Each person must work through, in his or her own way, feelings of possible death, fear and isolation. Returning to normal routines as much as possible often helps.
Give the pleasures and responsibilities of each day the attention they deserve.
Responsible pursuits keep life meaningful; recreation keeps it zesty. Fill your life with both.
Remember the difference between “doing” and “overdoing.” Rest is important to both physical and emotional strength.
It’s harder to bolster one’s will to live if you are alone. Yet many have acted as their own cheering squad and have found ways to lead meaningful lives.
Family members must not make an invalid of a person with cancer who is fully capable of physical activity and responsible participation in the family.
Family members should not equate physical incapability with mental failing. It is especially important that an ill patient feel a necessary part of the family.
Families must guard against “rehearsing” how they will act if the patient dies by excluding him or her from family affairs now.
Whether the outlook for recovery is good or poor, the days go by, one at a time, and 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.
Each day brings pleasures and responsibilities totally outside the realm of cancer. We should try to give each the attention it deserves. These are the threads of the fabric that enfolds our lives. They give it color and meaning.
The days can be more valuable if you can learn to enjoy common moments as well as memorable occasions. This is true whether you have weeks or years left. It is true, in fact, whether you have a life-threatening disease or not. Physical well-being is closely tied to emotional well-being. The time you take out from attending to cancer strengthens you for the time you must devote to it.
When you have cancer, you need responsibilities, diversions, outings and companionship just as before. As long as you are able, you should go to work, take the kids to the zoo, play cards with friends, go on a trip. Try to remember that responsible pursuits keep life meaningful, and recreation keeps it zesty. You need activities that give you a sense of purpose and those that provide enjoyment.
Some people find cancer is a spur to do the fun, adventurous or zany things they’ve always wanted to do but have put off as being not quite responsible. That’s a great idea. It helps ward off two overreactionsone is giving up, and the other is trying to cram a life’s worth of responsible accomplishment into a very short time.
A young woman with cancer put it this way: “Too often we patients fill up our lives with meaningful activities and neglect the frivolous outlets that keep us sane. And we tend to forget how important our sense of humor is.” She quotes Betty Rollin, author of First You Cry, as saying that cancer won’t bestow a sense of humor on someone who doesn’t have it, but a sense of humor can sure get you through the experience.
There is no scientific or medical proof for it, but cancer patients who have “places to go and things to do” seem to live longeror at least they feel that life still stretches before them. “I’m in my own real estate business, started a year ago, and serve as an officer in eight civic organizations,” a woman wrote. “Life has never been fuller, and for a 47-year-old grandmother, I’ve never felt stronger or better.” Seven years earlier, her family had been told she had six months to live.
Others have combined humor with too much interest in life to let go of it. “Mine has been a long battle, but I’m not ready to call it quits yet,” one such person declared. “I’m just too busy to schedule my demise, or maybe I just haven’t the good sense to lie down and let it happen!” Many have found they cannot retire from living. It’s much like employmentevery day you show up, you may as well give it your best!
“Doing,” it might be pointed out, is not the same as overdoing. Try to recognize your limitations as well as your capabilities. Fatigue can bring on crushing despair, and many people have found that as simple a safeguard as adequate rest fends off depression. Exhaustion weakens our physical and emotional defenses.
Pain also can make a mockery of attempts to function normally. Physicians are learning much about controlling pain without drugging the patient, so pain, especially if it is prolonged, should be discussed with your physician.
“Putting one’s house in order” is a desire that strikes many who learn they have cancer. This is not the same as giving up. In fact, everyone needs to review insurance policies, update wills and clean out the closets and drawers from time to timeand that gives you something constructive to do.
Going It Alone
It is obvious that many of these remarks have been directed toward the person with cancer who is part of a family. Some live alone, however, and some feel they have no one to “live for.” This increases loneliness and can make the will to live seem a bitter irony. They may want to pull the covers over their head and “get it over with.” If you have no one else to provide encouragement, you have to act as your own cheering squad. It is hard, but it’s not impossible.
An amazing gentleman of 73, who had been treated on and off for 8 years for Hodgkin’s disease, described how he coped. “I kept on fighting. This is what you must do. Positive thinking and an active life are two things which will do a great deal to relieve the tension.” In order to stay involved with life and mentally active, he enrolled in the university where he had received his bachelor of arts degree and began work on his master’s degree. “Some people think I’m crazy,” he admits. “Maybe I am, but it is a nice crazy anyway. At least, I have achieved happiness.”
An elderly woman decided to “start a new life, make what’s left of this one count.” She started helping a state school for the retarded, and her home became “a depot for people with used clothing and toys. Now I have branched out to helping with nursing homes. I am so busy and happy; I have no worries.
Not everyone can go beyond themselves and give to others to this extent. You might not have the physical or emotional strength. It may not be natural to your personality, and you are still the same person you were. But many find cancer is easier to live with if they choose constructive ways to fill their timeto make part of each day count for what they can put into it.
Support From the Family
The desire to “do something” is common among nearly everyone with a family member or dear friend who has cancer. There is nothing you can do to change the course of cancer, so you do everything you can for the person. Sometimes, doing everything is the worst course to follow.
People with cancer still have the same needs and often the same capabilities as they did before. If they are physically able, they need to participate in their normal range of activities and responsibilitiesright down to taking out the garbage. Helplessness, or worse, an unnecessary feeling of helplessness, is one of the great woes of the person with cancer. l n the words of one:
“I am deeply angry over the way patients (not only cancer patients but any patient with a life-threatening diagnosis) are automatically treated as if we were mentally incompetent. Our relatives have RIGHTS: we have none. This is by a sort of mutual consent, an unconscious conspiracy which seems to be part of our culture. Let an individual become a patient . . . and he is treated, without any ‘competency hearing,’ as if he had been found in a court of law to be in-competent. Only the relatives are consulted or empowered to make decisions.”
There is great bitterness in this woman’s words, and they can stand as a lesson to all. Although bedridden, a patient probably still is able to discuss treatment options, financial arrangements and the children’s school problems. The rest of the family must make every effort to preserve as much as possible the patient’s usual role within the family.
The least you can do is to keep the patient informed of necessary decisions. You can help the seriously ill patient ward off feelings of helplessness or 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 attacks 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. Pulling one’s weight is good exercise.
How the Family Copes
The needs of the family as a unit are important, too. Maintain normal living patterns within the family as well as possible. This is important for long-range as well as day-today coping. Sometimes, when the patient is in active treatment, family life becomes totally disrupted. If that happens, it is harder to resume functioning as a unit during periods of extended remission or permanent control.
“My worst emotional problem,” one patient said, “was finding that my improved health posed inconveniences and threw my family’s plans all out of line.”
Understanding such a situation might help prevent it. There are many ways we cope with fear, anxiety and the threat of loss or death. One way is to begin preparing ourselves for an event by thinking about it, without being aware that we are doing so, as if it had already happened. Thus, we “rehearse” life as it will be so that we can assume our new roles more easily when the time comes. People do this throughout their lives, although usually they are unaware of it. For example, teenagers spend increasing amounts of time with friends rather than with family, “rehearsing” for the time when they will go out on their own.
When a family member has cancer, you may be “rehearsing” the future in your own mind. You might begin to “practice” how the family will function if that person dies. Watch for signs that you are excluding the patient and turn the routine back toward normal if you are. Knowing that these things happen, however, try not to feel guilty if you find yourself emotionally out of step with remission or recovery.