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Living with a brain or spinal cord tumour

A brain or spinal cord tumour and its treatment can change how the mind and body work. You or your family members may notice changes in how you speak and your personality, memory, movement, balance or coordination. If you or your family feel like you are behaving differently, talk to your doctor, nurse or cancer care coordinator. The types of changes will depend on what part of the brain is affected by the tumour and what treatment you have had.

Rehabilitation is treatment designed to help people recover from injury or disease. After treatment for a brain tumour, most people need to have a rehabilitation assessment and therapies. These can help restore your previous abilities or help you adjust to any changes.

The changes may be difficult to cope with emotionally, and you might find that your self-esteem and your relationships are affected. Talking to a counsellor or someone who has had a similar experience may help. Call Cancer Council 13 11 20 to see what support is available.

Financial support for people with disabilities

The National Disability Insurance Scheme (NDIS) provides Australians aged under 65 and who have a permanent and significant disability with funding for support and services. NDIS can help a person with a brain tumour access services in their community. Call 1800 800 110 or visit ndis.gov.au. If your GP refers you to a rehabilitation specialist as part of a Chronic Disease Management plan, you may be eligible for a Medicare rebate for up to five visits each year.

A range of therapies can support you in your recovery. These may be available at your cancer treatment centre, or through a rehabilitation specialist at a rehabilitation hospital. You may also be referred to individual allied health professionals (e.g. physiotherapist, occupational therapist) in private practice.

Physiotherapy – In some cases, physiotherapy can help you learn how to move more easily. It can also help you to develop muscle strength and balance. Moving and strengthening your muscles can reduce tiredness or weakness related to cancer treatment. If you can’t move easily, you may be able to learn techniques, such as using a walking stick, so you can become more independent.

Cognitive rehabilitation – Your memory, language skills, thinking, planning and
problem-solving skills (executive function) may be affected.

A neuropsychologist, speech pathologist or occupational therapist can help improve these cognitive skills using memory activities, speech therapy, assistive technology such as diaries and reminder alerts, and word puzzles.

Exercise – A physiotherapist or an exercise physiologist can give you advice on how to exercise safely and stimulate parts of your body to improve circulation and reduce swelling, and improve your cardiovascular fitness.

To find an accredited exercise physiologist, visit essa.org.au/find-aep; for a physiotherapist,
visit choose.physio/findaphysio.

Speech therapy – If your ability to talk has been affected, a speech pathologist may be able to help. Speech pathologists also work with people who have difficulty swallowing (dysphagia).

To find a speech pathologist, visit speechpathologyaustralia.com.au.

Help with vision impairment – Some people may lose some or all of their sight as a result of a brain tumour or surgery.

Vision Australia can help people learn how to live independently. Call 1300 84 74 66 or visit
visionaustralia.org.

Occupational therapy – The treatment may mean it’s harder to perform everyday personal  activities (e.g. showering, dressing, preparing a meal).

An occupational therapist can help you to return to the activities that are important to you. A range of strategies and aids can help you manage fatigue and improve or maintain your independence.

To find an occupational therapist working in private practice, visit otaus.com.au/find-an-ot.

A brain tumour or its treatment can sometimes cause seizures, which are disruptions to the normal patterns of electrical impulses in the brain. They may also be called fits or convulsions. Seizures can be divided into two main groups:

Generalised seizures – These occur when the whole brain is affected, and typically involve the whole body. The most common type is called a tonic-clonic seizure (previously known as a grand mal seizure). A seizure often starts with a loss of consciousness. The person’s muscles may stiffen, their limbs may jerk rhythmically, and their breathing may be shallow for up to two minutes. They may bite their tongue, and lose bladder and bowel control.

Focal seizures – Also called partial seizures, these occur when one area (lobe) of the brain is affected. The seizure affects one part of the body, such as an arm or leg. The symptoms depend on the area of the brain involved. They may include twitching; jerking; tingling or numbness; and altered sensations, such as changed vision or hearing, strange tastes or smells, or a feeling of deja vu. Partial seizures may cause a brief loss of consciousness, changes in mood, and memory loss just before, during and after the seizure.

Ways to prevent seizures

Seizures can often be prevented with anticonvulsant medicines (also called anti-epileptic or anti-seizure medicines). Fatigue, or feeling very tired, can also increase your risk of having a seizure. Try to get enough sleep, and avoid daytime naps if they make sleeping at night difficult. Limiting or cutting down on alcohol may also help.

Anticonvulsant medicines

Many different types of anticonvulsant drugs are used to prevent seizures. You may need to have blood tests while you are taking anticonvulsants. This is to check whether the dose is effective and how your liver is coping with the medicine.

Side effects of anticonvulsant drugs vary, but they may include tiredness, gum problems, shakes (tremors), nausea, vomiting, weight changes, depression, irritability and aggression. If you are allergic to the medicine, you may get a rash. Tell your treatment team if you have any skin changes or other side effects. Your doctor can adjust the dose or try another anticonvulsant. Do not stop taking the medicine or change the dose without your doctor’s advice.

If you are taking anticonvulsants, you may need to avoid eating particular foods. Check with your doctor before taking any herbal medicines, as these can change the way some anticonvulsants work. Talk to your doctor or pharmacist about potential interactions.

