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The effect on people close to you
Living With Cancer Education Program
When you realise your cancer is unlikely to be cured, you face big changes. Your body, mood, beliefs, relationships and other major aspects of your life are likely to be affected.
Many people experience a ‘roller coaster' of emotions when they realise what they are facing. These emotions include numbness, fear, anguish, sadness and anger.
It can seem easier or ‘healthier' to turn away from painful thoughts and feelings. Perhaps people urge you to ‘accept' the situation. But if you sometimes do feel acceptance, it can disappear as you wait for a test result, if someone lets you down or if you just feel bad.
When you try to ‘think positively', sometimes your feelings will not match the optimistic thoughts you focus on. Whatever you feel, you feel. There is no right or wrong approach.
‘When I'm low, I often think I will scream if one more well-meaning person says "Be positive!". However, even when I'm low, I can decide to take positive action ... Miraculously, taking positive action will often turn you around and you find yourself laughing and celebrating life all over again.'
After a while, as you work your way through the challenges, a sense of achievement can emerge.
‘I got rid of all the garbage I'd been living with for years and I became the person I was meant to be.'
You might feel concerned about the financial impact of advanced cancer. Money problems will make it harder to cope with other fears.
You may need advice about negotiating leave from work or obtaining an early superannuation payment. Whether or not you are employed, you may be eligible for a sickness or disability payment. Speak to a social worker or see Services and Information.
It is likely to be very hard when you tell people close to you about what is happening.
‘Telling people was difficult before. This time it was absolutely terrible. They're hearing it fresh; they haven't had time to come to terms with it.'
And while you get on with your life, the people around you may move more slowly; or not at all. Families tend to want to protect you, wrap you up in cotton wool and keep you from further harm. There may be an atmosphere of things unspoken, because the pain could be too great for all of you. This is a sure way to prolong the pain. Sharing fears can be a great relief.
‘She worried about us and we worried about her, each side certain it would be too much for the other to bear ... none of us would talk about it when we were all together. We kept up the charade until the end.'
Another reaction is for family or friends to ‘back off'. They might not be able to cope with the idea that things have changed for you. It is also a reminder that all life is fragile. They may ‘block out' things that are too painful to contemplate.
‘Workmates couldn't cope in the beginning-they were embarrassed, formal, evasive. "Stuff this," she said. "I'm only missing a few mammary glands, I haven't had a lobotomy. Bloody cancer's not catching, you know."'
You may find that someone who you thought was a good friend stops contacting you. This can be very hurtful, but it is quite a common experience for people with advanced cancer. Other friends may respond with understanding and openness, and become even closer.
Some people will not know how to respond. You can speak frankly to them, or just treat people as you always have. Your friends or family may begin to take their lead from you.
If you know you can rely on family support, you are fortunate, but it's likely that friends will also be invaluable. If your family is not nearby or helpful, you'll be even more thankful for friends.
‘We were his support network, his confidantes, his family. His real family was thousands of miles away and not really in touch with him. He wasn't in a relationship and lived alone. We had a roster and supported Frank totally throughout his illness. We weren't experts but we enabled him to die at home, which is what he wanted.'
Some friends are able to listen to whatever you want to say - complaints, hopes, fears, wishes - without judging you and without that extra involvement that a partner or relative will feel. They will also be a practical help.
‘Noni assigned us tasks. We were companions, soup makers, drivers, information providers, superannuation sorter-outers. She didn't want washer-uppers. Most of us didn't know each other. We meant to meet, but it wasn't until her memorial service that we actually saw each other.'
The news of your advanced cancer may come when your relationship is shaky and your friends are all you've got. You'll probably find that, even though they can't all manage it, there will be a few who can go the whole distance with you.
If you live alone and your friends are caught up with their work or families, or they live at a distance, you could call on community services that arrange for volunteer visitors to visit people's homes. Or you might strike up a friendship by joining a support group. These new friendships can quickly become close.
‘People have shown concern in so many ways: by holding my hand after surgery, letting me cuddle their babies and play with their kids, leaving messages on my answering machine, emailing their best wishes, and by not being too afraid to ask how I am.'
People might be eager to offer help when they first hear what has happened. But it can be a problem if your friends want to protect you rather than help you preserve your independence. Even when your friends are genuinely willing, it can be hard to ask for help. Few of us like to appear needy.
Some people find it easy to directly ask for help. Others say how nice it would be if they didn't have to ask-if others would ‘just do it'.
‘It was hard for me to ask my friends to drive me. If I ever have the opportunity to help someone, I am going to be the transportation chairman and line up drivers for chemo.'
Some people will prefer doing active things for you, such as cooking a meal or visiting the library; others may be good at keeping you company. People you know from your current or past workplace may be able to help by keeping you in touch with what is going on at work. But sometimes you might need friends and family to help by staying away for a while.
