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If only brain tumour research could be funded in the same way as leukaemia and other cancers

Paul Daniels – In Our Hearts

DadRabbitWorld-famous magician Paul Daniels was 77 when he died just weeks after being diagnosed with a glioblastoma multiforme (GBM) brain tumour. He passed away at home in Berkshire, with his wife Debbie McGee at his side. Debbie chose to share his story in March 2017, to mark the first anniversary of her husband’ death.

“It is important to me to share Paul’s story because I want to help other people. Paul was one of those people who genuinely lit up a room when he walked in and I want people to know how this cruel disease stripped him of everything within a few short weeks to the point where he collapsed on the bathroom floor and I held him as he wept and asked me what was happening to him. By that stage, we knew Paul was terminally ill, he had been through so many tests and scans. He had spent time in hospital but was to confused he didn’t really know what was going on. I am pleased to think that he knew me but, sadly, he didn’t always know where he was. I held onto him as he managed to say: ‘What on earth is wrong with me?’ I just looked at him straight and said: ‘You’ve got a brain tumour Paul.’ He had been told before of course but I don’t think he was well enough to grasp it.”

Paul’s wife, Debbie McGee tells his story…

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Two minutes with… Dr Kieran Breen – Director of Research

Kieran Director of ResearchWhat’s the first thing you do in the morning?

Obviously I have a cup of coffee! But when I start work, I catch up with any emails which have come through overnight. Research into brain tumours is international, and I regularly receive emails from abroad, as well as detailed articles from scientific journals, informing me of new research findings. It is important that I keep up to date on relevant research in this field.

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Speaker’s House Speeches

Debbie McGee

Twelve months ago I lost my husband Paul Daniels to a brain tumour. He had been diagnosed with a GBM and, while we knew right away that time was short, nothing could have prepared me for his death, just one month and five days later.

We were fortunate that Paul was able to spend his last weeks at home. We were together every moment and, when he was well enough, we walked around the garden, watched movies together and ate ice cream. Paul could never find the words to talk about his diagnosis but he was a clever man and of course he knew he was dying. I remember him sitting quietly with tears rolling down his face as we watched the wedding scene in The Second Best Exotic Marigold Hotel.

After news about Paul’s brain tumour got out we had lots of letters from people saying try this or that – and we did. But the dreadful truth was that there was nothing to be done. Paul loved life too much to just give up, we continued to share a joke until just two days before he died. After nearly 30 years of marriage, all I could do was be with him, to hold his hand and tell him that I loved him.

 

Wayne Church

Our boy Finlay had a karate black belt, he was a Guinness world record holder and was awarded Pride of Birmingham’s “Child of Courage.” Throughout his short life he endured so much; neurosurgery, chemotherapy, radiotherapy, drug trials. He was funny, clever, handsome and brave. We lost him 17 months after he was diagnosed with a hideous and hateful GBM brain tumour.

He was just 11 years old.

We are ashamed to admit that there came a stage when we wished Fin had leukaemia. Investment in research and increased public awareness means leukaemia has multiple treatment options and generally better outcomes. But where is the investment and subsequent improvement in outcomes for patients with brain tumours? We fought as hard as we could for Fin and it was sickening to learn that his treatment for brain cancer was antiquated and barbaric, as cruel as the disease itself.

Ben Anderson

My name is Ben Anderson and today is my 18th birthday. I am proud to be here with you. My mum is here too and I am sure there were many occasions when she never dared to hope we would be doing something like this together.

I was 14 when I was diagnosed with a brain tumour. Mum was expecting a new baby and the story goes that when we were told, I turned to her to ask if I was going to die or would I be around to meet my new brother or sister. It was January before I made it back to school. Most of my tumour, a pilocytic astrocytoma, was successfully removed but when it began to regrow I had proton beam therapy treatment in the States.

Mum says that I became so tired and lethargic but she didn’t really know whether it was caused by the treatment or because I was a teenager!

I’m happy to say that I did make it to meet my little sister Zoe, I got back to school and passed my GCSEs and am now studying to become a teaching assistant and working with Year 1 children – quite a challenge

Bethany LLoyd

My sister Chloe and I lost our dad Steve in September 2015. He had a GBM brain tumour and had only just had his 40th birthday. Dad had worked on the Underground for all of his career and he retired after his diagnosis to spend time with us and our mum. He has lots of friends from work who have done some amazing fundraising for Brain Tumour Research while dad was still here and they have continued this in his memory. Dad loved West Ham, he had lots of mates, and he was always joking around.

Mum and dad sat us down on the sofa to explain about dad’s illness. They told us that his treatment wasn’t working and that he was going to get worse. They didn’t know how quickly it would happen or how but they promised to tell us what they knew. I was five and Chloe was three when dad was first diagnosed so, sadly, we were used to him being poorly and the numerous hospital appointments.

We did lots of things together as a family, had some nice holidays and we were bridesmaids when mum and dad renewed their wedding vows.

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Aaron Wood – In Our Hearts

Aaron Wood resizedStudent Aaron Wood died at the age of 24, four years after being diagnosed with what was thought to be a low-grade brain tumour, which later turned out to be a grade 3 anaplastic astrocytoma. He had undergone surgery and radiotherapy, and went back to uni to complete his studies to graduate with a 2:1 in philosophy. His dying wish, for scientists to use his brain to further their knowledge of brain tumours, was fulfilled. His mum Crystal hopes that his story will inspire others to never give up.

“Aaron saved my life before he was even born. I had a car accident when I was four months pregnant and it was a wake-up call, the moment I realised I had to start taking care of myself for the sake of my unborn child. A brain tumour robbed Aaron of the prime of his life and robbed me of my sunshine. It is so painful to think he saved me by giving me something to live for and yet, 24 years later, I was unable to save him.”

Aaron’s mum Crystal, tells his story…

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Budget 2017: Will the Chancellor help fund a cure for brain tumours?

budgetToday, the Chancellor Philip Hammond will rise to his feet in the House of Commons to deliver his first Budget, and the first of Theresa May’s Government. Ahead of his Budget speech, Hammond has already told the papers this weekend that he was ruling out “huge spending sprees”.

There’s a strong case for the Government to turn their attention to research into brain tumours. Last year’s Petitions Committee Report concluded that brain tumour research funding had been “neglected by successive Governments for decades”. As a result of this, the Government established a Task and Finish Working Group on brain tumours to determine how the situation can be improved.

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