Brain Tumour Know Hows

Quick guides to give you key facts about important topics to you on your brain tumour journey.

Ketogenic diets

Certain diets and nutritional approaches are often spoken about in the media and elsewhere as being potentially helpful for people living with a brain tumour diagnosis, which may have caused you to wonder whether you should be thinking about particular nutritional approaches for your health.

This Know How offers an overview of the ketogenic diet in order to help you decide whether this is something that you wish to consider for yourself.

Download the Ketogenic diets Know How

How to bring structure to your day

As humans we are very good at adapting to what is happening around us- adapting is what we do all the time. But it is doing the adapting that takes its toll. A brain tumour diagnosis may have brought on big changes in your day to day life, with further changes made due to COVID-19 in March 2020.

In this Know How you find strategies to help you to bring structure into your day and manage these transitions.

Download the How to bring structure to your day Know How

How to prepare for medical appointments

When you are living with a brain tumour diagnosis, this can mean that you will have regular medical appointments and check-ups at any stage of the pathway. They are a key part of your clinical care and are where you will get key information about your condition and treatment plan.

This Know How will help you to prepare for your medical appointments through different tips and strategies.

Download the How to prepare for medical appointments Know How

How to prepare for medical appointments as a caregiver

When someone you love is living with a brain tumour diagnosis, they will have regular medical appointments and check-ups at each stage of their pathway. These appointments are a key part of your loved one’s clinical care and are an opportunity for you to get key information and ask questions about their condition and treatment plan.

It’s not always easy as a caregiver to find your voice in a consultation. In this Know How, we will explore how you can feel prepared for medical appointments as a caregiver, how you can make the most of the time you have with your loved one’s clinical team, and some strategies to help you feel more resilient and on top of things.

Download the How to prepare for medical appointments as a caregiver Know How

How to feel supported as a young carer

If you are under 18 years old and are helping to take care of someone with a brain tumour, you are a young carer. You could have a sibling, parent or relative with a brain tumour who you are helping to take care of.

This Know How will help you to feel more in control and supported as a young carer.

Download the How to feel supported as a young carer Know How

Money worries

When you are diagnosed with a brain tumour, you may find yourself worrying about finances. You may be worrying about losing your job, about being on reduced pay, about running your own business and being unable to work. Or perhaps you are a caregiver, and you are not sure how you are going to manage being a caregiver and also keep working.  You can suddenly find yourself in financial difficulties for any number of reasons.

This Know How provides you with a framework so that you can deal with money worries.

Download the Money worries Know How

Mindfulness

The practice of mindfulness is about taking the time to focus on one particular task or activity, feeling relaxed yet awake and aware, and being completely in the present moment.

When practised regularly, mindfulness can help to reduce stress and anxiety, which can help your emotional well-being and aid sleep. This Know How explores way that you can practice mindfulness when living with a brain tumour.

 

Download the Mindfulness Know How

Lasting power of attorney

We are often told by our community that there is a lack of information and signposting to support patients and their families in managing their personal, financial, legal and health affairs.

This Know How explains all about lasting power of attorney (LPA) to help you to consider whether this is something that you need to implement.

 

Download the Lasting power of attorney Know How

How to get a carer’s assessment (England)

This Know How will explain what extra support may be available to you as a caregiver in the form of a carer’s assessment. It will go through what the assessment is and how to apply for it, and it will also signpost some useful organisations that may be able to support you.

 

 

Download the How to get a carer’s assessment Know How

How to build a supportive team around you

Because brain cancer is a less common cancer, it is hard to find anyone who has a shared experience, someone who really understands what it is like. And as a caregiver, this can be really hard. One way to address this is to make sure that, as a caregiver, you have a supportive team around you. Social support is important – it acts as a buffer and helps with general well-being.

 

This Know How will help you build a supportive team so you can cope better when a loved one has a brain tumour.

Download the How to build a supportive team around you Know How

How to be assertive

Assertiveness is often needed to make sure you get the support you need when living with a brain tumour diagnosis. Being assertive, when done well, can be transformative. It can bring clarity to a confusing situation, progress a situation that is stuck and bring a sense of equality to a conversation.

This Know How will help you use assertiveness to get the support that you need.

