| Carers & advanced cancer | First reactions | Dealing with changes |
| Palliative care | Common symptoms | Complementary & unproven therapies |
| Death & dying |
Taken from 
When Cancer Won't Go Away booklet for Carers (760kb)
On this page: Why has this happened? | Is he/she going to die? | Taking stock and making treatment decisions | How can I make this better? | Uncertainty is very common | Hope | Maintaining a positive attitude | Being a carer can be tough | Self-care
When you first hear that the cancer is advanced, a range of feel-ings and concerns may overtake you. In time, you'l be able to think more clearly about what'shappened 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 cancer treatment, you may not be all that surprised: perhaps you had a sneaking suspicion that things weren't right. You may even have 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 time is etched in your memory. You have so many questions: What's going to happen now? Are they 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 Or you may be worried that they'll become or are becoming anxious, depressed or withdrawn.
You may be able to support the person with cancer through some or all of these things. Remember you can get help 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 5-year mark and thought "Great, we're in the clear, it won't come back now". But at 5 years and 8 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's happened. The important thing to remember is that neither you nor the person with cancer has done anything to cause the cancer to come back. This is beyond your control.
This is one of the first questions to arise when told cancer has advanced. It may be the first time you consider that they 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're 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.
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.
Feeling that you can't 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're 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're 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 treatment options, how well the treatments work, the health of the person with cancer and the decisions you both make.
This is not very comforting if you're looking for clear answers. You're likely to hear cautious answers, rather than answers that give you false hope.
You may want to ‘fix things'. But you can't change what's happened, and this can be very frustrating. It may be the first time you've faced a problem you can't solve. Feeling powerless and without control is common.
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've 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.
Many people struggle with uncertainty. The future is unknown. Many things may have to be put on hold because you're not sure what's ahead. Try not to make any major changes or big decisions at first.
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 will come and go. It's 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're helpless. Remind yourself that you're coping, however bad you feel. If at any stage you feel that you're not coping, 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. It will help you to know whether you need to make any changes, and to make 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 hope 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're going to support the person with cancer. But be careful of unrealistic or false hopes. A balance between hope and realism is important but sometimes difficult to find.
Even when it's hard 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 won't 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 can't be reached, just try to accept that you differ on this point.
In some of the discussions we've 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 helpful as long as it remains realistic. Try to share your true thoughts and concerns. Try not to keep something to yourself because you fear seeming negative. This doesn't help anyone and invites disappointment.
Carers report that they feel like they're 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're about to stop.
You may be angry, shocked, disappointed, irritable or just ‘not yourself'. You may have conflicting emotions and physical responses just thinking about what's happening. 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 other person's emotions. Anger can be very 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've ‘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:
Remember, carers need to care for themselves too. Physical wellbeing is closely tied to emotional wellbeing. Take time to do the things you normally do 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 devote to them.
For example, continue to play golf, go to the footy, meet friends for coffee or have your monthly massage. If you're 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're away. You can also call on services that provide trained volunteers for home visits.
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've loved to have done the same thing, but he's 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've never done before can be exciting.
Each day brings pleasant moments unrelated to the cancer. Give these moments the attention they deserve. After all, these are the times that shape our lives and give them meaning.
Be realistic with how much you can do. Taking on too many roles could affect your ability to cope. Do what's really important and do less of what isn't. For example, have simple, quick-to-prepare meals and don't be too fussy about the housework.
