Feelings and Relationships

Getting the News

Finding out that you or a loved one has cancer causes so many mixed feelings. Many feel that they are riding an emotional roller coaster with lots of loops and steep hills. It may seem like the world is closing in on you and time stands still. Each person experiences cancer differently depending on your past coping skills, knowledge, and thoughts about cancer. Anger, bitterness, fear, depression, sadness, denial, grief, and much more can appear in your life anytime.

To know that you are not going crazy, but are having normal reactions to real events, it may help to know what thoughts might be lurking in the back of your mind. You are not losing your mind, rather, losing control. You need to feel confident in yourself and take back the control you want and need. Do not make the mistake of leaving your destiny to chance, luck, or fate.

Most of your feelings will come from feelings of loss. The loss may be expected, actual, or perceived based on you experiences of earlier losses and how you dealt with them. See if you can identify with any of the following losses.

Loss of health: fatigue, side effects of treatment, dependency for help, emotional and physical immobility.

Loss of support persons: friends or family who don't call anymore, contact stops, or less visiting.

Loss of "part" of self: surgery of breast, ovaries, testicles, etc.

Loss of external objects: pets, home, car, clothes due to weight loss.

Loss of status: job, volunteer activities, or social activities.

Loss of lifestyle: lower income, bankruptcy, bills, changed activity level, fewer vacations, too much or too little time.

Other feelings will evolve because of fears. You may or may not be aware of the fears that paralyze you. Support persons and caregivers often have similar fears. If you can identify your fears, overcoming them will be easier. Look below to find out which fears you may have.

Fear of cancer: "Why me?", a poor prognosis, progression of illness, recurrence of illness, failure to respond to therapy, incorrect information about cancer.

Fear of health care: lack of confidence in treatment, doctors, nurses, insurance plan, or hospitals.

Fear of decisions: making wrong decisions, forgetting important information needed to make decisions or following instructions.

Fear of stigmas from uninformed people: Is it contagious? Does it cause death? Are you poor? What did you do to bring this on yourself? What sins have you committed? You can't work or play anymore because you are ill. You are unclean. You can't go anywhere. You will look sick.

Fear of the unknown future: Will I see my children grow up? Will I be in pain? Will I look ugly or deformed? Can I go back/continue to work? Will I suffer?

Fear of change: appearance, energy, schedule, or relationships.

No matter what your fears or losses are, be patient with yourself. People have feelings for a reason, to be fully human. That is what separates us from the animal kingdom. Chances are, if you are having trouble dealing with feelings, then someone else is too.

Some seek support groups to share their feelings with people who understand in a safe and caring environment. Others prefer to talk with social workers or therapists who specialize in cancer issues. Whether you open up to a group, therapist, or friends and family, the key is that you don't hold your feelings inside. If you try to ignore your feelings or deny them, they will come out later. Dealing with feelings when you are experiencing them is the best way to get through the emotional and physical obstacles cancer can present.

Scientists suggest that how you think affects how well you fight cancer. I have found this in my own practice. Patients who have a strong support group and a positive attitude, do much better. They have less side effects and overall respond to treatment more favorably. It may have something to do with the mind/body connection being researched.

Scientists are studying how thoughts can control parts of the body such as heart rate, energy, and the immune system which is in charge of fighting off illness. When you think positively or are happy, your body may release certain chemicals into the bloodstream that benefits the body. This theory gave birth to new approaches like meditation, relaxation, visualization, and imagery. Whatever the reason, it does work for people who are committed to practice these methods. Even if you try them, they cannot hurt you in any way so what do you have to lose?

Loved ones share similar feelings when they find out you have cancer. Cancer affects all who are involved either directly or indirectly. People don't have to live with you to care and worry about you. Love is the shortest distance between two hearts, and miles may separate you, but love and friendship are by your side.

Telling and talking to people about your diagnosis of cancer is usually difficult. Most times, you have not even made sense of it yourself when you are trying to tell others. Especially difficult is telling your children or parents. The bond between a child and parent is a miracle of life itself. It is so strong, yet so fragile. You may feel that you have to protect them by withholding information, but I assure you, except in extreme cases, sharing your diagnosis with those closest to you is essential. Here are some thoughts on how to talk with your children.

Children

Why Should I Tell My Children?

