Caring for an adult with a tumour
You may be reading this because you are caring for someone with a tumour. Being a carer can be stressful and cause you much anxiety. Try to look after yourself – give yourself some time out and share your worries and concerns with somebody neutral such as a counsellor or your doctor.
Many cancer support groups and cancer education programs are open to carers, as well as people with cancer. Support groups and programs can offer valuable opportunities to share experiences and ways of coping.
Support services such as Home Help, Meals on Wheels or visiting nurses can help you in your caring role. There are also many groups and organisations that can provide you with information and support, such as Carers Australia, the national body representing carers in Australia. Carers Australia works with the Carers Associations in each of the states and territories. Phone 1800 242 636 for more information and resources.
You can also call Cancer Council 13 11 20 to find out more about carers’ services and get a copy of the Caring for Someone with Cancer booklet.
BrainLink may also have helpful services for carers of people with brain diseases.
Cancer care pathways
For an overview of what to expect during all stages of cancer care, read or download the What To Expect guide for brain cancer (high-grade gliomas). The guide is also available in Arabic, Chinese, Greek, Hindi, Italian, Tagalog and Vietnamese – see details on the site. The What To Expect guide is a short guide to what is recommended for the best cancer care across Australia, from diagnosis to treatment and beyond.
Caring for a child with a tumour
The outcome for your child depends on the type of tumour they have, its location and grade, treatment, and other factors such as their overall health. A significant number of children with a brain or spinal cord tumour will recover completely. In general, children who are diagnosed with a malignant tumour will have a better outlook than adults. Other children have treatment that controls their tumour for many years.
Because a child’s nervous system is still developing, some children may develop a physical, behavioural or learning disability as a result of their tumour or treatment.
Talk to your child’s medical team about the treatment options, what to expect, and any concerns you have. You may also benefit from talking to a hospital social worker, who can provide practical and emotional support to your family.
Try to keep things normal
One of your child’s most important needs will be for as many things as possible to stay consistent. It is important to continue to show your love and support. It may help to keep rules and discipline as normal as possible. Although you may be tempted to relax the rules, this can lead to confusion over time.
A tumour diagnosis can also be difficult for other children in the family. Their routines may also be disturbed and they may feel left out if parents and visitors show more attention to their sibling.
Try to make time to talk to all your children – ask them how they’re coping and thank them for their patience and help. If your teenager has been diagnosed with a tumour, it can be hard not to be protective at a time when they want to be independent. Talk about finding a balance between maintaining regular activities, going out with friends and staying at home.
Who can help?
Many hospital staff members specialise in working with children and young adults (paediatrics). Some hospitals employ staff, such as play therapists, music therapists or art therapists, who can help children cope with the challenges of treatment. Rehabilitation will also be important for your child’s recovery. Organisations like CanTeen and Redkite offer practical and emotional support for families, young adults and children who are affected by cancer.
What should I tell my child?
It is natural to want to protect your child from the news of the diagnosis, but children are quick to listen, observe and learn. Doctor’s visits, tests, and absences from school or activities will let them know that something is different. Talking openly about the tumour will help your child to be less anxious and to feel more in control. What you tell your child will depend on their age and knowledge. See below.
For a free copy of Talking to Kids about Cancer, call 13 11 20.
Newborns, infants and toddlers
Children this young do not understand illness, but will react to being separated from you and changes in routine. They may not be able to talk about it, but they often pick up on physical and emotional changes. Toddlers like to have control over their environment.
- Create a familiar environment that can travel with the child, such as their travel cot and favourite blanket, books and toys.
- Be honest about hospital trips and explain tests that may hurt.
- Give your toddler choices where possible. e.g. “Would you like to wear the red or blue shirt to hospital?”
- If they are in hospital for a period of time, put up some family photographs.
Preschool children, 3–5 years
Children in this age group are beginning to understand the difference between being well and being sick. They often believe their actions can make things happen.
- Assure your child that their thoughts and behaviour have not caused the illness.
- Be honest when talking about the tests and treatments that they need.
- Reassure your child about your love and care for them.
- Bring familiar toys and books to appointments and the hospital.
School-age children, 6–12 years
By this age some children know about cancer, but may not know its causes. They may fill in the gaps with their own theories. They can understand what cancer cells are.
- Be open and truthful so they don’t assume their own interpretations are correct.
- Tell the school about your child’s health and the reasons for any changes in their behaviour or attendance patterns.
- If necessary, seek the support of the student welfare coordinator who may be able to organise extra tutoring or support.
Teenagers, 13–18 years
Many teenagers have an adult understanding of cancer and often want detailed information. They are starting to separate from the family. This is a vulnerable time, as they don’t want to appear different from their peers.
- Provide resources so they can learn more about the diagnosis and treatment of tumours, and get valuable peer and adult support.
- Talk to the school’s student welfare coordinator, who may be able to organise or provide extra tutoring or support.
- Encourage teenagers to talk about their feelings but realise they may find it easier to confide in friends, teachers and other trusted people.
Expert content reviewers:
A/Prof Matthew Foote, Associate Professor, University of Queensland and Staff Specialist, Radiation Oncology, Princess Alexandra Hospital, QLD; Dr Jason Papacostas, Neurosurgeon, Mater Private Hospital, QLD; Dr Dianne Clifton, Psychiatrist and Coordinator of Education, Psychosocial Cancer Care and Palliative Care, St Vincent’s Hospital, VIC; A/Prof Georgia Halkett, Assocaite Professor, Senior Research Fellow, School of Nursing and Midwifery, Faculty of Health Sciences, Curtin University, WA; Lawrence Cher, Neurologist and Neuro-oncologist, Olivia Newton John Cancer & Wellness Centre, Austin Hospital, VIC; Kate Brennan, Occupational Therapist, Princess Alexandra Hospital, QLD; Vivien Biggs, Neuro-oncology nurse practitioner, Briz Brain & Spine, QLD; Lindy Cohn, 13 11 20 advisor, Cancer Council NSW, NSW; Ms Dianne Legge, Brain Tumour Support Officer, Cancer Services, Olivia Newton-John Cancer & Wellness Centre, Austin Hospital, VIC; Russ Talbot, consumer, SA.