About 11% of Australians are unpaid carers who provide care to someone with a disability or illness. The Carer Recognition Act 2010 (Commonwealth) states that carers should have:

• the same rights as other Australians
• recognition and respect
• support to enjoy good health and social wellbeing
• economic security and the opportunity to do paid work and education
• access to appropriate services
• acknowledgement as individuals with their own needs
• recognition as partners with other care providers. 

• Advocate for the person with cancer
• Work with the health care team
• Monitor and report symptoms and treatment side effects
• Keep records of appointments, test results and treatments
• Navigate the health care system, and Medicare and Centrelink payments
• Manage and give medicines.

• Look after the home, keeping it safe and comfortable
• Manage family responsibilities, such as caring for children or parents
• Provide transport to treatment
• Help with personal care
• Encourage exercise
• Prepare meals
• Do shopping
• Look after pets. 

• Help the person see a lawyer to make legal arrangements for the future, such as a will and advance care directive
• Ensure advance care directives are uploaded online and take witnessed copies with you to appointments
• Arrange for the person to get professional advice to help them manage the financial impact of cancer
• Talk about end-of-life plans.

• Offer companionship
• Be an active non-judgemental listener
• Provide encouragement, comfort and understanding
• Arrange professional support if needed
• Keep family and friends up to date
• Negotiate care and responsibilities with others
• Talk about other things aside from cancer.

Before the visit

• Write a list of the questions you both have so you don’t forget them during the actual appointment.
• Work out your most pressing questions as time may be limited. Ask for a longer appointment if you have a lot of questions.
• Do some research so you can ask informed questions.
• Keep a record of the medicines the person is taking, including any vitamins and complementary therapies. Note the dose and any side effects.
• Check with the receptionist that the health professional has received results for scans, blood tests and other tests.
• Record any recent changes in the person’s condition or symptoms so you can tell the health professional about them.

During the visit

• Take notes or ask the health professional if you can record the discussion (many mobile phones have a recording function).
• Write down any specific instructions.
• Check who to contact if you are worried about any changes and ask for an after-hours number.
• Clarify anything you don’t understand and ask where you can find more information.
• Check what changes in the person’s physical condition you should watch out for and what to do about them.
• Look over the list of questions you brought along to check that they have all been answered.

After the visit

• Review your notes.
• Discuss the visit with the person you are caring for.
• Call the health professional for test results, if appropriate.
• Record the next appointment in a diary or calendar.
• Contact the health professional about changes or side effects.

Most cancer treatment centres now have multidisciplinary teams (MDTs) made up of specialist doctors, nurses, and allied health professionals such as physiotherapists, dietitians, social workers and psychologists. The members of the MDT will work together to manage the care of the person with cancer and recommend the best treatment. They may also refer the person to other specialists.

Dealing with health professionals can be intimidating, especially if it’s something new for you. You may feel overwhelmed by all the new information or working out who to talk to about different issues. Try keeping a notebook to record which members of the MDT are responsible for what area of care. You might need to make the initial contact with them if it doesn’t happen automatically. Having a key contact person in the MDT, such as a cancer care coordinator, can help you feel more comfortable.

Many carers talk about how complicated and time-consuming paperwork can be. The social worker at the treatment centre can offer support with this aspect of your role. The following tips may be helpful:

• Set up a system for organising paperwork to reduce stress. Use a folder, expanding file or filing cabinet to organise bills, receipts and letters from health professionals.
• Keep a record of all treatments and test results, and take it with you to appointments.
• Create an online My Health Record for the person with cancer, which means the person’s important health care information is in one place and can be seen by their health professionals with their permission. If the person is not capable of making their own decisions, you can apply to manage their account. You will be known as the authorised representative.

The person with cancer may be taking non-prescription and prescription medicines. Knowing the answers to the following questions can help save time and confusion:

• What are the names of the drugs and what are they for?
• How much should be given and when?
• How much will the medicines cost?
• How should the drugs be given (e.g. with or without food)?
• Is there anything, such as alcohol or driving, that should be avoided while taking the medicines?
• Do the drugs interact with other drugs or vitamin supplements or any other over-the-counter medicines?
• Are there any possible side effects? What should I do if the person experiences side effects?
• How long will the medicines be needed? Will the dose be reviewed?
• What should I do if a dose is missed?
• When is the use-by date, and where is it on the medicine packaging?
• How should the drugs be stored?

