A diagnosis of cancer . . . is a powerful stimulus against procrastinating on warm and kindly or beautiful things . . . a reminder that many of the material things aren’t all that urgent after all. . Take time to watch the sunset with someone you love; there may not be another as lovely for the two of you.” These are the thoughts of a woman with cancer who needed to share her feelings with someone who would care and who could understand.
This guide is written for those affected by cancer: you, someone in your family or someone very close to you. We wrote this guide because, as another person described it, we often feel that “we share a common bond that only victims of cancer know, the feelings of anguish and the loneliness no one else can share.”
We’ve used letters, conversations, books and articles from, with, and by cancer patients, families and friends. The observations of professionals who work with cancer patients as expressed in conferences, seminars, and journals also have been explored. Our main emphasis, though, is on what the people who live with cancer in their own lives and their own homes think, feel, and do to cope with the disease.
No two people with cancer are alike as are no two relatives or friends of people with cancer. Although the material in this document is intended to be helpful, some sections may not apply to certain circumstances; a few might suggest responses that make you feel uncomfortable. Each person has to cope with cancer in an individual way. What follows is intended as a guide: a brief look at how some people with cancer and their loved ones feel and the ways they found to deal with those feelings.
Perhaps, if we explore together our emotions-a side of cancer that neither surgery, drugs, nor radiation can treat-we can help each other dispel some of those feelings. People with cancer, dear friends, and family members face intense fears, anxieties, and frustrations that are new to many of us, although others have taken the journey we now begin. We travel a road paved with an awesome mingling of hope and despair, courage and fear, humor and anger, and constant uncertainty. Perhaps, sharing the experiences of those who have walked the road before will help us define our own feelings and find our own ways of coping.
Our bodies and minds are not completely separate. It will help us keep our bodies strong if we also deal successfully with the emotional turmoil of cancer. We shall talk about some of the emotional problems we might face and some possible adjustments. We’ll explore learning to express and share our feelings about cancer, dealing with new responsibilities, coping with rejection by others, finding new meaning in our days, and using each day to its fullest measure.
There is another good reason for learning to define and live with our feelings about cancer. They may be with us for a long time. Cancer is undeniably a major illness; it is not necessarily fatal. Over 7 million Americans alive today have a history of cancer. For them cancer has become a chronic condition, somewhat like hypertension, diabetes, or a mild heart condition. As is true for others with chronic conditions, periodic health checkups will be part of their lifelong routine. They will, undeniably, be more sensitive to, and anxious about, minor signs of illness or discomfort. Unlike others with chronic disease, they most likely will not need lifelong medication or special diets to remind them daily that they once were ill. Many will live for years, grow old and die much as they had expected to do before cancer was diagnosed.
It is hard not to think about dying, but it’s important to concentrate on living. Remember, a diagnosis is not a death sentence. Many cancer patients will be treated successfully, and many others will live a long time after the diagnosis before dying with the disease. Indeed, there are sunrises as well as sunsets to be enjoyed. So let us take a look at living-living with cancer and its treatment, but living nonetheless.
Sharing the Diagnosis
- Cancer can be unutterably lonely. No one should try to bear it alone.
- Patient, family, and friends usually learn the diagnosis sooner or later. Most people find it easier for all if everybody can share their feelings instead of hiding them. This frees people to offer each other support.
- Patients usually agree that hiding the diagnosis from them denies them the right to make important choices about their life and their treatment.
- Families say patients who try to keep the diagnosis secret rob loved ones of the chance to express that love and to offer help and support.
- Family members and intimate friends also bear great emotional burdens and should be able to share them openly with each other and the patient.
- Even children should be told. They sense when something is amiss, and they may imagine a situation worse than it really is.
- The patient might want to tell the children directly, or it may be easier to have a close friend or loving relative do so.
- The children’s ages and emotional maturity should be a guide in deciding how much to tell. The goal is to let children express their feelings and ask questions about the cancer.
- By sharing the diagnosis, patient, family, and friends build foundations of mutual understanding and trust.
One question many people ask after diagnosis is “Should I tell?” Perhaps not. A family member could be too old, too young, or too emotionally fragile to accept the diagnosis, but people are surprisingly resilient. Most find ways to deal with the reality of illness and the possibility of death-even when it involves those they love most. They find the strength to bounce back from situations that seem to cause unbearable grief.
