quality of life

• coping with the diagnosis

Being told you have myeloma affects everyone differently. At first you might be overwhelmed, in shock or feel numb. Sometimes strong emotions may catch you unawares. It is important to understand that this is a natural reaction and part of coming to terms with the diagnosis. Some people feel a sense of relief when they are diagnosed as it explains all the symptoms they have been experiencing.

You might ask yourself "Why me?" and want to find something or someone to blame - again this is completely natural. However, there is no answer to this. It is therefore probably better to think positively about the future and find out all you can about myeloma and what will happen to you, rather than question why this has happened.

At first it may seem that being told you have myeloma changes everything, but it is possible for many things in your life to stay the same. Some changes may turn out to be positive - many people say they feel closer to their loved ones and are able to focus more on the importance of family and friends or have learned to re-assess the priorities in their lives. Remember too that not all changes are permanent: hair loss from chemotherapy may alter the way you look for a while but your hair will grow back.

For some patients, one of the first questions they ask is "Am I going to die and, if so, when?" This is a very difficult thing to think about and before you ask your doctor about this you should be clear about exactly what you want to know. In general terms, myeloma is treatable but not yet curable. People can however live with myeloma for many years, enjoying a good quality of life.

Understandably, you may feel a great deal of fear, anger and frustration. Learning more about myeloma, your treatment options and life after myeloma treatment can help to ease some of these feelings. Those around you may well be feeling some of the same things you are feeling, and talking together about your feelings can often help.

Sometimes keeping a diary can help to clarify your thoughts and feelings and can also help to provide a record of your treatment which might be useful.

• emotional support

Emotional support is important in helping you live with myeloma. It is very easy for patients and family members to feel isolated, and strong emotions often make it difficult to discuss worries or fears. Talking to someone who understands what is happening can ease these feelings of isolation. Many people find their nurse or social worker is a good person to talk to. Also if you find your emotions difficult to cope with, you may want to ask your doctor to refer you to a counselor or someone else who can help.

Support groups provide an informal and comfortable atmosphere in which members can share stories and information. Many people assume that they will be full of doom and gloom, but generally they are not. They are usually a supportive group of people who are facing the same things that you are.

Some support groups are run by patients and family members, others by healthcare workers or professional group facilitators. Call the Myeloma Canada at (514) 570-9769, or ask your doctor for the details of myeloma support groups near you. If there is not a myeloma-specific group, there may be a general cancer/haematology group that meets locally. Family members can offer each other support by talking and listening. Being a good listener is a very effective way to offer support. It is difficult to know how another person is feeling, but by trying to understand and empathize with them you can help ease their anxiety.

• depression and anxiety

Many patients and caregivers experience depression and anxiety at some stage during the illness. It is important to recognize the symptoms and to discuss them with your doctor or nurse. These symptoms could include feeling low, nervous or worried for a prolonged period, having difficulty sleeping, experiencing panic attacks, being irritable and losing interest in your normal activities. Coping with myeloma is very demanding psychologically and emotionally, whether you are a patient or a caregiver. Although sometimes you may feel optimistic, there may be other times when you feel anxious, afraid or depressed. These feelings are not a sign of weakness and you should not feel ashamed or guilty about them. It is very important to allow yourself to have off days.

Treatment for depression or anxiety can only begin once your doctor knows about it. There are several options for treatment, including talking therapies and drug treatments. Your doctor will know which is appropriate for your situation and can refer you to a counselor and/or prescribe an effective anti-depressant medicine.

Some patients and caregivers find that relaxation techniques and complementary therapies such as aromatherapy can help reduce anxiety. Try to give yourself something to look forward to once your treatment is finished, such as a holiday or taking up a new hobby.

• sexual relationships

Sometimes sexual relationships change after a diagnosis of myeloma. You or your partner may feel less keen to have sex. There can be many reasons for this. You may feel too tired or physically unable to enjoy a full sexual relationship. Stress and anxiety can cause loss of sexual desire (libido) or you may feel that sex is not important if you are coping with a serious illness. Many drugs can also reduce sexual desire.

If a sexual relationship is important to you, do talk to your partner about the way you feel, even though you may find it difficult to start the conversation. It is easy for people to feel rejected when a sexual relationship changes or ceases. In the first instance, try to maintain a level of closeness, even if you do not have sex. You and your partner can discuss 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 problems with your sexual relationships. They are quite used to this sort of discussion, even if you are not. They may be able to prescribe a treatment that can help, if appropriate.