Autologous Transplant Guide: Coping and Recovery
Before and During Hospitalization
You have probably had other types of treatment besides stem cell transplantation since you were first diagnosed with cancer, and you probably remember very clearly the emotions you have experienced since your diagnosis – shock, disbelief, anger, depression, sadness and fear. Let your clinic doctor or social worker know about any prior problems you have had or any concerns you may have about coping with your treatment, since arrangements for professional support can be made.
As you undergo this new treatment, you may experience many of these feelings again and perhaps some new ones as well. Initially, patients are very anxious, but they may become depressed or withdrawn later. This reaction is normal. As your hospital stay continues, you may go through periods when these emotions become very intense.
Former patients have suggested the following to help you make it through those difficult times:
- Prepare yourself for the hospital stay. Bring books, tapes, handicrafts, puzzles or anything else that brings you pleasure and can be done in a hospital room. Time will pass more quickly if you have something you enjoy to keep you busy.
- Ask a family member or close friend to stay with you during this time. Loved ones can be a great support. If you are not from San Francisco, your family members or friends may want to rotate their visits while you are in the hospital.
- Share your fears and worries as well as your joys and victories with your friends and family members. If you or a family member need someone else to talk to, social workers, chaplains and other members of the health care team will be there to listen.
- Set goals for yourself each day. During a long hospital stay, especially when you may be feeling weak or tired, you may find it difficult to motivate yourself. Setting goals, no matter how small, and accomplishing them can give you a sense of purpose and help you make it through your stay. Many patients keep a journal to record their goals and progress and to express their feelings.
- Move around as much as possible. Go for walks, and sit up in a chair as much as possible.
- Be willing to learn a new craft or skill. An art therapist is available to provide ideas for fun projects.
- Give your hospital address and phone number to friends and relatives. That makes it easier for them to contact you.
- Write short notes to people who have shown you support, such as friends who have called or visited.
- Call other people. Do not always wait for them to call you. Many people want to talk to you but are afraid of disturbing you when you do not feel well.
- Encourage your family and the friends who are helping you to take care of themselves, too.
- Remember to laugh. Humor can be found in almost any situation. Laughter does not always make a bad situation go away, but it does allow you to take a few steps back emotionally and to see a situation more realistically. Humor can help you cope better.
Leaving the Hospital
A small percentage of patients have stated that once they leave the hospital, they experience feelings of hopelessness, shock and disbelief mingled with feelings of relief and loss. All these feelings, although normal, can be very overwhelming.
You may need additional professional support at this stage to adjust and deal with these varying emotions. If you are unable to sleep at night and do not have a lot of motivation to get out of bed in the mornings, have a loss of appetite and a general sense of unhappiness (are often weepy), you should seek professional support.
In addition, here are some suggestions to help ease your anxiety:
- Try to stay busy, although this will not always be easy. You are more likely to fall prey to anxiety and depression when you do nothing.
- Exercise. Patients often remark that any physical activity, even short walks, helps their mental and emotional outlook.
- Have healthy friends visit. No dinner parties for 50, but a few friends for a meal and an evening chat can be helpful.
Do not let yourself be ruled by your fears and anxieties. When your clinic doctor says that you can begin to venture out, do so. You can go to movies and restaurants when they are the least crowded, or visit local museums.
The first few times you go out, you may feel anxious or tire easily. If you keep at it, these feelings will resolve. Just remember to wash your hands frequently and stay away from coughing, sniffling people.
Expect this transition to be challenging. Although patients are happy to be home, fears and anxieties may remain. You have come to rely on the closeness of the medical personnel, and you may feel very much alone at home. Keep your appointments with your home doctor, and get to know his or her staff, too.
If your energy level is returning, continue your outside activities, using all the precautions discussed above to avoid infection. You may want to do some volunteer work. It may take a little time to find a place that will not increase your risk of infection, but it will be well worth it.
Helping Family Members Cope
Many former patients have said that the best way to help prepare family and friends for what you are facing is to be as open and honest as possible. Being open and honest keeps the channels of communication open and encourages people to stay together and support each other.
