Quality of Life

Coping with the diagnosis

Being diagnosed with myeloma can leave you feeling overwhelmed, in shock, numb even. You may sometimes find yourself overcome by strong emotions when you least expect it. Or you may actually be relieved to finally have an explanation for all the symptoms you've been experiencing.   

What's important to know is that whatever you're feeling is natural and completely understandable.

You've been given a lot to process and to come to terms with. And there is no "right" or wrong" way to react. The diagnosis affects everyone differently.

You mays ask yourself, "Why me?" and want to find something or someone to blame.

• Again, this is completely natural, even though there is no answer to that question.
• You may find that learning everything you can about myeloma and about what to expect can help you feel more empowered and positive about the future.

At first, you may feel that being diagnosed with myeloma changes everything.

• It's possible for many things in your life to stay the same.
• Some of the changes may actually be positive. Many people say that they feel closer to their loved ones, are more aware than ever of the importance of family and friends, and have re-assessed their priorities.
• Not all changes that occur will be permanent. Hair loss from chemotherapy, for example, may alter how you look for a while, but your hair will grow back once the treatment is done.  

For some patients, the first questions that come to mind are "Am I going to die?" and "If so, when?" This is a very difficult thing to think about, let alone to talk about.

• Before you ask your doctor, it's helpful for you to be clear in your own mind as to exactly what it is you want to know.
• Don't lose sight of the fact that, even though myeloma is not curable, it is treatable. People can live with myeloma for many years, and enjoy a good quality of life. 

Understanding myeloma, your treatment options and what your life might be like after your treatment can go a long way toward easing the fear, anger and frustration you may feel in the face of the unknown.

Reaching out to those around you and sharing what's on your mind can often be helpful, not just for you, but for them, too. They may be thinking and feeling some of the same things you are. Opening up to each other may contribute to bringing you even closer. 

Keeping a diary can also be a great way to help you clarify and express your thoughts and feelings. It can also provide you with a potentially useful record of your treatment. 

Emotional support

It is very easy for myeloma patients and members of their family to feel isolated and overcome by strong emotions that make it hard for them to discuss their worries and fears.

Talking to someone who understands can help ease these feelings of isolation.

Many people find that their nurse or social worker is a good person to talk to. However, if you're having a difficult time coping with your emotions, ask your physician to refer you to a counselor or to someone else who can help.

Support groups also provide a safe, informal environment in which members can share information and personal experiences.

• Contrary to what some people may think, support groups are not just "gloom and doom." In most cases, they're simply a group of friendly, understanding people who all face similar challenges and provide each other with information, encouragement and support. (Hence the name!)
• Some support groups are run by patients and family members. Others are organized by healthcare workers or professional group facilitators.

To find a Support Group in your area, click here

Even if there is no myeloma-specific support group in your area, there may be a general cancer and/or hematology group that meets locally.

Family and friends can also provide a very effective support network.

• If someone in your circle of friends and family has myeloma, you can help ease that person's anxiety just by listening, and trying to understand and empathize with his or her feelings.

Depression and anxiety

Both patients and caregivers can experience depression and anxiety at various stages of the disease. It is important to learn to recognize the symptoms and to discuss them with your doctor or nurse.

Signs to look out for include, among others:

• Feeling low, nervous or worried for a prolonged period.
• Having difficulty sleeping.
• Experiencing panic attacks.
• Being irritable.
• Losing interest in your normal activities.

Dealing with myeloma is very demanding, and takes a psychological and emotional toll on both patients and caregivers.

There may be times when you feel positive and optimistic, and others when you feel anxious, scared or depressed. These feelings are not a sign of weakness. Nor are they something you should feel ashamed or guilty about. Be compassionate with yourself and give yourself permission to "take days off."

Your doctor can't treat you for depression or anxiety unless he or she knows about it. Don't hold back. Ask for help.

There are several treatment options available, including talk therapy and drug treatments. Your doctor will recommend an approach that is appropriate for your particular situation. He or she can also refer you to a counselor and/or prescribe effective medication.

Other things some patients and caregivers find helpful include:

• Relaxation techniques
• Complementary techniques, such as aromatherapy.
• Something to look forward to once treatment is finished, such as a holiday or taking up a new hobby. 

Sexual relationships

The changes brought on by the diagnosis of myeloma can sometimes affect sexual relationships. For many reasons, you and your partner may have less interest in having sex.

These reasons include, among others:

• Feeling too tired or physically unable to enjoy a full sexual relationship.
• Feeling that sex is not important if you are coping with a serious illness.
• Experiencing a reduction in sexual desire (libido) because of:
• Stress and anxiety.
• Certain drugs.

If your sexual relationship is important to you, talk to your partner about how you feel. You may find it difficult to bring up the subject, but it's an important conversation to have.

It's easy for someone to feel rejected when a sexual relationship changes or ceases.

Be open and honest with your partner and try to maintain a level of closeness, even if you do not have sex. Discuss with your partner what level of intimacy feels comfortable, and, in time, you may gradually return to a more physical relationship. 

Don't be too embarrassed to talk to your doctor or nurse about issues you may be having with your sexual relationships. You may not be used to these types of conversations, but they are. (It it helps, just tell yourself that there's probably not much they haven't heard already!) They may be able to prescribe a treatment that can help, if appropriate.