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Coping with Advanced Cancer
    Posted: 09/30/2005



About This Booklet






Making Choices About Care






Talking With Your Health Care Team






Getting Help for Your Symptoms






Coping With Your Feelings






Advance Planning






Talking With the Special People






Looking for Meaning






Closing Thoughts






Resources






Personal Affairs Worksheet






For more information



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Talking With the Special People

Spouses and Partners
Small Children
Teenagers
Adult Children

"I went to the Grand Canyon with my brother. I started crying and couldn't stop. I realized he started crying, too, because he couldn't handle the fact that he may not have me around any more. So there we were, just crying in the car. He was like, 'I don't want to lose you. I don't want you to die.'" - Rhonda

Your loved ones may need time to adjust to the new stage of your illness. They need to come to terms with their own feelings. These may include confusion, shock, helplessness, or anger. Let them know that they can offer comfort just by being themselves and by being at ease with you. Ask them to listen when you need it, rather than try to solve every problem.

Knowing that people cope with bad news in their own way will help you and your loved ones deal with their emotions. Many people are reassured and comforted by sharing feelings and taking the time to say what they need to.

Bear in mind that not everyone can handle the thought that they might lose you. Or some people may not know what to say or do for you. As a result, relationships may change. This isn't because of you, but because others have trouble coping with their own painful feelings.

If you can, remind them that you are still the same person you always were. Let them know if it's all right to ask questions or tell you how they feel. Sometimes just reminding them to be there for you is enough. But it's also okay if you don't feel comfortable talking about it either. Sometimes certain topics are hard to talk about with others. If this is the case, you may want to talk by yourself with a member of your medical team or a trained counselor. You also may want to attend a support group where people meet to share common concerns.

Some families have trouble expressing their needs to each other. Other families simply do not get along with each other. If you don't feel comfortable talking with family members, ask a member of your health care team to help. You could also ask a social worker or other professional to hold a family meeting. This may help family members feel safer to express their feelings openly. It can also be a time for you and your family to meet with your team to problem-solve and set goals.

It can be very hard to talk about these things. But studies show that cancer care goes more smoothly when everyone stays open and talks about the issues.

Often, talking with the people closest to you is harder than talking with anyone else. Here's some advice on talking with loved ones during tough times.

Spouses and Partners

"My wife has been my biggest source of strength, plain and simple. That's how I cope with all of it, because we talk and sometimes we literally are talking until 4 or 5 in the morning. We are just sitting here and just talking and reminiscing, and asking questions and answering them. Being there for one another." - Steve

Some relationships grow stronger during cancer treatment, but others are weakened. It's very common for patients and their partners to feel more stress than usual as a couple. There is often stress about:

  • Knowing how to give and get support
  • Coping with new feelings that have come up
  • Figuring out how to communicate
  • Having money problems
  • Making decisions
  • Changing roles
  • Having changes in social life
  • Coping with changes in daily routines

Some people feel more comfortable talking about serious issues than others. Only you and your loved one know how you communicate. Some things to think about are:

  • Talk things over. This may be hard for you or your partner. If so, ask a counselor or social worker to talk to both of you together.
  • Be realistic about demands. Your spouse or partner may feel guilty about your illness. They may feel guilty about any time spent away from you. They also may be under stress due to changing family roles.
  • Spend some time apart. Your partner needs time to address his or her own needs. If these needs are neglected, your loved one may have less energy and support to give. Remember, you didn't spend 24 hours a day together before you got sick.
  • Know that it's normal for body changes and emotional concerns to affect your sex life. Talking openly and honestly is key. But if you can't talk about these issues, you might want to talk with a professional. Don't be afraid to seek help or advice if you need it.

Small Children

"We can't always protect the people we love. But we can prepare them." - Unknown

Keeping your children's and grandchildren's trust is still very important at this time. Children can sense when things are wrong. It's best to be as open as you can about your cancer. They may worry that they did something to cause the cancer. They may be afraid that no one will take care of them. They may also feel that you are not spending as much time with them as you used to. Although you can't protect them from what they may feel, you can prepare them.

Some children become very clingy. Others get into trouble in school or at home. Let the teacher or guidance counselor know what is going on. And with your kids, it helps to keep the lines of communication open. Try to:

  • Be honest. Tell them you are sick and that the doctors are working to help you feel comfortable.
  • Let them know that nothing they did or said caused the cancer. And make sure they know that they can't catch it from others.
  • Tell them you love them.
  • Tell them it's okay to be upset, angry, or scared. Encourage them to talk.
  • Be clear and simple, since children do not have the focus of adults. Use words they can understand.
  • Let them know that they will be taken care of and loved.
  • Let them know that it's okay to ask questions. Tell them you will answer them as honestly as you can. In fact, children who aren't told the truth about an illness can become even more scared. They often use their imagination and fears to explain the changes around them.

Teenagers

"My father and I are so much closer. It's a totally different family than we were before I was diagnosed. We've learned how to talk about how we feel, how to talk to each other about what's going on and what we're afraid of." - Jake

Many of the things listed above also apply to teenagers. They need to hear the truth about an illness. This helps keep them from feeling guilt and stress. But be aware that they may try to avoid the subject. They may become angry, act out, or get into trouble as a way of coping. Others simply withdraw. Try to:

  • Give teenagers the space they need. This is especially important if you rely on them more than before to help with family needs.
  • Give them time to deal with their feelings, alone or with friends.
  • Let your teenager know that they should still go to school and take part in sports and other fun activities.

If you have trouble explaining your illness, you might want to ask for help. Try asking a close friend, relative, or health care provider for advice. You could also go to a trusted coach, teacher, or youth minister. Your social worker or doctor can help you find a good counselor.

Adult Children

Your relationship with your adult children may change now that you have advanced cancer. You may have to rely on them more for different needs. It may be hard for you to ask for support. After all, you may be used to giving support rather than getting it. Or it may be hard for other reasons; perhaps your relationship with them has been distant.

Adult children have their concerns, too. They may become fearful of their own mortality. They may feel guilty because they feel that they can't meet the many demands on their lives as parents, children, and employees.

As your illness progresses, it helps to:

  • Share decision-making with your children.
  • Involve them in issues that are important to you. These may include treatment choices, plans for the future, or types of activities you want to continue.

Reaching out to your children and openly sharing your feelings, goals, and wishes may help them cope with your disease. It may also help lessen fears and conflict between siblings when other important decisions need to be made.

"It's a roller coaster ride, so we just ride the roller coaster. I've got the whole family prepared, and that's what you have to do when you have cancer. Things are going well and then really bad." - Delia

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