Gynaecological Cancer Support | Talking about your cancer

Telling family and friends about your cancer can be very difficult, especially if you are worried about how they will cope with the news. You may be afraid that you will break down and cry when you start talking. You may also be worried that people will let you down if you ask them for help. Often women say that they have always been the one that everyone else came to with their problems. If this is how it has been for you, then you probably don't have much experience of telling others your worries, or asking for their help. Talking to doctors about intimate and personal details can also be confronting. So why do we recommend that you talk about your cancer if it is so hard? The simple answer is that it helps.

Just as the word 'cancer' was shocking to you, it is likely to be frightening for your family and friends. They will be confronted with a number of issues when they hear about your diagnosis. They may be shocked, and afraid that you will die. They may be afraid for you, but also for themselves. Having somebody close to you diagnosed with cancer is a powerful reminder of how fragile our lives are. If it can happen to you - it can happen to them.

A cancer diagnosis can disrupt the strongest of relationships. You may have been friends with someone for years, and felt they were always 'there for you'. Then you are diagnosed with cancer and they seem distant. This doesn't mean that the relationship is poor; it is just that up until now it has not had to face this particular challenge. With the best will in the world, family and friends often find themselves doing or saying the wrong thing, or just not knowing what to say.

Many women find that they want to talk about their cancer, but they find that others don't want to talk about it when they do. You may find people try to change the subject, or tell you not to "dwell" on it.

These reactions from others usually happen because they are frightened. They may also believe that talking about it will make things worse for you. Try telling them that it will help you to talk about your feelings. You may find the section in this website for family and friends helpful. Suggest that they read it, or read it with them.

Other women find that family and friends stop talking to them about the everyday things. Cancer takes over, and they feel as if they are seen as 'the cancer' rather than a woman who has cancer. It is true that, compared to your cancer diagnosis, everything else may seem less important. But the everyday things are the mortar that keeps the bricks of our lives together. If, at times, you want to talk about something other than your cancer, let people know. They are probably afraid to talk about the everyday or unimportant things for fear that you will feel that they are not taking your situation seriously enough.

There may be times when you just don't want to talk about it. This is a normal reaction when you are emotionally overloaded. Just as your emotions probably go up and down, so too will be your need to talk through your worries and fears. Most people use denial as a normal and effective method of dealing with very threatening or overwhelming news. It is only when denial is prolonged - going on for many weeks - and causes a breakdown in communications between you and your family (or healthcare team) that it becomes a problem.

Women who have been through what you are now facing have often said, "You sure find out who your true friends are". This may be a little harsh. If friends and family fail to provide the kind of support you are hoping for, it is often because they don't know how best to be helpful. They want to say something that will make everything OK, or do something to make you feel better. So when you talk to family and friends it is a good idea to set some ground rules.

Tell them that it is OK to not know what to do or say. They don't have to pretend to know the answers. Neither do you.
Tell them that it is OK to talk about your fears and their fears. It will not make your condition worse, and it is likely that, once they have been talked about, they won't seem quite so scary.
If they start talking about an issue that you do not want to discuss with them at the time, tell them so. Tell them that right now you are overloaded, and reassure them that, when you are ready, you will discuss the issue with them.
Tell them that sometimes you may not be able to find the words that express your feelings. We don't always need to talk, a hug can often say more than words.
Tell them that you will need them to help you with specific things. It is not OK for them to say, "Let me know if there is anything that I can do". This is the time when you need to tell them specifically how they can best be helpful.

When people don't know what to say or do, they feel uncomfortable. Being given a practical task can make them feel useful. Here are some suggestions for ways they can help:

Cook some tasty meals that just need heating up for you and your family
Take a bundle of washing and ironing home with them
Take care of your garden
Take you to appointments
Take you out for a coffee or a movie
Send you letters and cards to let you know they are thinking of you
Help with tasks in the house that you are finding difficult
Act as a gatekeeper - it is often a good idea to nominate someone that others can ring to find out how you are. This can take the pressure off you and your family
Be there for your family - see how they are doing
If you have young children - help with getting them off to school and to after school activities.

