Guide for Cancer Supporters
Step-by-step ways to help a relative or friend fight cancer
By
Annette and Richard Bloch
Authors of Fighting
Cancer and Cancer
. . . there's hope.
Copyright 1992 R. A. Bloch Cancer Foundation, Inc.
Published by R.A. Bloch Cancer Foundation, Inc. at Smashwords
R. A. Bloch Cancer Foundation, Inc
A
not-for-profit corporation
The Cancer Hot Line
One H&R
Block Way
Kansas City, Missouri
64105
816-854-5050
800-433-0464
BlochCancer.org
hotline@blochcancer.org
First Printing, January, 1992
Second Printing,
March, 1995
eBook version November 2011 by Mike Lyon
Smashwords Edition, License Notes
Thank you for downloading this free ebook. You are welcome to share it with your friends. This book may be reproduced, copied and distributed for non-commercial purposes, provided the book remains in its complete original form. This book is available to you without charge with the belief that it will truly help you, the supporter, to improve the quality of life of the cancer patient and increase their chances of successfully fighting their disease.
We would appreciate hearing your feelings after you read this book. Drop us a note. We care about you and the one near to you with cancer.
-- Annette and Richard Bloch
The sculpture on the front cover, Search for Support, was created by the world-renowned Mexican sculptor, Victor Salmones (1937-1989).
Note: In this book, the patient is referred to as "they." This was done to alleviate the awkward "he or she." Also, the authors arbitrarily refer to the physician as "he" and the supporter as "you" or "she."
Guide for Cancer Supporters is more than the ideas of one person or family. Questionnaires were sent to numerous doctors, nurses, psychologists, psychiatrists, social workers, facilitators of support groups, supporters of cancer patients and cancer patients seeking their input and suggestions. This is a compilation of the results of all of those along with the experiences of Richard Bloch, who was diagnosed as having terminal lung cancer in 1978 and given 90 days to live. After 2 years of strenuous treatments he was pronounced cured. In 1989, he was diagnosed with colon cancer and again endured a year of chemotherapy after surgery. He was supported through all of this by his wife, Annette and their three daughters. Their input along with the experiences of talking to more than a thousand cancer patients and their supporters by telephone and in person at the R. A. Bloch Cancer Management Center and R. A. Bloch Cancer Support Center are what make this book comprehensive and reliable. It is arranged for the primary supporter as well as the casual acquaintance. Checklists at the end of each section summarize the possibilities described in detail. It is a "must read" for anyone who wants to truly help a cancer patient improve the quality of their life and their chances of successfully fighting the disease.
Table of Contents
Introduction
Dedication
Foreword
Understanding
the patient
Making
a decision to fight
Guide
for Cancer Supporters
Knowledge
Medical
Treatments
Considering
the prognosis
Replacing
depression
Suggesting
Actions
Summary
Surgery
Chemotherapy
Gene
Therapy
Radiation
Therapy
Immunization
Therapy
Hyperthermia
Hormonal
Manipulation
Dye-Laser
Monoclonal
Antibodies
Common
Cancer Terms in Lay Language
One
Day at a Time
14
Bronze Plaques on the Positive Mental Attitude Walk
Road to
recovery Plaques
For
Casual Supporters
About
the Authors
Contact
Information
Introduction
Often when a person hears of someone near and dear to them being told they have cancer, their first reactions are - what can I do, how do I treat them, what do I say to them? Possibly the worst thing you can do is to do nothing, ignore the situation and avoid any discussion for fear of saying and doing the wrong thing.
This book is written to help you understand the facts about cancer, its probable effects on the patient and their likely reactions to the diagnosis. This will enable you to better fill the needs of the patient, whether your relationship is casual or you are the primary supporter or somewhere in between.
Part I is for the primary caregiver detailing the actions to take to truly help the cancer patient. Part II is a brief description of medical treatments available to a cancer patient and definitions, so you can educate yourself and be able to discuss them intelligently. Part III is designed to allow the casual supporter to be comfortable and constructive.
Chapter 9 includes a check list of specific helpful hints for the primary supporter in taking care of oneself.
If you are the primary supporter, such as a spouse, parent, child or closest friend, you will want to thoroughly read Part I and possibly Part II. If you are a casual acquaintance, you will want to concentrate on Part III.
The American Cancer Society predicts that one out of every three Americans will be stricken with cancer. Nearly every family will be affected. The chances are sooner or later you will appreciate suggestions on how to approach and communicate with the patient and be truly helpful as well as how to cope yourself.
