Coping with it all
I feel sometimes as if I’m caught in a gigantic bunch of moving gears. I panic for a minute . . . then take a deep breath and realize things aren’t so bad. I’m actually coping well with a lot of stuff and the panicky feelings get back under control.
---Judy, a forty-year-old chef with leukemia, reflecting on her early treatment
It is only in quite recent years that oncologists . . . have begun to confront squarely the emotional impact of [cancer and its treatment] and the fact that emotional states play a large role in the tolerability of treatment and, perhaps, in the outcome as well. . . . To many patients, stunned by the [cancer] diagnosis . . . it is like being trapped in the workings of a huge piece of complicated machinery.
----Lewis Thomas, M.D., physician-philosopher
For many people, a sense of relief accompanies starting treatment: “At last, I’m doing something to fight the cancer cells in my body.” Your initial uncertainty and anticipation are over, and you have renewed hope and the feeling of getting back in control of your life.
Now begins the time of coping with the actual treatment. Waiting for your first treatment, you may feel a return of that fear of the unknown, which goes along with facing any new, unfamiliar, and potentially frightening experience. The “horror stories” we’ve all heard, of how difficult cancer treatments were in the earlier days can add to the fears. Surgery used to be more radical, meaning a bigger incision, more scarring, more pain, and a longer, more difficult recovery. Radiation doses were less controlled, causing more tissue damage, and chemotherapy was given without the medications that are used today to control the side effects of nausea and vomiting. One woman expressed it as, “Oh, yes, I had the chemo-terror!” This fear of what’s coming, which is often based on misinformation and misperceptions, can be greatly reduced by asking your doctor to walk you verbally through exactly what is going to happen, step by step, in advance, like a rehearsal for the main event. This exercise reduces stage fright, or “treatment fright.” When you are well informed about what you will go through, you can mentally prepare yourself for each event, becoming less fearful and more self-confident about dealing with each other.
What makes coping easier?
Several factors tend to make coping with cancer and its treatment easier-or harder. Factors that can help you cope:
Being a person who is . . .
Generally positive towards life
Able to make one day at a time, to deal with the immediate
Optimistic and unlikely by nature to feel helpless during a crisis
Able to meet a challenge (like treatment) head-on
Not prone to become highly stressed in the face of challenges (treatment)
Able to commit to a goal and “hang in” (fighting spirit)
Able to see the humorous side of negative things (“black” humor)
Having enough information about the treatment, its goals, and possible side effects.
Having a caring medical team that is supportive and reassuring.
Having a caring nurse who can interpret the doctor’s communications.
Having support from others (family, friends).
Having belief system or philosophy of life that gives meaning to stressful situations.
Seeking counseling to change behaviors or ways of coping that are counter-productive.
Factors that can hinder how you cope:
Being a person who is . . .
Generally negative toward life and its problems
Unable to think one day at a time and worries about the future
Pessimistic by nature and can easily feel helpless in the face of stress
Apt to try to avoid a challenge when possible
Prone to become nervous and distressed in the face of challenge
Reluctant to persist in the face of stress and can easily become overwhelmed and feel hopeless
Unable to see the funny side of a situation or to take oneself less seriously
Feeling inadequately informed about the nature of the treatment: the need for it and its goals and side effects
Having a medical team that communicates poorly and doesn’t convey a sense of caring
Feeling isolated, without a person with whom to share the stress
Having no personal philosophy of life or belief system that gives you perspective on adverse events
Personality and coping
Personality is first and foremost. It is clear that certain personality and coping styles augur well for coping effectively with treatment. They are largely enduring qualities that one simply has or doesn’t have. Each of us copes with crisis and adversity in a slightly different way, but if you tend to be optimistic in your outlook and to “see the glass as half-full” (or, even better, three-quarters full) rather than “half empty,” you’re apt to be less distressed and less likely to anticipate the worst. People cope better when they face a problem or crisis head-on, rather than try to avoid the inevitable or count on its going away (the old ostrich, head-in the-sand syndrome). Successful copers tend to feel challenged rather than thrown or defeated by a problem, and they believe they can master it. They also demonstrate a “fighting spirit,” committing themselves to a goal, hanging in, and following through.
