Talking to someone with cancer This information is an extract from the booklet Lost for words – how to talk to someone with cancer. You may find the full booklet helpful. We can send you a free copy – see page 13.

Contents • Talking and listening • How to talk and be a good listener Being told that someone you care about has cancer is often a big shock. You may want to help but don’t know how. You may think that there are things you should say or do to make things easier for the person with cancer – if only you knew what they were. You may have thoughts such as, ‘What if I say the wrong thing?’, ‘How do I talk to her?’ and ‘I don’t want to hurt him.’ Many people feel like this, even if they’re used to dealing with difficult issues. This information offers ideas for how to talk about cancer and be a good listener, and practical ways to helpyour relative or friend.

Talking and listening How we communicate Talking and listening are two of the main ways that we communicate with each other. How you talk is just as important as the words you use. The way you speak can show warmth and concern, as can a smile, a glance or a touch.

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Talking to someone with cancer

Body language As well as talking and listening, we communicate with each other through body language. This includes smiling, touching, kissing, frowning and maybe just being together without feeling the need to talk. If a person close to you is upset, they may not be able to take in much of what you say, but they may still value your support. Writing Text, email and social media websites are now common ways of communicating for many people. They allow small bits of information to be shared at a time, sometimes 24 hours a day. They can be very effective, especially if the person you’re supporting feels tired or unwell. They can also be useful if the person isn’t up to seeing you or having a long phone conversation. A text message or email may lack the togetherness of talking face-to-face, and some people also find that the responsibility to respond can be a burden. You could ask if the person you’re supporting is happy to be sent text messages and emails, or whether they’d prefer you communicate with them in some other way. Talking face-to-face This is often the most efficient and personal way we have of communicating. Although other ways are important, it often helps to talk first. Having discussions and being able to ask questions are often the best ways of making any communication clear between people. When life is hard, we often talk about what’s bothering us. This releases some of the stress so we feel better. Finding the words to describe experiences and feelings can help make sense of them and bring them into perspective. Talking can be a huge relief. Not talking If a person doesn’t have anyone to talk to, they are more likely to be anxious and depressed. Studies tell us that families that openly express their feelings show lower levels of depression. And families that communicate directly about the illness are less anxious. People who are seriously ill may find that other people won’t talk to them, so they feel isolated. This may make them feel even worse.

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Talking to someone with cancer

There are a number of reasons why a person may not want to talk to someone who is seriously ill. They may be worried that if they talk to their relative, friend or loved one about the cancer or its treatment, they will increase their distress. But in practice, this doesn’t happen often. Conversations between people who are ill and their relatives and friends usually don’t create new fears and anxieties. In fact, the opposite is often true: not talking about a fear can make it bigger. The person with cancer may also find it hard to talk about how they feel. One reason for this can be a feeling of shame. A person may be ashamed of their reaction to their illness – they may be afraid or sad, and cry as a result of these feelings. They may feel that they have somehow caused their cancer even though this isn’t so. They may be afraid but feel that they shouldn’t be. Listening You can help your relative or friend by listening to their concerns. By allowing them to express their feelings and not changing the subject, you show that you accept and understand them. This can help them feel better. A lot can be gained from talking with and listening to someone who has cancer. However, starting a conversation can feel awkward and embarrassing, maybe even frightening.

Barriers to good communication There are several barriers that may block communication between you and the person who is ill. The person who is ill: • may feel overwhelmed and stunned by the news of their diagnosis and find it difficult to talk • may be in denial, meaning they’re not accepting their diagnosis • may be afraid of hearing more bad news • may want to avoid becoming upset by thinking about their illness • may not want to cause their family and friends distress • may take a ‘stiff upper lip’ approach to their illness by being strong and not complaining

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• may feel angry or depressed at having cancer, so they just want to be alone • may be too ill to talk much.

‘It is difficult to know what to say sometimes, but I’ve found it easiest to take it one step at a time.’ Izzy

You: • may be afraid of causing distress • may not know what to say • may feel overwhelmed that someone close to you has cancer • may be unable to think clearly and find words of support. These may seem like major hurdles. However, there are ways of listening and talking that can help you work out whether your relative or friend needs or wants to talk.

