Talking about metastatic breast cancer isn’t easy, but good communication can help to hold relationships together. Your family may have no idea of what to say to you, and whether you want to discuss your illness or not. For people who have lost loved ones, your experience may bring up sadness or anxiety for them.

If you have children or grandchildren, you will undoubtedly worry about how they will understand and accept your diagnosis. Information should be adapted to the age and maturity of the child. People often tell us about different resources that they have found helpful in communicating with children and teenagers about what is going on or what might happen in the future.

If there is some conflict between people you love, or open communication has never been easy within your family, a breast care nurse, pastoral care worker, social worker or counsellor may be able to help you get your messages across.

 

Talking to children

There are no easy answers on how to talk about advanced disease within your family – it’s a fine line between ‘protecting’ your kids and being honest. – Hillary

If you have children, especially young ones, concern about their welfare and how they will take the news of your diagnosis can be the most distressing issue of all. You will undoubtedly worry about how they will understand and accept your diagnosis and treatment. It may be difficult for you to find the right words to say to them, and to know how much to tell them. Discussing cancer with children, and how they react and cope, will be influenced by their age and maturity.

Early childhood

I didn’t know what to say about the cancer to the children. We were advised to keep things concrete for them. We have decided to tell them very little about the intricacies of the cancer and just focus on what affects them – things like ‘Mum needs to have a nap sometimes because the treatment makes her tired’, or ‘Mum has chemo at the hospital every week’, or ‘Today Mummy can’t pick you up from kinder because she has a doctor’s appointment’. – Amanda

Young children don’t understand chance or bad luck – they think that everything happens for a reason. It is normal for young children to believe in fairies and magic (think about making a wish when blowing out candles on a birthday cake), but this belief in magic extends to their believing that they can also make bad things happen. If you add these things together it makes sense that a young child might feel that they have done something to cause your cancer.

Most young children don’t have the ability to express these concerns verbally or to seek reassurance. They commonly respond to fear and guilt by behaving badly or reverting to less mature patterns of behaviour. So a five-year-old might become defiant and rough with a younger sibling, or a six-year-old might start to wet the bed. When parents are tired, ill or anxious, it can be hard to see beyond the behaviour to the message behind it; that it is the child’s way of saying ‘I’m scared’.

Sometimes children, and especially girls, respond to anxiety by being extra good, as though this will magically put things right. The danger here is that, while the ‘extra good’ behaviour might be praised, their distress may not be acknowledged.

You can make a real difference by telling your children that the cancer is not their fault. There is nothing they have done to make this happen.

I tell my children that it is no one’s fault I got cancer – it just happened. – Denice

Routine and structure are also enormously reassuring for young children. If you feel exhausted, it can be tempting to let young children stay up late rather than struggle with bed-time. Keeping to a consistent routine as far as possible will help them feel confident and safe. Even though it is an effort to keep to the usual rules, this will ultimately help everyone.

Middle years

My husband contacted the kids’ teachers, as we did the first time round, so that they would be informed. My younger one (then nine) was offered the opportunity to see the school psychologist, which she took up enthusiastically. Once or twice a week, while I was having radiotherapy, she would see him and come home with crafty ‘get well’ messages. Then suddenly she wasn’t seeing him anymore. When I asked why, she said it was because I was better now (i.e. radiotherapy had finished and I was back at work!). It seemed to be a positive experience for her. On the other hand, my 12-year-old was not at all interested in the psychologist option,in keeping with her strong dislike of talking about emotional issues. – Despina

From about eight to 12, children start to realise that sometimes things just happen, and that bad things aren’t necessarily their fault. One of the things that helps children of this age cope with difficulty is helping them to understand what is within their control and what is not. The cancer is not because of anything you did. It is not because of anything they did. You are trying to be well. Tell them it is not up to them to try to fix it.

Although they now seem to have amazing language skills and can talk endlessly about things that interest them, they still need to be able to play. Play and physical activities are important ways for them to cope with strong feelings or worry. If you don’t feel well, it can be a real effort to take children to normal sports activities, but research shows that these sorts of activities help children to cope. Maybe you could ask a friend to take them to sports practice if this is something your children enjoy.

At this age, children start to look for acceptance from others, and children whose family is different for any reason will often be acutely aware of this.

A friend went to her young child’s class to explain why she had no hair – the kids had been asking. I suggested she take some wigs, bandanas and hats to make the session fun. – Denice

Children in this age group often try to be brave, and can feel overwhelmed by their feelings as they struggle to be grown-up. This may be in the face of confronting and intensely distressing comments from other children such as, ‘Your mum has cancer. She is going to die.’ Well-meaning family and friends may tell them to be brave and grown-up, which isn’t helpful, and may discourage them from expressing their feelings.