The way in which people differ is in the speed with which they bounce back. The diagnosis of cancer hits most of us with a wave of shock, of fright, of denial. Each person needs a different amount of time to pull himself or herself together and to deal with the reality of cancer. In reading the sections that follow, you should remember that only you really know your emotional timetable. Think about sharing at a time when you are ready to do so.
Should You Tell?
Usually, family and close friends learn sooner or later that you have cancer. Most people with cancer have found the best choice is to share the diagnosis and to give those closest to them the opportunity to offer their support. They have found it easier, in the long run, to confide their fears and hopes rather than trying to hide them. Of course, you must comfortably time your words in telling family and friends that you have cancer. We will talk more about that in the next chapter.
If you have no family, it is especially true that the road appears less lonely when shared with a few close friends. You might lose one or two. Some people will find it too difficult to talk with you or to be around you, and they will slip away. On the other hand, you may discover hidden strengths and compassion in the least likely of companions.
A woman with cancer wrote, “As for whether or not people should keep their illness a secret, I think they will learn with whom they can talk. Some people make themselves scarce if cancer is mentioned. But, cancer patients soon learn who their trusted friends are.”
Another person said, “I don’t think a cancer patient should keep it to himself. If it isn’t revealed, family and friends are robbed of the opportunity to share the feelings and anxieties that arise from having the disease. At most, life is very short for everyone. Because there are no guarantees, we should make the most of each day.”
On a practical level, trying to hide the diagnosis is usually fruitless. As you move from hope to despair and back again, family and close friends will sense something is deeply troubling you, even before they learn the facts. When you feel ready, try to share your news with them.
As you ponder whether you can share the diagnosis of cancer with others, it might help to remember the following. In telling loved ones about your cancer, you give them the opportunity to express their feelings, to voice their fears and hopes and to offer their hand in support. Then, each can give and take strength as they are able.
When Family Must Decide
Sometimes family members are the first to learn the diagnosis. If, as a family member, the decision falls to you, should you tell the patient? Some might think not, but most people with cancer disagree. “I think a cancer patient should be told the truth,” one wrote. “Time is so valuable, and there may be things the person would like to accomplish. There are decisions to be made…”
All of us have important life choices to make. People with cancer often find these choices become crystal clear when they feel their life span could be cut short. They might outlive any one of us, but people with cancer have the right to know and decide how they will spend their remaining days. There are exceptions to any generalization, but most people relate that “Mom took the news much better than we thought she would.”
A woman who herself has cancer recalled how things have changed since her mother was diagnosed in 1930. “My relatives never told my mother that she had cancer. Of course, then, they didn’t have the treatment they have available now. Looking back I realize no one fooled her. In not telling her, though, she was deprived of a very valuable outlet for her emotions.”
Family members also bear great emotional burdens during the period of diagnosis. They, too, need the comfort of sharing their feelings. Yet, it is almost impossible to support the rest of the family if you are hiding the diagnosis from the person with cancer. He or she inevitably learns the truth. The consequences can be deep anger, hurt, or bitterness. The patient might believe that no one is being honest about the diagnosis because the cancer is terminal. On the other hand, while you are trying to “spare the patient,” the person with cancer might be trying to protect family and friends from learning the truth. Then each ends up suffering alone, with thoughts and feelings locked within.
Somehow Children Know
Even children sense the truth. Some parents who tried to “spare” their children from knowing later voiced regret at not discussing the truth during the course of the disease. Children have amazing capabilities when they understand a situation. However, when their normal world is turned upside down and whispered conversations go on behind closed doors, they often imagine situations that are worse than reality. Young children dwell on “terrible” things they have done or said that place responsibility for the upheaval in the household on themselves. This is especially true if the child is going through a period of testing parental authority or in some other way is in disagreement with family members. Children, especially young ones, tend to view themselves as the center of the universe and see many situations only in direct relationship to themselves
The children’s ages and emotional maturity should suggest what and how much to disclose. It might help to realize that including the children, among those who know, comforts them by confirming their belief that something is amiss within the family.
A parent with cancer might want to tell the children directly. “I’ve been sick a lot lately, haven’t I? I have a disease called cancer. The doctors are doing every thing they can to make me well. I can’t spend as much time with you as I wish to; it’s going to be hard on all of us, but I still love you very much.”
Perhaps this is too painful. A close and loving aunt or uncle or friend might be able to explain things more comfortably. “Your daddy is ill. The doctors are almost sure they can make him well, but sometimes his treatments make him feel sad or grouchy. It’s nothing you children have done, but he needs your patience and understanding.”
