Learning that you or someone you love has cancer can make you feel that your world is being turned upside down. Everything in life may suddenly feel out of control. This is because you did not choose cancer. Your first thoughts may be, "How could this have happened to me?" and "How will I get through this?" A cancer diagnosis is shocking and overwhelming. But the prognosis of certain cancers continues to improve and the chance of being cured continues to increase. No matter what you may be told about the prognosis, there is always something that can be done. You must try to remain hopeful and in control of the decisions that will need to be made.
Some practical things that you can do to help during this time include the following:
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. You may be too numb or too upset at the hospital or healthcare provider's office and realize later that you forgot everything the provider had said. So it may also help to bring a family member or a trusted friend along with you.
Keep a journal of your feelings and the impact on your life. As time goes on, you may be able to look back and see that things are improving.
Learn about your health insurance benefits so that you understand what expenses will be covered.
Continue doing at least some of your usual, daily activities. You will still have things like grocery shopping, laundry, and going through the mail to do on a daily or weekly basis. Having some of these regular activities will help you cope and feel more in control.
Take care of your family relationships. Your main focus is on the cancer. But it's important to also spend time as you normally would 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.
Use support groups in your area, as well as national support groups and their resources. 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?" Consider 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 contributing.
Avoid 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 do not know how to respond. Their words may hurt you or disappoint you, even though that was not their intention. You must realize that people will not know what your needs are unless you tell them. Sometimes it is 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. But instead they may be making your situation feel even more overwhelming. It is important for you to avoid these discussions if they are not helping you. It is healthy to be "selfish" and 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 experience your illness. You could help others and their families by sharing your experiences in a support group or other setting.
The following is a list of suggestions for patients, parents, and siblings that may help each person cope with his or her feelings, depending on the age of the child with cancer and the age of the siblings:
Infants and very young children (birth to 3 years old):
Distracting with toys or colorful objects
Creating a cheerful hospital room
Having siblings visit
Keeping their regular schedule for sleeping and feeding
Arranging visits to ill brother or sister
Keeping them near parents, if possible
Using relatives, friends, or a daycare center to maintain their usual 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):
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
Maintaining a normal daily schedule for feeding and sleeping
Giving simple explanation for parent's distress, sadness, or crying
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 usual routines
Having one parent see child daily, if possible
Remaining alert to changes in behavior
Reassuring child about parent's distress or sadness
School-aged children (6 to 12 years old):
Offering repeated reassurance to your child that he or she is not 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
Providing explanations your child can understand about diagnosis and treatment plan; 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
Teaching about normal feelings of fear, anxiety, sadness, or anger
Encouraging sibling to communicate feelings; suggesting sibling write, telephone, send drawings or recorded message to patient
Providing understandable information about diagnosis and treatment
Answering all questions honestly, including, "Will he or she die?"
Listening for unasked questions, especially about personal health
Offering repeated reassurance that sibling is not responsible for causing the cancer
Informing teachers and coaches of family situation
Arranging for school and other activities to continue 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 and older):
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 are not 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
Facilitating contact with other teen patients, if desired
Involving 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 usual 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.