This section discusses the difficult task of deciding what to tell your children about your cancer diagnosis, its treatment, and the fears and uncertainties you may be facing. Women diagnosed with cancer often find this one of the hardest problems they have to face, as they try to balance their children's need to understand what is happening in the family, with a natural wish to protect them. As a mother, you will have your own ideas about what to tell your children. Every family is unique, and you alone know your children's needs and emotional maturity. Our purpose is to offer information to help you make an informed decision about how you will go about this difficult task.

Even very young children will be able to sense when you are upset
If others know, there is always the chance that they will overhear a remark and be confused and scared
It is better to hear about it from you than from someone else
If you tell them, and reassure them that you will keep them informed, they will be less likely to become overanxious, searching for clues as to how ill you are
If they are not told, children can feel isolated, left out and unimportant
Children may feel that something they did or said has made you sick - you need to reassure them that they did not give you cancer
They may hear things about cancer from TV or school that are scary and be too afraid to talk to you about it unless you have already spoken to them.

Your child may become very sad, and teary. This is understandable. Other reactions may be more confusing
Some children in distress regress to past behaviours (for example: bed-wetting, thumb sucking)
Some children will feel sorry for themselves because they have to take on more responsibilities
Some will be jealous of the attention their mother is getting, then feel guilty because they 'should' be feeling sorry for her
Some children will try to make up for guilty feelings by being especially good and setting impossibly high standards for themselves
Others will become irritable and disobedient
Some children will cling to their mother, afraid that something will happen if they are not there
Some children will withdraw from their mother, unconsciously trying to become more independent in case she is going to die
Some children will laugh and behave inappropriately to cover up their real feelings
Some children will pretend to be ill to get attention, or to avoid being away from their mother
Some children will be afraid that they will get cancer too.
These are all understandable reactions. As upsetting as they may be, these behaviours usually pass with time. Let your children know that you understand and accept them as they are.

Reassure children that cancer is not catching
Reassure them that nothing they did or said caused your cancer
Give reassurance that their needs for love, comfort, physical safety and stability will be met
Answer their questions simply and honestly
Acknowledge that there will be times when they want to talk about your cancer, and other times when they want to take 'time out' and act as if everything is normal
Give frequent updates, even if your children don't ask regularly
Do things together. Watch television together, help with their homework or read them a story
Keep to usual routines as much as possible. The more 'normal' things appear, the less they will be worried
If your children have after school activities, get someone to help with transporting them to and from these
Younger children may become very 'clingy' and not want to leave you. They may want to sleep in bed with you and miss school. While young children will need lots of reassurance, they can sometimes begin to think that things must be really, really bad if they are allowed to do things they were not allowed to do before.

Sometimes it can be helpful for a child to have extra support. Often a trusted friend or family member can help to answer questions and give your child extra attention. There are times, however, when support from someone outside of the family circle is helpful. Children can find their emotions confusing. They may feel scared, angry, guilty, overburdened or left out. They also may be trying very hard to protect your feelings. If you think your child may need extra support, there are a number of resources available.

The Anti-Cancer Foundation in Adelaide has a booklet for children called "What about me". Written in cartoon form, this booklet provides basic factual information about cancer and its treatment, and explores the possible feelings, fears and concerns your children may have. It is designed for them to either read alone, or with you. It can be a useful starting point to explore their issues, and to start answering some of their questions. You or your child can call them for a copy on 1800-188-070. It is also available on-line - see the contacts section for links to this and other useful sites.

Adolescence can be a difficult time for both teenagers and parents. Adolescents' emotions are often complicated, unpredictable and troublesome. When a mother is diagnosed with cancer, and the teenager's behaviour is proving a challenge, it can be really hard to know whether the teenager is acting out because of their mother's illness, or their behaviour is just 'normal' for their age.

Many of the tips and guidelines for younger children are important for older children too.

