Living with Advanced Cancer
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Living with Advanced Cancer
The people in your life
It can be difficult to tell people you have advanced cancer. You might not want to upset them, or you might not know what to say. Although you may want to protect those you care about, sharing the news can often bring you closer.
It’s hard to know how your family and friends will react – and it may not be in a way you expect. Be prepared for different reactions. Sometimes the shock or distress of the news means that people may seem to say the wrong thing, or upset you with how they react. They will probably need time to adjust, and have fears and anxieties, and want information and advice, just like you do.
It’s up to you how much detail you share, but delaying the conversation is unlikely to make it any easier. It can be a positive thing to be in control of what information is given out and when, rather than people hearing the news from others.
You may find it helps to practise what you are going to say. Sometimes family members may be more distressed than the person with cancer, which may be hard to cope with alongside your own emotions.
Explain to family and friends how much or how little you want to talk about the cancer, and any other issues you want to discuss.
The effect on people close to you
You may sometimes feel the hardest part about having advanced cancer is the effect on your family and friends. They may need time to come to terms with the prognosis. You may want family to speak to your health care team, especially if they have trouble accepting the news or will be involved in your care and treatment.
Partners
The emotional support provided by a partner can affect how you cope with the diagnosis. Not knowing what the future holds, financial worries, and feeling isolated can challenge a relationship. And partners can feel just as distressed, depressed and anxious as the person with cancer. Being open and honest with each other may help you both cope with sadness and uncertainty, and your relationship may grow stronger.
Differing emotions, ideas or opinions can lead to tension. Your partner may not want to talk about the cancer or may distance themselves to cope. To avoid tension, tell your partner what you need most. Let them know if listening to you is more important than what they say. Explain that you’re grateful for their support and you know it’s hard for them too. If them doing everything for you is upsetting, tell them that it’s important for you to feel involved, and independent, even if it’s just in small tasks.
Changes in sexuality and intimacy
Humans are sexual beings, and intimacy can add to the quality of our lives and help us to connect. Depending on where the cancer has spread, or the type of treatment you’re having, you can feel sore and find even a gentle hug uncomfortable. Your partner may avoid physical contact for fear of rejection, or out of concern that they will cause you pain. It takes time to adapt to physical and emotional changes. Most people find it is easier to re-establish contact by lying close together in bed. If sexual intimacy is no longer possible or what you want, you may prefer to cuddle, stroke or massage. It can help to talk about your feelings and concerns about any sexual changes in your relationship.
When children take on a caring role
For many families, it’s natural to want to look after a parent-figure, or a sister or brother, if they are unwell. This may also be the most practical option if you’re unwell. But it also means that your child or sibling may help or care for you in a way that you’re not used to.
Being reliant on someone you are used to looking after may be stressful or upsetting. You may feel frustrated or that people are interfering or doing things you never expected them to do. It may seem like an invasion, even if you are grateful for help. Or like you’re being told what to do, when you already feel like you have no control. These role-reversals can be difficult for both sides. Try to be honest about what you are happy for family to do for you now, and in the future. You can consider home help or talk to a social worker about other options.
Being a carer
Anyone who provides care is a carer. Sometimes your family and friends become your carers – even if they don’t see it that way. This shift can be confronting for all.
Caring for a person with advanced cancer can be challenging. Even a short break from a caring role, which is called respite care, can give both of you much needed time out.
The demands on a carer may increase as the cancer advances, so they may need emotional, practical and physical support too.
Talking to children
When you are told you have advanced cancer, one of the biggest worries may be how you will tell the young people in your life. It’s natural to want to protect children, but it is also important to let them know what is happening. They will often sense something has changed, and if they aren’t told what it is, they can become scared or anxious. Talk to them as soon as you feel ready.
If you’ve explained cancer and its treatment before, it might be easier to start a conversation. But you might find it hard to talk about the cancer spreading and being difficult to treat. It might be helpful to think ahead about the questions children may ask and prepare some suitable answers.
How to tell children about cancer
- Be honest and explain what you know about the cancer using straightforward words that suit their age.
- Keep your explanations as simple as possible, and be guided by their questions so you don’t offer more information than they may want or can handle.
- Expect that children may respond differently depending on their age. This may range from displays of love and offers of help, to feeling guilty, withdrawal or acting out and bad behaviour.
- Discuss ways your children might be able to help you, while still managing their other commitments or responsibilities.
