Need help now?Resources
We need the right resources with us on our journey; a little bit of planning goes a long way! These are the resources that we have found useful. And if you have an idea which we have missed but which you have found invaluable then send it our way – we’ll add it to this section.Brain box
The new brainstrust brain box - the ‘must have’ support toolkit for people with a new brain tumour diagnosis and their carers.
We appreciate how difficult things can be once you are diagnosed with a brain tumour; the ‘4.00am moments', the travelling to and from appointments, the stream of questions that pop into your head, trying to remember the jobs of all the people that you'll meet on your journey, and knowing who to turn to and when. A juggling act that you don't need when you just want to focus your energy on feeling better. So to assist brain tumour patients, we’ve launched this invaluable aid to keeping on top of things.
The brainstrust tool-box shaped ‘brain box’ contains:
A brain book. As the patient journey unfolds, they will need to record lots of things. This is a place for them to do just that. In it, they can record information about themselves, about the team that are looking after them, they can record appointments and outcomes, and there's also plenty of space for patients to jot down those questions that pop into their head in the early hours. Patients can also keep a disc of their brain scans in here, and there's also a pocket in the back of their brain book where they can file letters, or receipts for travel expense claims.
A 'Have You Lost Your Way?' booklet. This pocket-sized companion is packed with useful tips to manage the ‘care pathway’ and describes the role of the different professional people likely to be encountered on the way from first diagnosis of a brain tumour to treatment to after care. By keeping it close to hand, patients can quickly find out who does what when it comes to managing the treatment of their brain tumour.
A copy of the ‘Living with a Brain Tumour’ book. Written by brainstrust patron Professor Peter Black MD PhD, professor of neurosurgery at Harvard Medical School and rated as one of the top ten doctors in the USA, it is targeted at patients with brain tumours, their families and their friends. This book is acknowledged as an indispensable guide for patients and their immediate support group.
A pill box. Both necessary and useful.
There is even a box of tea bags to help you to relax over a quiet brew and get to know your ‘brain box’ better! And, for young children our mascot, a crocheted red elephant, is included.
If you are a brain tumour patient, or if you are looking after someone who has a brain tumour, the box won’t cost you a penny. We just need to know a little bit more information about you before we send you your box. Please complete to the short form below to request your brain box:
Become one of the amazing people that sponsor a brain box (or 2, or 3 or more)
Do you like the idea of a brain box? Would you like to help someone affected by brain cancer directly, and know that you’re thoughts and donation have gone straight to the person that needs them most? Then why not sponsor a brain box.
Every brain box costs brainstrust about £40, but provides priceless information to people living with a brain tumour. A donation of any size to help us cover these costs, and your words of support or advice will make a real difference to someone, somewhere who has just received a life-changing brain cancer diagnosis.
Have you lost your way booklet
brainstrust provides its booklet “Have you lost your way?” to neuro-oncology specialists and Macmillan Centres nationwide. Many patients find that they are left to manage their care pathway for themselves. brainstrust has developed this resource with Andrew McEvoy, Consultant Neurosurgeon at the National Hospital for Neurology and Neurosurgery, to help you navigate your journey.
Click here to view interactive online booklet
Click here to open and download printable pdf
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Bookshelf
Was it C. S. Lewis who said 'we read to know that we are not alone'? Since our voyage began I have read copious books related to neurosurgery – not all non-fiction. If reading helps you, then here a few recommendations.And if you purchase a book through our store Amazon will donate 10% of what you spend to brainstrust.
Visit the bookshelf
Money matters
As if you haven’t got enough to worry about. Having a brain tumour will, at some point, impact on you financially as well as physically and emotionally. The same guiding principle applies – look this tiger in the eye. The more prepared you are, the better you will be prepared if you need additional financial support.View money matters
Glossary
Flair sequence? Positron? Glial Cells? Feel like you are back at school? Faced with a new, complex language really can make you feel all at sea. Use our glossary to help you navigate the doctors’ lingo.View the glossary
Useful contacts
We've compiled a useful list of support groups and neurocentres around the country.View helpful contacts
Useful links
Navigating your way through the Internet can be daunting. Some sites are trustworthier than others. We have listed here the sites that we know people have found useful, so although you won’t be able to shop online here, you will be able to find out ‘stuff’.View our links