How to talk and be a good listener It’s important to realise that there is no magic formula, phrase or approach that is the ’right’ thing to say or do. There isn’t a right set of words or attitudes that will always help. If you want to help someone who’s facing a difficult time, just wanting to help and offering to be there for that person is what matters most. One of the most important things is not what we say – it’s that we’re there and that we listen. If you understand the few simple rules of good listening, you’ll be a great help and support. Listening can help build a relationship that allows you to be even more supportive and to know what your relative or friend needs. Being a good listener can help you understand in part what another person is feeling. We can never completely understand another person’s thoughts and feelings, but listening helps us understand enough for them to feel that we empathise with them. Page 4 of 13

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Talking to someone with cancer

Empathy means sensing what another person is feeling. It’s an important way of showing love and concern for another person. This, in itself, can be very reassuring to a person with cancer. As a listener, you don’t need to have all the answers. You can help someone just by listening and simply allowing them to talk. A lot of the most awkward gaps in communication are due to not knowing some of the principles that help people talk freely. These are discussed on the following pages.

Getting the setting right This is important and is worth taking time to get right at the start of the conversation. You should: • Switch off your mobile phone so you won’t be interrupted. • Take off your coat – this signals that you’re not in a rush to be somewhere else. • Get yourself comfortable. • Let your relative or friend know that you have time to sit and talk with them. • Sit quietly – this will give the impression of calmness even though you may not feel relaxed. • Suggest a cup of tea if you feel it’ll help. • Keep your eyes at the same level as the person you’re talking to. This almost always means sitting down. If your relative or friend is in hospital, sitting by the bed is better than standing. Get some privacy Try to keep the setting as private as possible. For example, if they are in hospital, avoid talking in a corridor or on a staircase, where passers-by can hear what you’re saying. There may be a day room you can go to. If the person you’ve come to see is in bed, you could suggest drawing the curtains to get some privacy. Be aware of how loudly you are talking, especially in a hospital ward where your conversation could be overheard. Talking too loudly may put the person off saying anything themselves. On the other hand, don’t speak so quietly that they struggle to hear what you’re saying.

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Where you sit If you’re too far away, a conversation can feel awkward and formal, but if you’re too close, the other person may feel their space has been invaded. Be especially sensitive to this if you’re talking to someone who’s in bed and not able to move themselves. It helps to make sure there are no physical obstacles (desks, bedside tables and so on) between you. A barrier such as a desk can have a distancing effect on your conversation. If something is in the way, you could say something like, ‘It’s not very easy to talk across this table; can I move it aside for a moment?’

Finding out if the person who is ill wants to talk Your relative or friend may not be in the mood to talk to you that day. Their treatment or symptoms may mean they don’t feel well enough. Or they may just want to talk about ordinary things, such as television programmes, sports events or what’s been happening in your life. There’s something very reassuring about everyday small talk, and sometimes people simply want to enjoy a ‘normal’ conversation. Don’t be offended or feel it’s your fault if they don’t want to tackle big questions such as how they’re feeling about their illness just then. It will still help them if you simply listen and pay attention while they talk. You may be able to sense whether your relative or friend wants to talk. If you’re not sure you can always ask, ‘Do you feel like talking?’ This is better than going straight into a deep conversation (such as a discussion about how they’re feeling), especially if they’re tired or have just been talking to someone else.

Encouraging a person with cancer to talk You can encourage the person who’s ill to talk about what’s on their mind. Simple things work very well. You can try nodding or saying things like, ‘Yes’, ‘I see’, or ‘What happened next?’ These sound simple, but during stressful times, it’s the simple things that help. I

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Talking to someone with cancer

f the person starts to cry as they talk about their situation, you could say something like, ‘I can see how upsetting that is for you.’ If you are very close to them, you may simply hold their hand and say, ‘I’m sorry that you’re having to go through this.’ You can also show that you’re listening by repeating two or three words from the person’s last sentence. This helps them feel that their words are being understood. For example, if they say, ‘I went to the hospital and the consultant ordered lots of x-rays.’ and then lapses into silence, you may say after a little while, ‘Ordered lots of x-rays?’ This may help them start talking again. You can also repeat back what you’ve heard – partly to check that you’ve got it right and partly to show that you’re listening and trying to understand. You may say things like, ‘So you mean that …’ or ‘If I’ve understood you, you feel …’ You may find your own way of saying this, especially if you know each other very well. Eye contact Looking at the person as you’re listening and talking tells them that you’re giving them your undivided attention. But remember that while in some cultures it’s okay to look directly into someone’s eyes, in others it’s not. Be aware of how the other person feels, and don’t maintain eye contact for so long that it feels as though you’re staring at them. If you’re talking about difficult issues and, during a painful moment, you can’t look directly at each other, you can still stay close by. You could hold their hand or touch them if you know them well enough to do this.

