Aboriginal resources

• Resources to support First Nations carers and communities

Cancer information

• Cancer Council 13 11 20
• Cancer Council podcasts
• American Cancer Society
• Cancer Australia
• Cancer Research UK

Carer services 

• Carer Gateway (1800 422 737)
• Carer Help
• Carers Australia
• Services Australia
• Young Carers Network

Counselling services

• Cancer Council counselling services
• Australian Psychological Society
• Beyond Blue (1300 22 4636)
• Carer Gateway Counselling Service
• Your general practicioner can offer support
• Griefline
• Kids Helpline (1800 55 1800)
• Lifeline (13 11 14)
• QLife
• Suicide Call Back Service (1300 659 467)

Home help

• Call your local council, talk to your palliative care team or call Cancer Council 13 11 20
• Carer Gateway
• My Aged Care
• Talk to your palliative care team and/or health fund

 Legal and financial information

• Cancer Council’s Legal and Financial Referral Service (13 11 20)
• Advance Care Planning Australia
• Centrelink (132 717)
• National Debt Helpline (1800 007 007)

Palliative and respite care

• Carer Gateway
• CareSearch
• Palliative Care Australia

Support groups

• Cancer Council Online Community
• Face-to-face and telephone support groups (call Cancer Council 13 11 20 for more information)

Carers often help with medical care. You may:

• Attend medical appointments and treatment sessions
• Advocate for the person with cancer
• Help the person deal with symptoms, prescriptions and medicines
• Look after paperwork on their behalf

Carers often provide practical care. You may:

• Provide transport to medical appointments
• Prepare meals
• Do shopping
• Look after the home
• Care for children, parents and pets
• Help with personal care (showering, dressing and toileting)
• Arrange for aids and mobility equipment

An important part of the carer's role can be to provide emotional support. You may:

• Offer companionship and be a good listener
• Provide encouragement, comfort and understanding
• Arrange professional support if needed
• Talk about things other than cancer
• Keep family and friends updated

Legal and financial challenges can add to the stress of being a carer. You may:

• Pay bills
• Investigate sources of financial support
• Arrange professional legal and financial advice
• Help the person plan for the future
• Help organise legal documents
• Talk about end-of-life plans and wishes

As a carer, one of your key roles is to help the person you care for communicate with their health care team and make decisions. At times, you may also need to speak on behalf of the patient, if that is what the person you care for would like.

Most cancer centres now have multidisciplinary teams (MDTs) made up of specialist doctors, nurses and other health professionals. The MDT is there to support the person with cancer and their carers. Learn more about your health care team.

Try keeping a notebook to record which members of the MDT are responsible for what area of care. Having a key contact person in the MDT to answer your questions, such as a cancer care coordinator, can help you feel more comfortable.

Dealing with health professionals can be intimidating, especially if this is new for you. Having a regular general practitioner (GP) can help you and the person you are caring for find a way through the health care system and be a source of support.

Before the visit

• Ask the person if they want you to go to the appointment with them.
• Write a list of the questions you both have so you don’t forget them during the appointment.
• Work out the most important questions to ask first as time may be limited. Ask for a longer appointment if you have a lot of questions.
• Keep a record of all the medicines the person is taking, including any vitamins, over-the-counter medicines and complementary therapies. Take it with you to the appointment to discuss with the health professional.
• Check with the receptionist that the health professional has received any test results. Ask for copies so you can take them to other appointments.
• Write down any recent changes in the person’s condition or symptoms so you can discuss these with the health professional.

During the visit

• Take notes or ask if you can record the discussion on your phone.
• Check anything you don't understand. Write down any specific instructions.
• Check what changes you should watch out for and what to do if they happen.
• Ask who to contact about any changes or treatment side effects, including an after-hours contact number.
• Ask the health professional if they can give you printed material or tell you where to find more information.
• Look over your list of questions to check that they have all been answered.
• Ask about follow-up plans, test results, appointments and referrals.

After the visit

• Review your notes and discuss the visit with the person you are caring for. If you have any questions, call Cancer Council 13 11 20.
• Follow up about the test results as agreed at the appointment.
• Record the next appointment in a diary or calendar.

Cancer itself can cause a range of symptoms, and cancer treatments often cause side effects. Some common symptoms and side effects include pain; fatigue; breathlessness; nausea and loss of appetite.

