Coping with the diagnosis

Some practical things that you can do to help during this time include:

• Learn as much as possible about your disease. Arm yourself with information to lessen your frustration and get the best results. Ask any questions you have about your disease. Keep a notebook or folder with all of your medical records and information about your diagnosis. It may also help to bring a family member or a trusted friend along with you to appointments. They can help you remember information and ask questions.

• Keep a journal of your feelings and the impact on your life. This is a safe place for you to process things. And as time goes on, you may want to look back.

• Learn about your health insurance benefits. This will help you understand what expenses will be covered.

• Keep doing at least some of your normal, daily activities. You will still have things, such as grocery shopping, laundry, and going through the mail, or hobbies, to do on a daily or weekly basis. Having some of these regular activities will help you cope and feel more in control. But ask for help from others when needed. Make time for things that you still enjoy doing.

• Take care of your family relationships. It's important to spend time with your family, friends, and spouse. It's healthy to have fun together. Relieving stress and strengthening family relationships will allow you to cope better with your disease.

• Get support. Use support groups in your area, as well as national support groups and their resources. Support groups are also available online. Find out about supportive services available at the hospital, such as social workers or meeting with other families. Don’t be afraid to ask for help. Each family's need for support is different. Friends and family members will often ask, "Is there anything I can do to help?" Think about saying "yes" to this question. Ask them to pick up your groceries, help with the laundry or housecleaning, pick up your children from their after-school activities, or make dinner. Giving a friend or family member something to do will help them feel like they are helping.

• Stay out of emotionally draining situations. Sometimes, well-meaning friends and family members will say the worst possible thing at the time of a cancer diagnosis. They truly want to help or be supportive, but sometimes don't know how to respond. Their words may hurt you or disappoint you, even though that wasn't their intention. People won't know what your needs are unless you tell them. Sometimes it's simply easier to be direct and tell someone, "I would just like you to sit quietly with me and keep me company," or "I need to spend some time alone right now." Don't be afraid to express your needs during this time. Other people may want to talk to you about their experiences with cancer. They may believe that they are being helpful. Instead they may be making your situation feel even more overwhelming. It's important for you to avoid these discussions if they aren't helping you. It's healthy to ask for what you need, as well as what you don't need, during this time.

• Share what you have learned. You will have important knowledge and skills that you learn as you go through your illness. You could help others and their families by sharing your experiences in a support group or other setting.

Helping children and teens cope with cancer

Below is a list of things parents or caregivers can do for a child with cancer or their sibling. These may help a person cope with their feelings, depending on the age of the child with cancer and the age of the siblings:

Babies and very young children (birth to 3 years old)

• For young children with cancer:

  • Holding

  • Touching

  • Rocking

  • Soft music

  • Hugging

  • Cuddling

  • Distracting with toys or colorful objects

  • Creating a cheerful hospital room

  • Having siblings visit

  • Keeping their regular schedule for sleeping and feeding

• For siblings:

  • Providing cuddling

  • Hugging often

  • Arranging visits to ill brother or sister

  • Keeping them near parents, if possible

  • Using relatives, friends, or a daycare center to keep their normal daily routine

  • Having one parent spend time with them daily

  • Recording lullabies, stories, and messages when a parent can't be at home

  • Offering frequent reassurance to toddlers that mommy or daddy will soon be back

Toddlers, preschool (3 to 5 years old)

• For children with cancer:

  • Giving very simple and repeated explanations for what is happening

  • Providing comfort when child is upset or fearful

  • Checking on child's understanding of what is happening

  • Offering choices when possible

  • Teaching acceptable expression of angry feelings

  • Keeping a normal daily schedule for feeding and sleeping

  • Giving simple explanation for parent's distress, sadness, or crying

• For siblings:

  • Giving a simple explanation that brother or sister is sick and that people are helping

  • Offering comfort and reassurance about parent's absence

  • Arranging for reliable daily care and maintenance of normal routines

  • Having one parent see child daily, if possible

  • Staying alert to changes in behavior

  • Reassuring child about parent's distress or sadness

School-aged children (6 to 12 years old)

• For children with cancer:

  • Offering repeated reassurance to your child that they aren't responsible for the cancer

  • Teaching that sadness, anger, and guilt are normal feelings

  • Allowing your child to keep feelings private, if that is preferred

  • Suggesting personal recording of thoughts and feelings through writing or drawing

  • Arranging for physical activity, when possible

  • Giving explanations your child can understand about diagnosis and treatment plan. And including your child, when appropriate, in discussions about diagnosis and treatment.

  • Answering all questions honestly and in understandable language, including, "Am I going to die?" (Talk with cancer care team about how to answer.)

  • Listening for unasked questions

  • Facilitating communication with siblings, friends, and classmates, if desired

  • Arranging contact with other patients to see how they have handled the diagnosis

• For siblings:

  • Teaching about normal feelings of fear, anxiety, sadness, or anger

  • Encouraging sibling to communicate feelings. Suggesting that sibling write, phone, or send drawings or recorded message to patient.

  • Giving understandable information about diagnosis and treatment

  • Answering all questions honestly, including, "Will they die?"

  • Listening for unasked questions, especially about personal health

  • Offering repeated reassurance that sibling isn't responsible for causing the cancer

  • Informing teachers and coaches of family situation

  • Arranging for school and other activities to stay on schedule

  • Supporting a sibling having fun, despite brother or sister's illness

  • Planning for daily availability of one parent

  • Explaining that parents' distress, sadness, or crying is OK

Teens (13 to 18 years old)

• For teens with cancer:

  • Giving information on normal emotional reactions to a cancer diagnosis

  • Encouraging teen to express their feelings to someone: parents, family, or friends

  • Tolerating any reluctance to communicate thoughts and feelings

  • Encouraging journal keeping

  • Providing repeated reassurance that they aren't responsible for causing the cancer

  • Being included in all discussions with parents about diagnosis and treatment planning

  • Being encouraged to ask questions (parents should listen for unasked questions)

  • Addressing concerns about "Why me?"

  • Permitting private time for interaction with team professionals

  • Offering assurance that parents and family members will be able to manage crisis

  • Encouraging sharing news of diagnosis with peers, friends, and classmates

  • Arranging for visits of siblings and friends

  • Helping with contacting other teen patients, if desired

• For siblings:

  • Including teen in events around diagnosis

  • Reassuring them that cancer is not contagious

  • Offering assurance that nothing they did or said caused the cancer

  • Giving detailed information on diagnosis and treatment plan

  • Answering all questions honestly

  • Arranging access to treatment team, if desired

  • Discussing spiritual issues related to diagnosis

  • Encouraging expression of feelings

  • Arranging for management of daily life at home

  • Providing assurance that family will be able to handle crisis

  • Telling teachers and coaches about family situation

  • Encouraging normal involvement in school and other activities

  • Asking relative or friend to take a special interest in each teen sibling

The different members of the cancer team can help you and your family, as needed. Don't be afraid to ask for help.