The fundamental thread to remember is that the patient is a living being. The diagnosis of disease may have changed their focus, but it has not changed their likes and dislikes. Like every human being, they have interests they want to continue sharing. Be there for them and with them.
Sorrow is for the dead. Concern and caring is for the living. The worst thing you can do is to avoid the patient. Be with them. Your actions do not have to be negative, submissive or passive. They should be positive, active and helpful.
Remember, cancer is a word, not a sentence.
Dedication
This book is dedicated to our three daughters who were by our side continuously during the year of strenuous treatments, to our wonderful friends who were with us when we needed them, to the wonderful nurses, social workers, ministers and rabbis and other care givers who were an integral part of our support group, and particularly to "our" doctor who cured Dick from lung cancer. He knew the odds but he also knew the wisdom of bringing in specialists in the various disciplines to do what they are best at. He was like the conductor of a great orchestra. Not only did he cure Dick but he taught him a great deal about cancer, life and living along the way. He allowed Dick to fight to live rather than to wait to die. There is no doubt that he, like every other oncologist, fails to successfully treat a patient from time to time. I hope he realizes that he gave them true hope in trying to fight and restored a quality to their life, the most important factor there is.
A physician who will try to help a patient makes the support system possible.
Foreword
When cancer is diagnosed, it is not only the person diagnosed who experiences concerns about the future - but also the relatives and friends. In fact, studies have shown that levels of distress are just as high in the next of kin as in the patient! That is why we think of cancer as a "family" disease and recognize that support is needed by the family members as well as the patient. Other studies show that helping the spouse of a cancer patient cope better has a substantial effect upon the patient's ability to cope and can work like a "ripple" effect.
The best way to counter that initial overwhelming fear which accompanies a diagnosis of cancer is to get the best information available about cancer and its treatment and to begin to cope with the psychological impact. The need for commitment to a course of positive action is an important way of beginning to cope.
"What can I read?" is an increasingly common question. Advice for the caring family and friends has been sparse but this valuable little book begins to fill the gap. It carries the added weight of having been written by the Blochs who speak with the voice of experience - and who share "how it felt" to be given a three month prognosis. The commitment to finding treatment and not giving up is a success story we all benefit from today.
Part I is a powerful review of the "what it feels like" of cancer. Written for the healthy spouses of patients it gives important practical advice about helping the ill spouse. An important message is the value of providing support and access to good information, but not at the expense of taking the decision making away and respecting the person's individuality and need for independence. We live in an era when some books suggest there is only one correct way (their way) to face cancer and those who don't are doomed. The Blochs encourage respect for each person's coping style and their right to use it. The spouse is an important force in making the patient feel guilty for not using a particular method, or in feeling empowered and confident because they feel supported by their spouse in their handling of their cancer.
More attention to "helping the helper" is needed and hence, the value of this book, especially for spouses. The spouse must simultaneously support the patient, manage the home and family, make the living, manage the insurance forms, arrange visits to the doctor, share discussions about cancer, and answer all the well-meaning calls asking "How is Joe?" but rarely, "How are you?" The strains, borne without much recognition or praise, are difficult. More of our efforts must be directed to assure the spouse copes, since so much rests on the healthy adult. The Well Spouse foundation is a self help organization which has developed out of awareness of this need.
Part II is an excellent brief introduction to cancer therapies which is useful as one hears these words for the first time in a personal context.
Part III is directed to the casual friend who suffers from "Do I visit my friend with cancer?" "What do I say?" "Will it be the wrong thing?" Advice to reduce self-consciousness and affirmation of the need to keep ties which antedate the onset of cancer comes through clearly in this practical guide.
Last, biographies sometimes tell more than all the "do as I say" advice reveals. Dick Bloch's biography is a powerful "call to arms" at the book's end, sharing how one couple coped and won. It is well worth emulating!
-- Jimmie C. Holland, M.D., Director, Psychiatric Oncology, Memorial Sloan-Kettering Cancer Center
Part
I
Understanding the patient
This book is about actions!
Actions you can take from the very beginning and continue all the way through a cancer patient's recovery. What is important is to do the things that will really help the patient. Make them feel better now and in the long run. Try to help them have a better chance of succeeding in the fight against their disease.
In order to be a true helper, start out trying to understand how the patient feels. That is not what they say or how they act, but their true deep down feelings. To do this you must understand what they are going through.
