It is hard to be optimistic about your recovery or to feel good about yourself when, among other things, you are nausated and all your hair has fallen out. It can be especially demoralizing if, after you have returned home, you are still having a lot of days when you don't feel well. Yet, as woman with leukemia said, "I don't have any solid proof of this but, when I make an effort to be optimistic, I seem to feel better and have an easier time coping with treatment."
It is not easy to remain optimistic, particularly on those days when you are feeling absolutely awful, but it is important. It may take some practice. You might have to remind yourself again and again that you are getting better and that, as your treatment continues, you will have many more good days than you do bad days. You might also find that planning special activities for those days when you feel well helps to make the good days better and gives you something to look forward to on those days when you are feeling under the weather.
Restoring Self-Esteem
Probably the best way
to enhance your self image is to participate in those activities that help you
recapture a sense of mastery and control over your mind and body.
You might wish to look into techniques such as relaxation or meditation methods designed to focus the mind, alleviate tension and anxiety, and reduce stress. Some people take dancing lessons or exercise classes to improve their concentration or coordination. Other achieve a renewed sense of wholeness and well-being by participating in activities such as judo, karate, and yoga. Still others find that playing a favorite sport or music helps restore their self-confidence and sense of achievement.
Catching up on some long overdue reading, taking a course, or learning a hobby have opened up new areas of interest and growth for many patients. One woman told us that her poetry class "lit a creative fire within me that I never even knew existed," while a man who just started painting said it gave him "a profound experience of peace and contentment."
Staying Involved
Outpatient treatment is
designed to enable people to live as normally and productively as possible. Even
though you have some difficult adjustments to make, you really can become an active
participant in your own life
As a note of caution, try not to confuse "active" with "overactive. Respect you need for rest and relaxation. Exhaustion only weakens our physical and emotional defenses, and fatigue can trigger unnecessary bouts of depression and despair.
Perhaps this is also a good place to mention that people who have a serious illness often have a desire to "put their house in order." Some mistake this reaction as a sign of giving up, but more often, it is simply attending to details of life. From time to time, we all have to review insurance, update wills, clean out closets, and drawers. It can actually be an emotional relief to tie up loose ends and clear out clutter. It makes us feel constructive, accomplished, and allows us to move on -- unencumbered -- into new areas of exploration and growth.
Remember Who You Really
Are
It is important to remember,
while you have cancer, that you are not your illness. Your illness
is something that has happened to you and, although treatment may temporarily
affect your appearance and capabilities, you are not what you look like or
what you can do.
It is a special and rewarding challenge for us all, but particularly for those faced with a life-threatening illness, to discover and remain focused on whom we really are. Time and treatment may return you to good health, but in the long run, it will be the appreciation you have for your own real self, as well as the support of the people who love you, which will restore your sense of serenity and well being.
When cancer strikes one
person in a relationship, it strikes the other as well. Just as each person must
deal with heartrendering problems according to his or her own nature, each couple
must learn to cope with the stresses of treatment in ways compatible to their
relationship. Often couples are successful in handling many of these stresses
-- finances, transportation, revolving responsibilities -- only to have their
relationship seriously jeopardized by sexual and communication problems.
As A Couple
Concerns about Sex
Illness can invade even
the most private aspect of your partnership, and it is not unusual for couples
to have questions and anxieties about sex during treatment. People are often concerned
about whether cancer is contagious and whether any sexual dysfunctions stemming
from treatment will be permanent. So, we would like to address these concerns.
Any loss of sexual interest or ability resulting from treatment is usually temporary, and normal sexual functioning usually returns after therapy has been completed.
There are other problems that can affect the sexual aspect, and consequently the overall health of relationships. Communication is key to working through these problems. Being honest about your thoughts and feelings is sometimes very difficult, but talking about the issue is the way to get through the problem.
As the Patient
Some side effects can
make it difficult to feel good about your appearance. If you don't feel attractive,
you might fear rejection and avoid physical contact with your mate. Or, you might
be afraid that your partner will be unfaithful, especially if your treatment has
affected your sexual performance.
Try to remember who you really are and the reasons your mate finds you appealing. If you are having trouble getting back in touch with some of your special qualities, you might consider counseling as a way of regaining your perspective.
You might be able to view your fears in a future light if, for a moment, you put yourself in your partner's place. Discuss the doubts you have about yourself as well as those involving the security of your relationship with your spouse. You might be surprised to learn your partner is hesitant about initiating physical contact because he or she is afraid of appearing overeager or insensitive. So, it may be up to you to let your partner know when you are ready to engage in sexual intercourse, or desire other forms of physical affection such as hugging, caressing or kissing.
As A Spouse
As a person who is well,
treatment is no less difficult for you to live through than the patient. He or
she may be experiencing a lot of self-doubt and anxiety caused by side effects,
or possibly even by a mistaken idea about your true feelings. Your partner may
actually withdraw from you at the time when, more than ever, he or she needs your
support.
If possible, talk with your spouse about your conflicting feelings so that, together, you can prevent this cycle of misunderstanding from damaging your relationship. Remember that expressions of affection such as touching, kissing and holding are very important to the person who is sick. Reaching out shows your continued interest in your partner as an attractive and physically desireable person. Actions speak to your unconditional acceptance, support and love.
Some couples find the strength and support to overcome the difficulties created by illness. However, cancer can seriously strain a relationship that is already stressed by other problems and, in these instances, counseling might help reopen channels of communication.
