Living with a brain tumour

Many people experience changes in the way their body functions as a result of a brain or spinal cord tumour, or treatment for these tumours. You or your family members may notice changes in your speech, personality, memory, movement, balance and coordination. If you notice some differences in behaviour, talk to your doctor, nurse or care coordinator.

Emotionally, these changes may be difficult to cope with. You might find that your self esteem and your relationships, especially with those close to you, 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 close to you.

The brain can sometimes heal itself after treatment, but this can be a slow process. Many patients require some rehabilitation to help restore their abilities or manage changes. The type of therapy you have depends on your needs, choices and what is available.

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Rehabilitation

Cognitive rehabilitation

If your memory, language skills or concentration is affected, a neuropsychologist, speech pathologist or occupational therapist may help you to improve your cognitive skills using memory activities, diaries and language puzzles.

Physiotherapy

In some cases, physiotherapy can help you to learn how to move more easily. It can also help you to develop, maintain or regain strength and balance. Moving and strengthening your muscles can help reduce tiredness. If you can’t move easily, you may be able to learn compensation techniques, such as using a walking stick. You may also be given advice on how to exercise safely and stimulate parts of your body to improve circulation and reduce swelling.

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).

Occupational therapy

Some people find their tumour or their treatment impacts on their ability to perform everyday activities (e.g. preparing a meal). Occupational therapy aims to help you to return to the activities that are important to you. A range of physical or cognitive strategies are used to manage fatigue and improve or maintain your independence.

Assistance for vision impaired

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. For more information, call 1300 847 466 or go to visionaustralia.org.

Read more about rehabilitation

Managing seizures

If you are diagnosed with a brain tumour, you may experience seizures, disruptions to the normal patterns of electrical impulses in the brain.

Seizures are sometimes called fits or convulsions. They can often be prevented with anti-convulsant medication (also called antiepileptic or anti-seizure medication). You can minimise your seizure risk by making sure you don’t get too tired or fatigued.

Generalised seizures

These types of seizures typically affect 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 sudden cry, followed by the person falling down and losing consciousness. The person’s muscles may twitch violently and their breathing may be shallow for up to two minutes. They may lose control of their bladder or bowel and bite their tongue.

Partial seizures

These affect one part of the body, such as an arm or a leg. Symptoms include twitching; jerking; tingling or numbness; altered sensations (hallucinations), such as changed vision or hearing, sensing strange tastes or smells, or a feeling of déjà vu. Partial seizures may cause a brief loss of consciousness.

Anti-convulsant medicines

There are many types of anti-convulsant drugs, which are used to prevent seizures. You may require blood tests while you are taking anti-convulsants. This is to check whether the dose is effective and how your liver is coping with the medicine.

Side effects of anti-convulsant drugs vary and may include tiredness, weight changes, gum problems, tremors, nausea, vomiting and depression. If you are allergic to the medicine, you may get a rash. Tell your medical team if you have any skin changes or other side effects.

Your doctor can adjust your dose to reduce any side effects, or can give you another type to try. It is important not to stop taking the medicine or change the dose without your doctor’s advice.

Ways to help someone having a seizure

  • Remain calm and stay with the person while they are having a seizure, but do not restrain them or put anything in their mouth.
  • Protect the person from injury (e.g. move hazards, lower to floor if possible, loosen clothing, place a soft pillow under their head and shoulders).
  • Lie the person on their side to clear their airway. This is particularly important if they have vomited, are unconscious or have food or fluid in their mouth.
  • If help is needed, call an ambulance (000).
  • Observe the person until they have recovered or the ambulance arrives.
  • Time how long the seizure lasts so you can advise the paramedics.
  • Talk to the person and explain what has occurred. In many cases, people are confused after a seizure.
  • If the seizure occurs while a 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, water or vomit in their mouth.
  • Allow the person to rest after having a seizure as most seizures are exhausting.
  • For detailed information about seizures, contact Epilepsy Action Australia on 1300 374 437 or visit epilepsy.org.au.
Read more about managing seizures

Driving

Benign and malignant tumours, seizures, and certain treatments and medications (such as anti-convulsants and some pain-killers) can cause changes in vision, mobility, coordination, perception and judgment. These changes can affect a person’s driving skills.

