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The web Directory of Information Materials for People Affected by Cancer is regularly updated and currently has details of over 1,900 booklets, leaflets, books and audiovisual materials for people affected by cancer. Most have been published in the last five years but we have included some older ones that are still useful.

Results: 187

Cover image of 'Behaviour and personality change. A resource to help you understand and manage behaviour and personality change when living with a brain tumour'

Behaviour and personality change. A resource to help you understand and manage behaviour and personality change when living with a brain tumour (January 2020)

Brainstrust

Up 60% of people diagnosed with a brain tumour experience behaviour and personality changes (BPC). This booklet covers: understanding BPC; what we mean by BPC; causes; symptoms; how BPC is manifested; how it is measured; mood journals; strategies to help people cope; and treatment options and self-help strategies. It also has information for carers, details of who can help, and questions to ask.

Cover image of 'Fatigue and brain tumours'

Fatigue and brain tumours (January 2020)

The Brain Tumour Charity

This leaflet aims to help patients understand why they may have less energy. It explains what cancer-related fatigue is and describes the symptoms and possible causes. It has suggestions for coping with fatigue and answers some commonly asked questions and also offers some practical suggestions for coping with the emotional and physical effects of fatigue.

Cover image of 'Meningioma (in adults). What you need to know'

Meningioma (in adults). What you need to know (January 2020)

The Brain Tumour Charity

This leaflet gives an overview of meningiomas in adults and how they are treated and answers some of the questions you may have about this type of tumour.

Cover image of 'Secondary breast cancer in the brain'

Secondary breast cancer in the brain (August 2020)

Breast Cancer Care

A booklet for people who have been diagnosed with secondary cancer in the brain that has spread from the breast. It describes what secondary breast cancer in the brain is, what the symptoms are, and the investigations. Briefly outlines the treatment options. Lists useful organisations.

Cover image of 'Mindfulness'

Mindfulness (April 2020)

Brainstrust

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

Cover image of 'How to deal with money worries'

How to deal with money worries (July 2020)

Brainstrust

This factsheet provides a framework to hlep people deal with money worries. 

Cover image of 'How to be assertive to get the support that you need'

How to be assertive to get the support that you need (March 2020)

Brainstrust

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

Cover image of 'How to live with uncertainty'

How to live with uncertainty (March 2020)

Brainstrust

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 factsheet will help you get comfortable with living with uncertainty.

Cover image of 'How to build a supportive team around you'

How to build a supportive team around you (March 2020)

Brainstrust

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

Cover image of 'Lasting power of attorney'

Lasting power of attorney (March 2020)

Brainstrust

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

Cover image of 'How to get a carer’s assessment'

How to get a carer’s assessment (March 2020)

Brainstrust

This factsheet 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.

Cover image of 'How to have a voice as caregiver'

How to have a voice as caregiver (March 2020)

Brainstrust

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 factsheet will help you find your voice as a caregiver of someone with a brain tumour.

Cover image of 'Glossary'

Glossary (January 2019)

Brainstrust

A glossary of some of the words that patients may come across during treatment. 

Cover image of 'Proton beam therapy clinical research. The current state of clinical research'

Proton beam therapy clinical research. The current state of clinical research (January 2019)

Brainstrust

This leaflet looks at research into proton beam therapy. It considers the current state of research, why research is needed, and how do we bulild the evidence.

Cover image of 'Understanding the pathway. When does proton beam therapy happen?'

Understanding the pathway. When does proton beam therapy happen? (January 2019)

Brainstrust

This leaflet describes when proton beam therapy is given, preparation for treatment, and what happens afterwards.

Cover image of 'How it works. What is proton beam therapy?'

How it works. What is proton beam therapy? (January 2019)

Brainstrust

This leaflet describes what proton beam therapy is and how it is different from conventional external-beam radiotherapy. It also explains the potential benefits and drawbacks of proton beam therapy.

Cover image of 'Proton beam therapy myths. Myths that need busting'

Proton beam therapy myths. Myths that need busting (January 2019)

Brainstrust

This leaflet looks at some of the myths around proton beam therapy: protons can treat any cancer; proton beam therapy is more effective than conventional radiotherapy; protons can cure cancer that other treatments can’t; having proton beam therapy through a private provider is better than through the NHS; decisions to be treated with proton beam therapy are based on money; other countries use proton beam therapy in most cases; most people should be treated with proton beam therapy.

Cover image of 'Driving'

Driving (June 2019)

Brainstrust

This factsheet provides information on the law around driving with a medical condition, the process when involving the DVLA and your medical team, and organisations that may be able to help.