‘We badly needed quiet times to gather our thoughts and strength ... To give us the respite we needed, we photocopied and sent out updated messages to concerned friends as required.'
Home based palliative care services are available in most areas and can provide care and support to enable you to live life as fully and comfortably as possible. To find out what home help is available in your local community, go to Services and Information.
It is common for everyone to want to spare children pain. You may delay telling them what is going on, or even feel it is better to let them expect that things could return to normal.
Children always know that something is wrong. So they will need explanations they can understand. If you have explained cancer treatment to them before, it might be easier now.
Children will want to know in advance that you will be staying in hospital at times or needing spells of bed rest at home. They will want to be reassured that even when you are no longer there, there will always be someone to care for them.
‘When she explained to five-year-old Katie that she would not be there much longer, Katie asked, "But who'll pick me up from school?". "Someone very special. Someone you'll like very much," her mother answered.'
If you are a sole parent, it may be especially hard to plan, and you might want to discuss your situation with someone who can offer expert advice, for example, the hospital or community social worker.
Children of any age can feel responsible for your illness. They may think they did something wrong and caused you harm. If the children in your life are acting strangely, look for any suggestion of guilt and reassure them that the disease is no one's fault. They might also fear the same thing happening to them or to someone else close to them.
Like younger children, teenagers can feel abandoned as the family focuses on the sick member. If their behaviour seems hard to fathom, they may be reacting to feelings that they are not really aware of, or cannot acknowledge, like anger, guilt or grief.
Instead of focusing on themselves and learning how to be independent of parents, teenagers are now confronted with the needs of other family members. Because of these pressures, there may be outbursts over trivial things.
‘There is always a flickering flame of anger springing from the perceived unfairness of having to cope with a sick mother. I also experience the further pain of watching my husband becoming the scapegoat.'
Teenage children react in different ways, ranging from withdrawal to offers of help and assurances of love.
‘My son is 14 now, but he still gives me a big hug whenever he goes past. And he says "I love you, Mum" morning, noon and night.'
As with younger children, teenagers need to keep as much of their normal routine as possible-school, outings, holiday activities and homework. This may be difficult to manage when you are feeling unwell and is particularly hard for a single parent. If you have a partner at home, he or she may need to keep on with paid work as well as caring for you, and this can leave little energy for children's needs.
Adult children will struggle, too. You may feel you have to, or want to, carry on as the head of the family, reassuring everyone that things are the same as always. Adult children can become aware of their own childish need to have their parent forever available.
‘That night, while looking at my small daughter as she slept, I cried. I thought, "No! Don't you dare die, Mum. I'm not ready for you to die yet. I still need you." Selfish thoughts? Maybe. But they were real ones.'
It may take a long time for them to get used to the situation-you will probably find that they switch their concern on and off.
It is one of life's most painful experiences to be the parent of someone with advanced cancer. It goes against nature to outlive your children. Your parents are likely to feel overwhelmed with sorrow and helplessness at first. You will have to trust that their life experience and their maturity will support them through this. It may take them a long time to adjust.
‘I tried to tell Mum but she blocked it and I thought, "So be it. She'll feel the pain all in good time. Why force it on her now?"'
We use the word ‘partner' to mean husband, wife, girlfriend or boyfriend. If you have been with your partner for a long time, you will remember other life crises that you have experienced together. This one may be more intense, but you have weathered storms before. Studies of couples where one partner has a life-threatening disease show that good relationships generally stay good and the less strong ones continue to be less strong.
‘We have faced many trials and traumas together, always managing somehow to get round, get over or get under them. There had always been a way out, that is until early in 1991 ... The diagnosis was ovarian cancer, giving a one-in-three chance of survival.'
Often, your feelings and attitudes are not ‘in synch'. This can cause frustration and misery, or it can help you to cope: as each new event presents itself, you may find that one of you expresses hope while the other is more pessimistic. Sometimes it can be hard for partners to help you to make decisions about treatment.
Your partner may overwhelm you by trying to protect you. Equally difficult and painful is the partner who doesn't want to face what is happening.
‘My husband thinks if you talk a lot about it you worry more. He thinks we have to leave this problem and forget.'
Many people who have experienced cancer, particularly when it has occurred over significant periods of time, say that their relationships and roles with partners often undergo a radical transformation. Many conversations may focus on trips to the doctor or treatment options you may be considering. You may even feel that your previous roles as parent, lover, friend or partner have altered with the cancer experience.It is natural to feel that, despite physical and emotional changes, you would like to be valued for who you are and the qualities you bring to the relationship.
Feeling frustrated with not being able to do what you used to is common among people as their cancer advances. But you will risk feeling helpless and then hopeless if you can't take any part in the work of your household.
It may help if you work out what you most need from your partner when things are tough and ask for this. Women often say that their biggest need is for a sympathetic listener; many male partners acknowledge their difficulty providing this.
‘I have often lacked the ability to encourage and to say the right thing at the right time ... On the plus side, I have become quite adept at using the washing machine and the clothes drier.'
