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

by Hope, Lori

• ISBN13: 9781587612121
• ISBN10: 1587612127
• Edition: 1st
• Format: Trade Paper
• Copyright: 2005-05-01
• Publisher: Celestial Arts

Summary

When we hear that someone close to us has been diagnosed with cancer, we want nothing more than to comfort them with words of hope, support, and love. But sometimes we don't know what to say or do, and don't feel comfortable asking. With sensitive insights and thoughtful anecdotes, HELP ME LIVE provides a personal yet thoroughly researched account of words and actions that are most helpful. Based on the author's own experiences with cancer, as well as interviews and surveys with many others who have had this disease, each chapter tells intimate stories about one of the 20 most important messages people with cancer want to convey, such as "I need to forget-and laugh," "Asking my permission can spare me pain," "I want you to understand if I don't call you back or see you," and "I want compassion, not pity; comfort, not advice." You'll learn that communicating effectively doesn't necessarily mean there's a "right thing" to say or do, but that you can achieve the desired result: to make those who are ill feel better. In candid and beautifully detailed prose, HELP ME LIVE will help you find the words or gestures to show how much you care. An intimate guide for families, partners, and friends of individuals diagnosed with cancer, detailing 20 messages to help loved ones communicate effectively.Appendices include specific advice geared toward special circumstances like workplace issues and rare cancers; 22 things most people with cancer like to hear; 26 common words, phrases, and questions that can sting; 15 fabulous things people did and said; 20 movies to know about; and more.An estimated 1.37 million new cancer cases were diagnosed in 2004.HELP ME LIVE does not prescribe behavior; rather it is designed as food for thought: Stories unfold, providing examples of words and deeds that have helped and harmed.Although everyone experiences cancer differently, most want the same thing: to be cared for and to feel understood and respected.Reviews"Help Me Live is personal, practical, and heartful, and makes it easier to navigate the nitty-gritty realities of what to say and do if you want to help."-Jean Shinoda Bolen, MD, author of Close to the Bone: Life-Threatening Illness and the Search for Meaning"Lori Hope's masterful storytelling and clear explanations are invaluable, helping you understand (and forgive) others'hurtful words and actions. This book is a gift." -Wendy S. Harpham, MD, cancer survivor and author of Diagnosis: Cancer"With grace and good humor, Hope tells us what we all should know about facing this life-altering disease. Extraordinarily moving and helpful, this book is essential reading for cancer patients as well as their families and friends."-Marc Silver, author of Breast Cancer Husband and editor, U.S. News & World Report"'Every time we read a book about cancer,'said Margo Rivera-Weiss, librarian and art gallery curator of the [Women's Cancer] resource center, 'it gets into 'what is this treatment, what is that treatment'(Those books) don't get into how to be there for your friend, how to be there for my wife. Lori has written that book.'"-San Francisco Chronicle

Author Biography

Lori Hope, a cancer survivor herself, has produced more than 20 documentaries, winning dozens of awards including two Emmys. Currently managing editor of Bay Area BusinessWoman News, Hope has been published in Newsweek and broadcast on radio stations nationwide.

Table of Contents

acknowledgments	xi
preface	1	(6)
introduction	7	(13)
20 things people with cancer want you to know
``It's okay to say or do the `wrong' thing.''	20	(7)
``I need to know you're here for me (and if you aren't, why not).''	27	(14)
``I like to hear success stories, not horror stories.''	41	(9)
``I am terrified.''	50	(11)
``I need you to listen to me and let me cry.''	61	(14)
``Asking my permission can spare me pain.''	75	(11)
``I need to forget---and laugh.''	86	(9)
``I need to feel hope.''	95	(10)
``Telling me to think positively can make me feel worse.''	105	(8)
``I want you to trust my judgment and my treatment decisions.''	113	(6)
``I want compassion, not pity; comfort, not advice.''	119	(10)
``I am more than my cancer; treat me kindly, not differently.''	129	(8)
``I want you to help without my asking you to.''	137	(8)
``I like to be held in your thoughts or prayers.''	145	(6)
``My moods change day to day; please forgive me if I snap at you.''	151	(5)
``Hearing platitudes or what's good about cancer can trivialize my feelings.''	156	(8)
``I don't know why I got cancer, and I don't want to hear your theory.''	164	(7)
``I need you to understand if I don't return your call or want to see you.''	171	(9)
``I want my caregiver to take good care of herself or himself.''	180	(10)
``I don't know if I'm cured, and bringing up my health can bring me down.''	190	(9)
afterword	199	(2)
appendix	201	(48)
The Survey	202	(4)
Special Circumstances	206	(22)
Soon after Diagnosis
During Treatment
Workplace Issues
Depression
Breast Cancer
Prostate Cancer
Lung Cancer
Rare Cancers
Children and Cancer
Gender Issues
Young Adults
Women in Their Childbearing Years
Parents with Cancer
Soon after Treatment
Long-Term Survivors
For Those of Faith
End-of-Life Issues
For Doctors and Other Health Care Providers Only	228	(2)
The Lists	230	(19)
21 More Things People with Cancer Want You to Know
15 Fabulous Things People Did for and Said to Cancer Patients
12 Outrageous, Funny, or Awful Things Said to People with Cancer
Beware: 26 Common Words, Phrases, and Questions That Can Sting
22 Things Most People with Cancer Like and Want to Hear
20 Silly Movies for People with Cancer to See
18 Things You Can Do (after Asking Permission, of Course) to Help Someone with Cancer
Instead of Saying That, You Might Say This
resources	249	(5)
index	254

Excerpts

introduction

It’s all very simple, or else it’s all very complex, or perhaps it’s neither, or both. --Ashleigh Brilliant

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 loudKAPLUNK!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 poin

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Excerpted from Help Me Live: 20 Things People with Cancer Want You to Know by Lori Hope
All rights reserved by the original copyright owners. Excerpts are provided for display purposes only and may not be reproduced, reprinted or distributed without the written permission of the publisher.