Cover image of 'Where should I have proton beam therapy? NHS or private?'

Where should I have proton beam therapy? NHS or private? (January 2019)

Brainstrust

This leaflet outlines the advantages of having proton beam therapy in an NHS setting, rather than privately.

Cover image of 'Should I have proton beam therapy? How do I make the right decision?'

Should I have proton beam therapy? How do I make the right decision? (January 2019)

Brainstrust

This leaflet is not about whether someone should or should not have proton beam therapy. Rather, it explores the approaches that can be taken to help people make a decision.

Cover image of 'Understanding primary brain tumours'

Understanding primary brain tumours (September 2019)

Macmillan Cancer Support

This booklet is about primary brain tumours. It is for anyone who has been diagnosed with a primary brain tumour. There is also information for carers, family members and friends. The booklet explains the signs and symptoms of a primary brain tumour, and how it is diagnosed and treated. It also has information about emotional, practical and financial issues. 

Cover image of 'What to expect. What is it like to be treated with proton beam therapy?'

What to expect. What is it like to be treated with proton beam therapy? (January 2019)

Brainstrust

This leaflet describes what happens when proton beam therapy is given, and the possible side effects. 

Cover image of 'Understanding the decision process. Who is proton beam therapy suitable for?'

Understanding the decision process. Who is proton beam therapy suitable for? (January 2019)

Brainstrust

This leaflet explains who proton beam therapy is suitable for and how the decision is made. Includes Care Pathway and Clinical Dependencies Referral and Care Pathway 1 (NHS and overseas) and Pathway 2 (NHS only).

Cover image of 'Proton beam therapy and brain tumours'

Proton beam therapy and brain tumours (October 2019)

The Brain Tumour Charity

Proton Beam Therapy (PBT) is a highly specialised form of radiotherapy that is more targeted than conventional radiotherapy. This means it causes less damage to the healthy tissue of the brain and so causes fewer side-effects. However, PBT is only suitable for a few types of brain tumour and, in most cases, does not lead to better outcomes than conventional radiotherapy. This factsheet describes PBT and how does it compare to conventional radiotherapy, who can have it, what it involves and side-effects, and answers some commonly asked questions.

Cover image of 'How do I know if information on the web is reliable?'

How do I know if information on the web is reliable? (July 2019)

Brainstrust

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 factsheet 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.

Cover image of 'Driving and brain tumours'

Driving and brain tumours (July 2019)

The Brain Tumour Charity

This leaflet outlines some key facts in relation to driving for people who have a brain tumour.

Cover image of 'How to deal with the overwhelm'

How to deal with the overwhelm (January 2019)

Brainstrust

If you are a patient living with a brain tumour, the change in your situation may be difficult to deal with and there may also be changes in your ability to function as you used to. This factsheet has tips to help you cope.

Cover image of 'Cannabinoids – information for patients and carers'

Cannabinoids – information for patients and carers (January 2019)

Brainstrust

This factsheet explains the difference between Cannabidiol (CBD) and cannabis oil, the evidence to date, and the current legal status.

Cover image of 'Immunotherapy: DCVax® - information for patients and carers'

Immunotherapy: DCVax® - information for patients and carers (January 2019)

Brainstrust

Brain tumour immunotherapy, particularly DCVax®, is gaining an increasing amount of media coverage and interest. This Know How explains what immunotherapy is, what DCVax® is, and the current state of research and evidence to date. 

Cover image of 'How to get a second opinion'

How to get a second opinion (January 2019)

Brainstrust

This factsheet describes the pros and cons of a second opinion, clarifies the options, and explains how to seek another opinion.

Cover image of 'How to handle conflict'

How to handle conflict (January 2019)

Brainstrust

Living with a brain tumour can cause stress and this can cause emotions to run high. This factsheet has tips to help solve conflict.

Cover image of 'Finances and benefits'

Finances and benefits (November 2019)

Brainstrust

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. This factsheet finances and benefits that could support you and your family.

Cover image of 'Returning to work'

Returning to work (January 2019)

Brainstrust

Guidance on returning to work after treatment, or when your caring role has ended.

Cover image of 'Brain tumour biomarkers. What you need to know'

Brain tumour biomarkers. What you need to know (July 2019)

The Brain Tumour Charity

This leaflet explains what biomarkers are and how they may be used in the management of brain tumours.

Cover image of 'Going home after brain tumour surgery. A discharge guide for people with a brain tumour'

Going home after brain tumour surgery. A discharge guide for people with a brain tumour (July 2019)

The Brain Tumour Charity

Going home after brain tumour surgery can feel quite overwhelming. We know there can be a lot of information to process and you may find that you have more questions, or need additional information or support. This leaflet provides information and answers to questions often asked by people after brain tumour surgery.

