Information Pathway Myeloma UK Broughton House 31 Dunedin Street Edinburgh EH7 4JG Tel: + 44 (0) 131 557 3332 Fax: + 44 (0) 131 557 9785 Myeloma Infoline 0800 980 3332 www.myeloma.org.uk Charity No. SC 026116 The emotional impact of a myeloma diagnosis Coping with a diagnosis of myeloma Myeloma affects everyone differently. At first you might be overwhelmed, in shock or feel numb. Sometimes strong emotions may catch you unaware. It is important to understand that this is a natural reaction and part of coming to terms with a diagnosis. However, some people feel a sense of relief when they are diagnosed as it explains all the symptoms they have been experiencing. There is no right or wrong way to feel. Everyone is different and will find their own way through the first few weeks. Many choose to find out all they can about myeloma and be proactive about their care, rather than dwell on why it has happened. Of course it is natural to ask Why me? and perhaps look at blaming yourself or others; but there is no answer as to why people get myeloma. 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 some 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 life. Remember too that not all changes are permanent: hair loss from chemotherapy may alter the way you look and feel for a while, but your hair will grow back and energy levels will generally improve. 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 the same, and talking together can often help. Myeloma Support Groups Often talking to other people who are faced with myeloma is a great help and support. Support Groups provide an informal and comfortable atmosphere in which members can share experiences and information. Many people assume that they will be full of doom and gloom, but generally they are not. They are usually a very supportive group of people who are facing the same things that you are. Some Groups are run by patients and family members, others by healthcare workers or professional group facilitators. You can find details of further information about Support Groups at the end of this information sheet. Myeloma Awareness Week 21 28 June
Myeloma information days There are also information days that you can attend if a Support Group is not for you. Myeloma UK Patient and Family Myeloma Infodays are full-day educational meetings specifically for patients and families, where you can learn about the latest in the treatment and management of myeloma from a panel of myeloma experts. They also provide the opportunity to meet others affected by myeloma, to share experiences and gain support. Emotional support Emotional support is important in helping you day-to-day with myeloma. It is very easy for patients and family members to feel isolated and strong emotions often make it difficult to discuss worries and fears. Taking high doses of steroids is common in myeloma treatment and this can heighten strong emotions which can often put a strain on relationships. Talking to someone who you are close to can ease these feelings. Many patients find their specialist nurse is a good person to talk to. Also, if you find your emotions difficult to cope with, you might want to ask your doctor or nurse to refer you to someone with specialist training in helping people psychologically such as a counsellor. Counsellors give you the opportunity to explore your feelings and experiences in a supportive, confidential environment. A counsellor does not give you advice but helps you to find your own answers to the problems you are facing. Counselling may not always be available in your hospital but your doctor or nurse should be able to put you in touch with a professionally trained counsellor in your area. Alternatively, you can contact the British Association for Counselling and Psychotherapy yourself; their contact details are included at the end of this Infosheet. Depression and anxiety Many patients and carers are likely to experience anxiety or depression at some stage. It is very important to recognise 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 carer. Although sometimes you may feel optimistic, there may be other times when you feel anxious, afraid or depressed. Being on steroids can accentuate this. 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 and / or nurse knows about it. There are several options for treatment, including talking therapies and prescribed medicines. Your doctor will know which is appropriate for your situation and can refer you to a counsellor and / or prescribe an anti-depressant. Or they may refer you to a clinical psychologist, particularly if you have a history of anxiety or depression. Talking about myeloma Cancer brings with it strong feelings and images. At first it may seem difficult to talk about a diagnosis of myeloma but talking can be very helpful in reducing fear and feelings of isolation. Talking things over with other people can help to clarify your thoughts and feelings in your own mind and can be particularly useful if you are thinking about treatment options. Telling other people Telling friends and family members that you have myeloma can be a daunting task, but letting those around you know of your diagnosis will help them to support you. Writing a list of people you want to tell immediately and those who can wait can help you to organise your thoughts. Information Pathway The emotional impact of a myeloma diagnosis 2
