us how to act, teaching us right from wrong.

The problem is, we do not live in a world of immutable right and wrong, black and white; rather, we make our way through a spectral universe that is much broader, richer, and more brilliant than most of us have the imagination or patience to visualize.

So, if there is no ultimate right or wrong in the realm of behavior, why write a book about what to say, do, not say, and not do to make people with cancer feel better? Obviously, what comforts one may crush another. Age, diagnosis, prognosis, gender, and cultural background determine each of our unique reactions. And everyone has a different psychological makeup. As eighty-four-year-old author and researcher Lawrence LeShan, PhD, known as the “father of mind-body medicine,” says, “Any therapist who treats everyone the same is a narrow, bigoted robot!”

In addition, people differ not only from each other but within themselves, depending on the time of day, month, or season--including the date of their next doctor’s appointment or any number of anniversaries or special occasions. Plus, people do change. (I disliked being called cute when I was a teen, but as a middle-aged woman, I now delight in such a youthful description.)

In the case of cancer, especially, patients change drastically during the different phases of diagnosis, treatment, and posttreatment. Cancer itself often causes little if any pain, at least during the early stages. But treatment can make people dog sick and bone tired; chemotherapy makes some patients feel like they have downed bad sushi or been KO-ed by a brutal flu. After completing treatment, many people report feeling heady with freedom and gratitude one day but unable to climb out from between the safety of their sheets the next.
Because so many variables present themselves, the purpose of this book, is not to prescribe specific words or behaviors but to open a world of possibilities, to give you pause for thought, to share stories that will at times inspire you or make you chuckle or scratch your head.

The main objective of this book is to help people with cancer feel and heal better. But another goal is to make you, the “walking well,” feel better, too. Virtually everyone shares the goal of wanting to help those in need, and we all want to feel we’re doing the right thing. Very few of us would ever intentionally hurt anyone for any reason other than self-defense. And we would positively shrink in disgust from the idea of kicking someone when he or she is down.

Yet we sometimes stuff our feet in our mouths, often without even knowing it. I know I do. It usually happens when I’m in a hurry--a hurry to help, to respond, to express myself, to feel validated or comfortable. It happens when I am scared. Or happy. It happens when I, for whatever reason, neglect to think before acting or speaking, or when I cannot seem to control an impulse to blurt.

Why don’t people with cancer just tell us what helps and what hurts?

If people with cancer do not want to hear why they should think positively or how awful chemotherapy is, why don’t they just assert themselves and ask us not to say such things? If they don’t want advice, why don’t they just say so? Many people, whether they have cancer or not, fear hurting others.
“You may believe that saying no means you never get another chance with that person,” writes psychologist Suzanne C. Saul, PhD, in her article, “Just Say No--Why Is That So Difficult?” She continues, “You may believe that saying no is not OK because it is rude. You will hurt the other person’s feelings and that will make you bad. Both of these beliefs can be self-fulfilling prophesies. However, both beliefs are erroneous.”

Therapist Halina Irving says cancer patients are not only afraid of hurting others, they also lack emotional strength because they are traumatized.
“All this talk today about patients needing to be proactive, well that’s well and good, but to ask someone to be proactive at a time they are least able to be aggressive and assertive is very, very difficult because we regress more to a state of dependency.”

Why not just follow the golden rule?

I am a jigaholic. Put me in front of a jigsaw puzzle and you might need a tow truck to drag me away.

On one of my writing retreats, I found a puzzle of Norman Rockwell’s famed painting, “Do Unto others as You Would Have Them Do Unto You,” which appeared on a 1961 Saturday Evening Post cover. It shows people of a range of ethnicities, ages, and religions standing together; some are pressing their palms in prayer (mainly the children); some hold native tools or sacred objects such as beads; some look up, some look down, but only two look directly at the viewer: a young black girl and her father.

Once I began assembling the pieces, I did not stop. I needed to make it all fit together, to make order out of chaos, meaning out of bits and pieces of seemingly meaningless images.

I knew there were pieces missing, because someone had scrawled that warning in blue ballpoint ink on the puzzle box. I considered giving up several times, because, after all, who wants to put together a jigsaw puzzle with missing pieces? But I could not--or would not--stop.

All along, I admired the beautiful faces--the brown, tan, pink, and yellow complexions; the eyes and noses of varied shapes; the full and thin pale and red-orange lips; the smooth, freckled, and leathered skin--and I contemplated the Golden Rule.

At the end, it all fit together.

I awoke the next morning and picked up the puzzle box. For some reason, I turned it over, and discovered a several-paragraph explanation of the Rockwell illustration: “The Buddhists say, ‘Hurt not others with that which pains yourself.’ The apostle Matthew wrote, ‘Whatsoever ye would that men should do to you, do ye even so to them.’ In the Jewish Talmud we find, ‘What is hurtful to yourself, do not to your fellow man.’ And in the Hindu Mahabharata, ‘Do naught to others which if done to thee would cause thee pain.’”

“It’s so simple,” I said to therapist Halina Irving, who not only survived the Nazi Holocaust but also the attempted annihilation of her body by a particularly lethal form of cancer. “Why don’t people just follow the Golden Rule? Then they’d never hurt people who’ve had cancer?”

“We don’t always know what we would want under those circumstances,” she responded, not missing a beat. “I’ve had a number of people say to me, ‘If I get cancer I won’t get treatment, I’ll just call it a day.’ Well, when they get cancer, they don’t call it a day. I think this is the one experience you have to have lived to really know what you would do.”

Or what you would want.

That’s why I have chosen a chorus of diverse voices--some you will relate to, some not--to sing you a symphony of sometimes cacophonous stories. Hopefully they will resonate with you and maybe even make you want to dance.

What you will find along the way

What follows are tales, simple tips and practical suggestions based on my experience and those of scores of other people. Surveys and interviews with patients, caregivers, psychotherapists, counselors, social workers, researchers, and doctors provide sundry perspectives and sometimes contradictory information. For instance, most cancer patients and survivors say they would rather be the one to bring up the subject of their health, but some feel insulted when their friends ignore it--like an elephant in a room that no one wants to talk about. (If you pay close attention, you can usually discern what your friend wants. Or you can ask, “Would you rather I not bring up your illness?” See chapter 6.)

In addition to stories of situations told in narrative form, you will read in the margins statements from cancer patients and survivors collected through the Internet and other surveys. Throughout the book, you will hear from people newly diagnosed with cancer; people young, old, and in-between share words that have helped them; men and women with different kinds of cancer tell their stories; therapists of diverse backgrounds and disciplines offer suggestions about how to best express concern and love during a time that is often awkward for everyone.

One of the first experts you will meet works in the field of communications. After all, if this is to be a book about communicating with people with cancer, who better to call upon than those who understand the subtle nuances of words and intonation?