Download the How to be assertive Know How

How to live with uncertainty

When you have been diagnosed with a brain tumour, you feel that your life is less secure, more fragile than it once was. You find yourself living in a space where nothing seems certain anymore. It’s a scary place to be, and it can leave you feeling out of control and overwhelmed.

This Know How will help you get comfortable with living with uncertainty.

Download the How to live with uncertainty Know How

How to have a voice as a caregiver

Being a caregiver is a daunting role – you need compassion, fortitude and fierce resilience. And more often than not, you are living these values on behalf of your close person, but never for yourself.

This Know How will help you find your voice as a caregiver of someone with a brain tumour.

Download the How to find your voice as a caregiver Know How

Finances and benefits

No longer being able to work, new and expensive mobility requirements, having to travel long distances to get to hospital – whatever the reasons for you, having a brain tumour can be a huge financial strain.

The latest brain tumour Know How covers finances and benefits that could support you and your family when one of you has a brain tumour.

Download the Finances and benefits Know How

Reliable websites

Access to the internet at the tips of our fingers has made getting hold of information quicker and easier than ever, but how can you know what sources to trust? Misinformation spreads fast online, and is sometimes shared by people with a large following.

This Know How will help you to understand what reliable websites look like, establish fact from fiction online and stop feeling overwhelmed by the volume of information available.

Download the Reliable websites Know How

Driving

We know that you have lots of questions about the impact your diagnosis will have on your ability to drive. If you need to give up your driving license, this has a massive impact on your independence and well-being.

This latest Brain Tumour Know How covers everything from telling your insurance provider, how long it might be until you can drive again to ways to manage the loss of your license.

Download the Driving Know How

How to get a second opinion

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We are often asked about second or even third opinions. Seeking more opinions has both advantages and disadvantages. This Know How has been designed to help you understand the pros and cons of a second opinion, bring some clarity as to what the options are and inform you how to go about seeking another opinion.

 

Download the Second opinion Know How

Immunotherapy: DCVax®

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Brain tumour immunotherapy, particularly DCVax®, is gaining an increasing amount of media coverage and interest. We are seeing a growing number of calls to our support helpline about DCVax® and brain tumour immunotherapy. This Know How sheds some light on the current state of play for one particular brain tumour immunotherapy trial and some recently published results.

 

Download the DCVax® Know How

Dealing with the overwhelm

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When situations change, it is hard to know which way to turn. Things that you did so easily suddenly become overwhelming. If you are a person living with a brain tumour, there may also be changes in your ability to function as you used to. Some things are within your power to change. Some are not. This Know How is designed to help you understand the difference, and prioritise the things that you can have an impact on.

Download the Overwhelm Know How

Cannabinoids

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This Know How is intended to bring some clarity to a confusing topic. Medicinal cannabis is a broad term for any sort of cannabis-based medicine used to relieve symptoms. There are many mixed messages about cannabis in the media and within the brain tumour community. Many cannabis based products are available to buy online, but their quality and content is not known. They may be illegal and potentially dangerous. Certain things inside cannabis contain anticancer properties, but this does not make it an anticancer treatment.

Download the Cannabinoids Know How

Returning to work

Returning to work can be a big step in recovery. It can bring a sense of normality, stability, routine and social contact. But we also know that it can be very daunting. This Know How will help you to prepare for returning to work, understand what help is available to you.

It has been written to encompass returning to work after bereavement as well as illness.

Download the Returning to work Know How

How to handle conflict

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When you are living with a brain tumour, emotions can run high, as people are living with stress. At times like this, we tend to go to our default behaviour – what we know – and this can make things worse. This Know How will help you understand how to handle conflict, and try and turn it into something productive.

 

Download the How to handle conflict Know How

The choice of topics are driven by the needs of our community. So, if we have lots of questions around a focus, such as immunotherapy – hey presto, a Know How will be written.

Where a Know How involves health information, they are written following our rigorous Information Standard process, so that you know the information is trustworthy and reliable.

If you would like a Know How written, please email hello@brainstrust.org.uk. And of course, if you’d like to chat about any of these Know Hows then don’t hesitate to get in touch.

Did this information make you feel more resourced, more confident or more in control?