They have been told they have cancer. It is impossible to appreciate the gravity of that short statement if you have not yourself been told this. Cancer is the most feared disease in America. All our life, we have been raised to understand that cancer kills. We have been told it is a horrible disease accompanied by pain, suffering and treatments that are probably worse than the disease itself. Even though we might not recall them at the moment, our subconscious recalls individuals who have had cancer, all of whom suffered and died. Supposedly cancer means pain and imminent death.
This is probably the first time the patient has had to seriously face their own mortality. Sure, we're all told from childhood that someday we will all die. But that is someday. Now they are told that someday is here. Wow! No matter what the age of the patient, it is like trying to get a child to leave a game arcade. They want to play just one more game. It is not unnatural to think about dying, but the important thing is to concentrate on living.
How suddenly their whole life changed! Cancer is often discovered by a doctor looking for the cause of a minor complaint or accidentally on a routine physical exam. One instant they are perfect or have a small complaint and the next they are told they have cancer, a term they know to be painfully fatal.
Next come all the psychological reactions. These are not isolated or occasional events, but in talking with cancer patients, happen universally to all those diagnosed. "Why me?" "What did I do to cause this?" "What did I do to deserve this?" "Who did I hurt?" "Where did I go wrong?" "So many others will be hurt because I have failed." The guilt trip is immense!
"I'm so angry." "Why now?" "Just when things are starting to break for me." "Just when I'm starting to succeed." "Just when I'm starting to have fun." "There's no justice in this world." This anger is often vented at the health care system, at oneself and those who help the patient including the supporter.
Talk about being scared! From every standpoint this is the most frightening thing that has ever happened. What is being scared? It is not knowing the future and fearing what it might be. And that fear has no bounds. It runs from death to treatments, to incapacity, to not knowing where to turn, to financial burden, to exposing their body and their thoughts, to who is going to care for others, to everything imaginable.
And isolation! "No one else has such a bad problem." "Everyone else is so happy and going about their business." "This is so rare." "I don't want to burden others with my problems." "I don't believe anyone else wants to be around me." "No one really cares." "I can't count on anyone." "They give me lip service but they really don't mean it." "I can't trust anyone anymore." "Maybe I can curl up in a corner and it will go away."
Then there is denial. "They made a mistake." "I really don't have cancer." "You read about these medical errors all the time." "I feel too good to be that sick." "Maybe the doctor got the wrong X-rays or maybe he mis-read them." "Should I just forget about it and see what happens?"
The list goes on and on. These are the universal feelings of every individual we have talked with who had cancer. These feelings are normal, natural and expected. A supporter will have comparable reactions. It's okay, and we should not feel guilty about it.
Whether the outlook for recovery is good or poor, the days go by, one at a time, and the patient and family must learn to live each one. It's not always easy. On learning the diagnosis, some decide that death is inevitable, and there is nothing to do but give up and wait. They are not the first to feel that way.
Orville Kelly, a newspaperman, described his initial battle with the specter of death. "I began to isolate myself from the rest of the world. I spent much time in bed, even though I was physically able to walk and drive. I thought about my own impending funeral and it made me very sad." These feelings continued from his first hospitalization through the first outpatient chemotherapy treatment. On the way home from that treatment, he was haunted by memories of the happy past, when "everything was all right." Then it occurred to Kelly, "I wasn't dead yet. I was able to drive my automobile. Why couldn't I return home to barbecue ribs?" He did, that very night. He began to talk to his wife and children about his fears and anxieties. And he became so frustrated at the feelings he had kept locked up inside himself that he wrote the newspaper article that led to the founding of Make Today Count, the mutual help group that now includes several hundred local chapters.
Each person must work through individual feelings of possible death, fear and isolation in his or her own good time. It is hard to overcome these feelings if they are never confronted head on, but it is an ongoing struggle. One day brings feelings of confidence, the next day despair. Many people find it helps considerably if they strive to return, both as individuals and as a family, to their normal lives.
Only when you thoroughly understand the patient, can you help. They are out there cold and alone in a totally strange place they have never seen and don't know where they are going or what they are supposed to do. With that in mind, where do you start out to help?