Ask your doctor about the impact on driving –  When you are first diagnosed with a brain tumour your doctor may advise you not to drive for a period of time. You may also be advised not to drive for a period after surgery, radiotherapy and chemotherapy.

Check with your doctor before resuming driving – Laws in Australia require drivers to report any permanent or long term illness or injury that is likely to affect their ability to drive to their driver licensing authority. Your doctor can advise you if you should report your condition or if there are any temporary restrictions. The licensing authority will request information from your doctor to decide if you are medically fit to drive.

See professionals to assess your ability to drive – You may be referred to a neurologist to assess your fitness/suitability to return to driving. This may included doing an EEG to assess your seizure risk.

You may also have an occupational therapy driving assessment. This can determine the type of difficulties you are experiencing while driving (for example, a slow reaction time). An occupational therapist may be able to teach you driving techniques to address your weaknesses or instruct you on how to use car modifications (such as additional mirrors). 

After the assessment, it may be decided that you can drive but with restrictions, such as only in daylight, only in vehicles with automatic transmission, or only short distances from home.

Follow any restrictions to your licence – If you ignore the restrictions on your licence or drive unsafely, your licence may be suspended or cancelled. If you keep driving with a suspended or cancelled licence, you may be fined. In addition, if you have an accident while driving, you could be charged with a criminal offence and your insurance policy will no longer be valid.

Emotional impact

Some people feel upset or frustrated if they are no longer able to drive or they have restrictions placed on their licence. These reactions are natural and understandable.

While changes in your ability to drive can affect your sense of independence and may impact on your family too, it may help to remember that the decision is made for your safety and wellbeing. It is also made for the safety of passengers, pedestrians and other road users who could be injured if your driving is unsafe. Depending on your situation and your ongoing health, it may be possible to return to driving at a later stage.

If you have to stop driving, you may want to talk to a counsellor or someone who has been through a similar experience. 

For more information, talk to your doctor or visit the Frequently Asked Questions under ‘Assessing Fitness to Drive’ on the Austroads website austroads.com.au

Read more about driving

Children and brain tumours

School-aged children with brain tumours may benefit from tutoring as part of their rehabilitation. This may be available through children’s charities such as Redkite and CanTeen.

Ask your child’s school if they have a copy of Cancer Council’s Cancer in the School Community, or talk to the student welfare coordinator, school counsellor or the principal. You can also ask the medical team for information about how the tumour and treatment may have affected your child.

    Cancer in the School Community

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Instructions for downloading and reading EPUB files

Apple devices

The iBooks application must be installed on your Apple device before you can read the EPUB.
Different ways to download an EPUB file to your Apple device:

  • email EPUB files to yourself and transfer the attachment to iBooks.
  • copy EPUB files into DropBox (or a similar service) and use the DropBox app to send them to iBooks.
  • open EPUB files directly from Mobile Safari and open them in iBooks, where they are saved automatically by downloading the EPUB from the website.

Need more help? Visit: http://support.apple.com/kb/HT4059

Kobo

To download an EPUB file to your Kobo from a Windows computer:

  • download and save the EPUB directly onto your desktop.
  • connect your Kobo to your computer using the USB cable and tap “Connect” on your eReader.
  • select “Open folder to view files” to view the contents of your Kobo.
  • navigate to where you have stored your EPUB file in “Finder”, in documents or downloads, and drag and drop it into the Kobo window. You can now disconnect your Kobo to read the eBook.

To download an EPUB to your Kobo from a Mac:

  • download and save the EPUB directly onto your desktop.
  • connect your Kobo to your computer using the USB cable and tap “Connect” on your eReader.
  • open your “Finder” application.
  • select “Kobo eReader” from the listed devices to view the contents of your Kobo.
  • navigate to where you have stored your EPUB file in “Finder”, probably in documents or downloads, and drag and drop it into the Kobo window. You can now disconnect your Kobo to read the eBook.

Turn on your Kobo and your EPUB will be located in “eBooks”, while a PDF will be located in “Documents”.
Need more information? Visit: http://www.kobo.com/help/koboaura/response/?id=3784&type=3

Sony Reader

To download an EPUB file on your Sony Reader™:

  • ensure you have already installed the Reader™ Library for PC/Mac software
  • select the eBook you want from our website and click the link to download it.
  • connect the Reader™ to your computer.
  • open the Reader™ Library software and click “Library” in the left-hand pane and select the eBook to view it.

