Information & support Living with ovarian cancer Talking to your friends and family . Download this briefing . If you have been diagnosed with ovarian cancer and have close friends and family, they will often want to help and support you. It is important to know that everyone will react differently to the news that you have cancer. . Your family For some family members it may not be a surprise if you have gone through a long process of diagnosis. But it may still be a shock for them to hear you have ovarian cancer. Others may not react immediately; they may find it hard to take in or they may withhold their feelings so not to upset you. If you can, talk to your family in a quiet place so they can express their feelings. They may feel afraid, or sad and angry. You may be feeling the same and thinking, “why me?” This is normal and understandable. Sharing the experience of a cancer diagnosis with those closest to you can help you bear the burden but it can also create other pressures. You may feel responsible for your family’s emotions which can lead to you minimising or covering up the effects of your illness. If you think your closest family are hiding their emotions then talk to them about how it would help you to know how they really feel. It can help to check in with each other regularly and be open about what you are going through. . Talking with your partner A cancer diagnosis changes the lives of everyone in a family or relationship. A partner may be overwhelmed by what has happened. At diagnosis or as treatment starts you might both have concerns about whether your relationship will change, or whether your roles will alter. You may have different thoughts on this so it is very important to talk together. You will have information about clinical appointments, surgery and treatment dates. Going through this together can be a way of starting a much longer ongoing conversation about what your diagnosis means and its impact on your lives. Your partner will probably want to come to your appointments. It can be very useful to have them there to take notes, suggest questions to ask and simply to share the experience with you. Being with you on the surgery date and other treatment appointments can be comforting and reassuring. However, if you would prefer to go to appointments alone, this is also completely normal. How you manage your appointments is up to you. Serious illness can bring people together, but it can also pressure relationships. Your partner may be angry and asking why this has happened. They may have very different ideas about what their role should be. They may cope with their own feelings by distancing themselves from you; or wanting to do everything for you and protect you, which can leave you feeling that you are losing your independence. What you need from them will be individual to you and will change over time, so explain to them what your needs are and keep having those conversations. Physical contact between you can be a great comfort. Our fact sheet 7 has information on sex and intimacy. It is available on our website at: www.ovacome.org.uk/ovarian-cancer-and-sexuality. There is no one way of talking about cancer and the profound changes it can bring. Each relationship is unique and intimate and you will find your own ways of expressing needs and support. . Speaking to your children Whatever age they are, your children will soon know something serious is going on that affects the family, even if they are too young to say so, which means it is important that you talk to them. You may want to protect them from upsetting news, but if you don’t tell them about your cancer someone else may, or they will find out from other sources which could be frightening. It is difficult for a child to discover that someone else knows more about their family than they do. Telling children about your cancer diagnosis will be hard but it will prevent possible misunderstandings. It will also allow children to know what is happening and so feel less anxious. Talking with children about your cancer shows that you trust them and they can trust you, which can bring you closer. Plan what you are going to say and be honest and use simple language. Find out what they already know. Explain what ovarian cancer is, where it is in your body, that the child can’t catch it and, that it isn’t their fault. You may want to say your doctors have told you that your cancer will be treated, and this will take some time and then you will feel a lot better. Also explain about the treatment and what to expect; you may look different and some of their routines may have to change for a while. Think about the questions they might ask and make sure you can answer them. Say that you will try to tell them truthfully what is happening to you. Ask them to tell you when they feel very worried and you can share those feelings together. Younger children may find it easier to talk to you while they are playing. At the end of your treatment it is important to prepare your children for your recovery and let them know it may take some time for you to get back to the usual routines. l Children will respond very differently depending on their age. Under-fives will notice changes in their parents’ emotions and changes to family routine. They may become clingy, go back to much younger behaviours and need a lot of reassurance. Older children may also change behaviour. They may want to help out so let them do this while encouraging them to keep up with their friends and school. Teenagers may also want to help and support you so involve them as you would an adult. They may also feel conflicted and guilty, while needing to help you at home also wanting to be independent and away from the home. Talking to your children and showing your feelings gives them permission to show theirs. Cry if you need to, and voice the anger and frustration you feel at ovarian cancer. Being honest and allowing everyone to express deep feelings can relieve tension. . Visiting you in hospital You may not want your children to see you in hospital, but they may find being away from you even more stressful so ask them what they want to do. Young children may only need a short visit but older ones may want longer and want to spend some time alone with you. Plan the visits and make sure your children are prepared and know you may