The pharmacist can provide a list of all the person’s medicines and when they should be taken, or they can prepare a blister pack, which arranges all the doses that need to be taken throughout the week. The pharmacist can also keep prescriptions on file to make it easy to get repeats.

A medicines list can help you keep track of any medicines. It can also help health professionals understand which ones are being used, which is especially important in an emergency. You can create your own list or download the MedicineWise app.

The Australian Government subsidises the cost of many prescription medicines through the Pharmaceutical Benefits Scheme (PBS). Once a certain amount has been spent on medicines during the calendar year (the threshold amount), the person can apply for a PBS Safety Net card.

You can track what the person you are caring for spends on PBS medicines on a Prescription Record Form, which is available from pharmacists. If they use the same pharmacist, you can ask the pharmacist to keep a computer record instead.

Once the threshold amount has been reached, the pharmacist can give the person a Safety Net card and the PBS medicines will then be cheaper or free for the rest of that year.

Cancer itself can cause a range of symptoms, and cancer treatments often cause side effects. Some side effects go away quickly or after a few weeks, while others may be permanent. Some people experience late side effects. These are problems that develop months or years after treatment finishes. They may result from scarring to parts of the body or damage to internal organs.

A person’s body will cope with treatment and recovery in its own way. Let the treatment team know of symptoms and side effects – they will often be able to suggest medicines and other treatments that can help.

Some side effects need to be closely monitored. Issues that require urgent medical attention include:

• a temperature of 38°C or above
• chest pain or shortness of breath
• persistent or severe nausea or vomiting
• redness or swelling around the site of an injection
• confusion
• severe headache with a stiff neck
• chills with shaking or shivering
• severe abdominal pain, constipation or diarrhoea
• unusual bleeding (e.g. nose bleeding for over 30 minutes)
• incontinence or trouble passing urine and/or leg weakness
• any serious unexpected side effects or sudden deterioration in the person’s health.

Pain

• Encourage the person to take medicine as prescribed to keep on top of the pain. Contact their treatment team if the pain is hard to manage. It may take time to find the right pain medicine.
• Always talk to the doctor before stopping or changing the dose.
• Use a pain scale or pain diary to help you understand the intensity of the pain and the need for extra doses.
• Try relieving pain and discomfort with hot water bottles or heat packs (check the temperature first), ice packs or gentle massage.
• Understand the different roles of long-acting and short-acting pain medicines and support the person with cancer to use them appropriately.
• Listen to our 'Managing Cancer Pain' podcast episode.

Nausea and loss of appetite

• Encourage the person you are caring for to ask their doctor for different anti-nausea medicines until they find one that works well for them.
• Offer the person their favourite or well-tolerated foods often. Most people don’t need a strict diet during cancer treatment, though you should follow the advice of the health professionals.
• Offer small, simple meals. Provide nutritious snacks and drinks throughout the day.
• Focus on creating a pleasant atmosphere for meals and sitting together and talking.
• Celebrate the small amounts the person eats rather than how much is not finished.
• If the person you care for is losing weight or feels too nauseous to eat, talk to their doctor to identify the cause.
• Get support from an accredited practicing dietitian.

Breathlessness

• Use a handheld fan to direct a cool stream of air across the person’s face.
• Place a pillow on a table so the person can lean forward with an arm crossed over the pillow – this allows their breathing muscles to relax.
• Help the person relax to control anxiety that contributes to breathlessness. You can also ask a doctor or GP about seeing a psychologist.
• Talk to the treatment team about breathing exercises, equipment and treatments to manage breathlessness.
• Set up a recliner chair to help the person sleep in a more upright position.

