Physical changes

Most people with a terminal illness feel extreme or constant tiredness (fatigue). Try to pace yourself and save your energy for the activities that are most important to you. An occupational therapist may be able to help with equipment at home to reduce the energy needed for daily activities such as showering.

Fatigue may affect your ability to think clearly and make decisions. You will also probably be told when you need to stop driving and doing other activities. This can be frustrating, particularly if you are trying to put your affairs in order. You may want to deal with any demanding or practical concerns at a time of day when you have more energy.

While some people sleep a lot at the end of life, others find it hard to sleep, which can make fatigue worse. If you’re having trouble sleeping, it may be because of anxiety, pain, a side effect of a medicine you are taking, or a change in your sleep–wake cycle. Let your doctor or palliative care team know. They may be able to adjust your medicines or offer another medicine to help you sleep. They may suggest you try  complementary therapies such as meditation and relaxation. Improving the quality of your sleep will improve the quality of your waking hours. 

Many people with cancer worry about spending their final days in pain, but not everyone has pain. For some, pain comes and goes. The health professionals caring for you won’t let you suffer with unrelieved pain, and will help you to manage it as much as possible. GPs are experienced in managing pain, and they can seek advice from or involve the specialist palliative care team if required. It’s important not to just “put up with” pain and assume it’s normal. Controlling pain lets you continue activities for longer and offers a better quality of life.

Finding the right pain relief

The way pain is managed depends on the type of pain and its intensity. It may take time to find what works best for you. Your doctor may prescribe a combination of pain medicines. You could be offered:

Mild pain medicine – paracetamol and anti-inflammatory drugs, such as ibuprofen or diclofenac (Voltaren).

Strong pain medicine – opioids such as morphine, oxycodone, fentanyl and hydromorphone.

Other medicines – these include:

• antidepressant and anticonvulsant medicines for nerve pain
• local anaesthetics for severe nerve pain
• certain anti-anxiety medicines, also used for muscle spasms
• a nerve block or epidural (for pain that is difficult to manage).

Sometimes pain medicine can be given as a continuous infusion, where a small needle (cannula) is inserted under the skin and the medicine is delivered slowly by a pump. You can have many types of pain relief at home.

See Understanding cancer pain and listen to Cancer Council's podcast episode Managing Cancer Pain from The Thing About Cancer podcast series.

Many people find they don’t feel like eating as they near the end of life. This may happen because of the cancer itself or symptoms such as pain, nausea, constipation or breathlessness. It can also happen when the body’s energy needs slow down and you don’t need to eat as much.

Eat what you want when you want it – Don’t force yourself to eat. Eating more than you feel like might make you uncomfortable, or cause vomiting and stomach pain. Instead, try having small meals or eating little bits of your favourite foods more often. Soft foods can be easier to eat.

You could also try food-type nutritional supplements. Ask your doctor, nurse or dietitian to suggest something suitable; some are available as ready-made drinks at pharmacies.

It’s common for family and friends to keep encouraging you to eat, as preparing food for you is often how they show they care. They may worry that not eating will make you feel worse. You may need to let them know that you don’t feel like eating, and suggest other ways that they can show their love, such as sitting with you.

As the disease progresses, the body reaches a point where it can no longer absorb or get nutrients from food. You may not be able to eat, and clear fluids such as water or weak tea may be all you want. There will come a time when even water isn’t wanted, and family or friends can help keep your mouth moist. See How you can help in the final stages for ways that others can offer comfort.

Learn more about nutrition for people with cancer.

You may feel sick or have trouble keeping food down, either because of the cancer or because of side effects from medicines you’re taking. This can be distressing but your healthcare or palliative care team can help manage nausea and vomiting with anti-nausea medicines (called antiemetics). These can be taken as tablets or, if swallowing is difficult, as wafers that dissolve on the tongue, as injections under the skin, or as suppositories, which are inserted into the bottom.

I hated certain smells and did all I could to avoid them. My mouth felt very dry, which made food unappetising. Adding extra sauce helped.

Helen

Breathlessness (dyspnoea) is common at the end of life. Breathing may become uneven and noisy in the final days or hours.

Your healthcare or specialist palliative care team will assess the cause of the breathlessness and manage it with medicine or other practical measures. These may include sitting near an open window, having a fan in the room or doing relaxation exercises. Having a comfortable bed, leaning on a pillow while sitting, or changing your position when you’re in bed can also help.

Breathlessness can be distressing, and feeling anxious about it can make it worse. Talk to your doctor about medicines that can ease your anxiety or try relaxation techniques like mindfulness and meditation.

Listen to Cancer Council's podcast episode Managing Breathlessness when Cancer Is Advanced from The Thing About Advanced Cancer series.

As you approach the final days or hours of life, the body’s systems start shutting down. This may affect your breathing, bladder and bowel function, and behaviour. Any changes can be managed to help you feel more comfortable.

It’s natural to feel concerned about others seeing some of these physical changes. Your medical team understand this and can help explain what is happening to your family and friends.

Some people find it reassuring to know more about what might happen in the last stages, when they may no longer be fully conscious, but others find it distressing. If you would like to know more, see Providing physical support.