Coming home after transplant 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 to you while you were in the hospital is gone. Now it's up to your caregiver to monitor your health until you are able to do so on your own. That can be stressful for both you and your caregiver.
It is also a time of great uncertainty. Although you have completed your transplant, there is no way of knowing for certain how long the transplant will prolong your life or whether it cured you. Fear of relapse is common, and 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 while you recover. It can be frustrating to be dependent on others to take care of your needs.
You may look different, particularly if you are taking medications to control graft-versus-host disease, and this may make you self-conscious or sad. If you are taking steroids to control chronic graft-versus-host disease, you may experience significant mood swings while you are on the medication. This roller coaster of emotions can be hard for both you and your family.
Some transplant survivors experience symptoms similar to post-traumatic stress for a time after transplant. Certain sights, smells or sounds may trigger unpleasant memories of your treatment. Caregivers can experience post-traumatic stress, too. It may be many months before you can enjoy a day without thinking about your disease or transplant.
For most survivors, the emotional distress experienced after transplant lessens over time. It helps to focus on the things over which you have control, rather than worrying about things you can't control.
It's important not to ignore or downplay your feelings. Finding an outlet to express your feelings can decrease your stress and help you move forward in a healthy manner.
Finding Emotional Support
If you need help coping with your emotions after transplant, confiding in a loved one or religious counselor may provide some relief. Others find talking with a professional counselor helps them understand and manage their concerns.
Your transplant center may offer counseling services, or you may find a counselor at a local hospital, cancer center or though the American Psychosocial Oncology Society.
Talking one-on-one with another transplant survivor or caregiver can also help. BMT InfoNet's Caring Connections Program can put you in touch with others who have been through transplant and have experienced the same emotional highs and lows you now face.
Support groups are often a good way to get support and to learn how others are coping with their recovery. Most support groups are organized around a particular disease, so contacting organizations such as the International Myeloma Foundation or The Leukemia & Lymphoma Society can help you find support groups that meet in your area.
You can also search for discussion groups on Facebook, SmartPatients and other online forums.
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 cope. This is not a defeat; it is a temporary assist to your recovery.
Some patients have used techniques such as 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.