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National brain tumour research funding needs to increase to £30-35 million a year

Holby City review: Brain Tumour Research PR Manager Liz Fussey on why benign is never “fine”

I watched the episode on Holby City last night about Ric being diagnosed with a brain tumour and was pleased that this was an opportunity to raise awareness of this devastating disease. However, I came away feeling unhappy that the underlying implication was that it was good news that the tumour was low-grade.

I know from my own personal experience how being diagnosed with a low-grade brain tumour can be completely life-changing and even life-wrecking.

My brother Andrew, then 33, was diagnosed with a low-grade astrocytoma brain tumour in 2002 after suffering severe headaches and then a massive seizure.

Since then, Andrew has undergone three major brain surgeries and multiple surgical procedures to remove cysts and control the build-up of fluid in his brain.

In the early years he was able to return to work, but after regrowth of the tumour, resulting in radiotherapy treatment and as a consequence of his surgeries, Andrew has been left with paralysis affecting his right side – he can’t use his right arm, his right hand is a useless claw and he walks awkwardly, dragging his right foot.

Andrew has also been affected cognitively – he struggles to find the words to speak and can’t manage to use the phone to book an appointment with the GP, so has lost his career, having been unable to work for many years. Now 51, he lives in sheltered housing alongside old people with regular visits from a carer because there is no provision for people his age in the area.

He lost his driving licence long ago which only added to his loss of independence.

Andrew’s life has changed out of all recognition as a result of his brain tumour. He has lost the social life he once enjoyed – going out with his mates to the pub, to the cinema or to watch a football match. It’s a real effort for him to struggle in and out of a car. 

He used to love travelling around the world while indulging in his other great love – photography. It is heart-breaking to see the lovely photos he once took of far-flung places on the walls of his living room and know that he will never experience this again.

Before experiencing the full impact of his brain tumour, he had a lovely girlfriend. I often feel very sad thinking that he will more than likely never find a partner to share his life with, let alone get married, or have children.

Having a low-grade brain tumour really can be a living nightmare.

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