Carers often help the person they are caring for manage these issues. You can also call Cancer Council 13 11 20 to find out more about these and other common side effects experienced by people with cancer.

Some side effects go away quickly; others can take weeks, months or even years to improve. Some side effects may be permanent. It is important not to compare the person you are caring for to others.

Late side effects are problems that develop months or years after treatment finishes. Talk to the person’s doctor about whether they are at risk and the symptoms to watch out for. Ask for a survivorship care plan, and see Living well after cancer.

Some cancer treatments increase the risk of getting an infection. You may need to ask family and friends with a cold, COVID-19, the flu or other contagious infections not to visit while they have symptoms.

The treatment team will let you both know of any side effects that need to be closely monitored and when to contact them. Issues that require urgent medical attention include:

• a temperature of 38°C or above
• chest pain or breathlessness
• severe nausea or vomiting that lasts more than a few hours
• redness or swelling around the site of an injection or wound
• confusion
• severe headache with a stiff neck
• chills with shaking or shivering
• severe abdominal (belly) pain, constipation or diarrhoea
• unusual bleeding or bruising, such as heavy nosebleeds, blood in the urine (wee) or black faeces (poo)
• not being able to control the bladder (incontinence) or having trouble passing urine and/or leg weakness
• rash or skin lesions
• any serious unexpected side effects or if the person suddenly gets a lot sicker.

Pain

• Support the person with cancer to use pain medicines appropriately. Immediate release medicines work quickly but for a few hours. Slow release medicines provide pain control for a longer period of time, often 12–24 hours.
• If the pain is hard to manage, when you give pain medicine keep a record of the dose and time so you can discuss this with the treatment team. 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 and the person you are caring for understand how strong the pain is and the need for extra doses of pain medicine.
• Try hot water bottles or heat packs (check the temperature first), ice packs or gentle massage to relieve pain and discomfort.
• Complementary therapies such as massage or meditation may help.
• See Understanding cancer pain and listen to our “Managing Cancer Pain” podcast episode.

Fatigue

• Help the person to set small, manageable goals for the day. Suggest they take regular breaks before they become too tired.
• Encourage the person to prioritise activities that they enjoy.
• Find ways for the person to do some gentle physical activity every day – talk to the treatment team about what sort of exercise would be suitable.
• Help them set up a calm sleeping environment.
• Investigate services that can help with household chores, cooking or gardening.
• See our Understanding fatigue and cancer fact sheet.

Breathlessness

• Use a handheld fan to direct a 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.
• Set up a recliner chair to help the person sleep in a more upright position.
• Offer regular drinks throughout the day. Dehydration can contribute to breathlessness.
• Talk to the treatment team about breathing exercises, equipment and ways to manage breathlessness.
• Maintain a calm atmosphere, when possible, as anxiety can make breathlessness worse.
• Ask a doctor or GP about seeing a psychologist to help manage anxiety.
• Encourage them to try relaxation and meditation techniques to help reduce anxiety.
• Listen to our Finding Calm During Cancer podcast.

Nausea and loss of appetite

• Focus on creating a pleasant atmosphere for meals, sitting together and talking.
• Celebrate how much the person eats rather than comment on how much is not finished.
• 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 meal 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 meals or snacks every 2–3 hours during the day.
• Provide regular drinks to help the person avoid becoming dehydrated.
• If the person you care for is losing weight or feels too nauseated to eat, talk to their doctor. The person may need medicine changes or a review by a dietitian or pharmacist to arrange dietary supplements.
• See Nutrition and listen to our “Appetite Loss and Nausea” podcast episode.

The person with cancer may be taking several different non-prescription and prescription medicines throughout the day.

It is common for carers to provide help with medicines, and important to use medicines safely. Knowing the answers to the following questions can help save time and confusion:

• What is the names of each medicine and what is it for?
• How much should be given (the dose) and when?
• 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 medicine?
• Does the medicine interact with other prescription or over-the-counter medicines, vitamin supplements or complementary therapies?
• Are there any possible side effects? What should I do if the person has 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 medicine be stored?
• What should I do with any unused medicine?

Let the person's health care team know about any side effects. They may be able to adjust the dose or change the medicine.