Children are great emotional barometers. They can sense when things are not right and they often imagine they are the cause of the problem. It is important to help children understand that you will be spending a long time in the hospital. Let them know you will be away from them only for a while because you need to be.
It is important to help children maintain their normal daily routines as much as possible, while keeping them informed about your progress. Call, send photos or describe your environment to them, so they have a mental picture of you and where you are. Some patients take videos of their room and where they are to send back to their families elsewhere. This often limits the fear children may experience.
A life-threatening illness is painful for every family member it touches. Hospitalization and periods of outpatient treatment will change normal routines and patterns of living. There may be unresolved and conflicting feelings between you and members of your family – anger, resentment, misunderstanding, anxiety or other feelings. If a family was already experiencing problems before the cancer was found, these problems may seem magnified because of the stress caused by the illness. Your social worker can help with ways to manage this stress in the family.
Getting on With Your Life After Treatment
The experience of having cancer is one that no one ever forgets. People who fight a life-or-death battle with cancer share a common anxiety about their health. Many also share a kind of happiness and peace. Cancer survivors often develop the ability to plan for the future and, at the same time, appreciate and enjoy the millions of ordinary moments most people ignore.
Your life included pleasures and responsibilities before you got sick, and it will include them again as you recover. With all the stress, it is sometimes difficult to concentrate and remember all the things you need to. This is expected to resolve as you resume normal activities. You are expected to be able to resume all such activities.
Back on the Job or at School
You should not expect to return to work or school for at least three to six months after transplantation. Even though blood tests may be normal, the immune system needs that time to recover. For some patients it may take six months to one year to recover.
For many people, work or school is an essential part of life. These activities offer satisfaction, a sense of structure and stability, and an opportunity to interact with peers. As you recover and return to work or school, you may find that your relationships with coworkers or fellow students have changed. Like others, fellow employees and students may not know what to say. By saying nothing, they may be trying to protect your feelings and their own. If you find that they say foolish things, they are probably speaking from their own nervousness and insecurity. Be patient and open about what you have experienced if you feel comfortable doing so. You may help clear up some misconceptions about your condition and you may help others feel more relaxed around you.
When people with cancer discuss their jobs, they often mention two major fears: the loss of companionship of fellow employees and discrimination. Many former cancer patients have reported various forms of job discrimination ranging from lack of promotion to dismissal to rejection for a new job. If you find yourself facing job discrimination because of your cancer history, you may want to seek help from a professional employment counselor or a lawyer. For assistance with entering or re-entering the job market or with training for a new job, contact your social worker for referrals to services that can help.
Information and Support
There are many people, both professional and volunteer, within the hospital and the larger community who are available to help you at any stage of your illness or treatment. The following is a partial listing of available resources:
- The American Cancer Society A volunteer nonprofit organization that offers supportive services as well as written and video informational resources. For general information, call 1-800-ACS-2345 or speak with your social worker.
- The Leukemia/Lymphoma Society This is a volunteer agency dedicated to meeting the needs of people with leukemia, lymphoma and multiple myeloma. Written and video information along with a broad range of programs for patients and their families are offered through this organization. This resource includes a Patient Aide Program, which serves to reimburse patients for their travel and parking expenses and some medication expenses. Contact your social worker or call 1-800-955-4LSA for further information.
- Cancer Information Service (CIS) The National Cancer Institute (NCI) sponsors a cancer information service that can be accessed by calling 800-422-6237 or 800-4-CANCER. Trained staff members are in place to answer questions and provide information. The NCI has also developed a computerized database called Physician Data Query (PDQ). This is designed to provide quick and easy access to the latest information on most types of cancer, descriptions of clinical trials that are open for patient entry, and names of organizations and doctors involved in cancer care. Spanish-speaking CIS staff also are available.
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UCSF Health medical specialists have reviewed this information. It is for educational purposes only and is not intended to replace the advice of your doctor or other health care provider. We encourage you to discuss any questions or concerns you may have with your provider.
Hematology and Blood and Marrow Transplant
400 Parnassus Ave., Fourth Floor
San Francisco, CA 94143