First, understand some truisms about cancer:
1. Cancer is the most curable of all chronic diseases.
2. There is no type of cancer for which there are no treatments!
3. There is no type of cancer from which some people have not been cured!
Next, make a list of things not to do:
1. Sympathy for the sake of sympathy doesn't help anyone. Show your compassion followed by a positive, constructive statement. An example would be, "I'm sorry you have to go through this ordeal, but be grateful that it was caught at this time and medical treatments have advanced so greatly."
2. Tears and sorrow are for the dead, not the living. When you are with the patient, cry with the patient, not for the patient. It can lead to meaningful conversations.
3. Never lie or state anything that is not a fact. It will ruin your credibility and come back to haunt you. For example, never say "I know you are going to get well." You can't possibly know that and the patient realizes it. Therefore, anything else you said with that would be ignored. However, it is possible to state any negative comments in a positive and constructive vein. "It's very serious, but we're going to do everything in our power to beat it" is an example.
4. There are no secrets from a cancer patient. Be totally open and honest, but with tact and optimism.
5. Do not classify in your own mind the patient as a statistic. This can cause you to harbor false feelings and your feelings have a way of coming through.
6. Do not encourage a feeling of futility. The patient's actions might make a difference in the outcome and will make a difference in the quality of their life.
7. Do not discourage work, prayer, exercise or diet.
8. Do not make a prognosis.
9. Do not make decisions for the patient that the patient is capable of making.
10. Do not fail to express love, caring and concern. Let the patient know how much you are hurting and the anger you are also feeling.
To summarize, your friend or relative is going through a traumatic time in their life. They don't need your sympathy. They need your help, support and direction. Do not say, "John, it is so terrible" or "John, it's such a shame." Do say, "John, we're going to do everything we can to try to get you healthy again."
Making a decision to fight
The greatest single thing that you can do to help a cancer patient is to convince them to make up their mind to really fight it. They must, on their own, make the commitment that they will do everything in their power to fight their disease. No exceptions. Nothing halfway. Nothing for the sake of ease or convenience. Everything! Nothing short of it. When they have done this, they have accomplished the most difficult thing they will have to accomplish throughout their entire treatment. And it doesn't matter how serious or how minor they are led to believe their cancer is.
If it is minor, great. Their commitment should not be difficult to abide by. If they are told they are going to die in 3 months or 3 years or whatever, their commitment is that much more vital. There are a lot of "terminal" people alive, healthy and cancer free. There is no type of cancer for which there is no treatment. There is no type of cancer from which some people have not been cured.
The statistics for the worst kind of cancer show a 2% survival, meaning 20 out of 1,000 beat it. We have received numerous letters from individuals stating they were told they were terminal and are now cancer free.
To give up requires no commitment. They can stay in the comfort of their own lifestyle. Fighting means a complete change of lifestyle, absolutely leaving their comfort zone. There will be doctors doing things they might not like. There will be lots of work for them to do. There might even be some pain and suffering and, certainly, lots of new and unexpected experiences. They must decide that the end is worth the means because they are the only one who can do it. No one else can do it for them. There is no half way. It's all the way. But when it is all said and done, no matter what the results, I've never met anyone who felt it was not the best way. See that they go for it with no second thoughts or regrets. Remember, once they have made the commitment, everything else is relatively easy. There will be pleasant experiences. There will be unpleasant experiences. But I can promise you nothing they will do will be as difficult as making the decision to make the commitment.
You will probably find your friend or relative saying, "I'm going to make it," or "Sure, I'll do everything needed." But that is a long way from making the commitment. Without a commitment, every step of the way is another torturous decision. Should I do this? Should I do that? Is this worth the time or effort? With the commitment, there is only one question: will it help me? If it might, then they do it. If it won't help, they don't do it. You can help the patient by seeing that they make this commitment and then help them stick to it. At the initial diagnosis, my wife cried in the visitor's waiting room. When I came to in the recovery room with my wife there and was told I had cancer, I cried. My wife said in determination, "Dick, we're going to beat this. Give me your word and promise that you and I are going to fight and beat this thing together." I did and I stopped crying right there.
A year of tough treatments later, when an X-ray unexpectedly showed what appeared like a recurrence, I said to my wife that I could not go through this all over again. She again said in a tough and determined voice, "You can, and you will if you have to." I agreed and was willing to start all over again if need be. Thank goodness this time the commitment was not necessary because it was scar tissue and not a recurrence, but I would have had I needed to.