Action, even bold action, may be tempting.
'My stepfather, Ian, promptly bought a property miles from anywhere in the outback. My mother hid her own fears and left her job to look after him. In the beginning he was embarrassed by the sad faces and so he found a place where he and Mum could come to terms with his illness in private.'
Sometimes partners find it all too much.
‘My husband finished the marriage three weeks ago. There's just the three of us now. It was pretty rough, and it still is, but look what I've got - the two girls.'
Sex may have been a big part of your life or you may value friendly contact, like hugging, as much as sexual intimacy.
'Every morning we hug and hold one another, gently breathing in unison and feeling close. It helps keep our connection going through the day, when things can get a bit out of control.'
Either way, when you have advanced cancer there will be times when it is difficult to get the kind of closeness you would like.
Your body will probably change. Loss of weight is very common. You might find it hard to accept how you look and think that others will also struggle to accept your body.
‘I hate looking in the mirror now: my once-athletic body withered and shrunken.'
If you have a partner, you may avoid physical contact for fear of rejection. Most people find it is easier to re-establish contact by starting with simple things: just lying close together in bed or hugging gently. If these first steps are difficult, you could ask for expert help. An experienced doctor or nurse counsellor may be able to suggest ways to break the silence and perhaps make sexual intercourse easier. If this is no longer possible or desired, you may be able to satisfy your need for physical closeness in other ways-cuddling, stroking or massage.
‘Apart from discomfort, there was the stinging uneasiness of the radiation burns to her groin area. Consequently there was a waning of interest in sex. Sensuous massage became a tool of communication, gently restoring and relaxing, and increasing our physical contact. Yet we couldn't help feeling that we were missing out.'
‘Your libido does go down and you prefer memories and cuddling to what was previously an active sex life. I am fortunate that Charles, my partner, is so understanding and supportive.'
If the cancer spreads to the bones, you can feel sore all over and not able to tolerate even a gentle hug. Some couples find that simple hand holding becomes an expression of closeness.
Even if you haven't known your partner long, you might find that love and desire help you get around some problems.
Physical and emotional intimacy can keep us all going through difficult times. Whether or not you have a regular partner, you will find that a sense of closeness can come unexpectedly. A timely kiss from a child, or a hug from a friends, or a touch from a caring nurse or doctor as they talk to you, can make all the difference to your day.
It takes time to adapt to the physical and emotional changes you have been experiencing. Even though you may feel different as a person, if you come to accept the changes in your life, you may find new ways to be content in your relationships.
Many people are greatly helped by joining a Cancer Support Group. Here, you and other people with cancer can talk about your deepest wishes and fears.
‘It's good to be able to get together and just talk ... like the support group which Joanne was going to, where they were all living with breast cancer with secondaries so that they could share their experiences, their different treatments and the effect it was having on them.'
When you are still coming to terms with your situation, you may feel reluctant to share your story or listen to other people's. And not all groups will suit you. But if you find one that's right for you, you'll benefit from the close bonds with the other group members.
People talk of the strength they have found in sharing feelings and facing reality. They also talk about the laughter that's a big part of any group. Your hospital may run Cancer Support Groups: check with your doctor, nurse or social worker, or contact the Cancer Council Helpline on 13 11 20.
The Cancer Council's Living with Cancer Education Program provides information on cancer and ways of coping with it. The program runs over one day or several weeks. Groups are small, with plenty of time for talking. Courses are held at hospitals and community organisations throughout Victoria. Contact your hospital social worker or the Cancer Council Helpline. The program is also conducted in languages other than English in some areas.
These groups are free. They usually meet for eight sessions, each of which focuses on a particular topic. Speakers with expertise in many areas are invited. The course is led by trained health professionals, including nurses and social workers. It provides information and support for people with cancer and their friends and families.
‘Attending the Living With Cancer group has been invaluable. All members of the group have similar cancers and have had similar treatments. But I remember an earlier stage when I didn't want information and I didn't want to hear about the experiences of other patients.'
For assistance with locating your nearest program, call the Cancer Council Helpline on 13 11 20..
Research has shown that people cope better with the experience of cancer when they are open about their feelings, for example, when they talk about their anger or fear.
But you are not a statistic and you must do it your own way. Perhaps you are the sort of person who has always kept your troubles to yourself.
‘And amidst this began Dad's cancer battle. About which very little was said. In public, he held his head up high. And fought his battle in his shed.'
Even if you are not in the habit of talking about your personal concerns, you may at some stage want to tell someone-a nurse, your general practitioner or someone else-how it feels. Most people find they need help in learning to live with advanced cancer. It can be hard to share your feelings, and it can also be hard to know what words to use about your condition. Finding the words that feel right for you can help you to talk about your situation. Keep trying until you find the sort of help that you need.
A hugely popular relay-style event that raises money for cancer research.
