Caring for Cancer patients requires a lot of dedication, effort and hard work. It can take a toll on you. Find out ways in which you can deal with this enormous responsibility.
When someone in your family has cancer, it may mean many things to you. Other people who have been through it say it can be a lot of things: confusing, scary, lonely, and much more. You may find that you have feelings that are hard to understand and sometimes hard to share.
Remember, feelings aren't "good" or "bad." They are just feelings and are normal and shared by many others. And even if you try to wish them away or ignore them, or if you feel guilty or ashamed of them, they'll still be there.
A good way to handle feelings is to admit you have them and talk about them. Talk with your parents, other adults, or your friends. Or you can talk with others who have had a family member with cancer. You'll be surprised how much better you feel once you have talked about your feelings.
People to Help You, Besides Your Parents
For Support and Sharing Feelings:
• Grandparents, aunts, uncles
• Teachers, guidance counselors
• Ministers, rabbis, priests
• Coaches, youth or scout leaders
• Special adult friends
• Older brother or sister
• Friends your own age
For Support and Information About Cancer:
• Someone at the hospital-a doctor, nurse, social worker, or other person treating your family member
• Family doctor
• School nurse
It may be hard to talk about Cancer
Sometimes it's not easy to talk about what you feel or about problems. Not only is it hard to say what you feel, but other people may not be ready or able to listen or to be helpful. Some of your questions may upset your parents because they don't know how to answer or because your worries remind them of their own. It's possible that your parents may not be ready to talk when you are. They may need more time to sort things out in their own minds before they can talk with you. Some parents, no matter how much they love their children, don't know how to talk about upsetting things with them. If your parents aren't able to talk with you about your feelings, they may be able to help you find someone you can talk to, like someone at the hospital, a relative or friend, or a teacher or school counselor.
Here is what some others who have had a parent or brother or sister with cancer have said about what they felt:
"I really didn't understand much at first. Mostly I was afraid that she might die, because my sister and I are pretty close. I was really scared, and I also thought it might be catching or something."-Laura, age 13
The girl who said this had a sister with cancer, but it can be just as scary when a parent has cancer. When someone is first diagnosed with cancer, it may seem as though your whole world has fallen apart. You may not know much about it, so you may remember what you've heard about cancer before. Being afraid someone might die from cancer is normal, especially if the only people with cancer that you have known have died. And being afraid that you or another person in the family might catch it is normal, too. Why? Because there are so many things you can catch from someone else such as a cold or the flu. It's easy to think cancer may be the same, but doctors and other scientists know that you cannot catch cancer from anyone. Learning about cancer can help you. You will feel less afraid when you know more about the disease.
"One day I went to the clinic with my brother for his treatment. I saw the machine that he gets radiation from and how IVs work, and I met his doctor and the nurses. I saw lots of other kids who didn't have any more hair than he does. Now, when he goes to the clinic, I don't have to wonder what he's going through. I know what it's like. It's no fun for a little kid like him, but it's not as bad as I thought."-Matthew, age 14
Hearing about treatments and tests can be hard. Some people find it's scary just to think about the needles and blood tests and radiation treatments. Sometimes, learning about these things and talking to the person with cancer (or someone else) about what it's really like is the best way to deal with these fears. If a trip to the hospital is possible, it might help.
"I got really mad at Chrissy one day. She wouldn't let me go bike riding with her and my cousin, and I got mad and said 'I wish you were dead.' Now she has leukemia, and she could die, and I think maybe it's my fault. I was scared to tell anyone because then they'd all know what I did and be mad. But my dad heard me crying one night, and he got me to tell him why. He says it isn't my fault or anybody else's that Chrissy has cancer, and you can't make somebody get cancer just by what you say."-Katy, age 10
Until you understand what does and doesn't cause cancer, it's easy to think that anything could have done it-even words or a fall.
"I left my junk all over the floor one night instead of putting it away, and the next morning, mom fell over it. She was mad and had a lot of bruises. A little later, the doctor told her she had cancer. She's in the hospital now. Maybe if she hadn't fallen down because of me, she'd be okay."-Tom, age 11
Just as words can't cause cancer, neither can bruises or bumps or even broken bones. Never forget: It was nothing you did, said, or thought that caused the cancer.
