Coping and managing
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Prepare for your next meeting with your healthcare team by using the VELCADE® (bortezomib) Doctor Discussion Guide, which includes an organized list of questions you create to use with your healthcare team.
When dealing with the physical and emotional difficulties of multiple myeloma or relapsed mantle cell lymphoma, you may feel overwhelmed and need extra support.
It may be helpful to learn more about how to deal with your emotions, manage your energy level, and talk with your friends and family.
Dealing with emotions
A diagnosis of multiple myeloma or relapsed mantle cell lymphoma can be frightening. It is understandable that you might feel many different emotions when you are diagnosed. Fortunately, you are not alone; treatment and support are available to help you through this difficult time.
Some of the emotions you may be feeling include:
You may struggle with believing that you have multiple myeloma or relapsed mantle cell lymphoma. This is a natural reaction. Allow yourself time to accept the diagnosis.
If you have any of the following symptoms, you could have depression. Talk with your doctor or nurse if you:
- Feel sad, empty, or irritable or tearful for most of the day.
- Lose interest and pleasure in most activities.
- Gain or lose a significant amount of weight.
- Have a decrease or increase in appetite.
- Sleep too much or are unable to sleep.
- Are physically restless or have slowed movement.
- Feel worthless or have overwhelming feelings of guilt associated with perceived burden on caregivers, friends, and family.
- Are unable to concentrate or make decisions.
- Have thoughts of suicide or plan suicide.
After a time of denial and sadness, many people find themselves very angry about their diagnosis. This anger may be directed at doctors, healthy family and friends, or the cancer itself. This natural reaction can be lessened by talking to a trusted loved one or counselor.
Stress and anxiety
Cancer may make you feel afraid. Some people fear things like pain, financial problems, looking different because of treatment, or death. It may be helpful to educate yourself about your treatment and possible side effects so you can prepare for what may or may not happen. Doing so may help you worry less and become more hopeful.
Guilt is a natural emotion when you have cancer. People may feel guilty for the burden they think their families must endure. If you have these feelings, talk with your doctor or healthcare team about support groups and counseling. Sometimes talking with someone can help overcome unnecessary feelings of guilt.
Some people have a feeling of loneliness while they learn to live with cancer. Trained healthcare professionals can help you understand and process this and other emotions. Do not hesitate to discuss how you are feeling with your doctor or nurse.
Ways to cope with change
Being diagnosed with multiple myeloma or relapsed mantle cell lymphoma can mean some changes in your life. Here are some tips for coping with them.
Talking with your loved ones
Talking with your family and friends about multiple myeloma or relapsed mantle cell lymphoma can be both comforting and challenging. They too may need time to process their feelings about your diagnosis. They may have trouble handling their feelings or have difficulty talking about it.
If you would rather not talk about your diagnosis, that's all right, too. It can be difficult to share your own emotions. If this is the case, there are support groups available with people going through similar situations.
Finding a support group
Some people have found formal support groups helpful in dealing with their diagnosis. It can be helpful to know that you are not alone and to talk with other people in similar situations. Anxiety and frustration are difficult issues to overcome alone, and the bonds and friendships developed in these groups can be strong. These groups can also be a wonderful source of information for friends and families, too.
Keeping yourself informed
Educating yourself about multiple myeloma or relapsed mantle cell lymphoma will help you make decisions about your treatment. If you know what to expect, it may help remove any unnecessary doubt or confusion. You can ask your doctor or nurse for suggestions for learning more about your condition.
Having multiple myeloma or relapsed mantle cell lymphoma does not mean your life has to be put on hold. If you feel well enough to enjoy activities that you enjoyed before being diagnosed, continue doing them. Exercise will keep your bones strong and help combat fatigue. You can attend group exercise classes at a local gym. You can even ask a neighbor if he or she is interested in walking with you. Be sure to talk with your healthcare team before you begin any exercise program or if you experience any new pain.
Setting practical goals
You may find it helpful to resume some activities that you did before being diagnosed with multiple myeloma or relapsed mantle cell lymphoma. These might include activities like going back to work or exercising regularly. Discuss the possibilities with your doctor or nurse and make a plan; you may not be ready to perform these tasks at the levels you did before. Focus on easing back into your normal routines at a reasonable pace.
Resting when necessary
Your energy levels may decrease during treatment. Although it is important to stay active and continue doing the activities you enjoy in your everyday life, your body may need more of a chance to rest throughout the day.
Even in difficult times, it is important to do the things that you enjoy. Don’t forget to treat yourself to the things that make you happy! If you’ve enjoyed funny movies, card games, and gardening before your diagnosis, you will probably still enjoy them—and the feelings associated with enjoyment can have a positive impact on your well-being.
Talking with family
It may be difficult to discuss multiple myeloma or relapsed mantle cell lymphoma with those you love. Family life may be changed. There may be emotional stress, changes in family roles, interruptions in what used to be daily activities, or financial strain. It is natural for family members to be concerned, or even alarmed, when first hearing your diagnosis. For this reason, communication with family members is very important.
- Help with everyday tasks. Get your family involved. They can do things like shop, help you check the mail, or pay bills. Even small chores, like watering the plants or helping to wash dishes, may help children feel good about contributing to a loved one’s recovery.
Managing your energy level
Having multiple myeloma or relapsed mantle cell lymphoma can affect your daily life in many ways. You may not have as much energy as you did before. It is helpful to keep your energy levels as high as possible to get the most from your days. This can help your body and mind heal. There are many ways to do this, such as:
- Focusing only on the most important aspects of life. Now is the time to think about what you want from life. What stressful activities can you do without? What hobbies do you like?
- Organizing and planning your days. Keeping lists and diaries may help you identify times when you are most energetic or feel most tired. Try to take advantage of your periods of high energy, and reserve relaxation for other times.
Preparing for appointments
Treatment for multiple myeloma or relapsed mantle cell lymphoma may mean regular visits to the doctor. To help you and your family prepare and stay organized with your medical care, we suggest these tips:
- Keep a record of your medical information in a journal or file. Record dates of procedures and tests, and bring this information to your appointments.
- Keep a list of names and doses of your medicines. Include the names, doses, and how often they are taken. Be sure to bring this information to the doctor’s office.
- Make a list of questions and concerns ahead of time. List the most important questions first, so you can be sure to get the answers. Click here for a tool to help you make a list of questions for your healthcare team.
- If you believe a question isn’t being answered clearly, try asking it in a different way. The healthcare team may have misunderstood your concern, and this could help make your question more understandable.
- Call ahead of time to verify information. Be sure that necessary test results, records, and other paperwork are at the doctor’s office. You might also need directions, transportation, and hotel information. This can save you some time and trouble later.
- Discuss advice that you receive from outside sources with your healthcare team. Some advice you may find from other sources (for example, from websites or friends) may not be appropriate for you, or it could conflict with your doctor’s advice.