I was diagnosed on a Wednesday. Being told I was terminal by one doctor, I first talked to a new doctor 900 miles away at 11 pm. He suggested I come on Thursday, and they would examine me on Friday. They were closed on Saturday and Sunday. Because I might never see my home again and I had a substantial job ahead of me to get my affairs in order, I asked to come on Sunday so they could examine me on Monday. It was really only one working day difference and gave me four days at home to get straightened out. This new doctor stated that if I was not there "tomorrow," he would not treat me. Later I realized that it was not the one day that was important. It was being certain that I would make the commitment to do everything it would take to fight cancer and win.
A diagnosis of cancer is not a death sentence. Half of all patients, including those who give up, are saved. For some types of cancer, over 9 out of 10 people can be considered cured. Of the others, many go into remission or have their cancer controlled for a long period of time. Indeed, there are sunrises as well as sunsets to be enjoyed. See that they make plans for living with cancer and its treatments. See that they make plans for living.
Work with the patient, discuss, coerce, convince, do whatever is necessary so that the patient makes a true commitment to do everything in their power to fight their disease. It will save untold painful decisions later on with the possibility of many resulting mistakes. By doing everything automatically that could possibly be helpful, their life will be much easier and probably better.
Guide for Cancer Supporters
Possibly the most common complaint is that the patient has given up. For one reason or another, they just refuse to do anything to help themself. Maybe the doctor has told them they are terminal. Maybe they have been told they are curable. The prognosis is not what seems to be the deciding factor. The supporter is frantic. She does not know what to do or how to get the patient to try to fight. She loves the patient and would do anything and has done everything.
And right there we generally have the cause of the problem. You love the patient; you would do anything for the patient, and you have done everything for the patient. What has happened with the best of intentions is that you have taken away all control from the patient.
You and others have talked with the doctors, you and others have planned the treatments, you and others have scheduled everything that needs being done, you and others do everything for the patient that the patient needs. This is not a question of intentions. There is no doubt that your intentions are the best. You love the patient and you want to show it by caring for them. But sit back and think about what kind of a message this is sending them.
By doing everything for them you are saying that they are not capable of doing it. You are saying that they are "sick." Your loved ones do not do these things for you. Why? Because they believe you are well. By your doing everything for them, they must believe that you believe they are in too bad a shape to do for themself. Possibly if the prognosis is good, you are sending a signal out that it is untrue. If it is bad, you are indicating that you agree. There is no hope.
You have taken their authority and responsibility away. They are a puppet to be manipulated by their medical team at your direction. They are unable to make decisions because they are denied the opportunity. Since they have no say, they have no reason to do anything. They are out of control. They have lost their reason for being, their will to live, their energy to fight.
So how do you correct the situation? It is difficult but not impossible. Put them back in charge. Stop doing for them that which they are capable of doing themself. Make them make the decisions that they can. Make them do for themself. They should read their own books, make their own phone calls, keep their own lists, schedule their own appointments, and do all their personal things that they are able and capable of doing themself and that, if they were healthy, they would normally be doing for themself.
Treat them as a "person with cancer" rather than a patient, enabling them to maintain control and participate in their health care as opposed to being something health care is being done to.
Granted this is difficult. You want to show your love and caring. It is probably comparable to giving candy to an overweight baby. For the moment, it might seem like the proper thing to do to make the infant happy. In the long run, there is no doubt that the infant is far better off without the unneeded candy. Likewise, for the moment your doing everything might seem like the best or easiest way. In the long run, the patient is far better off, happier, and will appreciate your love and caring more by being allowed to do for themself.
Once they are back in control, you can determine a happy balance between your doing and their doing for themself. There are many ways you can show your devotion besides usurping their authority and control. Suggest, discuss, reason, even disagree. Like a child wants a parent to express authority, a patient wants an individual to display their concern and caring by actions other than that of being a servant.
You can help the seriously ill patient ward off feelings of helplessness and abandonment if you continue to share your activities, goals and dreams as before. Few of us who are well know what it is like to be placed in a position of dependency. Cancer strikes one's self concept as a whole person as well as threatening one's life. Feelings of helplessness are real enough when one is flat on one's back. Make every effort not to compound them by ignoring the wishes of the patient, or worse, by trying to make an invalid of a person who is up and around.
When I was in the hospital recovering from surgery, my wife would visit me all day and then drive back to the hotel room at night. I asked my doctor if I might walk her to the car and he gave me permission on the condition that I would not use the elevator. I had to walk down the 2 flights of steps and back up! He knew the value of getting me to do for myself, plus the exercise.