Living with lymphoma Living with lymphoma About this book If you or someone close to you has been diagnosed with lymphoma, you are not alone: around 19,000 people are diagnosed with lymphoma each year in the UK. It is likely to be a challenging time for you. We’re here to give you the information and support you need. This booklet includes: • ideas to help cope with difficult feelings • tips to help manage symptoms and side effects • suggestions for handling your day-to-day life • sources of further information and support. This booklet is divided into parts. You can dip in and out of it and read only the sections relevant to you at any given time. Lists practical tips. Is a space for questions and notes. @ Signposts you to other resources you might find relevant. Important and summary points are set to the section colour font. The information in this booklet can be made available in large print. 2 Note down key contacts so that you can find them easily. Health professional Name and contact details GP Consultant haematologist/ oncologist Clinical nurse specialist/ key nurse contact Treatment centre/ clinic reception Hospital out-of-hours number Hospital ward Key worker Support group coordinator 3 Acknowledgements We would like to acknowledge the continued support of our Medical Advisory Panel, Nurse Forum and other expert advisers, as well as our Reader Panel, whose ongoing contribution helps us in the development of our publications. In particular we would like to thank the following experts: • Anne Crook, Counsellor/Psychotherapist, Psycho- oncology, The Christie NHS Foundation Trust, Manchester • Dr Nagesh Kalakonda, Reader and Honorary Consultant, Haematology, University of Liverpool and Royal Liverpool University Hospital • Dr Sajida Kazi, Haematology Specialty Trainee, The University of Aberdeen • Mairéad Mulhall, Macmillan Lymphoma Clinical Nurse Specialist, University Hospital Southampton • Dr Ruth Pettengell, Honorary Consultant & Reader in Haematology & Medical Oncology, St George’s University Hospitals NHS Foundation Trust, London • Barbara Wilson, Founder and Director of Working with Cancer. Special thanks to our supporters for sharing their experiences of lymphoma that feature throughout the book. Thank you to Action for ME (Myalgic Encephalopathy) for allowing us to adapt their fatigue diary included on page 59. This booklet has been part-funded by Gilead Sciences Ltd and Roche Products Ltd. 4 Contents Feelings and emotions 6 Coping with symptoms and treatment 36 Relationships, family and friends 84 Self-esteem 104 Relaxation and managing stress 110 Day-to-day living 124 Life after treatment 144 Contents Never before have I been flooded by so many emotions yet had no idea of what I was feeling. I look back on the day I was told I had cancer with complete confusion. The haze continues to be best described by Simon and Garfunkel; essentially I was surrounded within a sound of silence, where people were talking without speaking. Natalia, diagnosed with Hodgkin lymphoma 6 Feelings and emotions Adapting to the diagnosis 8 Adaptation 14 Coping with difficult feelings 14 Identifying worries 25 7 Adapting to the diagnosis Reactions to the news of a diagnosis of lymphoma are entirely natural. You are likely to go through many thoughts and emotions. We say ‘you’ to refer to anyone affected by lymphoma, whether you are the person who has been diagnosed or you are supporting someone else with a diagnosis. Below are some feelings you might experience. However, there is no right or wrong way to feel, nor any set order or timescale in which to experience emotions – everyone is different. Shock and disbelief There is a lot to take in with a diagnosis of lymphoma. You might feel shocked or numb when you first hear the news – especially if you were having tests for something else when the lymphoma was found. At first, you might be in denial, thinking that this can’t really be happening or that the doctors have made a mistake. You might need to go over the news several times before it sinks in. Lymphoma can mean having to make several adjustments to your life, which may in turn mean coming to terms with the fact that your life has turned out differently to what you had planned. Anger Lymphoma can throw you into an unfamiliar world of medical information and terminology, hospital visits and treatments. Not knowing the cause of the lymphoma can bring confusion and anger. You might be angry about the disruption to your life and 8 future plans. You may feel angry with the cancer itself, with the health professionals who found it, or with those close to you. If you are on ‘watch and wait’ (active monitoring), you might feel angry and frustrated that no one is treating your lymphoma. You might feel jealous or