Fear and Anger, Hope and Humor

Cancer Talk: Voices of Hope and Endurance from 'The Group Room,' the World's Largest Cancer Support Group
by Selma R. Schimmel

For the first time, Cancer Talk provides a support group in a book.

Research shows that cancer patients who attend support groups can survive longer and lead fuller lives than patients receiving medical treatment alone. Cancer Talk, based on "The Group Room®," the nation's only talk-radio cancer support show, brings hope, information, and inspiration to everyone affected by cancer. Show host Selma Schimmel, a cancer advocate and longtime survivor, has gathered the voices of cancer patients and survivors, family and friends, physicians, therapists, and other healthcare professionals to create an invaluable guide to help you:

• Deal with the wide range of emotions a cancer diagnosis provokes
• Cope with relationships, intimacy, and physical changes
• Optimize the doctor-patient relationship and navigate treatment options
• Handle the side effects of treatment
• Understand legal, workplace, and insurance issues
• Live with and beyond cancer

Anyone whose life has been touched by cancer will find new support from the intimate and empowering voices of the only real experts out there--the people who live with cancer.

Chapter 1

A Note from the Author

One of the goals of Cancer Talk is to help people not see themselves as "victims," because being a victim implies that you are powerless. Today, people dealing with cancer are not powerless. Please note that we subscribe to the National Coalition for Cancer Survivorship (NCCS) definition of a cancer survivor as "anyone with a diagnosis of cancer, whether newly diagnosed or in remission or with recurrence or terminal cancer." This means that from the moment of diagnosis on, you're a survivor. There are millions of people dealing with the same issues and struggles that come with the cancer experience. Within these pages are many voices that will resonate with yours.

Cancer Talk is a collection of voices of cancer survivors, family members, friends, physicians, nurses, researchers, and other health care providers from throughout the United States and Canada who have shared their insights and knowledge with us on "The Group Room," a nationally syndicated call-in radio cancer talk show and support group. Except for experts and known personalities, whose names and affiliations are fully identified, names, cities, and identifying characteristics of cancer survivors and their families and friends have been changed, but not the essence of what they had to say. Their voices of hope and endurance give you the vital basics you need to get through cancer.

"The Group Room" has been on the air since February 1996. And every Sunday since then, we've been meeting as the world's largest cancer support group in a live call-in format to explore all the aspects of cancer--physical, emotional, clinical, social, political, and spiritual. The program can also be heard in real time on the World Wide Web at vitaloptions.org.

"The Group Room" cast members, who'll be identified by their first names throughout the book, include our medical oncologist, Michael B. Van Scoy-Mosher, M.D.; our radiation oncologist, Leslie Botnick, M.D.; and our therapist, Halina Irving, M.F.C.C., who is also a breast cancer survivor. Calls to "The Group Room" are screened by our oncology social workers, Carolyn Russell, L.C.S.W.; Diana Crispi, L.C.S.W.; and Perry Lisker, M.S.W. I moderate the dialogue in Cancer Talk, much as I do on the air, and my remarks appear in standard paragraph form.

Welcome to Cancer Talk, your source for support, information, and inspiration.

Fear and Anger, Hope and Humor

I had to make friends with fear.

-Olivia

One of the most common elements of the cancer experience is dealing with the spectrum of emotions that accompanies a diagnosis. Fear can be so overpowering that it can keep you from recognizing hope. And misdirected anger can push those you love away at a time when you really want them close. In this chapter, people share how they handle feelings of fear and anger, as well as find humor and nourish hope.

Cancer survivors deal with many different fears. Initially, it's the fear that accompanies a diagnosis: fear of the unknown, fear of dying, fear associated with receiving treatment, or ending treatment, fear of not being in control, plus fear of developing side effects or pain. For those involved in clinical trials or experimental therapies, the very nature of their uncertainty and unknown results may produce anxiety. Oftentimes, fears flare before routine follow-up exams. After cancer, there may be the lingering fear of recurrence, or the uncertainty of any late effects of treatment.

With certain cancers, such as low-grade lymphomas, the treatment of choice is no treatment at all. Treatment may not be initiated until the disease becomes symptomatic, leaving patients in a wait-and-watch mode that could last years. Living in this emotional limbo, with the stress and fear of uncertainty, makes patients feel as if they can never put the cancer behind them and regain a sense of control over their lives.

Fear can also masquerade as anger, which may keep you from directing your energies toward healing. It's no wonder that a person feels angry when cancer interrupts his or her life. Everything is changed in a split second, leaving you feeling, at least initially, powerless. You may face surgery, radiation, and/or chemotherapy. There can be side effects and risks to deal with. Relationships and your ability to work may be challenged, your sense of security is threatened. The future feels unsure, and questions of mortality are raised. The key is to be able to express the array of powerful emotions that go hand in hand with cancer. Having the courage to talk about your fears helps you diffuse anger and gain the clarity that's needed to make important decisions. It may feel very scary to even think about letting your feelings and worst fears out. I remember a man once told me that it was the intensity of his feelings that was so disturbing; the very idea of crying and facing the depth of his feelings made him fear that he would become out of control. So he withheld from expressing anything that would show his vulnerability. And his anger grew in proportion to the state of isolation he had created for himself.

If fear and anger are unavoidable aspects of the cancer experience, hope is central. I've learned from my own experience, and that of many others, that hope is a fluid thing, changing in response to people's needs. When you're just diagnosed, you hope for a treatable disease and recovery. When you face treatment, you may hope that potential side effects are minimal and that you get through treatment easily and successfully. Those dealing with advanced disease may hope to be pain free, to have time to spend in meaningful ways, for the chance to say "I love you" to someone special, or to resolve outstanding issues. By talking, reaching out, letting others know what you're feeling, and asking for the information and support you need, you build your own feelings of hope, helping others feel hopeful as well.

Perhaps the most surprising feeling associated with cancer is humor. Humor can be a very powerful release of our darkest and most hidden fears. Laughter in the face of tragedy, nervous giggles, laughing with tears in our eyes; these are ways to express the vital force that exists in all of us, no matter how difficult things get. Sometimes you cry until you laugh, or you laugh until you cry. I celebrated the end of treatment with a "Chemo-finito" party, inviting friends to "cell-ebrate my new infusion of life." Though there were some who felt uncomfortable with my black humor, it was a life-affirming celebration for me.

Copyright © 1999 by SCHIMMEL/FOX. Excerpted by permission of Broadway, a division of Random House, Inc. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.

About the Author

Selma R. Schimmel was diagnosed with breast cancer at age twenty-eight. In the sixteen years since, she has become a leader for numerous cancer programs and a healthcare advocate. Schimmel founded and currently serves as president and CEO of Vital Options®, which produces "The Group Room." She lives in southern California.