- Spend time with your children or grandchildren so you can create meaningful memories together.
Talking to friends
Friends can be invaluable for emotional and practical support, especially if you’re not close to your family or they live far away. Some friends can listen to whatever you say – complaints, hopes, fears – without judging you or trying to cheer you up or give advice. Others may avoid you or not want to talk about the diagnosis.
If friends seem to stay away, they may not know what to say or assume you don’t want visitors. Let them know if you want to keep in touch. They may avoid talking about the cancer, worried it will upset you. You could explain if, and how much, you want to talk about it, or if it’s okay to just discuss other things. If friends are overprotective or won’t leave you alone, it can help to set boundaries to maintain your independence.
Conversations with friends
- Set limits around how much you want to share – you can simply say you’d like to talk about something else.
- Ask friends how they feel about the diagnosis – this gives them permission to discuss the situation.
- Be as specific as possible when friends ask how they can help.
- If you don’t need particular help from friends or family, let them know that their offer is still appreciated and that you might need something in the future.
- If friends offer information or advice that you’re not comfortable with – such as details of an alternative therapy they heard of – change the topic or let them know you are happy with the care provided by your treatment team. You could say that it’s something to consider if you are looking to change your treatment.
Ways to share how you’re feeling
Everyone responds to a cancer diagnosis in their own way. How you feel and how you want to communicate that can also change over time and may depend on how well you feel or what other things are going on in your life. You might like to share your experience using some of the ideas below.
- Choose a key contact – Some people find that having one family member or friend as a central contact person means you don’t have to repeat information. You can tell that person what information you are happy for them to share – and what areas you might need some help with – and then they can manage people’s concerns along with their offers of help.
- Use technology – There are many ways to keep friends and family updated when you don’t have the time or energy to talk with people individually. Use text messages, email, blogs or social media, or write one letter and send copies to friends and family. If you’d like to know what others are up to, then let them know you’d be happy to hear their replies.
- When you don’t want to talk – Sometimes you may not want to share your fears and concerns with your family and friends. This is completely normal. You may feel uncomfortable discussing private matters, struggle to find the words to describe your feelings, or worry that you will get upset. Putting things into words can make it seem more real, and you might not feel ready to discuss some things yet. That’s okay. Rather than ignoring messages, it can help to let people know if you just don’t want to talk at the moment.
- Have open conversations – Some family and friends seem to know when you need to share your feelings, and just when to be there for you. But not everyone can tell when you are having a bad day or need to talk – it may be confusing when there may be days you don’t feel like sharing at all and others that you do. It can help to be open, honest and direct about when you need to share, and what you need most. For example, a text saying you’d like to talk on the phone and is now a good time, or asking if you can catch up in person as you need a hug and someone to listen more than a big conversation.
- Get creative – You can explore your feelings by writing in a journal, creating artwork or composing a song. You can choose whether to share your work or keep it to yourself, or save it as a gift for someone at a later time.
- Join a support group – Talking about your fears and concerns with people who are going through a similar experience can often be easier. Consider joining a support group, talking to a health professional or calling Cancer Council on 13 11 20 to talk to a nurse or counsellor.
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This information is reviewed by
This information was last reviewed December 2022 by the following expert content reviewers: Dr Lucy Gately, Medical Oncologist, Alfred Health and Walter and Eliza Institute for Medical Research, VIC; Dr Katherine Allsopp, Supportive and Palliative Care Specialist, Westmead Hospital, NSW; A/Prof Megan Best, The University of Notre Dame Australia and The University of Sydney, NSW; Dr Keiron Bradley, Palliative Care Consultant, Medical Director Palliative Care Program, Bethesda Health Care, WA; Craig Brewer, Consumer; Emeritus Professor Phyllis Butow, Psychologist, The University of Sydney and Chris O’Brien Lifehouse, NSW; Louise Durham, Palliative Care Nurse Practitioner Outpatients, Princess Alexandra Hospital, Metro South Palliative Care, QLD; Dr Roya Merie, Radiation Oncologist, ICON Cancer Centre, Concord, NSW; Penny Neller, Project Coordinator, National Palliative Care Projects, Australian Centre for Health Law Research, Queensland University of Technology, QLD; Caitriona Nienaber, 13 11 20 Consultant, Cancer Council WA; Xanthe Sansome, Program Director, Advance Care Planning Australia, VIC; Sparke Helmore Lawyers; Peter Spolc, Consumer.