Fatigue

• Help the person to set small, manageable goals for the day, and suggest they take regular breaks before they become too tired.
• Encourage the person to say no to activities they really don’t feel like doing.
• Find ways for the person to do some gentle physical activity every day. See an exercise physiologist or physiotherapist for suggestions.
• Establish a regular bedtime routine and set up a calm sleeping environment. Ensure the room is dark, quiet and a comfortable temperature. Soothing music helps some people drift off.

Treatment can weaken the body’s immune system, so it is important to follow good hygiene and food safety practices. You may notice the person you care for is experiencing changes in appetite or difficulties chewing and swallowing. They may feel nauseated, or they may have mouth or throat sores that make it painful to eat.

Cancer treatment can also change the taste and smell of food. At times, the person may not be able to eat even their favourite foods. While you may want them to eat well during treatment, focusing on their appetite can increase their anxiety, so gentle encouragement is best. If family and friends offer to help by preparing meals, let them know what type of food to prepare.

Nausea and poor appetite can last for several months after treatment ends. A dietitian, doctor or nurse can provide advice on a suitable eating plan and medicines that can help manage side effects.

If the person you are caring for becomes unwell or frail during treatment, you may need to make some changes to their home to make it safer for them to do everyday activities. This may include small adjustments such as moving furniture to make access easier, putting handrails on the stairs or putting a chair in the shower.

Talk to the occupational therapist on the treatment team about aids or equipment you can buy or rent. If you need to lift the person you’re caring for, or help them get into or out of bed or a chair, ask a physiotherapist to show you how to do so safely. They can suggest equipment you can use to make lifting easier.

You can ask family and friends for help with housework or arrange help through community services. This will free up time for you to spend on caring or other responsibilities. Social work services are also available through Services Australia. If the person you are caring for is 65 or over, contact My Aged Care for an assessment.

A person may need help with bathing, toileting and dressing at various times during and after the course of treatment. There are aids or equipment available to make bathing and going to the toilet easier. If treatment means the person has trouble with incontinence (accidental loss of urine or faeces), talk to a continence nurse or physiotherapist for exercises to strengthen pelvic floor muscles or about protective bed covers and pads.

Some carers feel uncomfortable providing personal care themselves, particularly for their parents or adult children. Or the person with cancer may prefer that a professional assists with daily personal tasks. To find out how to arrange visits from care workers to help with these tasks, talk to the social worker on your treatment team or call Cancer Council on 13 11 20.

• Cancer Council's Legal and Financial Referral Service.  
• Services Australia's Financial Information Service.
• Centrelink benefits – including the Carer Payment and the Carer Allowance. 
• Victorian Patient Transport Assistance Scheme (VPTAS).
• Superannuation – you or the person you are caring for may be able to access superannuation early.
• The National Disability Insurance Scheme (NDIS) – for Australians aged under 65 who have a permanent and significant disability.
• GP management plan – people diagnosed with cancer may be eligible to claim through Medicare for up to five allied health service appointments a year.
• Hardship programs – most electricity, gas, water or phone providers offer flexible payment options to customers who are having trouble paying their bills.

• Sit somewhere private where you will not be interrupted.
• Make it clear that you are there for as long as needed, e.g. switch off your mobile phone.
• Maintain eye contact.
• Listen carefully to what may be behind the words. Try not to think about something else or plan what you will say next.
• Acknowledge that this is a difficult time. Ask open questions to help you understand how the other person is feeling.
• Avoid interrupting or changing the subject.
• Allow the person to be sad, upset or cry. You don’t have to keep them happy all the time.
• Check your understanding of what they’ve said by repeating information or paraphrasing.
• Wait to be asked before giving advice.
• Use humour to relieve tension.

• Let the other person know that you care about them and want to resolve your differences.
• Try to talk through the issues calmly. Hear each other out and work towards a solution, rather than seeing the other person as the problem.
• Choose your battles – it may help to focus your energy on the issues that really matter.
• If a discussion becomes heated, take a break and talk later when you are both calmer.
• Arrange for others to take on the caring role for a short time.
• Ask your GP or treatment team for a referral to a social worker, counsellor or psychologist who can help you manage the conflict.