In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Carly Beasley had landed her dream job and had recently married her childhood sweetheart, Kris, when she had her first seizure. Following a series of tests and scans, she was diagnosed with a low-grade brain tumour in October 2017 and had surgery to remove the tumour three months later. Having made a remarkably quick recovery from the operation, Carly is now back at work and determined to use her experience to help others.
“With anything that people go through, not just brain tumours, you go through a mix of emotions. I have had anxiety about my illness and have gone through the inevitable ups-and-downs, but there are many positives I can take from my situation. At least my tumour is low-grade. At least I made a full recovery.”
Here is Carly’s story…
In May 2017, I had just celebrated my 30th birthday and had recently married my childhood sweetheart, Kris Beasley, who I had met at school. Living in Chippenham, where I was born and raised, I was working for a great company, as a national account manager, and I loved my job. Things were going well and I certainly had no symptoms or indication that I was living with a large brain tumour.
I have always been a social person and enjoyed going out with friends, meeting new people, shopping and generally being out and about. Traveling is another interest of mine and our honeymoon in Mauritius was just perfect.
Suddenly, in September 2017, I had a seizure. I don’t remember anything of the episode itself, just waking up. It felt like a bad dream. I had been staying over in London quite a lot for work, but fortunately I was at home at the time.
My husband said it looked like I was sleepwalking and that I fell to the ground before the seizure began. Next thing, an ambulance was called and I was taken to the A&E department at the Royal United Hospital in Bath. When I came round I had no idea what had happened. The medical staff ran some initial tests – which all came back fine – so I was allowed back home after a few hours. I was told I couldn’t drive for the foreseeable future but, to be honest, this was the least of my worries. The next step was an MRI scan. Fortunately, private health care through work meant I had to wait just a few days rather than the four weeks it would have been on the NHS.
As I had previously had no other symptoms, the consultant was quite confident that there was nothing to worry about. He said that one-off seizures could be caused by stress and fatigue and he thought perhaps I had been working too hard. Despite his words, I knew that I didn’t feel abnormally stressed or tired and, deep down, I felt something was wrong.
When the MRI scan results came through, I knew it was bad news. I received a text asking me to see my doctor immediately. I didn’t feel confident going into that appointment and, as he delivered the news, that the scan had shown a large tumour on the left-hand side of my brain, I got very upset.
In October 2017, I was referred to Southmead Hospital, where I saw the clinical lead of Neurosurgery, Mr Iyer, who thought my tumour was a glioma but couldn’t confirm exactly what type it was. He also thought it was low-grade. He told me not to google it. He said that he would not push me to have surgery but as the tumour was on the left-hand side of my brain – which affects speech and movement – he would recommend it in one to two years’ time. I was put on medication to reduce the risk of another seizure and I tried to regain a bit of normality in my life. Although I had listened to my doctor’s advice, I was adamant I wanted surgery immediately. I was given time to think about it, but my decision was already made.
In January 2018, I had an awake craniotomy to remove my tumour. I had to be awake during the surgery so the parts of my brain that controlled speech and movement could be tested throughout. I was shown simple pictures and had to identify what the picture was showing and how two images were related – which was testing different areas of my brain. Though I had a number of pre-ops beforehand, the whole thing was pretty daunting. I was grateful to have been put in touch with a man who had already had the surgery, and he gave me a good idea of what to expect during the operation.
The surgery itself lasted 13 hours – one of the longest operations of its type the surgeons had performed. I can’t remember much of it, but fortunately most of the tumour was removed. Although my speech was badly affected afterwards, it only took about two weeks to come back. The doctors were surprised at how quickly I recovered; they expected me to make a full recovery but thought that it could possibly take about a year to get back to good health.
During this time, my family were so supportive. My sister, Lindsay Monnery, my parents, Sue and Ian, and my husband Kris refused to leave my side. It was nice having my parents and Kris drive me to the hospital – the chats we had in the car were a good emotional release. Six weeks after surgery, I was finally diagnosed with a subtype of glioma referred to as an oligodendroglioma. Though this is less common than other tumour types, it is more predictable in its behaviour.
After fully recovering from my surgery, I was able to return to my job and now I am slowly getting back into the day-to-day routine. I had my first follow-up MRI scan on 2nd August 2018 and felt apprehensive about getting the results. My tumour is very worrying if I think about the possibility of it returning and Kris says that he can tell when I am anxious, even when I am not overtly showing it. Now I’ve recovered from the surgery, I think I am dealing with the emotional effects of my diagnosis.
I recently received the results from this first follow-up scan, which were really positive. There has been no regrowth since my surgery and instead of going back every six months for my scans, as initially discussed, I’ve now been informed that I don’t need to go back for another year!
I’m feeling optimistic about my future with Kris and spending the rest of our lives together, something, which we talk about a lot. He is always there for a chat if I need it. With anything that people go through, not just brain tumours, you experience a mix of emotions. I’ve had anxiety about my illness and have gone through the inevitable ups-and-downs, but there are many positives I can take from my situation. At least the doctors know what type of tumour I have and that it is low-grade. At least I made a full recovery. As there’s a full year until my next scan I’ve decided to love life and live every day to the full.
I first heard about the Brain Tumour Research charity while I was recovering in hospital after my surgery. After being handed a leaflet, I read more about the charity and became increasingly aware of the lack of funding there is for research into the disease. I also wanted to share my story as I think it will inspire others who are living with a brain tumour.
The nurses at Southmead Hospital have asked me if I would like to be part of a support group for young people with low-grade brain tumours. This is something I am really looking forward to doing and I think it will be a fantastic way to use my experience to help others going through a similar situation. I am also planning to participate in fundraising events with my friends to raise money for research into brain tumours.
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 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.
The views or opinions expressed within are not necessarily those of Brain Tumour Research. This content has been shared for information purposes only. Brain Tumour Research does not recommend or endorse any particular treatment. If you have or suspect you may have a health problem, you should consult your doctor or other suitably qualified medical professional. Our member charity brainstrust can provide additional information on treatment options.