It’s easy to feel you’re not doing enough in terms of research or finding help, or to question whether you’re doing the wrong thing by recommending a particular treatment. Remember that any solution will be imperfect – there can be side effects with some medications and many of the options out there will be ineffective against tumor regrowth. So there is a balance to strike between investing time looking for treatment options, and spending quality time with your loved one which should be a priority.

Deciding with your loved one at which point of the journey to bring in new treatments can be hard, and there is no guide for this. Some people decide to try new treatments at the point of progression, also called recurrence, when the tumor comes back and the effectiveness of standard treatments declines. Others do so right at the beginning, choosing to employ these alternative treatments alongside the standard of care. There is growing medical evidence that hitting the tumor early in conjunction with the standard chemotherapy and radiation can be beneficial, and it is definitely worth you and your loved one exploring any possibilities with your doctor.

Learn more about the treatments for GBM here

Empowering yourself as you go through GBM is so important. You and your loved ones are advocates for your own journey. It’s in your power to ask questions, seek new approaches, request second opinions. Finding and getting access to high quality healthcare for GBM can be a lottery depending on where you live and whether there is a center of excellence near you that has specialist doctors and treatments on tap. GBM treatments and clinical trials can also be difficult to find, limited in number, only available in certain geographical regions, and are often expensive. Arm yourself with information and options. Once you have that you can begin to work out what is out there that works for you and your family.

There’s no right or wrong answer around end of life care but getting the support you need can really help in order to make the decisions that are best for your family. Conversations around end of life care can be difficult and some people may choose not to have that discussion with their family member at all. However, as GBM can cause cognitive decline, you might want to look into creating a durable power of attorney. This enables loved ones to legally make decisions about a person’s care on their behalf if they can no longer do so.

The most important thing you can do is to support your loved ones emotionally during this time.

That can simply involve making time for them, listening to their concerns, or helping them make decisions about treatment. At later stages of the illness, the level of support needed by your family member will increase. It might be good to consider seeking professional advice or assistance at this stage.

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Taking care of another person can be physically and mentally taxing. It’s also important to protect your own health – for example by being careful not to damage your back when helping your loved one out of bed. There are many good resources out there and it’s important to reach out for support if you need it.

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GBM can impact a range of brain functions depending on the location of the tumour. Growth of the tumour can lead to a number of physical and cognitive problems, such as a loss of balance, memory issues, impaired vision and a reduced ability to speak. If your loved one begins to struggle to process and articulate things well, they might rely on you to interpret information and explain things in simpler terms, or in serious cases help make decisions on their behalf.

It’s a very difficult and sensitive subject, but consider discussing with your loved one their thoughts on this in advance. If they are up for the discussion, you might discuss the types of treatment they are comfortable with, what they’d like you to do for them should they become more ill, and plans for end-of-life care.

One key characteristic of GBM is the heterogeneity of the tumour: it can have very different and changing mutations in its genetic makeup which in turn means there isn’t a one-size-fits-all approach to treatment. The first step is usually to complete the standard of care – which involves surgery followed by radiotherapy and chemotherapy.

In addition, you and your loved one should seek information and advice about what options are available beyond the standard of care, either at the beginning of your journey or at a later stage of tumour recurrence.

Learn more about the treatments available here