The goal in telling the children that someone in the family has cancer is to give them opportunities to ask questions about the disease and to express their feelings about it. Of course, all of us want to shield our children from pain, but pain they understand is easier for them to cope with than hurts that they imagine. Some adults tell us that they still remember the feelings of rejection they suffered as children of cancer patients. As children they were aware of great disruption within the family, but at the time they were denied knowledge of the cause. They were hurt and confused by what seemed to be lack of attention and unreasonable demands or expectations.
Sharing Mutual Support
We begin to see that the most compelling reason for sharing the diagnosis with adults and children alike is that cancer can be so terribly lonely. No one need try to bear it alone. At times you will feel totally without ally or solace, regardless of supports. There is no need to increase these moments with poses meant to convince others close to you that you do not need their help. At a time when each of us who is trying to cope with cancer is in need of mutual support, we should not shut each other out. Through sharing we can build foundations of mutual understanding to sustain us through the long period ahead. We can share anxiety and sorrow, but we also can share love and joy and express our appreciation for each other in ways we ordinarily might find difficult or embarrassing.
Sharing Feelings
- Some in the family are able to absorb the impact of diagnosis sooner than others. This can create clashing needs as some wish to talk and some need to be private and introspective.
- Verbal and nonverbal clues help determine when is a good time to discuss the illness and how each will learn to live with it.
- If family members cannot help each other, other emotional support systems are available in the form of support groups or professional counselors.
- The person with cancer has the primary right to set the timetable for when he or she is ready to talk. Others can encourage that readiness through their love and continued presence.
- Talking may include expressing anger, fear, and inner confusion.
- False cheeriness-the “everything will be all right” routine-denies the person with cancer the opportunity to discuss fears and anxieties.
- Emphasizing the uniqueness of each person, positive test results, or good response to treatment is true support, both valid and valuable.
- The person with cancer needs family or friends as a constant in a changing world. “I’m here,” offers great reserves of support.
Sometimes, the whole family suspects the truth before the diagnosis is made. Someone recognizes the symptoms, or the family doctor seems overly concerned. Nonetheless, hearing those words, tumor…cancer… leukemia, we are stunned as we never may have been in our lives. It is often impossible to take in the diagnosis immediately. We hear it, but somehow we don’t believe it. This is normal. People’s minds have a wonderful capacity for absorbing information only as they are ready to accept it.
Emotional Timetables
All of us may not operate on the same emotional timetable. One of the family might feel the need to talk about the cancer before the others come to grips with it. Each of us has to decide when we are ready to talk; none should feel forced to do so.
This sometimes creates clashing needs-some need to talk; others need to be private and introspective or even to shut the whole subject out of their minds for a while. The desire to respect privacy may be pitted against an equal need to get the whole thing out in the open.
In some families everyone becomes overly considerate of everyone else’s needs for time to adjust. Instead of meeting anyone’s needs, everyone avoids one another, building walls just when they ought to be opening doors to communication.
It is important to let the person who has cancer call the signals for when it’s time to talk. But, it is always helpful to look for clues to determine when might be a good time to discuss the cancer and how to live with it.
Signs such as apparently idle conversation, more time than usual spent with other family members, or even unusual nervousness might indicate that a person wants to talk but doesn’t know where to begin. Yet, facing cancer together makes it easier. It eliminates the need for pretense when there are so many important matters to address. As you talk, you should try to be sensitive to what family members or friends say, how they position their bodies, and whether or not they make eye contact. These clues suggest whether the conversation is serving a purpose or driving someone you care about into hiding.
Some people cannot adjust their feelings and cannot help each other. Not all families can be open and sharing, and during a crisis is a difficult time to adjust family patterns. Nonetheless, the situation may not eliminate the need to air feelings. This is the time to turn to one of several sources outside the family for emotional support.
Consider Your Needs
When cancer is first diagnosed, some patients can absorb only the most basic information, and even that might need to be repeated. That’s normal. We each have the right to digest information at our own pace and determine when we are ready for more, and when we are ready to talk about what we know or want to know.
Cancer can have a devastating impact on families and loved ones. And this impact is worse when it happens to a young child because of the emotional strain it can put on the parents and the entire family.
Fortunately, however, there are so many resources available to the families of children who have been diagnosed with cancer. Parents and supporters of cancer victims need to take advantage of these institutions and programs in order to ease the pain and transitions created by cancer.
Reprinted with permissions from the National Cancer Institute
