Managing symptoms

Emotional reactions to palliative care

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.

Depression and advanced cancer

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 13 11 14.

Changes in relationships and lifestyle

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.

Seeking support

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 Council 13 11 20.

Understanding cancer 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.

Pain relief options

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 implanted devices, 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.

Managing pain effectively

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 palliatively. Your health care team will monitor you to avoid potential side effects. Any side effects, such as constipation or drowsiness, can usually be managed. The aim is to give enough medicine to be able to 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.

Short acting vs. long-acting pain medicine

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

When to seek further help

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.

For more on this, see Pain and cancer.

Many people with advanced cancer do not feel like eating or drinking. This may be because of the cancer or a side effect of treatment. Loss of appetite may also be caused by anxiety, fatigue or depression. However, having food and drink helps maintain your strength and bowel movements, which improves your quality of life.

Loss of appetite

You don’t need to force yourself to eat. This may make you feel uncomfortable, and cause vomiting and stomach pain. Try having small meals, eating your favourite foods more frequently, and relaxing your usual dietary restrictions. It is common to feel less hungry as the disease progresses – talk to your palliative care team or dietitian if you are concerned. They may suggest you drink nutritional supplements.

Sometimes towards the end of life, eating is less important. If you are moving less often, your need for fuel will be less too. It might be important to save your appetite for your favourite foods or just sit with family and friends during mealtimes.

Nausea

You may feel sick (nausea), have reflux or have trouble keeping food down, either because of the cancer or as a side effect of a medicine you’re taking. You will probably be given anti-nausea medicine that you can take regularly to relieve symptoms. Finding the right one can take time – if you still have nausea or vomiting after using the prescribed medicine, let your palliative care team know so they can see what may be causing the nausea, adjust the dose or try another medicine. Constipation can also cause nausea and appetite issues.

Having an empty stomach can make your nausea worse – try to eat something soon after getting up in the morning and then eat small meals and snacks regularly throughout the day. Avoid fried, greasy, spicy and strong-smelling foods. Try to drink water or other fluids, and consider eating foods with ginger or sipping ginger tea.

Difficulty swallowing

If chewing and swallowing become difficult, you may need to change the consistency of your food by chopping, mincing or puréeing. A speech pathologist can check how well you’re swallowing and advise the best food texture.

For more on this, see Nutrition and cancer.

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 is when you feel very tired, weak, drained and worn out. 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 or sleep. Fatigue can be caused by the cancer itself, cancer treatment, depression or 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.

It is 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.

For more on this, see Fatigue and cancer.

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 – look for our Finding Calm During Cancer podcast in Apple Podcasts or any other podcast app
• 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.

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 on this, see Sexuality, intimacy and cancer.

• Ask your palliative care team for a list of medicines and what each one is for.
• Ask your pharmacist to put your tablets and capsules into a medicine organiser (e.g. Webster-pak), which sets out all the doses you need to take throughout the week. This will help you take the correct dose of each drug at the right time.
• Keep a medicines list to record what you need to take, when to take it and how much to take.
• Download the MedicineWise app from the App Store or Google Play to keep track of medicines, or create your own list on paper or on a computer. You will also find helpful information about medicines at nps.org.au.

Your doctor or nurse may suggest you take part in a clinical trial. Clinical trials test new or modified treatments to see if they are better than current methods.

For example, if you join a randomised trial for a new treatment, you will be chosen at random to receive either the best existing treatment or the modified new treatment.

Over the years, trials have improved palliative care and the management of common symptoms of advanced cancer.

You may find it helpful to talk to your specialist, clinical trials nurse or GP, or to get a second opinion. If you decide to take part in a clinical trial, you can withdraw at any time.

For more information, see Clinical trials and research and to find current clinical trials near you, visit Cancer Institute NSW or Australian Cancer Trials.