Claire B

In 2007 I was working in an oil and gas company as an administrator/PA in London. I was there for six months and really enjoyed it.

Before and during that time, I was experiencing some really bad health issues. I kept getting terrible headaches, my speech was going out the window, I couldn’t say the words I wanted to say, my vision would black out and my sight had deteriorated altogether. I knew there was something wrong with me so I kept going to the doctors for help. Time after time, they would suggest that it was ‘nothing’ and kept dismissing my case so after a while, I just assumed that these problems were little things about ME. I would start to just believe it was from nerves, hunger or tiredness. Obviously I know now that these things led up to what they really were – a brain tumour.

It was in May 2008 when I was diagnosed.

In that year, one day, I decided to go to the opticians for my eyes. I felt incredibly frustrated that I wasn’t getting the help I needed. I felt that none of the doctors believed me and that nobody was listening. However, this time round, the opticians spotted some bleeding in the back of my eyes and thought there may be some cysts in both eyes. Following on from this, she referred me to St George’s Hospital where they scanned my brain. They found the tumour which was 10cm – very big for a tumour. They said that due to the size, it must of been there for ten years, or over.

The next day I went into surgery to get it removed; waiting any longer could have killed me.

I was left with some really horrible symptoms. I couldn’t speak properly, I didn’t recognise people, my memory was very vague, my legs and arms were weak and both of my eyes were damaged (I have no proiferal vision in my right eye). I am also on medication for seizures which keeps it under control. I will be on tablets for the rest of my life. It sucks to think you have to depend on tablets.

This all happened within the space of six months and after a while of undergoing rehabilitation, I had returned to the oil and gas company to begin working again. I was very lucky for them to have me back. However, all staff were later made redundant due to a merger.

After this, I applied to many other jobs and was getting offers for many positions, but I found that they were not ideal for me. I was always given jobs that I couldn’t cope with because they were too overwhelming. Therefore, having tried and seen that these jobs weren’t for me, I went to the job centre (although I was reluctant at first). The job centre told me about Attend and how they could help, support and find jobs for me. I was really enthusiastic about this.

I arrived at Attend in 2011 and did all sorts of things. A part of what the staff did was help you understand what had happened to you, how to understand your body and your brain. It was about helping you cope with the state you’re in now and how things would be different. They taught me coping strategies and I learnt how to go forward and not give up.

I was encouraged to do some voluntary work and they helped to find me a placement in my local St Christopher’s Hospice. There, I was doing various tasks which were mainly admin related. It was nice being back in a working environment again . It made me feel more comfortable and able in myself.

Since then, I have developed my own company – I am the founder of a website called ‘Aunty M Brain Tumours’ and have set up all kinds of social media network groups. Aunty M Brain Tumours acts as an online community for those affected by brain tumours. I actually created it initially because I saw what Attend was doing and really wanted to develop a space for individuals who specifically have or had brain tumours to come together, support, advise and help each other. Attend was a big influence on my website development and so I’ll be sure to return the favour and refer people to Attend if they are capable of coming.

I also have my own book out, called ‘Brain Tumour’s Travel Tale’. During my ordeal, I was writing a diary that recorded things that I discovered, things that had happened and things that were going to happen. It’s a very intimate tale of my personal experience and a year ago, I decided to turn it into a book and have put it on Amazon.

So far, it is doing well. It was released in late December 2012, just before Christmas, and insofar I have sold around 58 books and have had over 600 digital downloads.

For the future, I plan to keep on going with Aunty M Brain Tumours. It can be quite difficult because I don’t ask for money from the users so I really hope to secure some income to keep the site going. It’s really important to me.