| Caring for someone | Cancer that has advanced | First reactions |
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| Unproven remedies | Death and dying |
Taking stock and making treatment decisions
Maintaining a positive attitude
When you first hear that the cancer is advanced, a range of feelings and concerns overtakes you. In time, you will be able to think more clearly about what has happened and work out how you can best respond to each new challenge.
Well, I wasn't really surprised when the doctor said Mum's cancer was back. The pain was in the same spot and she had no energy-just like when she first got sick.
When told that the cancer is advanced or is getting worse despite treatment, you may not be all that surprised: perhaps you had a sneaking suspicion that things were not right. You may even experience a sense of relief, because, 'At least we know now and can do something about it'. But for some people this news will come as a complete surprise. You may think, 'Everything was going so well, the results at the last appointment had all been good, and now this. How could it be?'
You could have knocked me over with a feather when the doctor said the cancer was worse-we were so sure the news would be good.
Whether or not it comes as a surprise, you may be feeling down, worried, confused and even scared and overwhelmed. You may find this period of time is permanently etched in your memory. You have so many questions: What is going to happen now? Is he/she going to die? What about more treatment? What will we tell the kids? Will I be supportive enough? What will I do about work?
For many carers the difficult part is thinking about the impact on the person with cancer. You may worry about whether they have or will have pain, nausea, shortness of breath or lack of appetite. Or you may be worried that he or she will become or is becoming anxious, depressed or withdrawn. You may be able to support the person with cancer through some or all of these things. Remember there is help available from nurses, doctors, social workers, psychologists and your friends: you don't have to do everything alone.
People to contact if you need advice or support:
As well as having to manage your own reactions, you may also have to break the news to other family and friends. This can be extremely difficult and exhausting.
You may be asking, 'Why has this happened?'. Your friend or relative's cancer may be back or getting worse soon after the initial diagnosis and treatment, or it may have returned after several years.
We got to the five-year mark and thought "Great, we are in the clear, it won't come back now". But at five years and eight months it was back.
Cancer is a complex disease and its course is hard to predict. Your doctors may be able to help you understand what has happened. The important thing to remember is that neither you nor the person with cancer has done anything wrong. This is beyond your control.
My mind said I should wait until my wife brought up the subject of dying, after all it was her death we needed to discuss not mine. But my heart was breaking, I really needed to know how she was feeling and to tell her how scared I was. In the end my mind won.
This is one of the first questions to arise when told cancer is active again. It may be the first time you consider that your friend or family member will not be cured and that the cancer will never go away.
These thoughts can grow out of intense feelings of fear, anger, guilt and sadness.
If you are thinking along these lines, the person with cancer is probably thinking the same thing. But sometimes it can be really difficult to talk about dying or things that frighten or worry you.
Feeling that you cannot talk about it can be very stressful. A friend, family member or health professional may be able to help. There may come a time when you are both ready to talk about these issues and you can share your thoughts and feelings.
I felt that we had just had our future chopped off. Our time together was going to be limited; we didn't know how long but we knew it wasn't going to be another 10 or 15 years together. I found that extremely hard to take, but once again we could talk that through among ourselves. We got on with doing things as much as we possibly could.
For some carers the news that cancer has advanced will hit like a sledgehammer. Most people need to take some time and allow the news to sink in. For some people, treatment for advanced cancer can keep the disease in check for months or years, without curing it. For others, treatment can help control symptoms such as pain. Treatment decisions are still very important, whatever the stage of the cancer.
When you are ready, gather information about your options. You may be the one who asks many of the questions and gathers the information, especially if the person with cancer is unwell. Don't be afraid to ask questions and clarify the answers as many times as necessary. You will both be making big decisions based on this information.
The doctors and nurses may not be able to give definite answers to your questions. Some answers unfold over time, depending on the available treatment options, how the disease responds, the physical condition of the person with cancer and the decisions you both make.
This is not very comforting if you are looking for absolute answers. To the best of their ability, no one will give you answers that are incorrect. The people you are dealing with are more likely to err on the side of caution rather than give you false hope.
A common and natural reaction is to want to make things better: to 'fix things'. You can't change what has happened-this can be very frustrating. It may be the first time you have faced a problem you cannot solve.
This was one of the few times in my life when I couldn't just fix the problem. All my skills, my possessions, money-nothing could change what was happening to my wife; I have never felt so helpless, or maybe I should say inadequate.
Try to focus on what you can do. You can:
The only certainty may be uncertainty.
The future has become less predictable. Many things may have to be put on hold because you are not sure what is ahead. It is important not to make any major changes or big decisions at the moment.
My first reaction to Mum's illness was to have her move in with us, cancel our holiday and prepare to give up work to care for her.