Choose a quiet, private area with no distractions (switch off the television or radio) where you can sit down comfortably. Try to give information a bit at a time, checking that the listener understands what you have said. Some patients prefer to have a family member or friend tell other people. This is perfectly reasonable and means you don t have to keep telling your story if it upsets you. Telling children The decision on what and when to tell your children or grandchildren is a very personal one. It may depend on the age of the child(ren), your family circumstances and the impact of any treatment you have. Sometimes a family may feel it is better to keep upsetting news from a child if your treatment does not have any visible side-effects such as hair loss. However, generally you would be encouraged to tell children as they are very sensitive to changes in their surroundings, and may start to ask questions for themselves. If you are a parent it is probably best to tell your child(ren) yourself about the diagnosis and treatment. If you think it may be too upsetting for you, you may prefer your partner, your parents or a close friend to tell them on your behalf. It is important to put things in simple terms and to repeat key points. Pictures or diagrams will help younger children understand. Keeping them up-to-date will make sure your child is involved and stop feelings of exclusion or unnecessary worries. Give them time and the opportunity to ask questions or to say how they feel, but don t force them to talk about it if they don t want to. Remember to tell the staff at their school what is happening. Self-help checklist Below is a list of suggestions which may help you to cope with the emotional impact of a myeloma diagnosis. Learn about myeloma and its treatment use patient information and websites and your healthcare team Join a Support Group it can help to talk to other patients and relatives about how you feel Use the Myeloma Infoline for information on treatment, practical advice, a listening ear and emotional support 0800 980 3332 Find out from your doctor or nurse which support services and benefits are available do ask for help if you need it You should be given the name of a member of your medical team, usually a cancer nurse specialist. If you are not given these details you can ask for it. It is useful to keep this number handy Put aside time for rest and relaxation Be aware of signs of depression and anxiety and speak to your doctor or nurse about them Try to do normal things and have a routine as much as possible Try to do one thing that you enjoy every day Think positively, but allow yourself to have off days Information Pathway The emotional impact of a myeloma diagnosis 3
List of sources of emotional support Myeloma UK www.myeloma.org.uk 0800 980 3332 Myeloma Infoline (Monday Friday, 9.00 am 5.00 pm) Myeloma UK provides access to information and support by telephone on all aspects of myeloma and can provide a range of written information. Myeloma UK can also put you in touch with a Support Group in your area. Macmillan Cancer Support www.macmillan.org.uk 0808 8082020 (Monday Friday, 9.00 am 6.00 pm) The Macmillan helpline is staffed by specialist advisors who provide information, practical and emotional support to those affected by cancer. Macmillan also provides information about over 750 cancer self-help groups across the UK. Cancer Research UK www.cancerhelp.org.uk 0808 8004040 (Nurse Information line; Monday Friday, 9.00 am 5.00 pm) CancerHelp UK is the patient information website of Cancer Research UK. It provides a free information service about cancer and cancer care for patients and their families. British Association for Counselling and Psychotherapy (BACP) www.bacp.co.uk 0870 4435252 (Monday Friday, 8.45 am 5.00 pm) BACP provides information about counselling and can give you a list of local registered counsellors. Depression Alliance www.depressionalliance.org 0845 1232320 (Information pack request line) Depression Alliance provides information, support and understanding for those affected by depression and coordinates a network of self-help groups throughout the UK. Depression Alliance also produces a wide range of publications covering various aspects of depression. Other information available from Myeloma UK Myeloma UK has a range of Essential Guides, Infoguides and Infosheets available covering many areas of myeloma, its treatment and management. To order your free copies call our Myeloma Infoline on 0800 980 3332. This information is also available on our website at www.myeloma.org.uk To talk to someone about any aspect of myeloma, call our Myeloma Infoline on 0800 980 3332. The Myeloma Infoline is open from Monday to Friday, 9am to 5pm and is free to phone from anywhere in the UK. From outside the UK, call +44 (0) 131 557 9988 (charged at normal rate). About Myeloma UK Myeloma UK is the only organisation dealing exclusively with myeloma and its related disorders in the UK. Our broad and innovative range of services cover every aspect of myeloma from information and support to improving standards of treatment and care through research, education, campaigning and raising awareness. Our strategy is to take an integrated approach to systematically address the barriers and challenges that are slowing down myeloma research and the development of, and access to, new treatments, optimal care, information and support. We receive no government funding and rely almost entirely on voluntary donations and fundraising activities. Information Pathway The emotional impact of a myeloma diagnosis 4
With Myeloma UK you can Call our Myeloma Infoline on 0800 980 3332 for information, practical advice, emotional support and a listening ear Get free Infopacks, Infoguides and Infosheets about myeloma Learn about myeloma from experts and meet others affected by myeloma by attending Patient and Family Myeloma Infodays Subscribe to our newsletter Myeloma Matters Visit our website www.myeloma.org.uk Join a Myeloma Support Group Author: Anne-Marie Haughey Research and Clinical Information Writer, Myeloma UK Issue date: August 2010 Myeloma UK Broughton House, 31 Dunedin Street, Edinburgh EH7 5JG Tel: + 44 (0) 131 557 3332 Fax: + 44 (0) 131 557 9785 Email: myelomauk@myeloma.org.uk www.myeloma.org.uk Charity no. SC 026116 Information Pathway The emotional impact of a myeloma diagnosis 5