Don’t despair if you weren’t born with these traits. Your cancer doesn’t know it. Your personality traits affect how you behave, not how the cancer behaves. Some people seem to be born pessimistic, just as others seem like born alarmists or complainers; that’s how they see the world and it’s how they let off steam. People with these so-called negative characteristics can also get through cancer and survive it well. If you fall into this category or find it hard to hang in through tough times, you need to compensate by getting extra support from friends, family, your oncology team, or a counselor. Talking with a cancer survivor who has gone through the same treatment can be helpful; someone who is living proof that you can make it becomes a beacon of hope. (The OCF message board for example.) Practical advice from survivors has a credibility that other people’s advice lacks, because you know they have been there. Many hospitals and cancer centers have peer counseling programs, in which survivors of the same cancer you have are available to talk with you about what to expect as you go through treatment. If no such program is available, ask if you can talk with someone who has had the same cancer you have.
If you have traits that might lead to poor coping, it is important to be alert early in your treatment to how you are doing. Ask for help, since some of these negative coping styles can be turned around, making it easier for you to go through your treatment. Psychological help is available through individual sessions or in groups with other cancer patients. Both are aimed at reducing distress, which is often relieved just by sharing your feelings about your illness and treatment with someone who listens and understands.
Having or developing a philosophy of life or a belief system can give you a perspective for going through treatment in a way that makes it easier for you to tolerate the rough spots. Barbara White Fishman, artist and philanthropist, put it this way:
For me, knowing that I was seriously ill opened doors and opportunities that have truly enriched my life. It is through cancer that I have rediscovered my love of painting and refocused my energies to help others. Both have given me tremendous strength and satisfaction. There is a positive side in that cancer often serves as a wake-up call, that life is precious and each moment should be appreciated. I would not have taken time to discover who I am and what life is about if I hadn’t developed cancer. It sounds strange but I consider it a gift from God.
Some other factors are harder to control, since they’re not personal factors, but they count strongly in making coping with treatment easier. Feeling you understand the reason for the treatment, its goals and side effects and other options available to you, makes it easier to stay the course and keep a rational approach, especially when it gets rough. For example, you might feel like throwing in the towel if your first chemo treatment leaves you feeling wiped out. But if the doctor explains that only a complete cycle of chemo treatments can give you the best chance of getting rid of your cancer, you will probably find the resolve to do whatever is needed to try to “beat it.”
Troubling side effects such as hair loss from chemotherapy become easier or at least possible to bear if you can “keep you eye on the ball” in terms of the trade-off between short-term side effects and the possibility of long-term benefit and survival. As long-time lung cancer survivor and writer Alice Trillin put it, “I told the doctors, I don’t care about my hair. I want to be a grandmother.”
Of course, understanding and being committed to the treatment are inseparable from finding a caring doctor and health care team with whom you feel confident and who are “there for you.” Having a close friend or loved one who shares the burden of treatment is another positive. Many people must manage alone, because they lack a close family member or friend, and they do manage, but it may be harder. These individuals may find a support group particularly helpful, since the bonds that form among group members often people want to shield those close to them. For them, the groups become a safe place to talk.
Sense of humor
One helpful trait is the ability to “lighten things up” by putting difficult situations in a humorous perspective. It isn’t easy to laugh when you don’t feel good, but lots of evidence shows that being able to laugh at yourself and the situation is helpful and good for you. Norman Cousins popularized the idea, by claiming that watching funny movies (he watched Marx Brothers movies) helped him sleep pain free, despite a painful, degenerative arthritis-like condition. Mind-body, or psychoneuroimmunology, research backs up his claim. At the Loma Linda University Medical Center in California, Dr. Lee S. Berk and his colleagues found that laughter lowers the level of stress hormones (natural substances in our bodies that we release when we are stressed). I see humor being used over and over again as a way to take the sting out of a thoughtless comment, to laugh at one’s own reaction, or to tolerate a particularly difficult time.
We often refer to this kind of joking as “black humor” or “gallows humor”: putting a funny spin on a painful, serious situation. It is used by medical teams and is regarded as a critical balancing tactic for interns and house staff who are stressed, fatigued, and pushed to the max. Sometimes this is called the “MASH mentality,” reminiscent of the MASH frontline hospital unit portrayed in the long-running TV show. People slog through extreme circumstances by joking, making the best of what can’t be changed, and finding an unusual closeness to others going through the same experience. We also see this phenomenon among patients. Humor in the face of adversity seems to inspire an esprit de corps that contributes to greater coping and closeness.
New York Times columnist Robert Lipsyte, a testicular cancer survivor, calls this “tumor humor,” a form of joking. Here are some samples of tumor humor: William Matthews in a poem in the Atlantic Monthly noted:
Once you’ve had cancer, you don’t get headaches anymore, you get brain tumors, at least until the aspirin kicks in.
Betsy, a woman of fifty-four, had just completed chemotherapy for breast cancer. She was returning to her normal life when a mammogram revealed something in her treated breast. She described her reaction with a smile that expressed the irony of the pain:
When my doctor said, “We have to start treatment for a second tumor in your breast,” I said, “That’s impossible, I already gave at the office.”