A child has a right to know about anything that affects the family, especially cancer.

Not telling breaks trust.

Children know something is wrong.

If you protect them by saying nothing, they may have fears worse than the real situation.

Not talking about cancer may suggest it is a subject too terrible to be discussed.

You would not wish your children to have an abnormal fear of cancer.

Children may find out the truth from someone else, or get wrong ideas from TV or other sources.

Children can feel isolated if they are not told.

They might feel they are not important enough to be included in family matters.

Children are good observers but poor interpreters. For example, "Grandpa died in the hospital. Now Dad had to go to the hospital. He's going to die, too." Or, "I got mad at Mom when she told me I couldn't go to the store. Then she got sick. Maybe I made her sick."

Children who are informed can be a comfort to you.

You will not need to feel secretive, detached, and isolated in your own family.

Children have an amazing ability and capacity to deal with truth.

Even very sad truths will relieve the anxiety of too much uncertainty.

Coping with cancer in the family can be a growth experience for children. They can learn about the body, cancer, treatment and healing. They can learn about feelings and the strength of the human spirit in difficult times.

Who Should Tell My Children?

You should if you think you are up to it. It will show them that talking about cancer is okay, that you are dealing with it in your own way, and that it is not something that will come between your relationship with them. It is okay to cry. Seeing you show emotions gives your children permission to show feelings, too. If you are not ready to talk to your child about cancer, then ask a close relative, friend, school counselor, therapist, or your doctor/nurse.

When and What Should I Tell My Children?

Children need to be told information as soon as possible. They lack the understanding they need to figure out what is accurately happening and the true reasons for it. Explain what is wrong and what will happen next. When you are diagnosed explain that you have an illness, how it will be treated, side effects if any, what your thoughts are, and whether things will be the same or different at home. Let them know that you will keep them informed about your health and will let them know about any changes. Assure them they will continue to be loved and cared for. Listen and they will let you know what they need to know.

Some ways to say things may be "I have a sickness. It is called cancer. The doctor is giving me medicine to help me get well. Sometimes I will feel sick or tired and sometimes I will be just fine. Dad will help me take care of you until I feel better." or "Being sick makes me feel sad. You are a help. It's O. K. for you to feel sad (or angry or happy or whatever). Our feelings change but love is always there." or "something was growing in my body that wasn't supposed to be there. It is called cancer. The doctors took it out in the operation I had. Now I will have medicine so it doesn't grow back. If you have any questions about cancer, you should ask me. Sometimes you hear scary things about cancer. I will tell you what we know about my cancer." or "The cancer is trying to grow again. That makes me angry and sad, too. I have to take very strong medicine (or have another operation or radiation) to try to get rid of it. Doctors know a lot about taking care of people when this happens. We are doing the best we can. We think it will work."

Don't lie, but don't trouble them with frightening medical details, financial concerns (except as it will affect them), test results that are not in yet, etc. Don't make promises you may not be able to keep. (Say "I think I will be able to . . ." or "I will try to . . . "). Don't be afraid to say "I don't know." Don't push children to talk.

At times, you may feel strong feelings when you are with your child. You may not want to burden your child with your fear, anger, or sadness. Still, children are often aware of how you feel. In fact, children may hide their own feelings to protect their parents. You can tell your child why you are sad. This reassures your child that you are not angry with him or her and lets your child express feelings. Let your child know that it is okay to cry and be sad. This gives him or her permission to show feelings.

Children are often curious and may have many questions about illness and treatment. Your child knows and trusts you and will expect you to respond to questions. Some children will ask questions right away, while others will ask them later. Continue to listen and talk when a child asks questions or seems concerned about your condition. Answer their questions simply. Ask them what they think cancer or if they are worried about you. Correct any misinformation they may have. Express feelings and facts.

Particularly at first, you may want to talk to children individually in words he/she knows. Later, talking about some things as a family may be more comfortable. You may want to practice what you will say and plan ahead for questions the children will ask. Below is a guide to help you know what the child can understand at his/her age level. Keep in mind, each child grows intellectually and emotionally at different rates.

Newborn to two-year-olds

Children this young cannot understand an illness such as cancer. They can't see it or touch it. They only understand what is happening in the present. They are more concerned with what is happening to them. Separation from their parents is a major worry. Children more than a year old are concerned with how things feel and how to control things around them. Very young children are most afraid of medical procedures and tests. Many cry, run away, or squirm to try to control what is happening.