How to listen well When someone is talking, it’s important to show that you’re listening. Don’t get caught up with thinking about how you’re going to reply or what you’re going to say next. If you’re thinking about your response, this may stop you from listening properly. Listening is not the same as waiting to talk. To listen properly, you need to give your full attention to what your friend or loved one is saying. Remember that you listen with your whole body. If you look at your relative or friend, sit facing them and indicate that you’re taking in what they’re saying, they’ll notice this. If, however, you’re looking around the room, moving your arms and legs restlessly, or interrupting them and changing the subject, they will not feel heard. Questions about cancer? Ask Macmillan 0808 808 00 00 www.macmillan.org.uk

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Avoid talking while they’re talking – wait instead for them to stop speaking before you start. If they interrupt you while you’re saying something with a ‘but’ or ‘I thought’ or something similar, you should stop and let them carry on.

Using silence and non-verbal communication If someone stops talking, it usually means that they’re thinking about something painful or sensitive. You may be able to sense what they’re thinking or feeling. Wait with them for a little while – hold their hand or touch them if you know them well enough – and then ask them what they were thinking about. Don’t rush, even if the silence seems to last for a long time. Most of us aren’t used to sitting silently with another person, and we may feel awkward or embarrassed. There’s no need. It’s perfectly fine to wait until they feel ready to talk again. Sometimes you may feel that you don’t know what to say. If this is the case, it’s fine to say nothing at all, or say, ‘I don’t know what to say’. Sometimes just being there and offering a touch or an arm around a shoulder can help more than words. Non-verbal communication (communicating in ways other than speaking) is just as important as words. We all learn to pick up subtle non-verbal signals from others. A smile, a frozen face with staring eyes, a restless movement of the body, slumped shoulders, a tremor in the voice – these all speak volumes. This also applies to physical contact. For example, if you touch your relative or friend and they pull their hand away or look uncomfortable, you’ll know that this is a signal to give them space. But a touch may be just what’s needed to help them talk. It shows that you care and want to support them. They may cry when you touch them. This is natural and can be healing so allow them time to cry. You may find that you cry too – crying together can often be good for both of you.

Don’t be afraid to say how you feel Being honest about your feelings will help develop trust between you, and it’ll make it easier for the other person to be honest about their own feelings. It may be helpful to say things like, • ’I find this difficult to talk about.’ • ’I’m not very good at talking about...’ • ‘I don’t know what to say.’ Page 8 of 13

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You may worry that saying things like this will cause your loved one or friend further distress. However, in practice it tends to have the opposite effect, and the person you’re talking to may be relieved that someone understands. It’s quite possible that the person you’re talking to feels the same as you. Even if you share the same feelings, remember not to stay focused on your own feelings. Make sure that you bring your attention back to your relative or friend.

Making sure you haven’t misunderstood If you’re sure that you understand what your relative or friend means, you can say something like, • ‘You sound very low.’ • ‘I imagine that must have made you very angry.’ This tells them that you’ve picked up on the emotions they’ve expressed while talking to you. But if you’re not sure what they mean, you can ask, • ‘What did that feel like?’ • ‘Do you mean that …?’ • ‘How do you feel now?’ Misunderstandings can occur if you assume that you know how they’re feeling. To help make sure that there are no misunderstandings you could say something like, • ‘Can you say a bit more about what you mean?’ • ‘I’m not sure that I know how you feel/what you mean.’

Staying with the subject If your relative or friend wants to talk about how awful they feel, it’s important to let them. It may be distressing for you to hear some of the things they say. However, it can really help them if you’re able to stay with them and just listen while they talk. If you find it uncomfortable and too difficult to cope with just then, you could suggest a short break for a cup of tea or you could take a quick look around the room while you compose yourself. This will help move your attention away from what is distressing you.

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If after a short break you still find that the conversation is too hard for you, you could say so and offer to discuss it later. Say something simple, such as, ’I’m feeling a bit emotional and it’s hard for me to talk about this now – could we talk about it later?‘ Don’t simply change the subject without acknowledging the fact that what your relative or friend is talking about is very important. When your relative or friend brings up the subject of their cancer, don’t immediately start talking about someone else you know who has, or has had, cancer. You may mean well, but remember that each person’s experience of cancer will be different, so talking about someone else’s experience may not be helpful. Treat your relative or friend as an individual and focus on them rather than comparing them with others who have cancer.

Giving advice You may want to give advice to your relative or friend. You may want to tell them something that may help them feel better. But it’s probably more helpful to simply listen for as long as they wish to talk and then ask if there’s anything you can do to help them. You may be surprised at their answer, as they may come up with something unexpected. You may have your own ideas, but it’s worth pausing and asking yourself if your idea will really be helpful. If you’re not sure, you could suggest something like, ‘I wondered about …, but I don’t want to suggest this if it’s not the sort of thing you want.’ Remember that your relative or friend may not accept your advice. If they reject your suggestion, don’t take it personally; their preferences may differ from yours. It could also be one way that they can stay in charge of their life when other parts of it feel out of control.

