Managing symptoms

One of the main aims of palliative treatment is to relieve your symptoms, as they can impact your quality of life and be distressing for your loved ones. While it may not be possible to lessen all of your symptoms, the suggestions in this chapter can help make you as comfortable as possible.

It may take time to find the most effective treatment. Let your palliative care team know if a treatment is not working, as they may adjust the dose or offer an alternative. For more information and links to support, call Cancer Connect on 13 11 20.

Your feelings and emotional needs

When you are referred to palliative care or while you are having palliative care, you will probably experience a range of emotions. Many people feel shocked, fearful, sad, anxious, guilty or angry. Some people feel relief or a sense of inner peace.

It is quite common for people diagnosed with advanced cancer to have continued feelings of depression. Signs of depression include trouble thinking clearly, losing interest in things you used to enjoy, or changes to sleep patterns and appetite. If you think you may be depressed, it is important to talk to your doctor, because counselling or medicines – even for a short time – can help.

For information about coping with depression and anxiety, call Beyond Blue on 1300 22 4636. For 24-hour crisis support, call Lifeline on 13 11 14.

You may find that while some friends and family members are supportive, others may avoid you or not know what to say. This can be difficult, and you could feel isolated or upset. Advanced cancer can mean changes to your lifestyle – at some point, you may need to leave work, or perhaps stop driving or other activities that are important to you. These changes can cause further sadness or stress.

It will often help to talk to someone. Your partner, family and close friends may be able to offer support, or you might like to talk to:

• members of your palliative care or treatment team
• a counsellor, social worker or psychologist
• your religious leader or spiritual adviser
• a telephone support group or peer support program
• Cancer Connect on 13 11 20.

Pain

Whether you have pain will depend on where the cancer is and its size. Pain is different for everyone, and even people with the same type of cancer can have different levels of pain. Some people may not have difficulties with pain. Palliative care services are specifically trained in pain management. If you do have pain, they will help you control the distress it is causing as much as possible.

Many people need a combination of treatments to achieve good pain control. Ways to relieve pain include:

• pain medicines, such as non-steroidal anti-inflammatory drugs and paracetamol for mild pain, and opioids (such as morphine, oxycodone, hydromorphone, methadone and fentanyl) for strong pain
• other types of medicine for nerve pain, such as antidepressants, anticonvulsants and local anaesthetics
• anti-anxiety drugs for muscle spasms
• procedures such as nerve blocks and epidurals for pain that is difficult to manage
• other treatments, such as physiotherapy, complementary therapies (such as massage and acupuncture) and psychological interventions (including relaxation, mindfulness, distraction techniques)
• surgery, drug therapies and radiation therapy.

It’s important to treat pain early before it becomes severe. It’s easier to control a lower level of pain and stop it getting worse than it is to treat very bad pain. Being in pain makes you tired and reduces your energy.

Some people worry about becoming addicted to pain medicine but this is unlikely when medicines are taken to relieve cancer pain. Your healthcare team will monitor you to avoid potential side effects, such as constipation or drowsiness, which can usually be managed. The aim is to give enough medicine so you can do your usual activities without causing side effects. Taking high-strength opioids (such as morphine) as prescribed should not shorten your life – people may even live longer with better quality of life when their pain is treated effectively.

Pain medicines can be long acting and short acting. Short-acting medicine is used as a top-up if you’re on a long-acting medicine but still need more pain relief (this is known as breakthrough pain). Keep a diary of your “breakthrough” medicine. This can help your doctor to adjust your dose as needed.

Talk to a specialist palliative care service if the dose you have been prescribed does not relieve your pain. Ask your specialist palliative care team or your GP to regularly review your pain management plan, especially if you have uncontrolled pain or you have side effects from the pain medicine.

Problems with eating and drinking

Many people with advanced cancer do not feel like eating or drinking. This may be because of the cancer, a side effect of the treatment or it could be caused by anxiety, fatigue or depression. It’s a good idea to discuss your situation with doctors or a dietitian so you can maximise your strength and energy and focus on your quality of life.

Bowel changes

Many people have difficulty passing bowel motions (constipation), often as a side effect of opioids, cancer treatments or other medicines, or because of changes to what they’re eating or how much they’re moving.

The usual suggestions for managing constipation, such as drinking lots of water, eating a high-fibre diet and exercising, may not be possible if you feel unwell. Your treatment team will discuss other ways of managing constipation, such as laxatives and stool softeners.

Fatigue

Fatigue is when you feel very tired, weak and drained. Cancer-related fatigue is different from tiredness because it is more severe, not the result of recent physical or mental activity, and usually doesn’t get better with rest. It can be caused by the cancer or treatment, depression, anxiety, poor sleep, an infection, anaemia, weight loss or medicines.

Your palliative care team may be able to adjust your medicines or treat the cause of the fatigue. A physiotherapist, exercise physiologist or occupational therapist can also help with ways to conserve your energy and maintain function.

It’s important to allow time in the day to rest and save your energy for fun or important things. You may find that the fatigue gets worse as the disease progresses – complementary therapies such as meditation and relaxation can reduce distress and help you and your family cope.

Breathlessness

Breathlessness (dyspnoea) may be caused by the cancer itself, an infection, a side effect of treatment, anxiety or an underlying disorder such as asthma or emphysema. Depending on the cause, breathlessness may be managed by taking medicine (such as low-dose morphine), draining fluid from around the lungs, or having oxygen therapy (if your oxygen levels are low).

Other ways to improve breathlessness are to:

• sit near an open window
• use a handheld fan to direct a cool stream of air across your face
• sleep in a more upright position
• listen to a relaxation recording – listen to Cancer Council's Finding Calm During Cancer podcast
• see a psychologist to help you manage any anxiety, if the breathlessness leads to panic
• plan out daily activities and take rest breaks – an occupational therapist can help you plan how to conserve your energy.

Sex, intimacy and palliative care

People with advanced cancer usually experience major physical and psychological changes. While this can have an effect on how you feel sexually, it doesn’t mean that sex or intimacy needs to end.

For many people, intimacy can provide comfort and maintain connection. Even if sexual intercourse is no longer possible or what you want, you may enjoy physical closeness through cuddling, stroking or massage.

If you feel that you can, talk with your partner/s about your feelings and concerns about the sexual changes in your relationship, and discuss ways that you can maintain intimacy.

If you have concerns or need advice about sexual intimacy, talk to your GP, nurse, social worker, counsellor or psychologist. For more information, see Sex, intimacy and cancer.