You may be reading this because you are caring for someone with cancer. 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 information and resources.
You can also call Cancer Council 13 11 20 to find out more about carers’ services or visit the Caring for Someone with Cancer section.
BrainLink may also have helpful services for carers of people with brain diseases.
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, malignant tumours in children have a better outlook than in 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.
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 of the situation. What you tell your child will depend on their age and knowledge.
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.
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.
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.
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 to their peers.
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.
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. CanTeen, Redkite and ONTrac (Peter MacCallum, Victoria only) offer practical and emotional support for families and children. Some of support is also available to young people who have a parent or sibling with cancer.
Reviewed by: A/Prof Kate Drummond, Neurosurgeon, Divisional Director of Neuroscience and Cancer and Infection Medicine, Director of Junior Surgical Training, The Royal Melbourne Hospital, VIC; Dr Dianne Clifton, Psychiatrist, Psycho-oncologist and Director, Department of Psychosocial Cancer Care at St Vincent’s Hospital, VIC; Dr Anthony Dowling, Medical Oncologist, St Vincent’s Hospital, VIC; Kate Fernandez, Clinical Nurse Coordinator, Central Nervous System Tumours, Women’s and Children’s Hospital, SA; Carmen Heathcote and Yvonne Howlett, Helpline Operators, Cancer Council Queensland, QLD; Dianne Legge, Brain Tumour Support Officer, Cancer Services, Olivia Newton-John Cancer and Wellness Centre, VIC; Scott Nussey, Consumer, SA; Dr Claire Phillips, Radiation Oncologist, Peter MacCallum Cancer Centre, VIC; and Janine Rhodes, Coordinator, Brain Tumour Support Service, Cancer Council Queensland, QLD.