Need more help? Visit: https://au.readerstore.sony.com/apps_and_devices/

Amazon Kindle 2nd Generation devices

EPUB files can’t be read on the Amazon Kindle™. However, like most eReaders, Kindle™ 2nd Generation devices are able to display PDFs. We recommend that you download the PDF version of this booklet if you would like to read it on a Kindle™.
To transfer a PDF to your Kindle™ via USB cable from your computer or Mac:

  • download the PDF directly onto your computer.
  • connect the USB cable to your computer’s USB port, and the micro USB end of the cable to your Kindle™. Note: the Kindle™ won’t be available as a reading device while it is connected to your computer until it has been disconnected.
  • open the Kindle™ drive and several folders will appear inside. The “Documents” folder is where you will need to copy or drag the PDF to.
  • safely eject your Kindle™ from your computer and unplug the USB cable. Your content will appear on the Home Screen.

Kindle also provides a Kindle Personal Documents Service that allows users to send documents as an attachment directly to your eReader. For more information on this service, visit http://www.amazon.com/gp/help/customer/display.html/ref=help_search_1-1?ie=UTF8&nodeId=200767340&qid=1395967989&sr=1-1
For more information on accessing a PDF on your Kindle™, visit www.amazon.com/manageyourkindle, log in to your account and click on Personal Document Settings.
Need more help? Visit https://www.amazon.com/gp/help/customer/display.html?nodeId=200375630

Android and PC

You can also download and open eBooks on Android devices and PCs with appropriate apps or software installed. Suitable eReader apps for Android include Google Play Books, FBReader and Moon+ Reader. Suitable software for PCs include Calibre and Adobe Digital Editions.

Instructions for downloading and reading EPUB files

Apple devices

The iBooks application must be installed on your Apple device before you can read the EPUB.
Different ways to download an EPUB file to your Apple device:

  • email EPUB files to yourself and transfer the attachment to iBooks.
  • copy EPUB files into DropBox (or a similar service) and use the DropBox app to send them to iBooks.
  • open EPUB files directly from Mobile Safari and open them in iBooks, where they are saved automatically by downloading the EPUB from the website.

Need more help? Visit: http://support.apple.com/kb/HT4059

Kobo

To download an EPUB file to your Kobo from a Windows computer:

  • download and save the EPUB directly onto your desktop.
  • connect your Kobo to your computer using the USB cable and tap “Connect” on your eReader.
  • select “Open folder to view files” to view the contents of your Kobo.
  • navigate to where you have stored your EPUB file in “Finder”, in documents or downloads, and drag and drop it into the Kobo window. You can now disconnect your Kobo to read the eBook.

To download an EPUB to your Kobo from a Mac:

  • download and save the EPUB directly onto your desktop.
  • connect your Kobo to your computer using the USB cable and tap “Connect” on your eReader.
  • open your “Finder” application.
  • select “Kobo eReader” from the listed devices to view the contents of your Kobo.
  • navigate to where you have stored your EPUB file in “Finder”, probably in documents or downloads, and drag and drop it into the Kobo window. You can now disconnect your Kobo to read the eBook.

Turn on your Kobo and your EPUB will be located in “eBooks”, while a PDF will be located in “Documents”.
Need more information? Visit: http://www.kobo.com/help/koboaura/response/?id=3784&type=3

Sony Reader

To download an EPUB file on your Sony Reader™:

  • ensure you have already installed the Reader™ Library for PC/Mac software
  • select the eBook you want from our website and click the link to download it.
  • connect the Reader™ to your computer.
  • open the Reader™ Library software and click “Library” in the left-hand pane and select the eBook to view it.

Need more help? Visit: https://au.readerstore.sony.com/apps_and_devices/

Amazon Kindle 2nd Generation devices

EPUB files can’t be read on the Amazon Kindle™. However, like most eReaders, Kindle™ 2nd Generation devices are able to display PDFs. We recommend that you download the PDF version of this booklet if you would like to read it on a Kindle™.
To transfer a PDF to your Kindle™ via USB cable from your computer or Mac:

  • download the PDF directly onto your computer.
  • connect the USB cable to your computer’s USB port, and the micro USB end of the cable to your Kindle™. Note: the Kindle™ won’t be available as a reading device while it is connected to your computer until it has been disconnected.
  • open the Kindle™ drive and several folders will appear inside. The “Documents” folder is where you will need to copy or drag the PDF to.
  • safely eject your Kindle™ from your computer and unplug the USB cable. Your content will appear on the Home Screen.

