Meeting Emotional Needs
Coming home is a wonderful occasion, but it can also be a stressful time for the entire family. The around-the-clock safety net of doctors and nurses that was available while the patient was in the hospital is gone. Now it falls to the caregiver to monitor the patient's health.
It is also a time of great uncertainty. Although you have completed your transplant, there is no way of knowing for several years whether the transplant was successful in curing you of your disease. It may take some time before you are confident enough to make long-term plans or commitments.
Family roles may change as a result of your transplant, at least for a time. If you were the person responsible for handling the day-to-day operations of the household, you will need help with those tasks, and others may handle them differently than you do. It can be frustrating to be dependent on others to take care of your needs.
You may look different, particularly while you are taking medications to control graftHealthy blood forming stem cells used to replace a patient's diseased blood forming stem cells-versus-host disease, and this may make you self-conscious and sad.
Some patients experience symptoms similar to post-traumatic stress for a time after transplant. Certain sights, smells or sounds may trigger unpleasant memories of their treatment. Caregivers can experience symptoms similar to post-traumatic stress, too. It may be many months before you can enjoy a day without thinking about the disease or transplant.
As time moves on, the most successful strategy is to focus on the day-to-day issues as they come along and manage the things you can control. Try not to focus on the things beyond your control.
Finding an outlet to express your worries and concerns outside the family is often helpful. Your transplant center may offer individual counseling or support groups. The American Psychosocial Oncology Society can help you locate a counselor in your area that is experienced in helping cancer patients cope with their emotions during recovery.
Online support groups can be helpful. BMT Support.org offers weekly live online chats for patients and caregivers. The Association of Cancer Online Resources hosts BMT-Talk - an electronic mailing list for transplant patients and their loved ones which enables people to ask questions and provide each other support around-the-clock.
Some disease-based organizations, like the Leukemia & Lymphoma Society, the Lymphoma Research Foundation and the International Myeloma Foundation have online discussion groups or information about local support groups.
BMT InfoNet offers a webcast by Dr. Karen Syrjala that discusses common emotional challenges after transplant.
If your sadness and distress become difficult to manage, or if you believe you are experiencing clinical depression, speak with your doctor. You may require a short course of medication to help you manage your stress. This is not a defeat; it is a temporary assist to your recovery.
Some patients have used techniques such journaling, creating a blog, or engaging in a social activity to help manage stress. You can't control how you feel, but you can manage those feelings so that they don't disrupt your daily life.