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

302 Pages·2005·1.25 MB·English

by  Lori Hope

“Lori Hope writes with an eloquence and authenticity that inspires all her readers. She
expertly takes cancer caregivers and survivors on a journey that helps us strengthen ourselves
and revive the precious gift of hope. She helps us do so even in the face of cancer’s many
blurts and blunders. If you or a loved one have been touched by cancer, Help Me Live is
required reading.”
—Greg Anderson, author of Cancer: 50 Essential Things to Do, Founder and CEO, Cancer
Recovery Foundation Group
“Even though I am a twenty-year survivor, I needed to be reminded about what people in the
throes of cancer need, and Lori Hope’s book is perfect.”
—Kathy La Tour, Editor-at-Large, Cure magazine
“It’s a wonderful work that both eloquently and simply reminds us that empathy, humanity,
respect, and dignity for each other should never fall victim to cancer. In working over fifteen
years as an oncology social worker, it seemed as if Lori Hope had been sitting alongside me
catching the rich insights and poignant narratives of our clients and then beautifully crafted
Help Me Live to assist the world in truly understanding how one best helps the cancer patient.”
—Win Boerckel, LCSW, MSW, Director of Social Service, CancerCare of Long Island
“Lori Hope’s masterful storytelling and clear explanations are invaluable for cancer survivors,
helping you understand (and forgive) others’ hurtful words and actions, and encouraging you
to direct family and friends to responses that help. This book is a gift for caregivers and
everyone who knows someone who is going though illness.”
—Wendy Harpham, MD, author of Happiness in a Storm, Diagnosis: Cancer, and Only 10
Seconds to Care: Help and Hope for Busy Clinicians
“Lori Hope, who has been through it all, both as a cancer patient and a loving supporter of
other cancer patients, offers guidance that is always sensitive and often deeply illuminating.
Please, please, read this book!”
—Barbara Ehrenreich, author of Bright–Sided: How Positive Thinking Is Undermining America
and Nickel and Dimed
“Help Me Live is beautifully written and offers extraordinary pearls of wisdom on love, on
hope, on survivorship, on friendship—in the face of a cancer diagnosis. As a survivor herself
she takes us on heartfelt journey—and we are stronger and more courageous because of it.”
—Laurie Fenton Ambrose, President and CEO, Lung Cancer Alliance
“Drawing on her experience, those of many others, and that of a number of leading health
professionals, Lori provides sensible and sensitive guidelines for helping those with cancer
and their families to live better. If you or a loved one is struggling with cancer, don’t be
without Hope.”
—David Spiegel, MD, Stanford University, author of Living Beyond Limits
“Help Me Live is a deeply moving exploration of the complex range of emotions that arise in
the face of illness. Both patients and caregivers can enter their roles with greater acceptance
and love from reading the experiences and interviews by Lori Hope.”
—Susan Halpern, MSW, author of The Etiquette of Illness
“Patients with cancer often say to me, ‘It’s bad enough to have cancer, but would you
BELIEVE what someone said to me the other day?’ Those expressions are not easily forgotten,
when they caused either pain or joy. I really like Lori’s use of these common expressions as
the base for suggesting good etiquette and kind manners in talking to someone who has a
serious illness.”
—Jimmie Holland, MD, Memorial Sloan-Kettering Cancer Center, author of The Human Side of
Cancer
“The advice, comments, and suggestions contained within Help Me Live are valuable to cancer
patients, their families, friends, caregivers, physicians, and therapists as well as any
compassionate individual.”
—Jo Ellen Lezotte, past President, The Caner League, Inc.
“This is a book every cancer survivor, as well as those who share our world, need to read. She
says the words that none of us wants to say out loud and offers realistic explanations of how
we all need to relate to our disease. This book can offer a great deal of comfort to those
starting on the path of living with cancer.”
—Kathryn Joosten, actress, The West Wing, Desperate Housewives, and Scrubs
“As a two-time survivor of breast cancer and a journalist, I found Help Me Live to be
informative, touching, and even funny—and when it comes to cancer, you need a sense of
humor. The author certainly lives up to her name.”
—Laura Marquez, ABC News correspondent
“Always compassionate and pragmatic, Lori gives voice to other survivors who candidly share
their insights and experiences. Help Me Live breaks new ground with sections on children and
young adults and cultural considerations—truly a wonderful resource for all of us.”
—Peggy McGuire, Executive Director, Women’s Cancer Resource Center
“As an oncology nurse with over fourteen years of experience I have learned many truths by
listening to my clients. When I read Lori’s book, I found myself nodding in recognition of
many of these truths. She writes exquisitely of the emotions and the roller-coaster ride of a
cancer diagnosis and treatment. As a nurse educator, I plan to share this book with my
students to try and give them some insight into the common experiences that many cancer
patients have, as well as the uncommon ones.”
—Patricia Reilly, California State University School of Nursing
“This book is a gift to anyone who has been touched by cancer—and that is most of us. At the
core of Help Me Live Lori Hope offers a succinct and strong message—JUST BE THERE. In
those three words she offers guidance, strength, and hope and underscores the importance of
sharing our stories.”
