Learning that you need a blood stem cell transplant is emotionally overwhelming for you and your family.
It is common for patients to feel anxious, scared or depressed. It helps to remember that a transplant is not just a difficult medical procedure, but also a source of hope.
If you're feeling anxious or depressed, your doctor may prescribe a temporary course of medication to help you deal with the stress. You will be taken off the medication as your stress level decreases
Some patients seek the help of a mental health counselor, such as a psychiatrist, psychologist or social worker, during this difficult time. Having a professional counselor can often ease the emotional burden.
The American Psychosocial Oncology Society (APOS) is an excellent resource for those who are seeking more information on the psychological, social, behavioral, and spiritual aspects of cancer. The site has a 24-hour helpline where patients and caregivers can obtain referrals for local counseling services throughout the United States.
Cancer Care also offers counseling for cancer patients and their loved ones. You can access a counselor by phoning 1-800-813-4673.
It may help you to talk with someone who has been through a transplant so you can get some insight on what to expect. BMT InfoNet's Caring Connections program can put you in touch with another person who has been through a transplant, or a person who has been the caregiver or donor for a transplant patient. Your transplant social worker may also be able to connect you with someone who has been through transplant
Some disease-based organizations, like the Leukemia & Lymphoma Society, the Lymphoma Research Foundation and the International Myeloma Foundation offer information about local support groups or have online discussion groups that may be helpful.
Focusing On Family Members
Family members will be anxious and concerned as well. If you have cancer, you may be able to take advantage of family services offered at a local cancer support organization, such as the Cancer Support Community® (formerly Gilda's Club and the Wellness Community). Ask your transplant social worker for referrals to programs like these in your area.
If you will be the caregiver, it can be helpful to set up a support system for yourself before the transplant begins. In this way, there will be an outlet for you to discuss your fears and frustrations with someone other than the patient. Visit the Caring for a Transplant Patient section of our web site for more information on coping with the challenges of being a caregiver.
...and Children, Too
If you have children, it is important to discuss your diagnosis and treatment with them in age-appropriate language. Children can be remarkably intuitive; it is likely that, if you do not engage them on the issue, they will sense that something is wrong leading to more fear on their part.
Children sometimes do not fully understand cause and effect. You should make clear to them that they did not cause your illness nor can they catch it from you.
The American Cancer Society has excellent information on its web site about how to talk to children about your diagnosis. CancerCare has some tips on talking with your child about your diagnosis, as well as counselors who can provide advice. Call them toll free at 1800-813-HOPE (4673).
If your transplant center allows children to visit the transplant unit, it may help to show your child where you will be staying while undergoing treatment. Children have vivid imaginations and the pictures they conjure up in their mind may be more frightening than reality. Letting them see where you will receive your treatment can help dispel some of their fear.
Some transplant programs provide counseling services for the entire family, including the children. Ask your transplant social worker what family services are available.
Don't forget to brief other adults who play a significant role in your child's life about your disease and treatment. If they understand the situation, they will be better able to help your child cope with the stress.
Sometimes children are reluctant to discuss their worries and feelings with their parents. Teens, especially, may not want to burden their parents, or they may find find greater comfort in discussing their concerns with their peers.
Although family discussions are very helpful, it is important to allow children to talk about their feelings with whomever makes them feel most comfortable.
You may want to engage the services of a therapist if your child is showing signs of stress such as poor performance in school, angry outbursts, withdrawl, or behavior that is immature for his or her age. Ask your transplant social worker for a referral.
If your child needs a transplant, please visit the Pediatric Transplants section of our site for more advice and help.
Other Resources to Help Your Children Cope
BMT InfoNet offers a colorful picture book entitled Mira's Month that was written by a stem cell transplant patient for her four-year-old daughter. The book is appropriate for use with young children whose parent will undergo a transplant.
Someone I Love is Sick is a book to use when talking with children ages 2-6 years old about a parent or grandparent who has cancer. The book comes with a packet of pages that you can use to create a customized book for your child.
KidsKonnected offers an abundance of advice, ideas and activities to help children, teens and parents deal with a parent's diagnosis of cancer.
One Day at a Time
Although it sounds trite, taking things a day at a time or even an hour at a time helps. Focusing on the things over which you have some control, rather than allowing yourself to worry about all the details that are beyond your control is a good strategy for managing the stress of a transplant. Above all, don’t be shy about asking for help in dealing with your emotions when you need it.
Life after transplant can be special. Survivors no longer take the future for granted. There is a new lease on life. Many patients focus on enjoying each day of life and try to live that day more fully.
Our books on transplantation have more information about the emotional challenges families face when a loved one needs a blood stem cell transplant.