After eighteen months, children begin to think about what is going on around them. That's why an honest approach is best. Be truthful about trips to the hospital and procedures that may hurt. You can tell your child that needle-sticks will hurt for a minute and that crying is okay. This lets your child know that you understand and accept his or her feelings. Your honesty also helps build trust. Being able to make choices, if they do not interfere with treatment or harm health, can increase your child's confidence and sense of control. For example, if a medicine is taken by mouth, your child could choose to have it mixed in apple juice, grape juice, or applesauce.

Two to seven-year-olds

Children ages two to seven are better able to understand illness. Reasoning and problem solving skills are beginning to develop. By using symbols, they can understand that there is a past and future. They tend to look at things from their own point of view and believe that the world revolves around them. They link events to one thing. For example, they usually tie illness to a specific event such as staying in bed or eating Jell-O or popsicles. Children at this age often think a specific action causes illness. Therefore, getting better will happen automatically if they follow a set of rules.

Younger children, in particular, cannot grasp cause and effect. They need to be reassured often that they did nothing to cause their illness and that their cancer treatment is not punishment for something they have done, said, or thought. Children in this age group also need to have medical procedures explained honestly and realistically. It helps to remind children that all of the tests and treatments are done to help them feel better.

Simple explanations about cancer are also important. Stories that relate cancer to familiar ideas will help in explaining the diagnosis. The two-to-seven-year-old, for example, knows good and bad. Try explaining cancer and treatments as a battle between "good guy cells" and "bad guy cells." Taking medicine will help the good guys become stronger so they can beat the bad guys.

The youngest children fear separation, strangers and being left alone. If you are hospitalized, have a familiar person stay with them. Talk to them. Reassure them you are coming home from the hospital soon and that you think of them when you are apart. If they come to visit you, suggest they bring a favorite toy with them.

Young children feel they have magical powers and what they wish will come true. They may feel guilty that a parent is ill, or about having bad thoughts about a parent. Assure them that nothing they have done or said or thought could cause your illness.

When it comes to emotions, these children assume that everyone thinks and feels the same way they do. It is important for you to tell them your feelings so they can understand that you may not be feeling the same things they are.

The child in this age group needs consistency and predictability in discipline. They need to know what to expect when they misbehave. It may be hard to punish them when they act out when you are tired or feel guilty that you cannot spend time with them during treatment, but it will help them feel safe.

Seven to twelve-year-olds

Children ages seven to twelve years are still limited by their own experiences but are starting to understand the world around them. They see illness as a set of symptoms. They are less likely to believe that illness resulted from something they did. They know that getting better comes from taking medicines and doing what the doctor says.

An explanation of cancer to this child can be more detailed but should still include familiar situations. Comparisons also are useful in explaining cancer to children in this age group. You might say that there are different kinds of cells in the body, and these cells have different jobs to do. Like people, these cells must work together to get their jobs done. Cancer cells can be described as "troublemakers," that get in the way of good cells. Treatment helps to get rid of the "troublemakers" so the other cells can work together again.

Although the understanding of death varies among 7-to-12-year-olds, many children in this age group think or worry about death. However, they often are afraid to say anything to you. Be open and honest with your child. Tell your child that you, the doctors, nurses, and others are doing everything they can to make the cancer cells go away. Reassure your child that people with cancer can get better, but no matter what happens, you'll be there. If you are not sure what to say, ask the doctor, nurse, social worker, or chaplain for help.

Children between six and eleven may be overly concerned about a parent's health. It is important not to talk over or worry them with details. Problems with eating, sleeping, schoolwork and friendships may happen. Children at any age may return to earlier comforting habits like thumb-sucking or climbing in bed with you. Sometimes it is just their way of getting attention. Let the children's teachers and school counselor know about your condition as soon as possible. Their suggestions and understanding may help to prevent problems.

Twelve years and older

Many children older than twelve years can understand complicated circumstances. They can think about things they have not experienced themselves. Teenagers still define illness by specific symptoms, such as tiredness, and by limits on everyday activities, but they also know the reasons for their symptoms. You can explain cancer as an illness in which a few cells in the body get "messed up." These "messed up" cells grow more quickly than normal cells, attack other pans of the body, and disrupt normal body functions. The goal of treatment is to kill the "messed up" cells. Then the body can function normally again, and the symptoms will go away.

