In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
“My life has changed completely. I can no longer work and am dependent on others as I can’t go out on my own. I am fortunate that my sister, mum Sharon, dad John, are all so supportive. I am trying to stay positive but it’s not easy. I have been told I am now on palliative care and I am doing my best to help myself with as healthy a diet and lifestyle as I can manage. I get very tired which is a symptom of my chemo but I do what I can and still enjoy going out for lunch with my mum and keeping busy where I can. I think about how my life might have been all the time; it is particularly hard when I see people doing things that I can no longer do.”
I was first diagnosed with what my doctors thought was meningioangiomatosis, a condition so rare that only around 50 people in the world have ever had it. The first I knew something was wrong was in July 2013. I was working as a self-employed joiner and I had a seizure at work.
I had a check-up and was released and then went back to hospital a couple of weeks later as the doctors wanted to do tests for photosensitivity and also check out my kidneys. I had an MRI scan in September 2013 and that was the first time I heard the words “brain tumour.” You hear those words and you think you are going to die. The tumour was on the right-hand side of my brain in the middle and within a couple of days I was having surgery at Queen’s Medical Centre, Nottingham.
Things seemed positive; the tumour was low grade, it was successfully removed and I went home three days later. After that it was a case of returning for regular MRI scans and waiting for the results to see what type of tumour it was. I hoped that was that and there would be no recurrence. I hadn’t been able to drive since my first seizure and in January 2014 I got my licence back. It was a big step and I felt my life was getting back to normal. But within weeks I had another seizure and started experiencing tingling down my right-hand side. I had to surrender my driving licence again and was back to relying on others, taking the bus and always being accompanied by my mum or friends whenever I went out. I was embarrassed about the thought of having a seizure when I was out on my own so there was a big impact on how I lived my life. I used to love going to the gym, skateboarding and BMXing but there was no more of any of that.
I take medication in order to control the seizures but as a result put on a lot of weight and am always tired. At the beginning of February that year I had another MRI and it was clear. My consultant explained that the symptoms I was experiencing were a result of the medication and I felt happy at the prospect that I would be able to get my life back. It was reassuring to think that my symptoms were a result of the drugs but I was still very scared that I might have a big seizure. Coming back on the bus from work one day in June 2014 I felt a seizure coming on and managed to phone my dad to ask him to come and collect me. The next thing I knew, I woke up in the back of an ambulance. This started alarm bells ringing with my doctors, I had another MRI in July and they found abnormalities in my brain. The tumour had grown back in the same place. My doctors had never seen anything like this before. This meant it was most likely not the meningioangiomatosis originally diagnosed but another type of tumour.
Lots of people have examined the tissue from my biopsy and I was eventually told I have leptomeningeal carcinomatosis which is growing on the lining of my brain. Much of the time since my diagnosis has been a waiting game as without knowing what type my tumour is has meant the doctors don’t know what, if any, treatment I can have. The worst thing is not knowing what the future will bring.
It is very hard to read that 16,000 people are diagnosed with a brain tumour each year. Brain tumours kill more children and adults under the age of 40 than any other cancer ... yet just 1% of the national spend on cancer research has been allocated to this devastating disease. This is unacceptable! It is why I am supporting the charity Brain Tumour Research and, once again, encouraging people to take part in Wear A Hat Day to help raise awareness and vital funds which will help people like me.
My sister Melanie, who lives in Dubai, has raised more than £9,000 for the charity by taking part in a number of marathons. I am very proud of her and her dedication to help us raise money and awareness. My life has changed completely. I can no longer work and am dependent on others as I can’t go out on my own. I am fortunate that my sister, mum Sharon, dad John, all so supportive. I am trying to stay positive but it’s not easy. I have been told I am now on palliative care and I am doing my best to help myself with as healthy a diet and lifestyle as I can manage.
I get very tired which is a symptom of my chemo but I do what I can and still enjoy going out for lunch with my mum and keeping busy where I can. I think about how my life might have been all the time; it is particularly hard when I see people doing things that I can no longer do.