Using humour wisely You may imagine that there can’t possibly be anything to laugh about if someone has a major illness such as cancer. But humour can help us deal with difficult things. Laughter can help to relieve emotional tension. Laughing at what feels threatening is a way of bringing it down to size, gaining perspective and helping people feel more in control and able to deal with their situation. It may also help the person feel like their normal self.

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If your relative or friend wants to tell jokes and laugh about things that have happened to them during their illness, remember that humour can be a healthy response to their situation. It will help them if you go along with it, even if you find it difficult.

Being positive It’s quite natural for people to feel frightened, upset and sad when they’ve been diagnosed with cancer or are having treatment. Some people think that being positive can help cure cancer or make the treatment more successful. They may worry that feeling sad and having negative thoughts or emotions may make the treatment less successful, make the cancer grow faster or make it more likely to come back. Although the development of cancer may be influenced by our thoughts, feelings and attitudes, research studies haven’t shown any convincing evidence that positive thinking can make treatments more effective or stop the cancer from coming back. It’s also important to remember that cancer is influenced by many other things, such as our environment, smoking habits, diet and genetic make-up. No one can feel positive all the time – it’s all right to have times when you feel negative. If you believe that your relative or friend needs to be positive to get rid of the cancer and the cancer comes back, they may think that it’s their fault because they weren’t positive enough. If a cancer does come back or can’t be cured, it’s often beyond their control. Cancer is a complicated illness, and even with modern treatments, not all cancers can be cured.

Allowing your relative or friend to be sad or upset It’s important to allow your relative or friend to be sad or upset at times. You may find that they want to talk about difficult topics, such as the chances of being cured, whether it’s worth having another course of treatment or making a will. You may want to say things like, ‘Oh, don’t worry, it will all be okay.’ or ‘Of course the cancer won’t come back; try to be positive.’ This is understandable, but it may make them feel that you don’t want to talk about their feelings.

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Talking to someone with cancer

They could then end up feeling isolated and saying nothing. It may help to say something like, • ‘I can understand you feeling low with the chemotherapy making you feel so ill.’ • ‘It’s hard to look ahead when you’re not sure what will happen.’ This will allow them to continue talking about what’s important to them. If they cry, saying something like, ‘It’s okay; it’s fine to cry’ will tell them that you’re not put off by their tears. Sometimes touching, holding hands or giving a hug may help too. Tears are a natural response to distress – they can be a helpful release of inner tension for your relative or friend. Some people don’t want to cry because they feel that once they start, they won’t stop. This is not true, as feelings come and go.

Counselling Some people have repeated episodes of anxiety and depression at some point during their lifetime. If your loved one has struggled with anxiety or depression in the past and they develop cancer, they may have more intense feelings and reactions. In this case, they may be better helped by a trained counsellor. Their GP or the hospital staff will be able to refer them for counselling. Some support groups also have counsellors. If your loved one or friend has counselling this doesn’t mean that you can’t visit, listen or talk with them. Your input will still be valuable.

Religious and spiritual support People who are very ill may start to question their beliefs about life and its meaning. This may happen whether a person has a particular religious faith, is agnostic or is an atheist. It’s important to distinguish between religion and spirituality. Religion concerns a particular faith, such as Catholicism or Buddhism. Spirituality has a wider meaning and applies to everyone. Spirituality means different things to different people, but some people may think of it as anything that relates to the ’inner soul and being’. A person may describe a piece of music, watching a beautiful sunset, a book that means a lot to them or being in love as something that has spiritual significance for them.

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When people are seriously ill, they may feel emptiness, despair or hopelessness. Listening to and being with your relative or friend can really help support them at this difficult time. You don’t need to share a particular belief system to support them in this way. If your loved one has concerns about their religion or spirituality, they may wish to speak with a hospital chaplain or other spiritual leader.

More information and support More than one in three of us will get cancer. For most of us it will be the toughest fight we ever face. And the feelings of isolation and loneliness that so many people experience make it even harder. But you don’t have to go through it alone. The Macmillan team is with you every step of the way. To order a copy of Lost for words – how to talk to someone with cancer or one of the other booklets or cancer information sheets mentioned here, visit be.macmillan.org.uk or call 0808 808 00 00. We make every effort to ensure that the information we provide is accurate and up to date but it should not be relied upon as a substitute for specialist professional advice tailored to your situation. So far as is permitted by law, Macmillan does not accept liability in relation to the use of any information contained in this publication, or thirdparty information or websites included or referred to in it. © Macmillan Cancer Support 2013. Registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Registered office 89 Albert Embankment, London, SE1 7UQ

REVISED IN AUGUST 2013 Planned review in 2016

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