A man with lung cancer chose humor as a way of dealing with his children, who were devastated by his having chemotherapy and losing his hair. He teased them by saying:
But don’t you see? Everybody worries about getting cancer. I don’t have that worry anymore—I’ve got it!
Humor can be a great way of dealing with the “dumb” comments from others when you are going through treatment for cancer. Several people have expressed with good humor their reaction to friends’ comments on how “well you look,” which makes them worried that either the friend is lying or they really look awful or they must have looked horrible the last time their friend saw them.
One person quipped:
The best thing about cancer is that people keep telling you how good you look, but that’s when I really start to worry.
One day at a time
One way we differ, which affects coping, is how we view time and the future. The diagnosis of cancer creates a sense of urgency about time that goes along with the uncertainty it causes. However, the person who can say, “I’m just going to take one day at a time” is able to stay focused on the tasks of that day. The person who hardly enjoys today because of concerns and worries about tomorrow has a much harder time dealing with illness. I often remind people that you can’t live yesterday or tomorrow, only today. William Osler called it “living your life in day tight compartments.” Any big task seems overwhelming until you break it down into manageable parts. The Chinese say, “You move a mountain by moving one stone at a time.” Hard as it is to keep thinking that way, coping with cancer is easier if you try not to focus on all the challenges that may lie ahead, but rather, stay focused on today, during which you can accomplish something despite the problems caused by the treatment.
Do’s and don’ts for coping with cancer
The following do’s and don’ts are intended to be common sense guidelines to help you avoid feeling “trapped in the workings of a huge piece of complicated machinery.” They incorporate ideas about the tyranny of positive thinking and how to deal with some of the attitudes that are out there about coping with cancer, some of which create more problems to deal with.
1. DON”T believe the old adage that “cancer equals death.” There are eight million survivors of cancer in the United States today.
2. DON”T blame yourself for causing your cancer. There is no scientific proof linking specific personalities, emotional states, or painful life events to the development of cancer. Even if you may have raised your cancer risk through smoking or some other habit, there is no benefit to blaming yourself or beating yourself up.
3. DO rely on ways of coping that helped you solve problems and handle crises in the past. If you’ve been a talker, find someone with whom you feel comfortable talking about your illness. If you’re an inveterate non-talker, you may find relaxation, meditation, or similar approaches helpful. The secret, however, is this: Use whatever has worked for you before, but if what you’re doing isn’t working, seek help to find other ways to cope.
4. DO cope with cancer “one day at a time.” The task of dealing with cancer seems less overwhelming when you break it up this way, and it also allows you to focus better on getting the most out of each day, despite illness.
5. DON”T feel guilty if you cannot keep a positive attitude all the time, especially when you don’t feel good. Low periods will occur, no matter how good you are at coping. There is no evidence that those periods have a negative effect on your health or tumor growth. If they become frequent or severe, though, seek help.
6. DON”T suffer in silence. Do use support and self-help groups if they make you feel better. Leave a group that makes you feel worse, but don’t try to go it all alone. Get support from your best resources: your family, friends, doctor, clergy, or those you meet in support groups who understand what you are going through
7. DON”T be embarrassed to seek counseling with a mental health professional for anxiety or depression that interferes with your sleep, eating, ability to concentrate, or ability to function normally if you feel your distress is getting out of hand.
8. DO use any methods that aid you in getting control over your fears or upset feelings, such as relaxation, meditation, and spiritual approaches.
9. DO find a doctor who lets you ask all your questions and for whom you feel mutual respect and trust. Insist on being a partner with him or her in your treatment. Ask what side effects you may expect and be prepared for them. Anticipating problems often make it easier to handle them if they occur.
10. DON”T keep your worries or symptoms (physical or psychological) secret from the person closest to you. Ask this person to accompany you to visits to the doctor when treatments are to be discussed. Research shows that people often don’t hear or absorb information when anxious. A second person will help you interpret what was said.
11. DO re-explore spiritual and religious beliefs and practices such as prayer that may have helped you in the past. (If you don’t consider yourself a religious or spiritual person, garner support from any belief system or philosophy that you value, such as humanism.) These beliefs may comfort you and may even help you find meaning in the experience of your illness.
12. DON”T abandon your regular treatment in favor of an alternative or complementary treatment. Use alternative treatments that do no harm and that can safely be used along with your regular treatment. Be sure to tell your doctor which complementary therapies you are using or want to use, since some should not be used during chemotherapy or radiation treatments. Discuss the benefits and risks of any alternative or complementary treatments with someone you trust who can asses them more objectively than when you were under stress. Psychological, social, and spiritual approaches are helpful and safe, and doctors encourage their use today.