—Nancy L. Snyderman, M.D., F.A.C.S., NBC News Chief Medical Editor, Associate Professor
Head and Neck Surgery, University of Pennsylvania
“Here’s the twenty-first thing you should know: This book is invaluable for anyone diagnosed
with cancer and for anyone who has a family member or friend battling the disease. Lori
Hope, a lung cancer survivor, writes intimately, poignantly, poetically, and humorously as she
tells it like it is.”
—Marc Silver, author of Breast Cancer Husband: Help Your Wife (and Yourself) during Diagnosis,
Treatment, and Beyond
“As someone who works every day with lung cancer patients, I know the deep wounds that
careless words—including the question, ‘Did you smoke?’—can inflict. Lori Hope shows you
how to do the opposite, how to help someone with cancer heal by taking away the blame and
stigma. Read this book, cover to cover, and help someone live. I did.”
—Sheila von Driska, Executive Director, Bonnie J. Addario Lung Cancer Foundation
“While many books are available to guide people with cancer and their families through the
physical and emotional upheaval of their journey, few are dedicated to how to help—and
avoid hurting—others with our words. In Help Me Live, Lori Hope has created a masterpiece of
compelling and heartfelt words of healing that should be required reading for doctors, family,
and friends of anyone traversing the cancer landscape.”
—Regina Vidaver, PhD, Executive Director, The National Lung Cancer Partnership
“Lori Hope’s refreshingly candid voice cuts a gentle, steady path through confusion and
discomfort. She’s a true expert in her field.”
—Hope Edelman, author of Motherless Daughters
“Help Me Live is personal, practical, and heartfelt and makes it easier to navigate the 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’s book is filled with warmth, practical advice, and perspectives that can help start a
great conversation with those we care about who are affected by cancer … [moving] us from
feeling fear or hesitation to connection and community when we need it most. Definitely
worth reading!”
—Margaret Stauffer, Program Director, Cancer Support Community, San Francisco Bay Area
“In her new chapter on gender issues, Lori looks at the differences between men and women
in the face of major illness. From my own experience, it was so familiar to read about the
female need to have a mate who most of the time only needs to listen, versus the male
tendency to rush to fix what ever he perceives is wrong.”
—Richard Anderson, past President, Well Spouse™ Association
Copyright © 2005, 2011 by Lori Hope
Foreword copyright © 2011 by Rachel Naomi Remen
The essay “What Not to Say to the Parent of a Child with Cancer” by Shannon
Kelley-Barry is reprinted with permission of the author
The essay “Li’l King Julian” by Mimi Avery is reprinted with permission of the author
The essay “What Young Adults Need to Know” by Kairol Rosenthal is reprinted with permission
of the author
The essay “Cancer Husbands: What You Need to Know” by Marc Silver is reprinted with
permission of the author All rights reserved.
Published in the United States by Celestial Arts, an imprint of the Crown Publishing Group, a
division of Random House, Inc., New York.
www.crownpublishing.com
www.tenspeed.com
Celestial Arts and the Celestial Arts colophon are registered trademarks of Random House, Inc.
Grateful acknowledgment is made to the Journal of Transpersonal Psychology for permission to
reprint an excerpt from “On Being a Support Person” by Ken Wilbur, copyright © 1988.
Reprinted by permission of Daniel L. Gaylinn, Executive Director, Association of Transpersonal
Psychology, and the author.
Library of Congress Cataloging-in-Publication Data
Hope, Lori.
Help me live : 20 things people with cancer want you to know /
Lori Hope. — Rev. ed.
p. cm.
1. Cancer—Popular works. 2. Cancer—Psychological aspects.
I. Title.
RC263.H67 2011
616.99’4—dc23
2011015572
eISBN: 978-1-58761372-2
v3.1
This book is dedicated to
Norman Crasilneck,
October 6, 1926–June 28, 2010,
forever my father and one of the brightest stars in my universe,
whose inspiriting sunniness, generosity, and disarming sense
of humor hearten me every single day.
Help Me Live is given in love to David.
Contents
Cover
Title Page
Copyright
Dedication
Foreword by Rachel Naomi Remen, MD
Preface to the Revised Edition
Introduction
Part I: 20 Things People with Cancer Want You to Know
1. “It’s okay to say or do the ‘wrong’ thing.”
2. “I need to know you’re here for me, but if you can’t be, you
can still show you care.”
3. “I like to hear success stories, not horror stories.”
4. “I am terrified and need to know you’ll forgive me if I snap
at you or bite your head off.”
5. “I need you to listen to me and let me cry.”
6. “Asking my permission can spare me pain.”
7. “I need to laugh—or just forget about cancer for a while!”
8. “I need to feel hope, but telling me to think positively can
make me feel worse.”
9. “I want you to respect my judgment and treatment
decisions.”
10. “I want you to give me an opening to talk about cancer,
and then take my lead.”
11. “I want compassion, not pity.”
12. “Advice may not be what I need, and it can hurt more than
help. Try comforting me instead.”
13. “I am still me; treat me kindly, not differently.”
14. “If you really want to help me, be specific about your offer,
or just help without asking.”
15. “I love being held in your thoughts or prayers.”
16. “Hearing platitudes or what’s good about cancer can
minimize my feelings.”
17. “I don’t know why I got cancer, and hearing your theory
may add grave insult to injury.”
18. “Don’t take it personally if I don’t return your call or want
to see you.”
19. “I need you to offer support to my caregiver, because that
helps me, too.”