Within the Family
A life-threatening illness
is devastating to every family it touches. Hospitalization as well as periods
of outpatient treatment disrupt normal routines and patterns of living. This is
true whether the patient in the household is a spouse, a child, or an elderly
patient.
Shifting Roles and Responsibilities
Family members may be
required to take on duties and responsibilities of the patient during the treatment
phase. Flexibility and adaptability are very helpful. A man or woman used to sharing
financial and household responsibilities might not have to be the only breadwinner
and full-time homemaker. A teenager might have to assume major household duties
while a younger child might be asked to take on additional duties.
When family members are forced to "wear too many hats" at one time, it undermines their physical and emotional health as individuals and consequently, undermines the strength of the family as a unit. As a family, it is important to minimize potential confusion and keep patterns of living and interaction -- within the family as well as with the outside world -- as close to normal as possible. This helps everyone cope with day-to-day stress during treatment and, in the long run, makes it easier to resume functioning as a unit during periods of extended remission or permanent control.
Setting Priorities and
Allocating Responsibilities
Establishing an order
of priorites and responsibilities helps to maintain a sense of normalcy within
the family structure. Family members can be assigned tasks falling within the
realm of their ordinary roles, making it easier to keep usual patterns of behavior
and interaction intact. Duties can be reallocated to members who can comfortably
assume more responsibility, shifting some of the weight from those who are carrying
too much of a load.
Members of the family, including the patient, can review current responsibilities and activities and determine together those things which are most important to the family as a unit as well as to each individual member. In some instances, you might want to have someone who is more objective, such as another relative or friend, help you sort out the tasks which are necessary from those which can be left undone. You might find you can temporarily relax housekeeping standards or prepare simpler meals.
You might consider getting
outside help. Licensed practical nurses can assist with the patient. County
and private agencies as well as outreach programs within the community might
be able to help with transportation, shopping, cooking, and other housekeeping
tasks. You might wish to hire someone to perform outside chores, such as cutting
the grass or weeding the garden. The cost of professional services has to be
weighed against the physical and emotional price paid by the family, as well
as by the patient, when members try to do everything by themselves.
Rights and Obligations
As a family member, you
naturally share in the responsibility to provide the patient with the best care
possible. It is also important to remember you have rights and needs too! You
have the right, as well as the obligation, to be sure that your own needs are
met and to maintain your own health and sense of well-being. In addition, you
have the responsibility to cooperate with other healthy members of the family
so that their needs can be met as well. This may sound selfish to some, but when
the needs of those within the family are satisfied, the patient usually receives
higher quality care and more loving attention.
You have the right and obligation to discriminate as best you can between those needs which are immediate and genuine and those which are not -- whether they are yours, those of a family member who is well, or those of the patient. Responding to only the genuine needs of the moment helps alleviate confusion and stress during the treatment phase.
You have the right to get outside help in caring for the patient when you need it. The patient may or may not agree, but even if he or she resists, you can and should feel comfortable about obtaining outside assistance when necessary. Try to not feel guilty about participating in outside interests and activities. If you maintain contact with the rest of the world, it will be easier to continue caring for the patient without any unnecessary feelings of anger or resentment.
Supporting the Patient
A life-threatening illness
attacks not only a person's life, but also his or her self-concept as a fully
functioning human being. Feelings of dependency and helplessness are common to
those which are seriously ill. As soon as the person feels physicallly able, he
or she should be encouraged to participate in a full range of family activities
and responsibilities, including emptying the garbage and feeding the cat.
Even if the hospitalized and bedridden, a patient can still have input into decisions regarding treatment options, family finances, and the children's schooling. Keep the patient informed. You can share your activities, your dreams, your goals. A patient who is involved with others is more likely not to succumb to the feelings of abandonment which often accompany a serious illness.
Helping the Family
Children can have a great
deal of difficulty when a parent has cancer. During periods of treatment, children
are often required to cope with situations beyond their maturity and understanding.
They may be asked to make exceptions for the moods of other people, to behave
especially well, or to perform extra chores. Sometimes children resent a loss
of time and attention. They may begin behaving themselves contrary to their usual
nature or patterns. Normally quiet and compliant children may become openly rebellious.
Those who are ordinarily gregarious may suddenly become timid and shy. Some can
become preoccupied with thoughts of death, particularly there own or that of their
parents.
Children do need discipline and guidance and, especially during periods of upheaval, the reassurance and support of a loving adult. Perhaps a favorite relative or family friend can take them on a special day trips, help with their homework, and even attend an occasional little league game. This extra time and attention can be a beneficial supplement to your effors to provide security and support.
Living Alone
When there is no one else
in your home to provide encouragement, treatment can be a difficult time. It isn't
easy, but regardless of your living situation, there are times when we all have
to find our own motivation for "getting up in the morning". As is the case with
other people with cancer, your life consisted of pleasures and responsibilities
before you got sick and, as soon as you are able, you should resume as many of
your normal activities as possible.
Some people view survivorship as an opportunity to reassess their lives and make a new start. One man, previously a mortician, decided he would be happier helping people who were still alive and switched his career to hospital administration. A remarkable eighty-year-old woman, treated on and off for leukemia for the past twelve years, began helping out in the kitchen of the local senior citizens' center. Today, she supervises the kitchen staff, organizes special trips and says, "I meet so many people and feel so involved with life now. I'm busy and happy and, best of all, I don't have too much time to worry about myself."
People often find, even during periods of outpatient treatment, that by helping others they also help themselves. Many become hospital volunteers, active members of church and community groups, or involved in support groups for others coping with cancer.