Talking with family and friends

Thursday 1 December, 2016

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Talking about your feelings can be hard. However, people often cope better with a diagnosis of advanced cancer when they’re open with family members and friends about their fears and concerns.

Partners

In this section, the term ‘partner’ means husband, wife, de facto, same-sex partner, boyfriend or girlfriend.

The emotional support provided by a partner can affect how you cope with the diagnosis. 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. This may be because of several factors, including an uncertain future, financial worries after the diagnosis, and social isolation.

There may also be role changes for both of you. Your partner may try to protect you by doing everything for you, which can challenge your sense of independence. Or you may not be able to do things you used to do, which can lead to feelings of frustration and helplessness. These feelings are common for people diagnosed with advanced cancer.

Some studies suggest that partners experience levels of distress similar to or greater than those of the affected partner, and as a result may feel depressed and anxious. Share your feelings about how you’re coping with the diagnosis, and give them the opportunity to do the same. 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. It can help if you still 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 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, without meaning to be hurtful.

When things are tough, 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 appreciate their support and that you understand that it’s tough for them too.

Often the partner is the main carer, and will need support with emotional, practical and physical concerns. For more detailed information, see information for carers.

"The experience of having good communication with my partner was a blessing. It was the total difference in being able to cope." – Kaye
Sexual 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. Physical contact, such as hugging or holding hands, can provide comfort. Over time, you may have questions about your sexual and intimate life after cancer.

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 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 this first step is hard, ask your doctor, nurse or therapist to suggest ways to help make sexual intercourse easier. 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.

See Sexuality, Intimacy and Cancer or call Cancer Council 13 11 20.

Physical and emotional intimacy

Physical and emotional intimacy can provide comfort at difficult times. A sense of closeness can come unexpectedly. A kiss from a child, a hug from a friend, or a caring touch from a nurse could make a difference to your day.

Parents

Your parents are likely to feel overwhelmed and helpless when they first hear of your diagnosis. Regardless of the child’s age, most parents have a strong desire to protect their son or daughter. It may take your parent a while to adjust. They will also have to deal with the emotions of other siblings or family members.

Parents of young children and adolescents play a big role in their care and may become their advocate during treatment. Parents of an adult child with cancer may not have a clear role, and they may feel excluded if others take precedence in caring for you.

How to talk to parents
  • Explain current treatments. This may lessen any fears and misconceptions from their past experiences with cancer.
  • Talk openly about your feelings. You may avoid discussing your worries with your parents to avoid upsetting them. It’s also an opportunity for them to express their emotions.
  • Let them know what help you need, and be honest if you want independence to make your own decisions.

Friends

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. Let friends know that it’s okay to talk about something other than cancer.

How to talk to friends
  • Set boundaries 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.
  • Change the topic if friends volunteer information you’re not comfortable with, e.g. alternative therapies, a friend or celebrity who has had a miraculous recovery.

Children

To help understand the diagnosis, children need age-appropriate explanations. 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 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.

Once children know the cancer is advanced, they will need to be given some idea of the prognosis.

Young children

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 know 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.

To read more suggestions about discussing cancer with children, see Talking to Kids About Cancer or call Cancer Council 13 11 20.

How to talk to young children
  • Listen and be alert to their feelings, this gives you an idea of what they can handle.
  • Communicate feelings as well as facts.
  • Give simple, honest answers, and clarify any confusion.
  • Explain what will happen next and give children realistic hope, e.g. that the family can still enjoy time together.
  • Don’t make promises you may be unable to keep.
  • Reassure them that they didn’t cause the cancer.
  • Try to keep family routines and boundaries as normal as possible.
  • Provide extra physical and verbal expressions of love. Children may become clingy, angry or withdrawn – all are natural reactions.
Teenage children

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 concentrates on the sick person. Instead of focusing on themselves, teenagers may be required to deal with the needs of the family. Because of these pressures, there may be outbursts over trivial things. Teenage children may feel upset by how unfair the situation seems and also react to feelings that they are not really aware of, or cannot acknowledge, like anger, guilt or grief.

How to talk to teenage children
  • Encourage them to talk about their feelings, but understand they may find it easier to confide in friends, teachers or other trusted people.
  • Help them find ways to express their feelings in different ways, e.g. listening to music, playing sports, writing in a journal.
  • Negotiate role changes in the family.
  • Keep their routine as normal as possible – school, homework, activities and social outings.
  • Provide resources for learning more about cancer and getting support and counselling, such as Canteen’s website.
Adult children

Adult children may feel overwhelmed 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 have to juggle other responsibilities (e.g. a job or caring for children of their own) or they live far away.

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 may make you feel uncomfortable, particularly if you need help with feeding or bathing. However, your adult children may see it as their opportunity to look after you and show their love.

How to talk to adult children
  • Provide information about your condition to your grown-up children to help them cope with their feelings.
  • Involve them in decision-making about treatment or activities you want to continue. They may have valuable input.
  • Discuss ways your children might be able to help you, while still managing their other responsibilities.
  • Organise or make time to spend with your children so you can create meaningful memories together.

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 or overwhelmed. Sometimes putting things into words makes it seem more real, and you may not feel ready to address some of these concerns. Everyone handles a cancer diagnosis in their own way. If you don’t want to talk, your wishes should be respected.

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 others 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 or making something creative like an artwork or a song. This can help you to release your emotions if you find it difficult to talk to others.


Reviewed by: Dr Maria Ftanou, Lead Clinical Psychologist, Peter MacCallum Cancer Centre and Research Fellow, Melbourne School of Population and Global Health, University of Melbourne, VIC; Dr Kathryn Dwan, Senior Policy Officer, Palliative Care Australia; Alison Hocking, President-Elect, Oncology Social Work Australia, VIC; Philippa Kirkpatrick, National Policy Manager, Palliative Care Australia; Prof Liz Lobb, Professor of Palliative Care (Allied Health), Calvary Health Care, Kogarah, NSW; Caitriona Nienaber, 13 11 20 Consultant, Cancer Council WA; Hamish Park, Consumer.
Updated: 01 Dec, 2016