Help & Support
What else can you do?
Well, be sure to ask as many questions as you feel you need to know the answers to. For example: what type of tumour is it and where is it? What happens next? What treatment options are available specifically for me? How will the tumour affect my day-to-day life? What is the prognosis? How can I gain a second opinion (seeking a second opinion is always worth trying)?
Keeping a diary of your diagnosis, treatment, questions, feelings and emotions is also a healthy response. It is a good way to help you understand what is happening, as well as a good reference to return to should you need to. We kept a daily diary from Taylan's diagnosis right up until his farewell.
Help and Support
A team of doctors, cancer specialists and health professionals will be available to help plan what happens next and provide you with the relevant care. They are there to work with you and help you make decisions. Ask them what you need to know and don't feel embarrassed that you might ask a trivial question. For example, we remember asking, "Is it safe to use a hairdryer?"
The medical experts you encounter will be invaluable and some may become your best friends, providing you with various information and support. They are vital points of contact, informing you of local support groups, financial assistance options and other help and advice. Or they may simply be available to hold your hand through your journey.
NB: please note that we are not medical advisors or doctors. The information laid out here is purely based on our own findings, understanding and personal experience, and is shared in an attempt to give you an introduction to the brain and brain tumours.
Helplines
Brain Tumour Research fellow charities are very active in setting up a helpline for patients and families of those touched with a brain tumour. Below is a list of who they are and how you can contact them.
The Brain and Spine Foundation helpline is a service run by neuroscience and other health professionals. The helpline covers all brain and spine conditions from fairly common to the very rare and can offer information and support on any medical or related social and emotional issues of concern.
Helpline number: 0800 808 1000
Brainstrust supports patients at the point of diagnosis, or at any point on this hard journey. They give practical advice about what you can do to take control of the situation, whether you are the person diagnosed with a brain tumour or a caring friend or relative. Advice is geared to each individual case and is based on a wealth of experience working with the brain tumour community, both in the UK and internationally.
Please call 01983 292405 or email hq@brainstrust.org.uk. You will receive a response within twelve hours, but a response is often immediate.
Brain Tumour Action provides support education, training and research for patients, relatives and professionals throughout the UK. The charity runs a Helpline which is open 24 hours a day and is manned by a trained counsellor.
Helpline number: 0131 466 3116
Brain Tumour UK's personalised, confidential support is available online, on the phone, by email and through support groups. Visit online or email for a personal, confidential response. Find support through Facebook and Twitter, too.
Helpline number: 0845 4500 386 from 9am-5pm, Monday to Friday, and is a member of the Helplines Association.
To find a support group near you or speak to others through Brain Tumour UK's Phone Pals service, please email support@braintumouruk.org.uk or call 0845 4500386
Support Groups
Being told you or a loved one has a brain tumour, can leave you feeling shocked, upset and very isolated.
There are many support groups and organisations nationally that will give you the opportunity to meet others who understands what you may be going through.
These groups can be found through the following organisations:
Brain Tumour Hub
The Brain Tumour Hub was developed by the charity Brainstrust. They have created an authorative, easy to navigate database of the brain tumour support and brain tumour advice services available to you nationally.
They have developed this site with the support of leading neuro healthcare professionals, with the aim of helping you turn over every stone in your search for the best brain tumour support services.
The brainstrust brain tumour support line is open 24/7 on 01983 292405.
Useful Links
We understand only too well that when you or a loved one is diagnosed with a brain tumour you are desperate for information.
Brain Tumour Research has a comprehensive list of UK charities involved in various aspects of brain tumour patient support.
HeadSmart is a project that aims to enhance the awareness of symptoms of brain tumours in children and young people.