Ways to manage medicines

It can be hard to remember what medicines you need to give to the person you are caring for. There are different ways to help ensure you give the correct dose at the right time.

Keep a medicines list – A medicines list can help you keep track of what each medicine is for and when it should be given. It can also help health professionals understand what is being used, which is important in an emergency. You can:

• create your own list on paper or online
• ask their doctor or pharmacist for a list
• download the MedicineWise app onto your tablet or smartphone to create a medicines list and set medicine reminders.

Get help from the pharmacist – The pharmacist can prepare a blister pack which arranges all the doses that need to be taken throughout the week. They may also sell containers you can use to organise pills.

The pharmacist can keep prescriptions on file to make it easy to get repeats made up, and can provide electronic prescriptions. If the person has a lot of electronic prescriptions, talk to the pharmacist about registering for an Active Script List.

Track prescriptions – When you fill the last repeat of a prescription, make a note to see the person’s doctor for another prescription. This helps ensure you don’t run out of medicines, particularly after-hours.

Visit Healthdirect to find information about specific medicines or call 1300 MEDICINE (1300 633 424) to talk to a pharmacist.

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 also help:

• 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.
• Consider helping the person with cancer set up an online My Health Record to store their important health care information in one place. You may be able to apply to manage their account as the authorised representative. 
• Consider using an app to store medical records on a smartphone or tablet. The Australian Government’s my health app can be connected to My Health Record.

Treatment can weaken the body’s immune system, so it is important to follow good hygiene and food safety practices. Wash your hands with soap and water before preparing food, and take special care when handling raw meat, fish and chicken.

If you are feeling unwell, ask a family member or friend to prepare meals instead. Use online tools such as Meal Train and Gather my Crew to help coordinate meal giving.

You may notice the person you care for is experiencing changes in appetite or difficulties chewing and swallowing. 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, focusing on their appetite can increase their anxiety, so gentle encouragement is best.

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, such as nausea or sores in the mouth.

See our Nutrition,  Understanding taste and smell changes and Mouth health.

If the person you are caring for becomes unwell or frail, you may need to help them make changes to their home to make it safer for them to do everyday activities, care for themselves and prevent falls.

This may include adjustments such as moving furniture to make access easier, removing loose rugs and other tripping hazards, putting handrails on the stairs or in the bathroom, or putting a chair in the shower.

Talk to the occupational therapist or physiotherapist on the treatment team about aids or equipment you may need and options to buy or rent. Examples include:

• hospital beds, pressure mattresses or lift chairs
• commodes, over toilet frames, bedpans and urine bottles
• bathing equipment, such as shower chairs or bath boards
• mobility equipment, such as 4-wheeled walkers, pick-up frames or walking sticks
• carts with wheels to carry things.

If the person you’re caring for needs help to get into or out of bed or a chair, ask a physiotherapist to show you how to do so safely. They can suggest equipment or techniques to help the person move.

You may also have to take on other family responsibilities, or arrange for someone else to take them on. These may include caring for children and parents, housework, gardening, shopping or looking after pets.

A person may need help with bathing, toileting and dressing while you are caring for them. There are aids or equipment available (see previous page) 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. You can also call the National Continence Helpline on 1800 33 00 66.

Some carers feel uncomfortable providing personal care, particularly for their parents or adult children. The person with cancer may also prefer that a professional helps with these tasks.

To find out how to arrange visits from a professional, talk to a social worker on the treatment team or call Cancer Council 13 11 20 . You can also review the person’s insurance policies to see if they can help with home care services.

• 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 any advice.
• Try not to make comparisons with other people's situations.
• Use humour to relieve tension, if appropriate.

• Let the other person know that you care about them and want to resolve your differences.
• Be honest about what you're thinking and feeling.
• 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.
• Talk about your expectations. 
• 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.

• Centrelink benefits – including the Carer Payment and the Carer Allowance. 
• Hardship programs – most electricity, gas, water or phone providers offer flexible payment options to customers who are having trouble paying their bills.
• Victorian Patient Transport Assistance Scheme (VPTAS).
• The Victorian State Government's Multi Purpose Taxi Program (MPTP).
• Superannuation – you or the person you are caring for may be able to access superannuation early.
• Cancer Council's Legal and Financial Referral Service.