Friday, March 6, 2015

Raising Awareness of Bandanas for Brain Tumours

Today is Bandanas for Brain Tumours Awareness Day

As I wait for the results of my 6th annual brain scan to check all is well, I reflect on how a brain tumour changed my world. 

In 2008 the shock diagnosis of a brain tumour catapulted me into emotional shut down.  When I asked the Neurosurgery registrar to give me the hard facts he looked me in the eye and said if the tumour is malignant you will have about 18 months to live; if it is benign you will live but it will be a different life.

My overriding thoughts were; benign that’s good isn't it? 

Get in there, get it out and I will get on with my life! 

The words you will live a different life were but a background murmur.

I had no idea what a meningioma was.
I learnt that it was a tumour growing in the meninges; the layers protecting the brain and spinal cord.  Meningiomas usually grow inwards putting pressure on the brain. The majority of Meningiomas are low grade (benign).

In my opinion the words benign and brain tumour are not comfortable bed partners. Benign is defined in the Oxford Dictionary as: 1.gentle, mild, kindly 2.fortunate, salutary. 3. (of the climate, soil) mild, favourable. 4. In medical terms not malignant.

Other than not malignant; I would never associate these definitions with ‘brain tumour’. In the brain tumour world, the term low grade and benign are used interchangeably; low grade seems more apt. Brain tumours are Graded between 1 and 4 depending on the degree of malignancy/speed of growth. Mine was Grade 1.

Any growth inside the closed skull can cause damage as the tumour grows. In the case of slow growing meningiomas, the brain accommodates gradual growth like a bulb expanding in soil and the tumours can become quite large before obvious symptoms arise. 

My parasagittal tumour (arising across the middle - between the two hemispheres of the brain) had spread like icing across my head before it caused problems.

Brain Tumour Research is chronically underfunded in the UK, receiving less than 2% of all cancer research funding. Yet research is vital to improve the treatments and diagnosis for the thousands of people diagnosed with a brain tumour each year, ultimately saving lives and improving quality of life.

Three important Charities which fill some of the gaps in Research, information and ongoing psychological support for patients and carers are 

The Brain Tumour Charity

Brain Tumour Support

If you fancy doing a spot of fund raising I make a plea for these organisations.

March is Brain Tumour Month and Wearing a Bandana for Brain Tumours will give fund-raising a head start.