Give answers that are truthful yet hopeful
Reassure your children that nothing they did or thought caused your cancer, that it's not contagious, and that they will continue to be loved and cared for no matter what happens to you
Enable your children to carry on as normally as possible, and let them know that it's OK to do so
Reassure them that it is 'normal' to feel angry. Many older children resent having to do more around the house. They also resent having to worry about a parent. This does not make them 'bad'. It is normal for teenagers and young adults to be preoccupied with their own worlds, sometimes to the exclusion of everything and everyone else
Reassure them that talking about their feelings and worries is a positive way of coping. If they are finding it hard to talk to you, encourage them to talk to someone close who can support them, such as a relative or family friend
As far as possible, keep to the rules that you had before your illness. Most children try to 'bend the rules', but generally rules and boundaries help to give children a sense of stability
If you ask them to take on more responsibilities, make sure you let them know that you notice and appreciate their help
Teenagers may feel they can't express their angry feelings at home and start 'acting out' at school. Let their teachers know what is happening
Some children will not want you to tell others. This is often so that they can maintain a 'cancer free' life outside of the home. This strategy can be helpful, as it gives them 'time out'. However, it can also mean that your child has no-one to talk to about your diagnosis. You will need to discuss with your child the advantages and disadvantages of this choice.

For many of the same reasons as younger children, older children, even adult children, may need extra support to deal with their emotions. Suggest they read the section in this website for family and friends when someone they love has gynaecological cancer. Many teenagers and adult children have found counselling to be helpful when dealing with cancer in the family. Your treatment team can help them access professional support.

The National Breast Cancer Centre of Australia has developed a useful website for teenagers. It particularly aims to help them understand their emotional reactions to their mother's cancer diagnosis. Although developed for children of women diagnosed with breast cancer, it can be helpful to teenagers whose mothers have been diagnosed with gynaecological cancer. This and other sources are listed in the contacts section of this site.

Following their diagnosis, women often find themselves cast into unfamiliar territory. After your diagnosis, if not before, you will be seeing a range of doctors and health professionals you may never have seen before, who will all play a part in your overall care. At the same time you may be confronted with a whole new vocabulary, sometimes it will feel like you are learning a new language. It may feel as if you are expected to understand things you have never heard of before. All this can add to your feeling of things being out of your control. You can sometimes feel helpless and stupid. There is no reason why you should know what to expect when diagnosed with cancer. No one does. So although the people involved in your care may be very busy, they are used to people asking for explanations.

Ask for the information that you need. This will help you feel better informed.
If you are worried about something - ask. It is better to find out than to worry.
Yes, doctors are very busy, but that does not mean that your questions are a waste of their time.
Take notes, or ask if you can tape record your conversation with your doctor so that later you can go over the information your doctor gives you. Make sure you write down any instructions that your doctor gives you.
If possible, bring a family member or friend along. Not only can they give you emotional support, they may remember more than you can.
If there are any pieces of information or medical terms used that you don't understand, ask for an explanation. The glossary on this page may help you.
Make sure you get all of your questions answered. If you feel that your doctor is rushing you, acknowledge that he or she has a busy schedule and request a follow-up consultation.
Ask who else might be able to provide you with useful information. Others may include other members of the treatment team, local support groups, or other resources in your area.
Let your doctor know of any changes in your health since your last visit, or since starting a treatment or medication.
Let your health care team know of any difficulties that you are experiencing. Try to be specific. For example - if you are having trouble sleeping you might say, "I've always been a good sleeper, but since my last treatment I find I don't get more than 4 hours sleep a night. I lie awake for a couple of hours before I fall asleep, and I wake up at 5am".

Having a question ready for your doctor is really helpful. It is a good idea to let your doctor know at the beginning of your consultation that you have questions. In this way he or she can make sure that there is enough time in the session to address your questions. Write down your questions. Questions that have been running around in your head for days before your appointment can fly right out of your head when you walk through the door of the doctor's office. The questions that follow are frequently asked of doctors following a diagnosis of gynaecological cancer.