"Sometimes, I feel mad at my brother for having cancer. I know that's not right, and he can't help it. But it has changed everything. My mom and dad don't talk about anything but him and neither does anyone else. It's just not fair."-Sharon, age 13
People who have a brother or sister or a parent with cancer can feel angry at that person for getting sick and changing their lives. This may seem wrong, and people sometimes feel guilty about getting mad. But, if having someone with cancer in your family means you can't be with your parents as much or have to stay somewhere else or give up things you like, it can be hard. Even if you understand why it's happening, you don't have to like it. Others who have been through it say it's important to remember that things won't always be this way. And when you get mad, remember that it doesn't mean you are a bad person or don't love the person with cancer. It just means you're mad.
One of the things that young people get mad about is feeling left out or neglected. Some feel that they don't get as much attention as before, and they often are right. Family members, including your parents, all have a lot on their minds, and they may have to put all their energy into helping the person with cancer. This may not leave much time for you, especially if they are going back and forth to the clinic or hospital.
Young people often feel that the brother or sister with cancer gets more attention from their parents.
"At night my parents go in and turn on my sister's light and kiss her good night, and they don't come in my room-well, sometimes mom will. She tells me, 'Don't think we are partial to her.' "-Maria,age 15
Young people may feel that their sibling with cancer gets away with a lot of things that they can't do.
You may be lucky and have a special friend and friends who treat you the same as before your family member was diagnosed with cancer. But many young people with cancer in their families have found that they've lost some of their friends. Sometimes this happens because friends may not know much about cancer and may be afraid of catching it from you. Or they may not know what to say and find it easier to stay away than to be embarrassed. Having cancer in your family may make you act a little different because you're upset or scared or embarrassed or because you want to be with your family.
"Sometimes, my friends wonder why I act strange. I wish they understood that, sometimes, I don't want to do what they're doing, I really want to be with my sick sister."-Nan, age 12
If your friends don't understand, they may think that you don't want to see them anymore. It can be a hard time for all of you.
What can you do? You may need to reach out to your friends, even if that's hard to do. Maybe everyone won't respond as you'd like, but it helps if you give them a chance. Often friends just don't know how to act and need you to tell them how you want to be treated. They also may need you to show that you still need them, even if you seem a little different because you're upset. You may want to invite them over to watch TV, play video games, or just to talk. Let them know that you still enjoy talking with them on the phone or going to the movies- just as you did before.
If this is a hard time for you, remember that it won't last forever. Old friends may become close to you again. And people who have lost friends have found that they also made new ones. There may be someone at school who has had a sick person in the family and will understand how you feel. That person could be a special new friend.
When your friends do talk to you, some of them may not say what you want to hear. Sometimes, especially in the beginning, people ask a lot of questions that are hard to answer.
"People asked me questions all the time. They'd say things like 'I heard Jean is in a coma' or 'I heard you were hysterical.' Whenever I told them the truth, they didn't believe me. And they'd ask dumb questions like 'Can Jean walk? Can she write?' They didn't know what was going on, and I didn't know how to answer them. I got sick of it."-John, age 14
One way to answer your classmates' questions is for you and your parents to talk to your teacher and see if the teacher or someone who knows about cancer and its treatment can talk to your class. Ask the doctor, nurse, or social worker about a school conference or classroom presentation. This will give your friends a chance to ask their questions and be sure they're getting the right answers-not about your family member but about cancer in general.
Other people ask questions, and they may not know that some of them are hard for you to answer or make you feel bad. If you want to answer their questions, it's a good idea to think of what people might ask and have an answer ready. People may ask you how the person with cancer is feeling or how long the person will be in the hospital. And they also may ask questions like these:
"Are you going to get cancer from your mother?"
"Why does your brother always wear that cap? Did his hair really fall out?"
"Is your dad going to die?"
"What did your sister do to get cancer?"
You may want to get help finding answers to questions like these. There may be several people to ask such as your parents, teacher, or school counselor, an adult friend, or the doctor, nurse, or social worker. And remember, you always can tell people that you don't want to talk about something or that you don't know. You don't have to answer their questions. Sometimes, though, trying to answer a few questions and talking about your feelings can help others understand what you are experiencing.