angry towards people who seem to carry on with their lives. Some people describe being ‘angry at the world’ as they struggle with the unexpectedness and perceived unfairness of their situation. Sometimes anger masks fear and anxiety (see below). Read more about ‘watch and wait’ (active monitoring) @ at www.lymphomas.org.uk/active-monitor. Fear and anxiety There is a difference between fear and anxiety. With fear, the thing you feel frightened of is specific. For example, you might be scared of having treatment. Anxiety causes a sense of unease that can be overwhelming and vague – it happens when you feel threatened or under stress but find it hard to connect it to anything in particular. You might feel anxious often, for example, while you are waiting for treatment and test results or if you are on ‘watch and wait’ (active monitoring). Your anxiety may also be triggered by programs or advertisements on television or radio, or by articles in newspapers that somehow relate to lymphoma or illness in general. Feelings and emotions Anxiety often arises at the time of diagnosis and when treatment is discussed. Usually, it fades once treatment starts. Common signs of anxiety include: • being tired but unable to sleep • feeling worried or irritable • difficulty concentrating and inability to carry out day-to-day tasks • muscle tension • racing heart or palpitations (fluttering or pounding heart) • dizziness • quick breathing. Find tips on coping with anxiety later in this chapter. Let a member of your medical team know if this impacts on your day-to-day life, so that they can support you. ‘If only’ thoughts Life with lymphoma is full of uncertainty, which often goes hand- in-hand with anxiety. Some people have ‘if only’ thoughts, for example, ‘if only I’d gone to the doctor sooner, I would not be in this situation’. These thoughts can happen when you try to take control over a situation that is, ultimately, beyond anyone’s control. Difficult as it may be, you may need to learn to cope with uncertainty. Depression, sadness and loss Lymphoma can bring multiple losses. You might feel a sense of loss for your life as it was before the illness. You might feel sad that you have to reconsider your plans. You might worry that 10 your life could be shorter, which can lead to other worries, such as not being around to see your children or grandchildren grow up. These feelings of loss are a type of grief and may trigger memories of other losses you’ve had in the past. As well as your own sorrow, you might feel sad for your family and friends knowing that they, too, are coping with challenging feelings. It’s natural to feel low from time to time; however, if you feel very low for more than a couple of weeks and it is affecting your daily life, you may be affected by depression. Common symptoms of depression include: • ongoing feelings of sadness, anxiety or feeling ‘empty’ • feelings of hopelessness or pessimism • feelings of guilt or worthlessness • loss of interest or pleasure in the things that you once enjoyed • loss of libido (sex drive) • restlessness and irritability • difficulty concentrating, remembering or making decisions • thoughts of death or suicide. Depression doesn’t mean that you can’t cope or that you need to ‘pull yourself together’ – it’s a condition and there is support available to help you through it. Speak to your doctor, nurse or GP if you think you may be depressed. Seek help early to lessen the risk of developing more severe depression. Feelings and emotions Mind (www.mind.org.uk) has further information and support, including online forums, for people @ experiencing depression. You can also search for a depression support group on the Depression UK website www.depressionuk.org/groups.shtml Helplessness and loss of control A diagnosis of lymphoma can shatter your sense of control. You might feel that you no longer have control over things that are happening to you. Your life may be filled with appointments that tell you when and where you need to be, but you might not fully understand what’s going on, leading you to feel that you do not have control. For some people, this can cause hopelessness and low mood. Withdrawal or isolation Feeling isolated is a common experience for people affected by cancer. You might feel alone even in a crowded room. Seeing other people’s lives continue as usual can be testing. Perhaps you feel that no one understands what you’re going through. There may be times when you just want to be alone. Some people with cancer pretend they’re OK even when they actually feel they’re crumbling on the inside. It may seem easier, or as though you have no other choice, but to withdraw from people. You might worry about how they’ll respond if you tell them what’s really on your mind.