Living with Advanced Cancer
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Living with Advanced Cancer
Others in your life
It can be difficult to tell people you have advanced cancer. There is no easy way to share the diagnosis, but you may find it helps to practise what you are going to say.
How your family and friends react to your diagnosis will vary, and they may not react in the way you expect them to. They may need time to adjust to your diagnosis. They may also have similar fears and anxieties, and need as much information and advice, as you. Sometimes family members may feel more distressed than the person with cancer. This seems to be more common when there is a lack of communication between the person diagnosed with cancer and the people close to them.
You can guide your friends and family on how much you want to talk about the illness and the different issues you want to think about or plan together. Although you may want to protect the people you care about, sharing the news can often bring you closer.
Family and friends as carers
Family and friends may also care for you. They may not see themselves as a carer, rather that they are simply helping out as a natural part of their relationship with you.
Some people willingly accept the extra responsibilities; others may feel pressured out of a sense of duty. Caring for a person with advanced cancer can be challenging. The demands on your carers may increase as the cancer advances, and they will need support with emotional, practical and physical concerns.
Download our booklet ‘Caring for Someone with Cancer’
The effect on people close to you
You may sometimes feel that the hardest part about having advanced cancer is the effect it will have on your family and friends.
The emotional support provided by a partner can affect how you cope with the diagnosis. How you talk with your partner about cancer depends partly on how you’ve always communicated. Many relationships can be challenged by a cancer diagnosis. This may be because of several factors, including an uncertain future, financial worries after the diagnosis, and feeling isolated.
Some studies suggest that partners have levels of distress similar to or greater than those of the person with cancer, and as a result partners may feel depressed and anxious. Being open and honest can help you and your partner through any anxieties, sadness and uncertainty, and your relationship may become stronger.
At times, you and your partner may not share each other’s feelings, attitudes or opinions, and this can lead to tension. You may find it difficult if your partner doesn’t want to talk about the diagnosis or your treatment options with you. They may unconsciously distance themselves as a way of coping or protecting you, without meaning to be hurtful.
You could try telling your partner what you need most from them. Many people say that their biggest single need is for a sympathetic listener. Remind your partner that the important thing is not what they say but to be there and to listen. Let them know you are grateful for their support and that you understand it’s tough for them too.
Changes in sexuality and intimacy
We are all sexual beings, and intimacy adds to the quality of our lives. During the initial shock of diagnosis, sex might be the furthest thing from your mind. Over time, you may have questions about how cancer can affect your sexual and intimate life.
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 contact for fear of hurting you, or you may avoid physical contact for fear of rejection.
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 desired, you may find physical closeness in other ways, such as cuddling, stroking or massage. Talk with your partner about your feelings and concerns about the sexual changes in your relationship, and acknowledge the changes in intimacy.
There is no easy way to start this conversation, but it is important to let children know what is happening. It’s natural to want to protect children, but they will often sense something has changed. If you’ve explained cancer and its treatment before, it might be easier to start the discussion. However, you might find it hard to talk about the cancer spreading and being difficult to treat.
The conversation may be easier if you think about the questions children may ask and work out a response beforehand. To help understand the diagnosis, children or grandchildren need age-appropriate explanations. These suggestions may help:
- Be honest and explain your prognosis using straightforward words.
- 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 depending on their age, children may respond differently. This may range from displays of love and offers of help to withdrawal.
- Discuss ways your children might be able to help you, while still managing their other commitments or responsibilities.
- Organise or make time to spend with your children so you can create meaningful memories together.
You may find your friends are invaluable in providing emotional and practical support. If you are not close to your family or if they don’t live nearby, friends can be particularly helpful.
Some friends can listen to whatever you say – complaints, hopes, fears, wishes – without judging you, and without trying to cheer you up or giving advice. Others may avoid you or seem reluctant to talk about the diagnosis. These suggestions may help:
- 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 friends offer information you’re not comfortable with (e.g. details of an alternative therapy used by a friend or celebrity who has had a surprising recovery), change the topic or let them know you are comfortable with the care provided by your treatment team.
Ways to manage other people’s reactions
- If roles become reversed – Talk about changes to avoid misunderstandings; discuss ways to meet each other’s needs.
- If your partner starts doing everything for you, and this affects your sense of independence – Explain that it’s important for you to still feel involved at home and with the family, even if you can only do small tasks.
- If everyone hides feelings to protect one another – Try to be open and honest and tell other people what you need most from them.
- If others are overprotective or won’t leave you alone – Set boundaries to maintain your sense of independence.
- If they refuse to believe the prognosis – Give family and friends time to come to terms with the prognosis. Ask if they’d like to speak to your health care team.
- If they avoid talking about the diagnosis because they think they may upset you – Guide others on how much you want to talk about the diagnosis and whether you’re interested in discussing other topics.
- If they ignore you or stay away – Make others feel more comfortable by letting them know you’re interested in keeping in touch.
Listen to our ‘Family Dynamics and Cancer’ podcast episode
When you don’t want to talk
You may find that you don’t want to talk about your fears and concerns with family and friends. This may be because you feel uncomfortable discussing private matters, you don’t have the words to describe how you feel, or you fear becoming upset. Sometimes putting things into words makes it seem more real, and you may not feel ready to discuss some of these concerns.
Everyone handles a cancer diagnosis in their own way. If you don’t want to talk, other people should respect your wishes.
Ways to share how you’re feeling
If you are having trouble talking to others about personal issues, you can share the experience in the following ways:
- Let others help – Try to allow friends and family to provide support, as this can help you adjust to your situation and cope better with your own emotions.
- Join a support group – Talking about your fears and concerns with people who are going through a similar experience can often be easier. Join a support group, talk to a health professional or call Cancer Council 13 11 20.
- Express your feelings creatively – Explore your feelings by writing in a journal, creating artwork or composing a song.
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This information is reviewed by
This information was last reviewed December 2019 by the following expert content reviewers: Prof Nicholas Glasgow, Head, Calvary Palliative and End of Life Care Research Institute, ACT; Kathryn Bennett, Nurse Practitioner, Eastern Palliative Care Association Inc., VIC; Dr Maria Ftanou, Head, Clinical Psychology, Peter MacCallum Cancer Centre, and Research Fellow, Melbourne School of Population and Global Health, The University of Melbourne, VIC; Erin Ireland, Legal Counsel, Cancer Council NSW; Nikki Johnston, Palliative Care Nurse Practitioner, Clare Holland House, Calvary Public Hospital Bruce, ACT; Judy Margolis, Consumer; Linda Nolte, Program Director, Advance Care Planning Australia; Kate ReedCox, Nurse Practitioner, National Clinical Advisor, Palliative Care Australia; Helena Rodi, Project Manager, Advance Care Planning Australia; Kaitlyn Thorne, Coordinator Cancer Support, 13 11 20, Cancer Council Queensland.