"Since my brother lost his hair and got so pale and thin, I don't want to bring my friends home anymore. I don't want them to see how different Tim looks now, and I don't think he likes to see them. Besides, it's not easy to laugh and giggle at home when someone is sick."-Caroline, age 12
Sometimes people who have a person with cancer in their family may feel embarrassed because now their family is different. It is different from what it used to be, and it is different from their friends' families. And people who ask them questions they can't answer just embarrass them more. So sometimes they want to try to leave the cancer at home and hope that none of their friends learn about it. Of course, you can't really do that because when someone you love is sick, you need people you can talk to and who understand if you're upset. If you feel a little embarrassed around people because someone in your family has cancer, remember that others have felt this way also and that this feeling often goes away once everyone has gotten used to what is happening.
Even though others feel all right about asking a lot of questions, some people with a family member who has cancer find that it embarrasses them to ask questions. Just remember: No question is a dumb question if you don't understand it.
"At first I didn't ask any questions, although I had a lot of them. I thought people would think I was really dumb, but now I know it really helps to ask."-Brad, age 14
Dealing With Side Effects
"Diane had all this hair, and some nights it would fall out and be all over her pillow when she woke up, or fall out in her comb, or when she washed her hair. It really kind of scared me to see that happen at first, but she took it pretty well." -Lois, age 16
When someone you love has side effects from cancer treatments, you too have to learn to live with these changes. It may seem a little strange at first, or scary, but other people have found that they soon got used to it. Some people outside the family may not understand, and they may hurt the feelings of the person with cancer.
"When my little brother, James, went back to school, he was still on chemo and had lost all his hair, so he wore a baseball cap. One day a kid pulled the cap off and teased him. James said everybody stared at him. Mom says we should feel sorry for that kid because he doesn't know any better. But I don't, I feel sorry for James."-Amy, age 12
It's hard to imagine why anyone would want to tease James, but it's not as important to know why someone did it as it is to know that these things may happen, and that you can't always protect your brother or sister. What you can do for people with cancer is try to understand how they feel and help them see that they still have friends. And, if you tease them from time to time, like you did before they had cancer, it's not a bad thing, as long as you don't keep it up for long or keep doing it when you see that it really hurts their feelings. Brothers and sisters all tease each other, and it's important that, even when your brother or sister has cancer, you treat each other as much like before as you can.
You may be shocked if the person who has cancer looks different after coming home.
"My dad has cancer, and he was in the hospital for a long time. When he finally got to come home, he was still really sick. I had to help him up the stairs because he was so weak. It was strange, because he had always been so big and strong, and now he was weak. It bothered me."-Richard, age 16
Even if someone tells you that your family member won't look the same, you may not be prepared for the changes. Try to find out what type of changes to expect. It may be hard for you, but it's important to remember that, even if they look different, they're still the same person.
Some young people who have a family member with cancer may change a little themselves. Sometimes they don't realize it or don't know why. But, with all the new and different experiences and feelings, it's not surprising that people change. They may have trouble at school or be unable to concentrate or to get along with other people as well as they did before.
They may start to be a little less careful or do things that are dangerous, maybe getting hurt more often.
They may worry a lot about getting sick themselves and may even get sick more often. Their school grades may fall, or they may become more involved in school than they were before and make better grades.
Any of these changes can happen because young people who are scared or worried or whose lives have changed may need more attention at home. Just as with other problems or worries, it helps to talk with people who care and understand what's happening.
If you haven't noticed that you have changed, someone else may notice and want to talk to you about it. If they do, it's because they want to help. Your parents or teachers or social workers at the hospital or clinic all may be able to help if you've changed in a way that isn't good for you or that makes you sad and uncomfortable.
Not all of the changes are bad; some may be good. Many young people who have had cancer in the family felt it has helped them grow up. Others say it also has brought their family closer together.
"My brother is in remission now. Things were pretty bad at first. Then, after a while, things sort of settled down and got back to the way they were before. I think Billy's cancer brought us all closer together. I get along better with him and my sister and even with my older brother now. I'm closer to mom and dad. And I think we all grew up a lot while he was sick."-Alice, age 15
• Don't be ashamed or afraid of the way you feel. Others in your situation have felt the same way.
• Sometimes things are better if you talk about them. Share your feelings with your parents, or another adult, or a friend you can trust.
• Learn about cancer and the way it is treated. What we first imagine about cancer is often far worse than what is really happening.
• Try to find other people your age who have a person in their family with cancer or a serious illness. You may be able to share your feelings with them.
• If you overhear someone talking and what you hear scares you, ask them to explain what they said. Don't assume that you heard everything and understood what it meant; ask about it.
• Don't forget the adults other than your parents who can help you.
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