Kindle also provides a Kindle Personal Documents Service that allows users to send documents as an attachment directly to your eReader. For more information on this service, visit http://www.amazon.com/gp/help/customer/display.html/ref=help_search_1-1?ie=UTF8&nodeId=200767340&qid=1395967989&sr=1-1
For more information on accessing a PDF on your Kindle™, visit www.amazon.com/manageyourkindle, log in to your account and click on Personal Document Settings.
Need more help? Visit https://www.amazon.com/gp/help/customer/display.html?nodeId=200375630

Android and PC

You can also download and open eBooks on Android devices and PCs with appropriate apps or software installed. Suitable eReader apps for Android include Google Play Books, FBReader and Moon+ Reader. Suitable software for PCs include Calibre and Adobe Digital Editions.


Video: Rehabilitation after treatment

This video looks at common challenges facing people with brain cancer after treatment, such as the types of rehabilitation, brain tumours and driving, and returning to work.

Instructions for downloading and reading EPUB files

Apple devices

The iBooks application must be installed on your Apple device before you can read the EPUB.
Different ways to download an EPUB file to your Apple device:

  • email EPUB files to yourself and transfer the attachment to iBooks.
  • copy EPUB files into DropBox (or a similar service) and use the DropBox app to send them to iBooks.
  • open EPUB files directly from Mobile Safari and open them in iBooks, where they are saved automatically by downloading the EPUB from the website.

Need more help? Visit: http://support.apple.com/kb/HT4059

Kobo

To download an EPUB file to your Kobo from a Windows computer:

  • download and save the EPUB directly onto your desktop.
  • connect your Kobo to your computer using the USB cable and tap “Connect” on your eReader.
  • select “Open folder to view files” to view the contents of your Kobo.
  • navigate to where you have stored your EPUB file in “Finder”, in documents or downloads, and drag and drop it into the Kobo window. You can now disconnect your Kobo to read the eBook.

To download an EPUB to your Kobo from a Mac:

  • download and save the EPUB directly onto your desktop.
  • connect your Kobo to your computer using the USB cable and tap “Connect” on your eReader.
  • open your “Finder” application.
  • select “Kobo eReader” from the listed devices to view the contents of your Kobo.
  • navigate to where you have stored your EPUB file in “Finder”, probably in documents or downloads, and drag and drop it into the Kobo window. You can now disconnect your Kobo to read the eBook.

Turn on your Kobo and your EPUB will be located in “eBooks”, while a PDF will be located in “Documents”.
Need more information? Visit: http://www.kobo.com/help/koboaura/response/?id=3784&type=3

Sony Reader

To download an EPUB file on your Sony Reader™:

  • ensure you have already installed the Reader™ Library for PC/Mac software
  • select the eBook you want from our website and click the link to download it.
  • connect the Reader™ to your computer.
  • open the Reader™ Library software and click “Library” in the left-hand pane and select the eBook to view it.

Need more help? Visit: https://au.readerstore.sony.com/apps_and_devices/

Amazon Kindle 2nd Generation devices

EPUB files can’t be read on the Amazon Kindle™. However, like most eReaders, Kindle™ 2nd Generation devices are able to display PDFs. We recommend that you download the PDF version of this booklet if you would like to read it on a Kindle™.
To transfer a PDF to your Kindle™ via USB cable from your computer or Mac:

  • download the PDF directly onto your computer.
  • connect the USB cable to your computer’s USB port, and the micro USB end of the cable to your Kindle™. Note: the Kindle™ won’t be available as a reading device while it is connected to your computer until it has been disconnected.
  • open the Kindle™ drive and several folders will appear inside. The “Documents” folder is where you will need to copy or drag the PDF to.
  • safely eject your Kindle™ from your computer and unplug the USB cable. Your content will appear on the Home Screen.

