STORY OF A HEADACHEClaire Bullimore - November 19, 2019
One weekend in August 2007, I was driving down to see my boyfriend and to meet his dad for the first time. His parents lived and worked in Dubai and his dad was over in the UK for a visit. I drove down the motorway in heavy traffic, eventually arriving in the countryside.
There was a huge concert going on near his house. It took me around four hours to get there instead of the hour I’d expected, but I was quite happy sitting in the traffic, listening to my music. It was quite an experience and very entertaining to watch people, some of whom had given up waiting in their cars and had started to walk to the concert – all in high spirits, some quite literally!
My vision went black even though my eyes were wide open. It only happened for a split second but I was very aware of it. I thought that I just needed to stand up. Eventually, I made it to my boyfriend’s house and got on with the evening.
In September 2007, I was at the office. We were going out for a special dinner with an awards ceremony. I told my supervisor that I wasn’t feeling too good and I had a strange tunnel vision. I thought it would better if I went home.
She replied that it was important that I’d be there and that I would be fine (I could have done with assertiveness lessons at this point), so I stayed. I couldn’t see properly. It was just like having tunnel vision, my head in a box. All I could see was what was in front of me through a small area with no peripheral vision. I was praying for some help to get me through the night. I found that if I sat still my vision would start to come back.
After a while my boss wanted to chat. She asked, was I happy at work? I said yes, because I was, but my headaches were getting worse, especially in the mornings. Like many of my work colleagues, I would need to wake up at 6am every day to get to work at 8am. I figured needed to find a job closer to home so that I would be able to sleep more as that seemed to give me more time for the headaches to pass by.
So, that’s what I did, I quit my job and looked for a new one.
My boyfriend and I booked a flight to Dubai. We were going to see his parents and at the same time it would give me a nice break before I started looking for a job.
In Dubai, I loved the sun. The late mornings helped as well, as my headaches seemed to happen mostly early in the morning. I found it hard to relax though and spent my time just lying in the sun continuously wondering what was going on in my head. I was unhappy with myself.
One day we woke up early to take a trip to visit the company of my boyfriend’s mother. She was the head of nursing department at the Canadian Hospital in Dubai. While we were waiting to meet her, we went outside for a bit, and I was not feeling right at all. As we were walking back into the hospital, I felt very sick and faint. I was trying so hard to relax but, I knew what was about to happen – again!
The next thing I knew, I was on the floor with my boyfriend trying to pick me up with one hand and holding our bags in the other.
I was so thankful I was at the hospital already and, with my boyfriend’s mother being the head of nursing, I was really well looked after. They took lots of blood tests. I truly think God was making sure I was in the right place, but unfortunately nobody thought to give me an MRI. I told them I had bad migraines. I was asked the usual, could I be pregnant or was I anaemic.
I was so miserable feeling like it was my fault, that is was all in my head or that I had been stupid enough to get pregnant and that I would not look after myself and allow myself to become anaemic. I knew I was very thin then but not from dieting. I was so not enjoying myself and was thoroughly fed up. I just wanted to crawl under a rock to hide and sleep. If only I could wake up after and be back in my own home.
As always, I still tried to live my life regardless of the strange symptoms I was having and I worked hard at getting a new job. I found the one I felt was a perfect fit and started my new job in the beginning of December 2007.
The job was going great, but in my personal life, I realised my memories and my recollections of everything were starting to disappear and I was feeling very helpless and depressed. I couldn’t separate my thoughts and was constantly angry inside. I was forgetting important things and that started to have an impact on my job. It was terrifying. I was scared.
The morning headaches were excruciating and were starting to get bad a night. 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 pain, I would be sick. Night and day, it was all just as bad. By now I would dread waking up. It was clear over Christmas that my boyfriend and I were not getting on anymore, I was not the person he met originally, and I knew that. We broke up.
All of my efforts were poured into my new job. I really liked the people I worked with, and I would always try to go for a quick drink after work, never staying too late as I knew it could easily lead to a headache, and I didn’t want anything to go wrong. I managed to handle all the strange things my body was doing and tried to adapt.
In March my hands were always shaking and my speech was jumbled up. I was having more episodes where my vision would go and come back. My doctors still couldn’t find anything wrong other than my migraines, they believed it to be stress related.
I just couldn’t explain what was happening. My memory was getting worse and I couldn’t even remember if I had eaten meals. I was finding it hard to hold a conversation because I would forget what we were talking about. It looked like I was just tired but I knew deep down it was something else.
In May 2008, I woke up at my normal hour and called into work to say I would be late. I drove down to my general practitioner without an appointment and told I needed help. I could feel that I was being rude and demanding, but I was not in the mood to be shrugged off like every other time before.
I made a list of symptoms that included migraines, memory loss, fainting, shaking hands, Trouble finding words, poor vision and a bad back.
The doctor looked at my list of symptoms and she said, “I don’t know what is wrong with your vision, but let’s see if it is related to your Ferretone levels again”.