Ways to help someone having a seizure

  • Remain calm and stay with the person while they are having a seizure. If they have one, refer to their Seizure Management Plan.
  • Do not hold them down or put anything in their mouth.
  • Protect the person from injury (e.g. move hazards, lower them to the floor if possible, loosen clothing, cushion their head and shoulders).
  • Call 000 for an ambulance if it is the first seizure the person has had; if the person is injured; if there was food or fluid in the person’s mouth; if the seizure lasts longer than five minutes; or if you are unsure what to do.
  • Time how long the seizure lasts so you can tell the paramedics.
  • After the jerking stops, roll the person onto their side to keep their airway clear. This is particularly important if the person has vomited, is unconscious or has food or fluid in their mouth.
  • Watch the person until they have recovered, or the ambulance arrives.
  • If the seizure occurs while the person is in a wheelchair or car, support their head and leave them safely strapped in their seat until the seizure is over. Afterwards, remove the person from their seat, if possible. Roll them onto their side if there is food, fluid or vomit in their mouth.
  • Talk to the person and explain what has occurred. In many cases, people are confused after a seizure.
  • Allow the person to rest afterwards as most seizures are exhausting.
  • For detailed information and an online tool for creating a Seizure Management Plan, contact Epilepsy Action Australia on 1300 37 45 37
    or visit epilepsy.org.au.

Tumours, seizures, and certain treatments and medicines (such as anticonvulsants and some pain medicines) can affect the skills needed to drive safely. These can include:

  • having good vision and perception
  • being able to concentrate
  • being able to remember directions
  • good hand–eye coordination.

If you are diagnosed with any type of brain tumour, it is very important to ask your doctor how your condition or treatment will affect your ability to drive.

When you are first diagnosed with a brain tumour, your doctor will probably advise you not to drive for a period of time. You probably won’t be able to drive for some time after surgery and possibly after radiation therapy.

If you have had seizures, you will need to be seizure free for a period of time before you are allowed to drive. If you stop taking your anticonvulsant medicines, you will also need to be seizure free for a period of time until you are allowed to drive.

Before you start driving again, always check with your doctor. Laws in Australia require drivers to tell their driver licensing authority about any permanent or long-term illness or injury that is likely to affect their ability to drive. Your doctor can advise you if you should report your condition or if there are any temporary restrictions. The licensing authority may request information from your doctor to decide if you are medically fit to drive.

How to return to driving

  • Have a driving evaluation to check your ability to return to driving. This may include doing an off-road assessment, or having an electroencephalogram (EEG) to assess your seizure risk.
  • See an occupational therapist driving assessor or a neurologist or rehabilitation specialist to determine the type of problems you may be experiencing while driving (for example, a slow reaction time). The focus of the assessment is not to suspend or cancel your licence: it is to work out if it is possible for you to return safely to driving.
  • In some cases, an occupational therapist can teach you some driving techniques to help with weaknesses or how to make changes to your car (such as extra mirrors). You may also be able to drive with restrictions, such as only in daylight, only in vehicles with automatic transmission or only short distances from home.
  • Some people feel upset or frustrated if they have restrictions on their licence or can no longer drive. You may feel that you have lost your independence or be worried about the impact on your family. It may help to talk to a counsellor or someone who has been through a similar experience. Depending on your situation and your health, it may be possible to return to driving at a later stage.
  • Follow any licence restrictions. If your doctor has said you are not safe to drive, you must not drive unless they change that medical decision. If you ignore the restrictions or drive unsafely, your licence may be suspended or cancelled. You may be fined if you drive while your licence has been
    suspended or cancelled. If you have an accident while driving, you could be charged with a criminal offence and your insurance policy will no
    longer be valid.
  • For more information, talk to your doctor or visit austroads. com.au/drivers-and-vehicles/assessing-fitness-to-drive.

It can be hard to predict how well you will recover from treatment for a brain tumour, and when and whether you will be able to return to work. This may also depend on the type of work you do.

Some people find it hard to concentrate or make decisions after treatment for a brain tumour. At least at first, it may not be safe to operate heavy machinery or take on a lot of responsibility. An occupational therapist can advise you about whether returning to work is safe or possible. They can also give your employer information about whether you could return to work with altered duties or on a part-time basis.

Talk to your employer about adjusting your duties or working part-time until you have recovered. In some cases, it won’t be possible to return to your former role. This can be hard to accept, and it may help to talk to the hospital social worker, call Cancer Council 13 11 20 or join a brain tumour support group.

Download our booklet ‘Cancer, Work & You’

This information is reviewed by

This information was last reviewed in May 2020 by the following expert content reviewers: A/Prof Andrew Davidson, Neurosurgeon, Macquarie University Hospital, NSW; Dr Lucy Gately, Medical Oncologist, Oncology Clinics Victoria, and Walter and Eliza Hall Institute of Medical Research, VIC; Melissa Harrison, Allied Health Manager and Senior Neurological Physiotherapist, Advance Rehab Centre, NSW; Scott Jones, Consumer; Anne King, Neurology Cancer Nurse Coordinator, Health Department, WA; Dr Toni Lindsay, Senior Clinical Psychologist and Allied Health Manager, Chris O’Brien Lifehouse, NSW; Elissa McVey, Consumer; Caitriona Nienaber, 13 11 20 Consultant, Cancer Council WA; Dr Claire Phillips, Deputy Director, Radiation Oncology, Peter MacCallum Cancer Centre, VIC.