Caring for someone with a brain tumour
On this page: Caring for yourself | Coping with behavioural and personality changes | Tips for communication problems | Support services | Reviewers
You may be reading this because you're caring for someone with a brain or spinal cord tumour. Being a carer can be very stressful.
Try to look after yourself – give yourself some time out and share your worries with somebody neutral such as a counsellor, your doctor or a close friend. Ask your relatives and friends for help – they may be able to do some shopping or housework, cook some meals, or give you a short break so you can rest or attend to your own health or day-to-day needs.
Many cancer support groups are open to carers as well as people with cancer. A support group can offer a valuable opportunity 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 organisations and groups that can provide you with information and support, such as Carers Australia (free call 1800 242 636 for telephone support and information).
Call the Cancer Council Helpline to find out more about different services or to request free information for carers.
Caring for a child
Prognosis
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.
Should I tell my child?
It's 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.
Newborns, infants and toddlers
Children this young don't 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're 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're starting to separate from the family. This is a vulnerable time, as they don't want to appear different to 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.
Try to keep things normal
One of your child's most important needs will be for as many things as possible to stay normal and consistent. It's 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. They may feel left out, as parents are constantly caring for the sick child, and visitors may show more attention to their sibling. Their routines are disturbed and they may be cared for by other people while their parents are at the hospital.
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 is available to help?
Many hospital staff members specialise in working with children and young adults (paediatrics). Some hospitals employ 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 and Redkite offer practical and emotional support for families and children.
Reviewed by: Prof. Michael Besser AM, Consultant Emeritus in Neurosurgery, Royal Prince Alfred Hospital & The Children's Hospital at Westmead; Lindy Cohn, Cancer Information Consultant, Helpline, Cancer Council NSW; Laraine Cross, Senior Clinician, Social Work, Calvary Mater Newcastle; Christine and Richard Harris, Consumers; Christine and Gordon Holding, Consumers; Marina Kastelan, Brain Clinical Nurse Coordinator, North Shore Private Hospital; Lorna O'Brien, Manager, Helpline, Cancer Council NSW; and Karen Robinson, Neuro-oncology Care Coordinator, Liverpool Hospital Cancer Therapy Centre.
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