Talking about your feelings can be hard. However, people often cope better with a diagnosis of advanced cancer when they’re open with trusted family members and friends about their fears and concerns. There are many issues to think about, and how you talk to others will probably vary, depending on their relationship with you.
How you communicate with your partner* about cancer depends partly on how you’ve always communicated. Many relationships can be challenged by a cancer diagnosis. At times, you and your partner may not share each other’s feelings, attitudes or opinions.
When it feels like the right time, sharing your feelings openly and honestly can help support you both through your anxieties, sadness and uncertainty.
There may be role changes for each of you. Your partner may try to protect you by doing everything for you. Or you may not be able to do things you used to do, which can lead to feelings of frustration and helplessness or changes in your sense of independence. These feelings are common for people with advanced cancer.
It can help if you feel involved at home and with the family, even if you can only do small tasks and need to pace yourself.
You may find it difficult and painful if your partner doesn’t want to face what is happening and can’t talk about it with you or help you make decisions about treatment.
When things are tough, it may help if you tell your partner what you need most from them. Many people say that their biggest single need is for a sympathetic listener. It might help to remind your partner that the important thing is not what to say – but to be there and to listen.
* The term ‘partner’ means husband, wife, girlfriend, boyfriend, same-sex partner etc.
Your body will probably change. You might find it hard to accept how you look and think that others will also struggle to accept your body.
Weight loss is common, and if you have treatment such as chemotherapy or radiotherapy you may feel and look fatigued.
Weight gain from steroid treatment can also change how you look and be hard to accept.
Most partners, however, are accepting of these changes. If you feel down about your body, think about all your inner qualities, such as kindness, warmth or a sense of humour, and your different abilities, which are just as important as your physical features.
It might also help to discuss your concerns with your partner, as they may be able to reassure you.
We are all sexual beings, and intimacy adds to the quality of our lives. Sex may have been a big part of your life or you may value physical contact, such as hugging or holding hands, as much as sexual intimacy. Usually sex and intimacy is safe for you and your partner but if you have concerns, check with your doctor or nurse.
There may be times when it is difficult for you and your partner to have the kind of closeness you would like. Depending on where the cancer has spread, or the type of treatment you’re having, you can feel sore all over and not tolerate even a gentle hug.
Some people with cancer avoid physical contact for fear of rejection. And partners of people with cancer sometimes avoid physical contact for fear of hurting their partner.
It takes time to adapt to physical and emotional changes. Most people find it is easier to re-establish contact by starting with simple things, such as lying close together in bed. Some people find holding hands becomes an expression of closeness.
If these first steps are hard, ask your doctor or nurse counsellor to suggest ways to help make sexual intercourse easier. If this is no longer possible or desired, you may find physical closeness in other ways, such as cuddling, stroking or massage.
For more information, see sexuality & intimacy.
Physical and emotional intimacy can keep you going through difficult times. A sense of closeness can come unexpectedly. A timely kiss from a child, a hug from a friend, or a caring touch from a nurse as they talk to you could make all the difference to your day.
It can be a painful experience to be the parent of someone with advanced cancer. Most parents feel it goes against nature to outlive their children. Your parents are likely to feel overwhelmed with sorrow and helplessness at first. It may take them a while to adjust. Information about your condition may help your parents or your grown-up children cope with their own feelings.
You may find your friends are invaluable, especially if your family is not nearby or helpful. Sometimes an advanced cancer diagnosis occurs when your family relationships are shaky. Even if some of your friends can’t deal with your diagnosis, there will be others you can lean on for emotional and practical support.
Some friends can listen to whatever you say – complaints, hopes, fears, wishes – without judging you and without that extra involvement that a partner or relative may feel is necessary.
Children need explanations that they can understand. If you’ve explained cancer and its treatment before, it might be easier to start the discussion. However, you might find it harder to talk about the cancer advancing and being difficult to cure.
Even if they are young, your children will probably suspect that something is wrong. They may notice changes at home, such as your distress or an increase in visitors.
Assure children that the disease is no-one’s fault. Children may think they, or their behaviour, caused the cancer. They might also fear the same thing happening to them or someone else they know.
Children will want to know in advance when you will be staying in hospital or needing rest at home. They will want to be reassured that there will always be someone to care for them.
If you are a sole parent, finding someone to look after your children may be harder. It may help to talk to a social worker about what’s available in your local area.
Teenagers react in different ways, ranging from withdrawal to offers of help and assurances of love. Like younger children, teenagers can feel abandoned as the family focuses on the sick person. Instead of focusing on themselves, teenagers are now confronted with the needs of the family. Because of these pressures, there may be outbursts over trivial things. They may also react to feelings that they are not really aware of, or cannot acknowledge, like anger, guilt or grief.
As with younger children, teenagers need to keep as much of their normal routine as possible – school, homework, outings and holiday activities. This may be difficult to manage when you’re feeling unwell and is particularly hard if you are a single parent. If you’re living with a partner, they may need to keep working as well as caring for you. This can leave little energy for children’s needs.
Adult children may struggle when they find out you have advanced cancer. They can become aware of their own desire to have a parent around forever. They may feel guilty because they can’t meet the different demands on them as parents, children and employees.
You might feel you have to, or want to, carry on as the head of the family, reassuring everyone that things are the same as always. Having to rely on your adult children more and more may make you feel guilty.
For more information and tips on discussing cancer with children, see Talking to Kids About Cancer.
You may not want to talk about your fears and concerns with family and friends. This may be because you think you don’t have the words to describe how you feel, or you fear breaking down if you speak. You may also want to avoid being a burden to others or fear appearing as if you are not coping or you may just be a very private person.
If an illness is prolonged or very debilitating, some people think about euthanasia. This is when somebody’s life is deliberately ended to relieve them of their suffering from an incurable condition or illness.
Euthanasia is illegal in every state and territory in Australia. Nevertheless, it is something that many people consider when they are seriously ill.
Discuss your feelings and concerns with your doctor, family, friends, a counsellor or social worker. Sometimes these feelings are the result of depression or feelings of hopelessness, guilt or loneliness. These feelings can be helped with counselling and/or medical treatment.
Sometimes a person with cancer may decide that they want their death hastened, but later they decide that they don’t. They may have thought that way because they were feeling particularly ill, scared, or worried about the strain they were putting on others.
If you urgently need somebody to talk to because you are thinking about ending your life, call Lifeline on 13 11 14 for free, confidential telephone counselling at any time of the day or night.