Teenagers think that cancer may lead to death. They need to be reassured that much progress has been made in treating cancer. They also need to know that many who have cancer survive their illness and live normal, healthy lives. In fact, the number of survivors is increasing all the time.

Throughout treatment and follow up care, you should continue to talk openly with your child. Like many other children, your child may, with time, ask more complex questions. Setting up patterns of open communication early will support your child now and strengthen your relationship for years to come.

Teenagers have an especially hard time because their own emotions may be unstable. Just when they are trying to be independent, a parent may need to depend on them. Some will rebel and regress in behavior. Some will take on heavy responsibilities and mature too rapidly. Some will take this experience one day at a time.

If you're finding problems continue, involve the people at your school, church, your hospital or the children's hospital in your area and don't hesitate to ask for professional counseling. Ask about educational videotapes, TV programs, and/or books available through the hospital or local library. These could be good resources for helping your children understand. Teenagers might want to join a group sponsored by the hospital or local ACS or other organization.

Children's Reactions

Discipline may be difficult because children act up to get the attention they feel they are missing. A sudden lack of discipline can show a child that something is wrong at home. It is important to set firm limits and find ways to carry them out. Show your understanding, love and approval of the children but not their disobedience. Reward good behavior and let them know you especially appreciate cooperation now.

If you never show how you feel, chances are they won't either. Covering up strong feelings is like sitting on a time bomb. A child can become frightened of his/her own feelings instead of accepting them as O.K.

Of course you are sad about what has happened. Don't be afraid to express it. If you can let the sadness out, everyone will feel the tension ease. Various thoughts might run through the children's minds if they are not able to express their feelings openly:

1. Some children may feel sorry for themselves when a parent is sick, then feel guilty because they think they should feel sorry for the parent instead.

2. They may be angry at the parent for being sick and wish the parent was not there and then feel guilty about that or try to make up for these guilt feelings by being super good and setting extremely high standards for themselves.

3. Other children may cling to you too much, afraid something will happen if they are not there, or they may withdraw from you, unconsciously trying to become more independent in case something else happens to you.

4. They may resent the fact that they need to help you.

5. Some children will laugh and behave badly to cover up their real feelings or their lack of understanding.

6. Some children will act sick to get attention or because they want to be with a parent. They might make a big fuss about a minor illness.

7. Some children will be afraid they'll get cancer, too.

Besides talking with your children, it is important to spend quality time together. If necessary, think of things to do that do not need much energy. Read, watch TV together, write a story about your family and share it with them, or have clay and other creative things to use to work out some frustrations that you and the children share.

You may want to combine sharing feelings with spending time together. Read a book together about the body. Point out where the cancer is and what is happening physically. With younger children, role play. Act out what is happening to you by using a doll. Use other dolls for other members of your family. Children often express what they are really feeling in their play. Listen. Have your children draw pictures about the experience of having a parent ill. This is also a good way to express feelings. Write a story together about "When dad got sick." Select stories about other people who have had cancer and read them with your children.

Get together to meet other parents and families who are coping with cancer. Share meaningful poems and songs or any other things which are inspirational to your children. Make up or find a "slogan" to help all of you. Make banners, mobiles, or buttons using the saying for inspiration. You're only limited by your creativity.

The time you spend together does not have to always be serious. Laughter is good medicine for all of you, so try to watch funny movies or tell funny jokes and stories. If you are comfortable with it, use humor when talking about treatment or tests. For example, I had a friend who had a bucket she carried around when she was queasy. The kids decorated the bucket and named it. Whenever my friend had to go out, the kids would remind her to bring "Pukey Pooky." Another friend would let her kids try on her wigs and hats and prance around the house acting like movie stars. Whatever creative ideas you come up with, allow you and your family to share happy moments.

If you are hospitalized, and they do not allow children to visit, make phone calls, listen to tape-recorded messages you make for each other, and/or share pictures, photographs, or presents. If children can visit you, they may be interested in all the "mechanics" of a hospital. Explain how the bed and call button work, eat meals together, let them play with and draw pictures on medical gloves blown into balloons.

