Information and support for carers looking after someone with a brain tumour

Caring for a friend or family member diagnosed with a brain tumour feel like trying to understand a new and unfamiliar world. You may find that your friend or relative is more dependent on you. You may need to support them emotionally and practically. You may need to make decisions on behalf of your friend or relative.

In the maze of things to do and know, we hope that you can explore as much information in this online guide as you need. We hope that having easy to understand information at your fingertips will help you to navigate your journey as a carer.

This website has been created to help you care for your friend or relative with a brain tumour. There is also information to help you look after yourself while caring for someone else.

The pages on this site are grouped into Topics.

You may browse the Topics to find specific pages, or read in order. If you’re lost, we have also created a guide on how to use this website. If you’re just here to find what you need, pick one of the tabs below to start.

This website relates mainly to adults with brain tumours and may be less relevant if you are caring for a child with a brain tumour.

What do you need help with?

Newly Diagnosed

Receiving the news that you or a loved one has been diagnosed with a brain tumour can be a confusing and daunting time. Weā€™ve developed a range of information resources to help answer the questions you may have when newly diagnosed.

Within the Understanding brain tumours section you may find the Prognosis page helpful.

Also, within the Finding good information section you may find helpful:

In the Changes to expect section you may find helpful:

You may be asking yourself, “what source is best for me?” The internet is scattered with biased, misleading, and altogether incorrect information. Make sure that the sources you use when caring for yourself and your person with a brain tumour is credible and reliable. Here are some tips:

Starting Treatment

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.

Within the Understanding brain tumours section you may find helpful:

Caring for someone with a brain tumour can be both physically and emotionally demanding. You may find the below sections helpful in getting started.

In the Practicalities section you may find helpful:

After Treatment

For most people, the cancer experience doesnā€™t end on the last day of treatment. Life after cancer treatment can present its own challenges. You may have mixed feelings when treatment ends, and worry that the cancer is coming back, or feel pressured to return to ā€œnormal lifeā€. It is important to allow yourself time to adjust to the physical and emotional changes, and establish a new daily routine at your own pace.

In the Changes to expect section you may find helpful:

However, recovery from a brain tumour is not always possible. This diagnosis is stressful, and for some people, difficult to discuss. It is important to have open and honest conversations with your health care team to express your feelings, preferences, and concerns. The health care team has special skills, experience, and knowledge to support patients and their families and is there to help

In the End of Life section you may find helpful:

Coping

Caring for someone with brain cancer can cause physical and emotional strain, so itā€™s important to look after your wellbeing. We recommend you start by exploring the Helpful Links topic.

Specifically, from the Caring for yourself section you may find helpful:

Disclosing your diagnosis can be a really beneficial way of increasing the support around you for the days ahead. However, you might find it helpful to limit the number of people you speak with initially, especially if telling people face-to-face, so that you donā€™t feel too overwhelmed by the reactions of a larger group. Of course, there may be people or situations whereby you feel that itā€™s not helpful to talk about your tumour.

Resources in the People around you section can offer you more information on this:

Recovery from a brain tumour is not always possible. When people lose someone they love, a period of grief usually follows. It is almost impossible for humans to experience loss without feeling some kind of grief. Grief is a normal response to the loss of a loved one. Bereavement is the process of grieving, and each personā€™s experience is unique.

In the End of Life section you may find helpful:

Example carer stories

As we explore different topics, weā€™ll be joined by Alice, Steve and Hattie.  They show example stories about looking after someone with a brain tumour.  These examples are developed to show different ways of coping with caring for someone with a brain tumour. These examples are fictional characters based upon compilations of real stories from actual carers. As you read through the topics, you can click on the photos of Alice, Steve or Hattie to see how the topic can be applied to a situation. 

Read the examples

Click on the photos below to read the example stories.

Meet Hattie
Meet Steve
Meet Alice

Hattie’s Story

Hi Iā€™m Harriet, but my friendā€™s call me Hattie. About two months ago, I went to stay with my younger sister Kirra (59 years old) in Brisbane. I noticed over that long weekend that she had lost a lot of weight and although she was her normal happy funny self, she was more forgetful than usual. At one point she left the taps running and flooded the kitchen floor. I didnā€™t think anything more about it, putting it down to stress from her job. Within a week of being back in my own home, I got a phone call to say that Kirra had collapsed and was needing emergency surgery. I raced back up to Brisbane where we were told that she has one of the more aggressive types of brain tumour, a glioblastoma or GBM. They had removed most of it in surgery, but she would need to have follow up treatment. Having no other family, I moved up to live with Kirra while she recovered from the surgery and started having chemotherapy and radiation treatment. After her surgery she had changed a lot, but we still have a good laugh. She has now finished her treatment and needs full time care. Although I still live with her, we have a carer come in to help shower her every day. She had two more radiation sessions left but, even though she has always been a fit and healthy person, she wasnā€™t responding very well to the treatment.

They stopped the main treatment, but she is still on medication to try and slow the growth, but it is mainly to keep her comfortable and out of pain. It is sad, but we are just trying to make the most of our time together.

– Hattie

Steve’s Story

Hi, Iā€™m Steve. My partner, Kelly, and I have been living in Melbourne for the past 10 years. We have a beautiful 18 month old daughter. About a year ago, while still on maternity leave, Kelly started experiencing headaches which become more frequent and more severe. At first we thought it may be caused from post-natal stress and a lack of sleep. At times she used to ā€˜vague outā€™ as if she wasnā€™t listening to me properly. I would have to repeat things. It caused a bit of tension, but again we put it down to lack of sleep with a restless toddler. Then, one weekend Kelly fell to the floor and started convulsing. I was so thankful that I was home, but it was pretty scary. I called an ambulance. The paramedics said that sheā€™d had a seizure. After Kelly told them about the ongoing headaches, the doctors kept her in hospital, where she had a brain scan (an MRI). The scan showed a patch on the left side of her brain and they suggested she had surgery to see whether it was cancerous (malignant).

The surgery revealed that she had an anaplastic astrocytoma, a grade 3 tumour. We had given permission to the doctors to take out what they could of the tumour during surgery if it was cancerous. After the operation, they said that they had managed to take out what they could of the tumour (debulking). After the surgery she did a 6 week course of radiotherapy and now we just hope and wait to see how it goes.

– Steve

Alice’s Story

Three years ago, when he was 24 years old, my son Jack, went to his GP because he had nausea and headaches, and it was getting him down. After a few tests, the GP sent Jack for a brain scan and so we travelled to the city where he was studying and went with him for the results. We were told that he had an anaplastic oligodendroglioma (Grade II tumour). The tumour was in his frontal lobe and this may be why he was also feeling depressed. We were told that oligodendrogliomas can grow very slowly and so the only treatment given were steroids to try and slow the growth and medication to help his symptoms (e.g. anti-nausea tablets and antidepressants). Although they often operate on these types of tumours, they thought that it was small enough to watch and wait. So, he had MRI scans every 4 to 6 months to see if the tumour was changing.

We all tried to carry on with life as normal, but it was difficult not to worry, especially as the scan appointments got closer. We never knew what to expect. The tumour was growing, but slowly. Unfortunately, a year ago Jack started to get weakness in his muscles and a scan showed that the tumour had grown considerably. The medical staff took a sample of the tumour using a special computerised needle (stereotactic needle biopsy) and it showed that the tumour was now a grade 3 tumour. It was growing at a faster rate. He had an operation where they tried to remove as much of the tumour as possible, but the cancer cells of oligodendroglioma grow like tentacles, and so it had spread out in such a way that it couldnā€™t all be removed. After the surgery he came back to live with us.

– Alice