You might find it useful to discuss with family and friends how you would like them to respond to your children – for example, telling a grandparent that you are okay with your child expressing their concerns, rather than being encouraged to ‘be brave’.

Feeling that they are helping out can really improve children’s confidence, so having a list of chores is generally a good idea. The challenge is to match the chores to the skill level of the child. Giving a child a task at which they are likely to fail doesn’t help anyone.

Adolescence

With their own pubertal development underway, I’m sure there is much ambivalence about breasts. It’s impossible to know how much of that ambivalence is because of my breast cancer. While I’m trying to give the message of ‘isn’t it fun to start developing’, my now 10-year-old is sometimes expressing the ‘I don’t want to develop’ attitude. Would she have felt this anyway? Many girls do – who knows? Obviously, some links can’t be denied, as when my 13-year-old says directly, ‘I’m going to get breast cancer, aren’t I?’ Does she believe me when I give her the truthful answer about the relatively small numbers of genetic breast cancers? Would I, if the situation was reversed? – Harriet

Adolescents are just starting to think in abstract terms, although their ability to think logically often fluctuates. This is the time when they might start to realise how their behaviour affects other people and to be able to see things from someone else’s point of view. Teenage boys can often be the height and weight of a man before the middle of high school – but, of course, their brain hasn’t necessarily caught up with the physical growth. Sometimes we need to remind ourselves that the adolescent brain is a work in progress – for boys and girls!

Being accepted and part of a group is important, and self-esteem can be very fragile. Adolescence is also a time of developing a sense of self and identity, and thinking about adult roles, relationships and responsibilities. Teenagers may need to feel separate from the family, while still needing support and reassurance. They do need to have ongoing social activities and opportunities to have fun – these are the things that will help them cope.

It is common for teenagers to have wildly fluctuating and conflicting demands and expectations of their family – if you don’t ask, you are selfish and don’t care; if you do, you are nosey. Emotions can be felt very intensely, and it is easy to feel isolated. Teenagers whose mother has metastatic breast cancer may feel on the one hand that no one else understands how different their lives are and, on the other, that they don’t want to be treated any differently.

How you can help

We all want to protect our children from pain and sadness, and we want to be there for them. In the first few days and weeks after diagnosis, your feelings are likely to be very intense. It is tempting to feel that keeping the situation secret from children will protect them from worry.

Many people say they try not to cry in front of their children. It might be helpful to reflect on what this means for you and for them. Crying when we are sad is normal. The first, and often hardest, thing is to be honest. Children are often very good at picking up on things and will know when something is wrong.

If you don’t tell them, some kid in the school yard will, and they will have no defences to deal with it. – Lauren

However upsetting, talking is essential, and it is important to help children feel that their needs and concerns will be addressed. They need to hear that they matter too, and that you realise that they are also affected by the diagnosis. Of course you know this, but actually saying it makes a difference.

Children cope best if they have the chance to talk to you about how they feel, including their fears. Telling your children from the beginning that you won’t keep secrets can help them feel less anxious. If your children know that you will always tell them what is happening, they will feel less worried about being away from you for a short time.

Children may ask difficult questions. Think what your children’s questions might mean and find ways to encourage them to talk or share their feelings. It is okay for you all to share even very sad feelings, and it can also give you all an opportunity for greater closeness.

Information should be adapted to the age and maturity of the child. For young children in particular, it may be better to give information in stages rather than all at once. Remember, too, that young children don’t have a good concept of time. When you are four years old, ‘three big sleeps’ till your birthday seems like forever; so saying that something could happen next year has no meaning for them.

You can help your older children to feel supported by discussing with them things that they can do in an emergency – for example, when they may need to call an ambulance or which neighbours or relatives they can ring.

My sons were 9 and 7 when I was diagnosed with early breast cancer. They both remember it being a frightening, long time with me being away from them – I had 4½ months in Melbourne participating in a clinical trial. I don’t think anything we could have done differently would have changed this perception. When I was again diagnosed and had to relocate to Melbourne for six weeks of radiotherapy they were 16 and 14. They moved in with my parents while I was away, but each weekend when I returned home they demanded that we move back into our own home where they would look after me. There was lots of spag bol and cups of tea! Since I was diagnosed with metastatic breast cancer three years ago, they have both taken an active role in my care, including attending doctors’ and oncology appointments and asking questions. Neither of them remembers our life before breast cancer; but now they finally feel in control. – Marlene

Consistency is important for children. This means keeping children to their normal routines as much as possible, and drawing on the support of your partner, family and friends to help out if you are feeling overwhelmed or need any extra help.