have drips and be in a ward with people who are also unwell. If it is possible it may be better to meet in a hospital lounge or café. While you are in hospital your children may be comforted by finding little notes and pictures of you at home. You could fix a special time each day for phone calls and messaging. . Telling your parents You may not want to tell your parents about your diagnosis. Often this is because you want to protect them. It is your decision who you share information with. Talking to your parents can be hard as they are likely to be upset and they may wish it was them who are ill, not you. It may help to remember that they will have a long life’s experience that may well already include facing serious illness. If you decide not to tell them think about how you will manage this and be prepared for their reactions if they learn about your diagnosis from other people. . Talking to friends After you have been diagnosed you may want your close friends to know what has happened so that they can support you. You don’t have to tell everyone, you can tell other people later if you want to. It can be exhausting to explain what is happening to you again and again. It may be easier for you to decide what information you want to be known and to ask someone you trust to give it to the people you choose. Sometimes people start a blog or send group emails to share information with friends and family so that everyone can be updated at the same time, when you want to. You can decide how much information you want to give people; you don’t have to answer questions, no matter how well meaning. You can put it off until you feel better and say that you are too tired to explain more. If you don’t want to answer your telephone or update your social media profiles don’t do it. Do remember that your friends are a potential source of comfort and support so try to stay in touch rather than moving away. Talking with trusted friends about your diagnosis can help you to understand your feelings and help with decision making. If a friend offers you help and support it can be helpful to ask for something specific like cooking a meal for you, help in the house, child care, pet care and other tasks you need doing. You may want emotional support which may mean talking about what you are going through or other things unrelated to cancer. Let them know what helps you. While some people are wonderfully sensitive and supportive, others find it difficult to talk about cancer. You may find that some of your friends have no experience of talking about serious illness. They may be embarrassed and unsure and afraid of upsetting you. Even though you may have been friends for years, you can find that some people want to talk about others they have known with cancer which can be inappropriate. They may be keen to share stories with you that are unhelpful or they may just not know what to say. It is fine to be clear about what you do and do not find helpful to talk about. Some people may be in denial, or insist on talking only of positive things. Occasionally people who feel like this will avoid you, which is hard to bear. Remember that a serious life event like a cancer diagnosis is likely to change relationships, but over time these people may relax and become more comfortable with you. . When your treatment ends Some women have found that the time when their treatment has ended can be the most difficult for their relationships with close family and friends. They may assume that your problems are over, that the cancer has gone and normal life can be resumed. But you may be struggling to cope with life after cancer treatment. You may miss the security and reassurance provided by hospital care. You may be tired, depressed and worried in case your illness comes back. You will probably be going for regular check-ups, which may make you anxious. Your family and friends may need to know that even though you may look well and seem to be back to your old self, your life has changed, your body is different and you may feel uncertain about the future. It may be easier to ask a member of your family or a trusted friend to explain this situation if you don’t feel able to talk about it yourself. They can remind everyone of what you have been through and that you still need their kindness and patience. . Further sources of support The Ovacome supportline is available for anyone affected by ovarian cancer, which includes family and friends. The number is 0800 008 7054 or email [email protected] Macmillan Cancer Support provide information on talking about cancer and for those supporting people with cancer at https://www.macmillan.org.uk Maggie’s centres are for anyone affected by cancer, they run Kids Days and Teens Days for children whose parent has cancer. They also run a six week course for friends and family. https://www.maggiescentres.org/how-maggies-can-help/help-available/?category=emotionalsupport Riprap is a website for children and young adults whose parent has cancer http://www.riprap.org.uk/ Hope Support Service is for children whose parent has a serious illness http://www.hopesupport.org.uk/ The FruitFly Collective runs hospital based workshops for children and families on understanding cancer and have age-specific materials you can buy for children: https://fruitflycollective.com . You, your family and friends can also seek support from specialist cancer psychology or counselling services if your hospital offers these. You can also ask your GP about talking therapies that may help you . If you would like to discuss anything about ovarian cancer, please phone our support line on 0800 008 7054 Monday to Friday between 10am and 5pm. You can also visit our website at www.ovacome.org.uk . Reviewed by Dr Jo Ashcroft, Macmillan Clinical Psychologist, St George’s Hospital NHS Foundation Trust . Disclaimer: Ovacome briefings are designed to provide information, advice and support about ovarian cancer to patients and the public. Whilst Ovacome makes every attempt to ensure the accuracy and reliability of the information contained in the briefing, it is not a formal legal document. The information provided is accurate at the time of printing. It is not a substitute for professional advice. Ovacome cannot accept liability for any inaccuracy via third party information from sources to which we link.