If you'd rather place an order by talking to one of our cheerful order desk clerks, please call 1-888-232-4444 (USA and Canada only) or 250-383-6864. From Europe, ring our UK order desk clerk at local rate number 0845 230 9601 (UK only) or 44 (0)1865 722 113.

Not Just a Patient: How to Have a Life When You Have a Life-Threatening Disease

by Ellen Fein

64 pages; quality trade paperback (softcover); catalogue #03-0223; ISBN 1-55395-860-8; US$12.50, C$13.00, EUR8.88, £6.71

Practical tips for living with a life-threatening disease. A guide to taking care of yourself.

Read more!

about the book      about the author      Scheduled book signings and presentations      reviews      sample excerpts      catalogue info

About the Book Not Just a Patient is a handbook for people coping with the challenges of a life-threatening illness. Born out of the author's first-hand experiences, this is a fresh take on how you can get medical care and still have a life as a real person, not just a diagnosis. Individuals with a life-threatening illness, as well as those who care about and for them, will find plenty of practical suggestions in this easy to read guide: Getting, using, organizing, and understanding medical information Coping with life in the hospital and at home Finding the support you need Tackling health insurance Getting food you can eat (and enjoy) in the hospital Thinking about different paths to healing Finding free transportation services Filling in the gaps that are not addressed by the medical system Remembering and reminding others that you are a whole person Working effectively with all your providers, whether they are conventional, complementary, or alternative MAKING DECISIONS THAT ARE RIGHT FOR YOU!

---

About the Author Ellen Fein is a Licensed Clinical Social Worker. She has spent more than 20 years working in the mental health field, with much of that time spent as the CEO of a rural mental health center. For several years, she worked as an independent consultant for behavioral health organizations and the National Council of Community Behavioral Health. She has written several professional books and conducted training, consultation, and project management in such areas as board training, CEO recruitment, and organizational development. As a result of her husband's illness and death, and then her own experience with cancer, she now works as a Cancer Coach, with an emphasis on mind-body medicine, supporting individuals living with cancer, and writing and speaking as well. Ellen resides in Montpelier, Vermont with her daughter Becky Goldfinger-Fein and her Tibetan Terrier, Kasha. To purchase copies in bulk for free distribution to patients, please visit the author's website at www.notjustapatient.com. If you are a patient who cannot afford this book, please inquire about the availability of discounted copies at orders@notjustapatient.com.

---

Scheduled book signings and presentations

Saturday, April 12
9:30 am "Steps on the Healing Journey"
Hilton Towers, Washington DC

Tuesday, April 15
7:00 pm Presentation and Book Signing
"Not Just a Patient"
Central Vermont Hospital
Berlin, VT

Monday, April 21
7:00pm Presentation and Book Signing
"Not Just a Patient, Reflections on Our Mortality"
Dartmouth Hitchcock Medical Center
Lebanon, NH

Saturday, May 3
Book Signing
Stowe Weekend of Hope
Stowe, VT

Thursday, June 12
10:30 am Presentation and Book Signing
"Not Just a Patient"
Hospice Conference
Lake Morey Inn
Fairlee, VT

Tuesday, June 24
7:00 pm Reading and Book Signing
Bear Pond Books
Montpelier, VT

---

Reviews

"Life threatening illness is like entering a foreign country. Not Just A Patient is a candid, wise and practical guidebook for those who are ill and those who love them. Ellen Fein has turned her experience as both caregiver and patient into a blessing for us all."

Rachel Naomi Remen, M.D.
Author, KITCHEN TABLE WISDOM, MY GRANDFATHER'S BLESSINGS

---

"A practical person-friendly guide to living with, and beyond, life-threatening illness."

James S. Gordon, M.D.
Founder and Director of the Center for Mind-Body Medicine, Washington, DC
Chairman of the White House Commission on Complementary and Alternative Medicine Policy

---

"Fein offers her readers a wealth of practical ideas and messages of reassurance. Not Just A Patient is a resource that will benefit anyone whose life is touched by life-threatening illness."

Janet D. Perloff, Ph.D.
Professor, School of Social Welfare and School of Public Health, SUNY Albany
Cancer Survivor

---

"This is a wonderful book that anyone with a serious illness - and anyone caring for someone with a serious illness - will undoubtedly find helpful. It is compact, to the point, and provides well-balanced information but does not lecture. I learned a lot from the book and recommend it to patients without reservation."