The anxiety that accompanies uncertainty will come and go. It is important to learn how to deal with anxiety. This can mean trying not to focus on negative thoughts. You may need to practise turning your thoughts to what you can do rather than feeling that you are helpless; and remind yourself that you are coping however bad you feel. If at any stage you feel that you are not coping, you could speak to a health professional or a friend.
'I remember having to pull over in the emergency lane on the freeway on my way to work one morning. It was all too much for me-waiting for the next scan, the blood results. What would we do if the results were bad?'
Information helps many people feel they have some control over a situation. You may find when you have all the necessary information that things are not so bad and that only minor or temporary alterations to your current situation are needed. If things do turn out to be as bad as you feared, at least you will be making decisions based on all the facts.
Feeling hopeful is vitally important for people with cancer and for those around them. As the disease progresses, what you hope for may change. When cancer is first diagnosed, people hope for a cure. But when cancer advances or returns, the hope may be for relief from pain, for treatment to slow the growth of the cancer or for the person with cancer to enjoy good days with family and friends. Some people find hope in their religious beliefs, and others describe feelings of hopefulness that are difficult to explain to others.
To destroy hope can leave people feeling vulnerable and less able to keep going. You need to feel hope if you are going to support the person with cancer. But you may be vulnerable to unrealistic or false hopes. A balance between hope and realism is important but sometimes difficult to find.
Even when it is difficult to find something to be hopeful about you can still provide hope by reassuring the person with cancer of your continued love and support. Sometimes, 'I'm here', 'I love you' or 'I care about you' are the most supportive words you can say.
For many people, a positive attitude is as important as having hope. It helps people get through difficult times: to cope and to face the future.
You and the person with cancer will not always agree that what you see or hear is positive. Acknowledge these differences and discuss them if possible. You may come to understand each other's view and settle for a middle position. If agreement cannot be reached, just try to accept that you differ on this point.
In some of the discussions we have had she said, "Look, I don't want negative people around me", so I tried to maintain a positive attitude the whole time myself.
Just like hope, having a positive attitude is very helpful as long as it remains realistic. Being unrealistically positive may prevent people from sharing their true thoughts and concerns. They may keep something to themselves because they fear appearing negative. This doesn't help anyone and invites disappointment.
Carers report that they feel like they are on a roller coaster. Some rides are filled with extreme highs and lows. Sometimes there is time to get off and have a break but at other times the ride takes off again just when you think you are about to pull up at the platform.
You may be angry, shocked, disappointed, irritable or just not yourself. You may have physical responses just thinking about what is happening to your relative or friend. You may feel sick, unable to concentrate, tense, 'on edge', have headaches and have trouble sleeping. As well, you may have to deal with the emotions of the person with cancer. Anger can be particularly difficult.
The physical and emotional strain of caring for someone who is sick will wear the strongest person down. There may be times when you feel like you have 'had enough'. You may even find yourself wishing the person would 'hurry up and die' so you can get some rest and some time to yourself.
I just wanted it to be over. I was tired to the bone and to be honest I was fed up; I had had enough. It's bloody hard work doing what I did-washing, medicine, the house, doctors' appointments, cleaning up after she was sick. You name it, I did it. But then I felt bad; I shouldn't have wished her dead.
Try not to feel guilty when you feel 'fed up'. These are normal responses to a stressful situation. Some things you can do include:
Physical wellbeing is closely tied to emotional wellbeing. Take time to do the things you normally do for yourself that help relieve the pressures of the day. The time you take out from attending to a person with cancer strengthens you for the time you must devote to them.
For example, continue to play golf, go to the footy, meet friends for coffee or have your monthly massage. If you are hesitant to do these things because it means leaving the person with cancer alone, ask a friend or neighbour you trust to stay with them while you are away. Leave a contact number so you can be reached if necessary.
Don't feel guilty about caring for yourself-you are important and deserve to be looked after as well.
It took a while before I could leave him to go for a walk with a friend. I guess I felt guilty because I knew he would have loved to have done the same thing, but he is just not strong enough any more.
Caring for yourself is also a way of caring for the person with cancer. Many people who are unwell like to see those around them continue to enjoy themselves. It actually makes them happy. They want you to take care of yourself.
There may be something you and the person with cancer have been talking about doing for a long time: like hot air ballooning or going interstate on a mystery flight. If it can be done, do it. Doing something you have never done before can be exhilarating and exciting.
Each day brings pleasant moments and responsibilities totally unrelated to the presence of cancer. Embrace these moments and give them the attention they deserve. After all, these are the times that shape our lives and give it meaning.
Performing too many roles at once can endanger emotional wellbeing and the ability to cope. Examining what is important is one step towards avoiding this danger. For example, having simple, quick-to-prepare meals and being less fussy about the housework may help.
Updated March 2005