Prepare for the homecoming by having them make "welcome home" signs, cleaning the house, making the parent's room ready, etc. When the parent is home, even a small child can be involved in bringing meals, or the paper or books to read. Do as much as you can yourself so children don't begin to resent running your errands. Allow for enough free time when they can do their thing.

You can make a difference by how you choose to respond to the fact of your cancer. The "positives" for your family are important ones. You may be spending more time with your children and feel closer to them. Sharing feelings can really strengthen the bond between parents and children. Children can grow in their ability to face other tough experiences in life. They can grow in independence and self confidence. They may become more responsible. They may become more sensitive to needs of others and grow in their ability to know and love another person. Cancer can challenge your family to respond creatively. You can take pride in their ability to deal with problems and find new solutions. Your whole family may discover a storehouse of love and strength within that will enhance the rest of your life together.

If Your Child is the One Who Has Cancer

Children who are not told about their illness often depend on their imagination and fears to explain their symptoms. Many children with cancer believe their illness is punishment for something they have done and as a result, they may feel anxiety and guilt. Health professionals generally agree that telling children the truth about their illness decreases stress and guilt. Knowing the truth also increases a child's cooperation with treatment. In addition, talking about cancer often helps bring the family closer together and makes dealing with illness a little easier for everyone.

They may have similar or different fears and concerns. Children wonder why they have cancer. They may feel strongly that something they did caused their cancer. Children need to be reassured that nothing they did, or didn't do, caused their illness. Children also need to know that their illness is not contagious and they did not "catch" cancer from someone else.

Often, children know about family members or friends who have died of cancer. As a result, many children are afraid to ask if they will get well because they fear the answer will be "no." You should tell your child that cancer is a serious illness but that treatment will help to get rid of the cancer.

When children are first diagnosed with cancer, many new and frightening things happen to them. While at the doctor's office, clinic, or the hospital, they may see other children with cancer who are not feeling well, are bald, or have had amputations. A child may be too afraid to ask questions and may develop unrealistic fears about what will happen. For this reason, children should be told in advance about their treatment and possible side effects. They should know what will be done to help if side effects happen. Children also should know that there are many types of cancer and that what happens to another child will not necessarily happen to them, even if they have the same type of cancer or the same type of treatment.

Children should know about their treatment schedule. They also should be told about any changes in their schedule or the type of treatment they receive. Having your child keep a calendar that shows the days for doctors' visits, treatments, or special tests will help prepare for these visits.

Most of us link taking medicine to feeling sick. It's confusing to children to take medicines when they feel well. Children could be told that although they are feeling well and have no signs of illness, the "bad-guy cells" are hiding. They must take the medicine for a while longer to help find the bad guys and stop them from coming back.

Children with cancer are concerned about how their friends and schoolmates will react. This is especially true when they have missed a lot of school or return with obvious physical changes such as weight loss, weight gain, or hair loss. Encourage your child to keep in touch with close friends and classmates. Friends often want to know what happens when a child is away from school. Encourage your child to talk honestly about the illness and the kind of treatment being given. Suggest that your child reassure friends that they cannot "catch" cancer from anyone. You or one of the teachers at school also may be able to talk to other students.

Try to help your child know that not all people, including some adults, know about cancer. People who don't understand cancer often act differently or may give your child incorrect information. Such talks with others may cause your child to have doubts and fears despite all your reassurance. Ask your child about conversations with others so that you can correct any misunderstandings. You may want to ask your child's doctor, nurse, or social worker about a school conference, classroom presentations, or a school assembly that includes a question and answer session to help other students better understand cancer and what is happening to your child. Your child's teachers or the school counselor can help.

Most likely, your child will need some restrictions at different times during treatment. Tell your child why the doctors or nurses think it's best to restrict certain activities and how long this will last. Help your child substitute one kind of activity for another. For example, you could suggest that friends come over to paint, have a snack, or play video games if the doctor feels that your child should not ride a bike because the chance of injury is high.