Cover image of 'Diet and nutrition'

Diet and nutrition (December 2019)

The Brain Tumour Charity

This leaflet is for anyone receiving treatment or who has recently completed their treatment.There’s no specific food or type of diet that can control or treat brain tumours, but controlling your diet may help to improve your quality of life and manage the side-effects of treatment, such as dry mouth, nausea, poor appetite, and weight loss.

Cover image of 'Coping with thinking difficulties (cognitive impairment)'

Coping with thinking difficulties (cognitive impairment) (September 2019)

The Brain Tumour Charity

This leaflet explains what is meant by cognitive impairment and has suggestions to help people cope.

Cover image of 'Speech and language difficulties'

Speech and language difficulties (September 2019)

The Brain Tumour Charity

This leaflet explains how brain tumours can affect communication. It describes the communication difficulties that someone with a brain tumour may experience, and the emotional difficulties that this may cause for them and their family and friends.

Cover image of 'Personality changes'

Personality changes (September 2019)

The Brain Tumour Charity

This leaflet describes personality changes that may occur in brain tumour patients and the reasons behind these changes. It has advice on coping with personality changes and sources of support.

Cover image of 'Thinking difficulties (cognitive impairment)'

Thinking difficulties (cognitive impairment) (September 2019)

The Brain Tumour Charity

Many people diagnosed with a brain tumour will have some form of cognitive impairment (difficulties with their thinking abilities), due to the presence of the tumour and the pressure it puts on the brain. This leaflet describes the types of impairment that might develop and how they are affected by the location of the tumour, treatment and drugs, and by emotional and psychological factors.

Cover image of 'Coping with depression and low mood'

Coping with depression and low mood (October 2019)

The Brain Tumour Charity

This leaflet has suggestions to help you cope with low mood and depression.

Cover image of 'Coping with speech and language difficulties'

Coping with speech and language difficulties (August 2019)

The Brain Tumour Charity

This leaflet has tips for dealing with speech and language difficulties from people affected by a brain tumour and from healthcare professionals specialised in treating brain tumours. 

Cover image of 'Ependymoma (in children). What you need to know'

Ependymoma (in children). What you need to know (July 2019)

The Brain Tumour Charity

This leaflet gives an overview of ependymoma in children and answers questions you may have about this type of tumour.

Cover image of 'Depression and low mood'

Depression and low mood (October 2019)

The Brain Tumour Charity

This leaflet explains what depression is and describes the signs and symptoms and possible causes.

Cover image of 'Being a carer'

Being a carer (July 2019)

The Brain Tumour Charity

This leaflet has suggestions to help carers manage their role, such as having a break, and getting practical and emotional support.

Cover image of 'Symptoms diary'

Symptoms diary (2019)

Headsmart

Brain tumours are relatively rare, but early diagnosis can save lives, which is why keeping track of any potential symptoms can help to make the most out of a doctor’s appointment and may lead to a quicker referral or better reassurance. You can use the diary at your appointment to describe the symptoms and explain your concerns.

Cover image of 'Returning to school. A teacher's guide for pupils with a brain tumour, during and after treatment'

Returning to school. A teacher's guide for pupils with a brain tumour, during and after treatment (2019)

The Royal Marsden NHS Foundation Trust|Cerebra

This publication aims to guide teachers and schools faced with the task of supporting a pupil with a brain or spinal tumour who may be absent for some time, or who may have sporadic attendance with a very serious illness and potentially devastating long term effects. It explains what the pupil may be going through both medically and psychologically. It offers practical strategies for ensuring supportive re-integration back to school. Suggestions are given for how teachers, assistants and SENCOs can provide sustained and targeted support for pupils who face extended treatments, devastating long term side effects or an uncertain future.

Cover image of 'Neurosurgery for adults with brain tumours'

Neurosurgery for adults with brain tumours (July 2018)

The Brain Tumour Charity

This factsheet gives an overview of neurosurgery for brain tumours and gives an idea of the processes and procedures you may experience.

Cover image of 'Steroids for adults with brain tumours'

Steroids for adults with brain tumours (May 2018)

The Brain Tumour Charity

This factsheet describes what steroids are, how, when and why they are used, and the possible side effects. It also answers some questions that you may have about steroids.

Cover image of 'Clinical trials for brain tumours'

Clinical trials for brain tumours (June 2018)

The Brain Tumour Charity

This factsheet describes what a clinical trial is, the four phases in developing a new treatment, and the benefits and risks of taking part.

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