I decided to take myself to the local Optician and asked could they check my eyes. The optician ran some tests and then consulted a colleague. Her concern was easy to pick up. She explained she thought that it might be cysts in both eyes as there was bleeding in the back of them. She asked me to go straight to St George’s Hospital and said that she was going to call them to expect me. After a number of tests and two days of going back and forth to the hospital I finally saw a doctor about my results.
I was relieved that they must have found something rather than sending me off with nothing. The doctor was making small talk about my job and my school history. I remember thinking, “Please get to the point.” I could see the scans, and it looked like a cauliflower. I had no idea what I was looking at or what it meant.
He smiled at me and said “I’m very, very sorry but we can’t help you, you have a very small percentage chance of recovery.” He kept saying “I’m so sorry” all the time. I was just thinking, “Yeah sure you are.”
He showed me the scan image. “This is the tumour,” he said.
“Tumour? Will I die?” I asked.
I could see what he was referring to, it was huge and all over the place. He said it was so big that it could kill me any day if it was not removed or treated.
I just sat there looking around the room trying to get my head around it.
“A tumour,” I repeated.
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. I felt sick. I just said “Wow, OK.”
What else can you say to that?
I was introduced to a neurosurgeon, Dr Minhas. He came to introduce himself to me and explained what was happening. He discussed potential risks, such as problems with balance, coordination, speech, vision, memory or muscle function, depending on which area of my brain was being operated upon. He said he would not know the extent until we were in surgery.
20 minutes before
Just before I was due to go down for the surgery, the door swung open and my parents came running into my room, shouting “We’re here!”
They had come straight from Heathrow Airport as they had to fly over from Sydney, Australia. It really looked like a scene from a movie going in slow-motion. I could see they were relieved they had made it and so was I.
10 hours after
Hours later the surgeons told my parents the operation was a success and felt that they had got the entire tumour out. Now they were sure it was a benign meningioma.
After the surgery I was fast asleep and having crazy dreams. When I finally woke up I was assessed to see the extend of damage the procedure may have caused.
Sadly, it was life changing.
I now had seizures, trouble finding words, quadrantanopia, fatigue, hyperacusis, tinnitus and weakness on one side.
To support me after surgery I received anti-seizure medication, speech therapy, occupational therapy, physiotherapy, relaxation therapy and counselling for CBT anxiety.
My speech did improve, but not completely. I still say the wrong word now and then, such as ‘Where are my feet’ instead of ‘Where are my shoes’. I can never remember names or most nouns. It takes me a few goes to get the correct word. I forget things all the time and I easily get extremely tired.
The New Me
After my own struggle I wanted to raise awareness about brain tumours and the impact it has post-surgery. Therefor I started a Facebook Group in 2011 giving other brain tumour survivors a place to talk. Social media was still new back then and it was almost impossible to find online help on brain tumour recovery. So I set up a group and a facebook page myself.
Over the last 8 years, I started using a number of other social media platforms to connect people. In 2013 I had a radio and podcast called Aunty M Brain Tumours Talk show. Allowing people from around the world to share their stories and promote their personal brain tumour charity work.
I have been featured in many publications and rallies to raise awareness and make sure people have a place to connect. Through personal meetings around the UK as well as worldwide through online means.
I currently have around 17,000 followers worldwide. I have written two books and two workbooks that help fellow brain tumour survivors or sufferers.
It has not been easy to get where I am. But it has been worth it.
I am so grateful for the opportunities I have been given that allow me to encourage others who heard the words ‘You Have A Brain Tumour’.
Claire's special note to doctors
I was diagnosed with an Intraventricular Meningioma in 2008 when I just 25 years old. In the build up to my actual diagnosis I had a number of symptoms that were brushed off by my general practitioner.
For at least 10 years prior to my brain tumour diagnosis I had been having headaches. They were all controlled with the usual aspirin you can buy over the counter.
In 2007 when I was 24, my headaches were getting worse and turned to migraines. I was struggling with bad morning headaches and always feeling very faint all the time.
I was working within an investment bank within their Recruitment team up in the city. I loved the London hustle and bustle that goes with a city job. But, one moment during my early morning commute to work I was strap-hanging with the best of them, and the next I had fainted. Two men helped me off the train and onto the platform.
One of the men said, “You may have an iron problem.” I thought “Yeah, that must be it.” The other man said, “You might be PREGNANT!!” I laughed and said “Not unless it was by immaculate conception.”
All of the passengers and the train driver were peering out the windows at me and wondering what was going on, impatient to get on with the day. I was wondering what was happening too. Embarrassed doesn’t even begin to cover it, mortified is how I felt. I remember willing the train and all those gawping faces to move off!
I went to my doctors for a blood test and it showed I had low Ferritin levels. They put me on some ferrous sulphate tablets. I said I was really struggling with my headaches at that it was causing me problems.
They seemed to just brushed off my concerns and sent me on my way.
I’m the founder of Aunty M Brain Tumours, it's my way of helping others around the world.
For more information
Claire’s books are available on Amazon