Like adults, children with cancer feel uncertain, anxious, and afraid at times. However, unlike many adults, children often are not able to talk about their fears. Instead, they may express their feelings by being rowdy, hyperactive, or bossy, or by being quieter than usual. As a parent, you know how your child usually behaves, so you will probably be the first to notice any differences. Play is a way for a child to express and reduce fears and anxieties, and you should encourage it. Drawing pictures and playing with puppets, dolls, and even medical supplies are ways children may show that they don't know what is happening or that they need more reassurance and love.

Some children find it hard to express their feelings. These children may have nightmares, changed eating habits, or behavior problems. They also may not do as well in school. Some children restart behaviors that they had outgrown, such as bed-wetting or thumb-sucking. Remember that through the years, you as a parent already have developed a "sixth sense" about your child. You will know when things don't seem right anymore. Also, remember that your child's doctor, nurse, social worker, teachers, and school counselor have had experience with situations like yours and will help. Here are ideas for reassuring your child during cancer diagnosis and treatment:

1. Remind your child that the cancer is not caused by anything he/she did. Neither the illness nor the treatment is a punishment for bad behavior.

2. Be honest explaining what has happened now and what to expect in the future. Let him/her know about any changes in treatment.

3. Nobody, not even your child, expect you to know everything. Don't be afraid to say that you don't know if there are questions that you cannot answer. Say that you'll try to find the answers.

4. Don't be afraid to ask him/her questions. Asking what he/she is thinking and feeling won't cause new fears. It will give him/her an opportunity to tell you the fears he/she already has.

5. Explain that it is okay to feel and show emotions.

6. Set limits. He/she may protest the rules you've set, but if you stick to them, your child will feel secure. If you don't, he/she will suspect that things are worse than they really are.

7. Let your child have some control if possible. Ask for opinions and suggestions. This allows him/her to feel like he/she is helping.

8. Encourage activities like drawing, playing with medical supplies or puppets, and role-playing. They help your child figure out and express feelings. Therapeutic play with a social worker or psychologist also can help young children better understand and adjust to their illness.

9. Encourage him/her to talk about his/her feelings. Frequent family talks can help reduce anxiety. Talking helps the whole family cope with this illness together.

10. Recognize that children, like adults, have good days and bad days.

11. Remember that the health care team is there to answer questions and give support to you and your family.

12. Children, especially those younger than age five, worry about being separated from their parents. Reassure him/her that although you have to leave, you love him/her and will return when you can.

13. Help your child keep in touch with friends, family members, and schoolmates while away from school. This helps him/her feel less isolated and normal even if his/her life is different at times.

14. Encourage your child to do homework and to go back to school when possible. If your child is unable to attend school, even for a short amount of time, you could request a tutor or a teacher to come to your home. This will send a positive message that he/she does have a future.

15. Despite all that is going on, your child is the same person as before, with the same needs as any other growing child. Giving him/her special attention is nice if he/she know that the rules are being bent for a good reason.

16. Take some time each day to love and enjoy each other as much as you can.

A Spouse/Significant Other

Talking with your spouse or significant other is hard for some people and easy for others. Your partner may be your best friend or just someone who takes up space in the house. You are the best person to decide how much you want to share with him/her, but keep in mind, be honest with what information and feelings you do choose to share.

Different fears or concerns develop with a spouse or significant other than with children. You may feel that you need to act strong for him/her, or the reverse, they may feel they need to show strength for you. This may inhibit communication if either of you is not true to your feelings.

Not being able to do certain things around the house may cause resentment, anger, inconvenience, or frustration. On the other hand, many feel that they are happy to help you and have a way to show you how much they care and love you. It is a great gift to be able to repay someone who has given of themselves. It also gives your significant other noticeable things to do to feel like they are participating and sharing your cancer experience. Feeling helpless and useless creates feelings of guilt, anger, and detachment in a caregiver who is not able to show support.

You may need to be as independent as possible to show yourself and other that the cancer has not changed your life much. You may want to keep the household and your career as normal as possible. This is okay if it is what you really want. The problems happen when you honestly can't or don't want to handle the responsibility, and you do tasks anyway. You may be the one who has resentment, anger, or frustration. Just be honest with yourself. Think about what you want and need, then follow your instincts. After all, you deserve to be pampered and treated specially.

As for intimacy and lovemaking, see chapter 5 side effects on sexual/reproduction. Alterations in your love life can itself create a distance between you and your partner. It can also be a way of bringing you closer together if you are willing to work through the difficulties.

