Talj’s Blog

26th January 1984 – 11th November 2006

An Uckfield woman is promoting an organisation she formed which provides information about everything relating to brain tumours.

Natalya Jagger set up Brain Tumour Buddies last year after being struck by the lack of information for brain tumour patients in the UK.

Natalya first became aware of the disease when a friend’s daughter, who lived on the Wirral, was diagnosed with a brain tumour and died at the age of 22 in 2006.

Natalya joined online brain tumour groups at the time and started collecting information which she has since brought together on a website which can be found at www.btbuddies.org.uk.

The information is for patients, families and caregivers and has been praised by organisations like Macmillan Cancer Support and the Brainstrust as well as brain tumour survivors.

Natalya, who is taking advantage of International Brain Tumour Awareness Week, to tell people more about the devastating disease said: ‘Over time, and through Rose’s short battle, I have learned just what a huge impact the diagnosis and side effects of a brain tumour can have on not just the patient, but their family, carers and friends.’

She said there was, as yet, no cure for brain tumours but she believed greater awareness of the illness would lead to more support, increased funding for research and better outcomes for all whose lives were touched by the disease.

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Article on Uckfield News website following my press release for International Brain Tumour Awareness Week

By Lorraine Connolly, Community Newswire

A Tunbridge Wells man is this week celebrating International Brain Tumour Awareness week, thankful to be alive after being given just months to live four years ago.

David Grant was 48 when he was diagnosed with a Glioblastoma Multiforme, a World Health Organisation grade 4 brain tumour (the most aggressive grade) in August 2005.

Having no history of headaches David went from being a person who was sorted out with a 16p packet of paracetamol, to being rushed into the operating room for a craniotomy, in just 11 days.

His operation was a success, removing a tumour the size of a walnut. However, David’s wife Lisa, was told the tumour was malignant and highly aggressive. Doctors advised her he had just 12 to 15 months left to live.

Today, four years later, following radiotherapy and chemotherapy, David has far outlived the medical team’s expectations. He continues to work full time and is enjoying watching his daughter grow.

David said: “Ever since the operation I’ve had regular MRI scans. The period between them has lengthened now to six months. June was my 13th post-op scan and my consultants analysis of it – that scan could not have been better – was the same as the previous one.”

He added: “My next scan December – bring it on.”

However, stories like David’s are rare. While the five-year survival rates for many cancers is more than 50% and rising to over 90% for some cancers, for brain tumours, the five year survival rate for men is 14.1% and women is now only 13.8%.

International Brain Tumour Awareness week is an opportunity for those affected by a brain tumour to raise awareness of the disease and BT Buddies, a project founded by Uckfield resident, Natalya Jagger, aims to do just that. It provides vital information, support and assistance to people affected by a primary or secondary brain tumour and to raise awareness among the general public (including patients, their families, carers and medical professionals) about all areas relating to brain tumours.

Natalya founded the organisation after a friend’s daughter, Rose, was diagnosed with a brain tumour in 2006 at the age of 22. She died later that year.

Natalya said: “I knew nothing about brain tumours. Over time, and through Rose’s short battle, I have learnt just what a huge impact the diagnosis and side effects of a brain tumour can have on not just the patient, but their family, carers and friends.”

As yet, there is no cure for brain tumours. But campaigners believe greater awareness will lead to more support, increased funding for research and better outcomes for all those affected.

Brain tumours have overtaken leukaemia as the biggest cancer killer of children in the UK. The number of children dying from a brain tumour in 2007 was 33% higher than in 2001, while child deaths from leukaemia were 39% lower than in 2001. In 2008, 85% more people under the age of 65 died from a brain tumour than from leukaemia. Today, one in five cancers now spread to the brain. Despite this, brain tumour research receives less than 1% (0.7%) of cancer research spending in the UK.

For more information on brain tumour, or to find out about the work done by BT Buddies go to www.btbuddies.org.uk

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Following the distribution of a press release by BT Buddies (me) articles have started to appear here and there to shine a light on brain tumours and those affected by them during International Brain Tumour Awareness Week