13. DO keep a personal notebook with all your dates for treatments, laboratory values, X-ray reports, symptoms, and general status. Information is critical in cancer treatment, and no one can keep it better than you.
The continuum of distress: When to reach out for help
How well or how poorly you are coping at a particular time contributes to your level of emotional distress. Distress is a broad term that describes the unpleasant emotions that occur normally with cancer. Virtually every person confronted with the diagnosis and treatment feels vulnerable and sad about the loss of health and the sense of well-being. It is normal to feel uncertain and worried about the future. But an important question that arises is this: When does the distress become so great that it falls beyond the acceptable range so that you need professional help?
Sadness is the “normal” end of one continuum that goes all the way to serious depression, which can become so severe that you find it impossible to enjoy the things that you ordinarily enjoy. If you are depressed, you may feel helpless and hopeless, overwhelmed, and unable to eat, sleep, or concentrate. At its worst, you can’t get out of bed, carry on work or daily activities, or get yourself to the next treatment. The depression, then, is having an affect on your ability to continue your cancer treatment.
Your normal fears and worries, too, can spiral into a severe anxiety reaction, with panic attacks, phobias, tension, and distress. The distress may be barely tolerable, keeping you awake at night, robbing you of your appetite, and making you feel restless, frightened, and irritable. If you were a nervous person before, or had phobias, you are more likely to develop severe anxiety symptoms during illness. In cancer, these two emotions, worry and sadness, occur together, constituting most of the emotionally distressing side of cancer. Both can become more severe, but they are not a sign of mental illness or personal weakness. In a study done in 1984 in three cancer centers, just over half of the patients interviewed had distress that was severe enough to warrant further evaluation and treatment. The distress experienced by most of these individuals (about two-thirds), was caused by dealing with cancer, but the remaining third had some prior psychological problem, such as a phobia, that made it harder for them to deal with their illness.
A simple test is to rate how distressed you are on a scale of 1 to 10 (1 being no distress at all, and 10, severe distress). If you rank your distress from 1 to 4, you are probably doing just fine. If it is 5 or higher, you could benefit from extra support. However, if you rate your distress as 8, 9, or 10, and particularly if you have been feeling low, highly nervous, or scared over several days, call your doctor right away for a referral to a counselor or therapist who has experience working with people who have cancer.
A common problem for cancer patients with intense anxiety or depression is that their oncologist often doesn’t recognize it, so that they don’t get the counseling they need. About one out of every three people treated in oncology clinics is highly distressed, but surprisingly, less than one out of ten gets referred for help. One has to ask why? It is disappointing that while the stigma of cancer is diminishing, the stigma surrounding psychological and psychiatric problems is still widespread. People often suffer in silence rather than tell their doctor that they are having a hard time coping. Some attitudes that keep patients from speaking up are embodied in comments are these:
I’m too embarrassed to tell my doctor about my problem.
(This is especially true if it’s a sexual problem.)
He’ll think I’m a wimp and maybe won’t take care of me.
They’ll think I’m crazy.
My cancer problem is real---what could psychological help do for me?
She’ll think I complain too much.
He’ll tell me that the most important thing is to get the cancer to shrink, not to get sidetracked.
My family relies on me to be strong. If they think I’m having a hard time, they’ll all fall apart.
These attitudes, sadly, often prevent people from getting the help they need.
Doctors admit that they are reluctant to ask about psychological problems because “I’m not trained to handle them, and if I ask, it’ll take all day. I’ll be opening Pandora’s box.” Some doctors even believe the patient will be angry if asked about emotional problems. The net result is a “don’t ask, don’t tell” policy, like the one President Clinton chose to use in handling gays in the military. This approach has not worked well in the military, and it doesn’t help in patient care either. In addition, shorter visits (increasingly mandated by the unfortunate realities of managed care) don’t lend themselves to exploring the human side of care.
These barriers are best overcome by your pointing out that your cancer care must include concern for you as a person, not just treatment of your tumor. Because most cases of distress relate to illness such as a need to understand better your medical condition, the treatments available, and “what to expect” in general, your doctor is the best person to deal with these concerns. The oncology nurse or social worker often can provide additional information. Many people welcome this “two-tier approach” because the nurses and social workers on the oncology team with the physician are good, interested listeners who don’t convey the sense of being rushed.
If the problems or worries related to your illness, or even other worries, are occupying your mind a lot of the time, or feeling too intense for you to manage on your own, then it is important that you get the name of a mental health counselor with experience in cancer from your oncology team.