Kindle also provides a Kindle Personal Documents Service that allows users to send documents as an attachment directly to your eReader. For more information on this service, visit http://www.amazon.com/gp/help/customer/display.html/ref=help_search_1-1?ie=UTF8&nodeId=200767340&qid=1395967989&sr=1-1
For more information on accessing a PDF on your Kindle™, visit www.amazon.com/manageyourkindle, log in to your account and click on Personal Document Settings.
Need more help? Visit https://www.amazon.com/gp/help/customer/display.html?nodeId=200375630

Android and PC

You can also download and open eBooks on Android devices and PCs with appropriate apps or software installed. Suitable eReader apps for Android include Google Play Books, FBReader and Moon+ Reader. Suitable software for PCs include Calibre and Adobe Digital Editions.

Instructions for downloading and reading EPUB files

Apple devices

The iBooks application must be installed on your Apple device before you can read the EPUB.
Different ways to download an EPUB file to your Apple device:

  • email EPUB files to yourself and transfer the attachment to iBooks.
  • copy EPUB files into DropBox (or a similar service) and use the DropBox app to send them to iBooks.
  • open EPUB files directly from Mobile Safari and open them in iBooks, where they are saved automatically by downloading the EPUB from the website.

Need more help? Visit: http://support.apple.com/kb/HT4059

Kobo

To download an EPUB file to your Kobo from a Windows computer:

  • download and save the EPUB directly onto your desktop.
  • connect your Kobo to your computer using the USB cable and tap “Connect” on your eReader.
  • select “Open folder to view files” to view the contents of your Kobo.
  • navigate to where you have stored your EPUB file in “Finder”, in documents or downloads, and drag and drop it into the Kobo window. You can now disconnect your Kobo to read the eBook.

To download an EPUB to your Kobo from a Mac:

  • download and save the EPUB directly onto your desktop.
  • connect your Kobo to your computer using the USB cable and tap “Connect” on your eReader.
  • open your “Finder” application.
  • select “Kobo eReader” from the listed devices to view the contents of your Kobo.
  • navigate to where you have stored your EPUB file in “Finder”, probably in documents or downloads, and drag and drop it into the Kobo window. You can now disconnect your Kobo to read the eBook.

Turn on your Kobo and your EPUB will be located in “eBooks”, while a PDF will be located in “Documents”.
Need more information? Visit: http://www.kobo.com/help/koboaura/response/?id=3784&type=3

Sony Reader

To download an EPUB file on your Sony Reader™:

  • ensure you have already installed the Reader™ Library for PC/Mac software
  • select the eBook you want from our website and click the link to download it.
  • connect the Reader™ to your computer.
  • open the Reader™ Library software and click “Library” in the left-hand pane and select the eBook to view it.

Need more help? Visit: https://au.readerstore.sony.com/apps_and_devices/

Amazon Kindle 2nd Generation devices

EPUB files can’t be read on the Amazon Kindle™. However, like most eReaders, Kindle™ 2nd Generation devices are able to display PDFs. We recommend that you download the PDF version of this booklet if you would like to read it on a Kindle™.
To transfer a PDF to your Kindle™ via USB cable from your computer or Mac:

  • download the PDF directly onto your computer.
  • connect the USB cable to your computer’s USB port, and the micro USB end of the cable to your Kindle™. Note: the Kindle™ won’t be available as a reading device while it is connected to your computer until it has been disconnected.
  • open the Kindle™ drive and several folders will appear inside. The “Documents” folder is where you will need to copy or drag the PDF to.
  • safely eject your Kindle™ from your computer and unplug the USB cable. Your content will appear on the Home Screen.

Kindle also provides a Kindle Personal Documents Service that allows users to send documents as an attachment directly to your eReader. For more information on this service, visit http://www.amazon.com/gp/help/customer/display.html/ref=help_search_1-1?ie=UTF8&nodeId=200767340&qid=1395967989&sr=1-1
For more information on accessing a PDF on your Kindle™, visit www.amazon.com/manageyourkindle, log in to your account and click on Personal Document Settings.
Need more help? Visit https://www.amazon.com/gp/help/customer/display.html?nodeId=200375630

Android and PC

You can also download and open eBooks on Android devices and PCs with appropriate apps or software installed. Suitable eReader apps for Android include Google Play Books, FBReader and Moon+ Reader. Suitable software for PCs include Calibre and Adobe Digital Editions.


This information was last reviewed in May 2016
View who reviewed this content
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