Taking Time: Support for People with Cancer

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.