In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Claire Bullimore’s brain tumour journey began in 2006, when, after several years of experiencing frequent headaches, she started suffering from debilitating migraines and blurred vision. Two years later, aged just 25, she was diagnosed with an intraventricular meningioma. Since then she has undergone brain surgery and had to give up her driving licence and her career. Claire, who is from South London, now lives with disabilities and a crippling anxiety disorder. Her story, however, is one of hope and positivity, as her life-changing diagnosis inspired her to create an online support network for other patients and survivors; a place for people to share stories and help raise awareness of brain tumours.
Here is Claire’s story…
For at least 10 years prior to my brain tumour diagnosis in 2008 I had been having headaches. I was able to control them with the usual aspirin you can buy over the counter.
“However, in late 2007 when I was 24, my headaches were getting worse and more frequent. I was always feeling very tired.”
At the time, I was working in the recruitment team an investment bank in the city. I loved the hustle and bustle that goes with a city of London job, but in 2007 it became too much.
I went to my doctors for a blood test and it showed I had very low ferritin levels. They put me on some ferrous sulphate tablets. I said I was really struggling with my headaches and that it was causing me sleepless nights. They seemed to just brush off my concerns and sent me on my way.
One night I was sitting in the office and we were all going out for a dinner and on to an awards ceremony. I said to my supervisor that I wasn’t feeling too good and that I had tunnel vision. I suggested I should go home but she said it was really important that I be there and that I would be fine (I think I could have done with assertiveness lessons at this point). I just couldn’t see properly. I found that if I sat still, my vision would start to come back. I gritted my teeth and got on with it.
The following day my boss wanted to chat. She asked, ‘was I happy at work?’. I said ‘yes, but my headaches were getting worse, especially in the mornings.’ Like many of my colleagues, I would need to wake up at 6.30am every day to get to work by 8am. I didn’t really have much support from my boss, so I decided to find a new role elsewhere.
I wanted a job nearer to home, so that I would be able to have more time in the morning, to help me cope with the headaches. I handed in my notice and began looking for a new job.
At the beginning of December, I found a position with much better hours. I really enjoyed the role and worked hard. But, in April, my memories and my recollections of things were starting to disappear.
“I couldn’t separate my thoughts and was constantly angry inside. I was forgetting important things and this was starting to have an impact on my work”.
In May 2008 my headaches were excruciating. I had never felt anything like it. It was like somebody was grabbing my head and slamming it against a concrete wall. I tried the usual tablets, but nothing touched the pain. I could only cry and pray that it would stop soon. I was in so much discomfort, I would be sick. Night and day were just as bad as each other. I would dread waking up.
The list of symptoms was getting longer and longer. It was during an optician’s appointment in 2008 that something ‘serious’ was finally discovered when they were looking at the back of my eyes. She said that she thought it might be cysts, as she could see the pressure caused by bleeding on the eyes.
“The optician sent me to St George’s and I didn’t come out of hospital for another 17 days. After years of trying to find out what was causing my symptoms, I couldn’t believe how quickly everything happened in the end.”
I was diagnosed with a 10cm low-grade intraventricular meningioma. It needed to be removed. I met my neurosurgeon, Mr Pawan Minhas, who explained what was happening. He discussed potential risks, which included problems with balance, coordination, speech, vision, memory or muscle function. My parents, who flew over from Australia at very short notice, arrived 20 minutes before I was wheeled into the operating theatre.
“Ten hours later the operation was over and it had been a success. They had managed to remove all of the tumour and they were sure it was a non-cancerous.”
It took a while in hospital to realise that my peripheral vision was severely damaged. I kept bumping into things and I soon realised it was because I couldn’t see a large part of my vision. I have also been left with numbness on my right side. When I think of the list of potential risks though, I am grateful, as I know it could have been much worse. I managed to go back to work, half a day a week at first, gradually increasing to two days, but I was making too many mistakes. I would send important emails to the wrong people. My spelling was horrendous. My brain just wasn’t functioning like it used to. My managers realised that I would struggle to be able to do my job properly, given the side effects I had been left with after surgery. It was at this point that the company I worked for happened to merge with another company and my office closed. My employers were really supportive. I think they felt sorry for me. Thankfully, they kept me on their health insurance policy and supported me financially but I had to give up my position.
“I felt useless. Aside from my professional life, I could no longer go out clubbing or to bars, all the things I used to enjoy as a young, carefree woman living in a big city. My life had changed massively.”
