My brain tumour and me…

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By Claire Bullimore

I will always remember the day the doctor said: “I’m very, very sorry but we can’t help you, you have a very small percentage chance of recovery.”

I just sat there looking around the room trying to get my head around it.

“A tumour,” I said.

He said he was surprised I had not been showing symptoms a long time ago as it was one of the biggest he had seen. Must have been growing for around 10 years he said.

I said I had been telling my GP I had problems for years but they wouldn’t help me. He said he was going to get me a bed ASAP and get me into surgery. I felt sick. I just said “Wow, OK.” What else can you say to that?”

My train pulled into London Bridge Station that early morning in May 2008. I grabbed my usual coffee and walked to my building.

I had a beautiful view over the river and always loved the location I was in. I was 25 and enjoying my life, London is such a beautiful city and I loved being a part of the hustle and bustle of the city.

Overnight my life went from independent woman to where am I now. Anxious waiting for results, depending on a number of tablets including seizure medication.

I suddenly became a child again and was very dependent on my mum. I decided from the day I heard the words “You have a brain tumour”, this will not beat me and my faith would pull me through and win.

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Claire’s brain tumour x-ray

I knew things were going to change drastically, I had lost my speech, wordfinding, partially blind, weak on one side, heavily reliant on seizure medication, fatigue are just a few to mention. I wanted to be given a chance to get well. I wanted a chance to try something else rather than straight to surgery.

People would say they thought I was very strong and my positivity was inspiring, but the fear I was left with was life destroying. I would never be able to do the job I had before, I would never drive again, I would deal with fatigue for the rest of my life.. however determined you are; medication and brain surgery wears you down.

After my own battle to get as much as possible out of my life regardless of my health and disabilities. I knew I wanted to help others. While I sat at home recovering, I set up a support group through Facebook. I was about to meet others who understood. I knew very quickly that I could sympathise with others affected by a brain tumour. I set up www.auntymbraintumours.co.uk as a place for people to meet others.

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I have over 15,000 people viewing my social media pages and I can see what people want, don’t want, what their fears are. It is not just for patients with tumours but also for anyone who has been affected by a brain tumour.

I believe the support people need is not just during the initial diagnoses but long after the treatment. Aunty M Brain Tumours is a life-long support network”

Join our community and meet people who understand. Join us on Facebook and Twitter I am a presenter on Croydon Radio (online) and host a weekly show dedicated to people affected by a brain tumour. It is there to encourage everyone, it is somewhere they can learn about the issues that can affect them.

So that is why I support the Saatchi Bill.

I want my friends and others who are suffering from cancer or other long term illnesses, to be able to say to their doctor “can you do anything, what are the treatments available, is there anything new that I can try?’ and they will say ‘yes’

(read more about Claire’s story in her book: A Brain tumour’s travel tale)

 

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