Friends/Coworkers

Many people do not understand cancer, and they may withdraw from you because they're afraid of your illness or worried that they will upset you by saying "the wrong thing." You can help relieve these fears by being open in talking with others about your illness and your feelings. If you approach them first, you can correct mistaken ideas about cancer and let people know that they don't have to worry about what to say to you. Once people know they can talk with you honestly, they may be more willing and able to open up and give their support.

Sometimes all that they need is time to adjust. Talking about cancer gets people to think about their own vulnerability to illness. Like the saying goes, things don't seem real until it hits close to home. Some people choose not to deal with difficult topics such as cancer to protect themselves from confusing or frightful feelings. That is okay. We all deal with things in our own way.

When you return to work for the first time after being diagnosed, it is a good idea to think about what you want to tell people. You may not want anyone to know you have cancer, you may want to tell them but keep details private, or you may want to share your whole experience. There is no right answer. It depends on your relationship with your coworkers.

You are legally protected to withhold your medical history from your employer. Even the people in charge of your health insurance are not able to get details about your illness unless you sign a release form. Your medical history is private information that is confidential, but if you choose to reveal it, you should not be treated differently. See chapter 6 for information on discrimination.

Often, if you choose to tell your boss or coworkers, they will be more supportive and understanding. They may be willing to cover for you when you are out, and I have even seen situations where everyone in the office gives up their sick time to the person undergoing treatment so you can get paid while you are out.

Recurrence

Recurrence means that a disease has reappeared. When cancer recurs, it means that the illness thought to be cured or inactive (in remission) has become active again. You may or may not have symptoms, but the blood work or X-rays show cancer growth. Cancer may return after several months, a few years, or many years.

Recurrent cancer starts from cells that the original therapy did not kill. Your previous treatment was meant to destroy the original cancer and the cells that may have broken away from it. However, a few cancer cells may have survived and grown into large enough tumors to be detected. The cancer that recurs is the same type as the original cancer, no matter where it is found. For example, if colon cancer recurs in the liver, it is not liver cancer; it is colon cancer that has spread to the liver. Not every cancer cell that breaks away from a tumor can grow elsewhere. Most are stopped by your immune system or destroyed by treatment.

Cancers are different in where and how they show up again. Recurrent cancers are categorized by location: local, regional, or metastatic. Local recurrence means that the cancer has come back in the same place as the original cancer. The term "local" also means that there is no sign of cancer in nearby lymph nodes or other tissues. For instance, a woman who has had a mastectomy could later have a local recurrence of breast cancer in or around the area of the surgery. A regional recurrence involves growth of a new tumor in lymph nodes or tissues near the original site but with no evidence of cancer at distant places in the body. A man who has had a melanoma removed from his arm, for instance, might have a regional recurrence in the lymph nodes under his arm. In metastatic recurrence, cancer has spread to organs or other tissues far from the original site. For example, a man with prostate cancer could have metastasis to his bones.

Similar reactions and feelings experienced during initial diagnosis resurface with recurrence. People have told me that not a day goes by, that they are not worried that the cancer may return. If it does return, it feels like the weight of the world is on your shoulders. You may feel that you can't go through treatment again or that your strength has been used up. Feeling discouraged is normal, but don't let it stop you from fighting. You may have a different treatment this time with totally different side effects. Remember that you did get through your first treatment, and those same skills and people that helped you through the first time will be there for you now.

Life After Treatment

People experience a let down when treatment is completed and visits to the doctor become fewer and far between. You may feel that if you are not actively doing something to keep the cancer in check, it may come back. This adjustment period can last months to years.

It is hard when during diagnosis and treatment your calendar was filled with appointments and people were there constantly, then suddenly, you have lots of free time and phone calls and visits taper. It is similar to post-partum depression or after the holidays syndrome. It helps to plan activities to keep you busy or get you mind active. Many people reward themselves and celebrate finishing treatment by planning trips or other special things.

Some people have permanent side effects from treatment such as scars or development of other medical conditions. You will need to find a way to alter your lifestyle to adjust to these things. Feeling tired and slowed down is normal for a few months after treatment ends. Your body has gone through an intensive workout and needs to heal and recover. Many people do return to a normal satisfying lifestyle after a period of adjustment and rest.