I was stuck at home and so the way I dealt with it was to connect with the brain tumour community online. I sought out fellow patients and survivors. Over time, I felt I wanted to do something to give something back and to help others on a similar journey to me. And so, in 2011, my blog ‘Aunty Meningioma’ was born. ‘Aunty’ as in ‘agony aunt’. Back then I didn’t realise just how many different types of brain tumour there are. Eventually I decided to change the name to ‘Aunty M Brain Tumours’, to make it relatable to anybody affected by any type of brain tumour. It started as a website and on social media but over the years ‘Aunty M Brain Tumours’ has gained momentum and lead to lots of other exciting opportunities to spread the word about brain tumours and the issues surrounding the disease.
I’ve always enjoyed keeping a diary, I think it dates back to my time at boarding school as a child, when my parents bought me a journal so I had a place to keep track of my thoughts and feelings while I was away from home. I continued writing diaries into adulthood and so when I went through my brain tumour diagnosis and treatment, writing about it came naturally to me. Eventually my diary became a book titled A Brain Tumour’s Travel Tale. In the book I reveal my true emotions and hardships of my brain tumour, surgery, recovery and the scars I’m left with inside and out. Publishing a book allowed me to pull together all of my thoughts on what I’d been through, as a way of helping others. It was also a means to share my life-changing experience with my family and friends.
“On the outside I looked fine but this is often an invisible illness and internally I was not fine at all”.
My anxiety levels were through the roof. I am still on anti-seizure medication and to this day I am still fearful of having fits and panic attacks and therefore have Cognitive Behavioural Therapy (CBT).
When I was promoting the book, I came across my local community radio station, Croydon FM. I was invited on to be interviewed about the book. Apparently, I have a good radio voice and that slot resulted in another invitation, this time to be a regular contributor to the station with my own show! It was so out of my comfort zone but I thought, why not? Having been through such a rough time, I was at a point in my life where I just wanted to grab any opportunity that came my way. I took nothing for granted anymore. I couldn’t do the position without help, as I struggled to find words. My Mum said we could do a ‘double act’ and when I couldn’t find a word, or I lost my train of thought, she would jump in. It became a ‘mother-daughter duo’ and it worked.
Through my experience of fighting a brain tumour, I have lost friends. Your paths change and you no longer have things in common with people that you were once close to. The radio show turned out to be another fantastic way of connecting with other people who understood what I had been through. It attracted listeners from all over the world.
“Lots of people got in contact to share their stories. It brought patients together and friendships were formed."
My book promotion also took me out on the road and my Mum and I visited more than 20 cities across the UK, joining brain tumour support groups and supporter get togethers. For the first time, I was meeting patients face to face rather than in cyber space or on the airwaves. It was great to be able to share my knowledge and experience with people who were newly-diagnosed and facing the same treatment I went through. Because I was further down the line, I could show them that there can be life after a brain tumour diagnosis.
“Sadly, due to the nature of this cruel disease, there are people I met who are no longer with us. That is really tough”.
I am really proud of what I’ve done with ‘Aunty M Brain Tumours’ and the tragedies I have encountered only serve to inspire me to continue reaching out to others in the brain tumour community. This disease is indiscriminate. It is particularly heart-breaking when you come across children affected by brain tumours. I am shocked and angered that while brain tumours kill more children and adults under the age of 40 than any other cancer, only 1% of the national spend on cancer research has been allocated to this devastating disease. It baffles me.
I started fundraising for Brain Tumour Research in 2011. I have made and sold greetings cards, taken part in a 5k Santa Run and a Superhero Run. I worked with my pupils from preparatory school, Lancing College Prep in Hove, when they took part in ‘The Grand Challenge’, helping to raise £1,247 for the charity in collaboration with Animal Free Research UK (formerly Dr Hadwen Trust). More recently I have attended All-Party Parliamentary Group on Brain Tumours (APPGBT) meetings at Westminster and continued to promote the work of the charity, including Wear a Hat Day, on my social channels and on the radio. Raising awareness is so important to me.
“I don’t have a vision or a particular plan for the future. My illness has taught me to take each day as it comes. I don’t know how I am going to feel from one week to the next.”
Before my surgery I used to have a karaoke business, at college, which I did as a ‘side hustle’. I used to love singing. I still enjoy it but the operation had an impact on my ability to recall lyrics. With the words in front of me on a screen, however, I am able to sing along in time to the music. I use an app called smule, which allows me to sing with people all over the world in a virtual duet or ensemble – I love it! It’s another example of how I have regained my confidence and got my old self back by connecting with like-minded strangers and taking every opportunity that comes my way. I always advise others in my situation to do the same.
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet historically just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.
Together we will find a cure.