Edus H. Warren, MD, Ph.D.
Fred Hutchinson Cancer Research Center

---

Sample Excerpts

Table of Contents

PREFACE

INTRODUCTION: The Things You Need to Know That No One Tells You About Living

TAKING CARE OF YOURSELF
       The Emotional Side
       Cautions About Your "Attitude"
       The Physical Side
       A Word about Fear

MEDICAL INFORMATION
       Deciding How Much You Want to Know
       Preparing to See Your Health Care Provider
       Using an Advocate
       Getting and Remembering Information/Answers
       Getting More Than One Opinion
       Finding "Experts"
       Using the Internet
       Keeping Track of Your Medical Information

CHOOSING TREATMENT
       Identifying What Is Right for You
       Selecting a Provider or Providers
       Selecting a Hospital

CHOOSING NOT TO HAVE TREATMENT

GETTING SUPPORT
       Identifying What Is Right for You
       Asking for Support
       Using the Support
       Finding Support

LIVING IN THE HOSPITAL
       Managing the Medical Aspects of Your Stay
       Coordinating Care
       Creature Comforts

BEING AT HOME
       Managing the Medical Aspects
       Managing the Non-Medical Aspects

DEALING WITH HEALTH INSURANCE
       Working with Case Managers
       Getting Authorizations
       Understanding Your Bills
       Resolving Insurance Problems
       Filing a Complaint
       Getting Assistance Beyond Your Insurance Company

WHEN IS IT TIME TO STOP TREATMENT?
       Why Stop Treatment?
       What Is Right for You?
       Planning for Your Death
       Talking with Friends and Family

GOING FORWARD

ACKNOWLEDGEMENTS

---

INTRODUCTION

The Things You Need to Know That No One Tells You About Living

When you are diagnosed with a life-threatening illness, it is all too easy to find yourself transformed into a "PATIENT." You seem to lose your identity.

My experience during my husband's bone marrow cancer, and now my own, convinced me that you CAN have a life. You can retain much of the identity you had before you were ill, and as important, you can exercise a surprising amount of influence over and control of your treatment and treatment environment.

This guide is based on the following assumptions:

• Each person must pursue healing in a way that fits with who he or she is. What is the right choice for one patient may not be the right choice for someone else.
• In the end, only the patient is in a position to make treatment choices. Opinions from those who care and data from providers may be useful, but the patient has to choose treatment.
• Health care providers tend to focus on symptoms, blood counts, tumor markers, etc. Their attention is, most often, medical intervention and NOT quality of life.
• The patient can do a great deal to maintain that quality of life throughout treatment and during the course of a life threatening illness.
• The suggestions in this guide are just that --suggestions. Some may seem helpful to the reader and others may seem way off base. I invite you to use what you want and disregard the rest.

---

Taking Care of Yourself

While you may turn over some important aspects of your health care to your doctor or health care provider, only you can attend to some key aspects of your health. When you do not feel well, it is easy to get overwhelmed by your own sense of illness. You can lessen this feeling and increase your sense of well-being. There are things that you can do that will help you face whatever is in front of you.

The Emotional Side

You will undoubtedly experience a wide range of feelings when you are diagnosed and as you live with your illness. Extreme feelings are a normal response. Sometimes, it can seem as if you are on an emotional roller coaster. Finding some balance can be very challenging. Living with lots of intense emotions may very well be part of your life now....

---

Medical Information

Deciding How Much You Want to Know

For some of us, getting information helps us cope. For others, it can be over- whelming or too discouraging. What is going to be most helpful for you? Each of us has to figure that out for ourself. Not an easy task when everything is so unknown and unpredictable. As early into the process as you can, think about how much and what type of information you want.

Do you want to know the survival odds? If the odds are not in your favor, how do you think it might affect you? Could it make you feel doomed? Will you be able to see that the numbers, while useful, are only just that? Numbers. If you want to get a great perspective on statistics and odds, check out this article by Stephen Jay Gould, "The Median Isn't the Message" at http://cancerguide.org/median_not_msg.html.

Are you going to want to have choices or would you prefer a single recommendation from your doctor? Some individuals feel empowered by gathering a lot of information and making a selection while others can be completely overwhelmed by needing to make decisions....

---

Living In the Hospital

IV Pumps. While these pumps are great for feeding medications into your body, their alarms can quickly become a dreaded aspect of your hospital stay. The alarm sounds when medication is done and needs to be stopped or changed. However, the alarms have a tendency to go off at a lot of other times and often. The alarm has a way of repeatedly going off as soon as the pump is "fixed" and the nurse leaves the room. You can be waiting what seems like any incredibly long time for a nurse to come in and turn it off. This is especially troublesome when you are trying to sleep. Fortunately, the pump alarm has an "off" or "silence" switch. In my experience, most nurses are happy to have you silence the alarm as long as you call them so they can come back and check the pump and restart it. If the alarm problem continues, ask the nurse to find another pump. For some reason, these pumps are just temperamental.

Clothes. Bring your own. There is no greater indignity than having to walk around in a "Johnny" with your backside hanging out. Bring pajamas, sweat pants and/or a robe that make you feel good and comfortable. Use slippers and avoid bare feet. Hospitals are incredible sources of infection and foot protection can help. Bring comfortable street clothes and put them on any time you are well enough to get out of bed for more than a few minutes. There is something empowering about wearing your own clothes. When I felt up to it, I found wearing a little jewelry and putting on makeup helped.

---

Catalogue Information

---