In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
IT manager Greg Dudley, from Runcorn in Cheshire, was diagnosed with a brain tumour in August 2019 after he was suddenly unable to write a coherent text message to his wife. His diagnosis came as a complete shock but it wasn’t the first time Greg’s family had been touched by the disease. His mum lived with a brain tumour for 20 years and after finally having surgery in 2009, she was left with life-altering effects and died from a stroke on Christmas Day 2013. Having been through gruelling treatment himself, Greg is beginning to feel better and is undertaking a physical challenge to raise money and awareness for Brain Tumour Research.
Greg tells his story…
The first indication I had that something wasn’t quite right was in July 2019. I was on holiday with my wife, Nicola and our son Noah, who was three at the time. We were on the transfer coach from our resort to the airport when I turned to Nicola to say something but the words didn’t come out of my mouth.
“My mind had gone blank and I couldn’t remember what I wanted to say. It was a strange feeling but I soon forgot about it and moved on.”
Shortly after we got home, I started a new job with a Manchester-based start-up digital business. Things were going well until four weeks into the job, when I was in the office on my lunchbreak one day and was trying to read a news article on my phone. I realised that I was struggling to read the words and make sense of the article and had to keep re-reading it. The feeling reminded me of what had happened on the coach on holiday, so I went to send a text to Nicola to tell her what was going on. When I opened the message app, however, I couldn’t find the letters to type what I wanted to say. I was panicking a little bit, as I knew something wasn’t right. When I started coming back to my senses, I looked at what I’d sent Nicola and it was complete gobbledegook.
“I screenshotted it and sent it to my sister. She urged me to call a doctor. I spoke to Nicola as well, and she also suggested I call the GP surgery.”
I took their advice and spoke to my GP, who asked me to come into the surgery straightaway. When I got there about an hour later, the doctor asked me a few questions about my general health and ran through some basic neurological tests. I told her I felt absolutely fine but exercising caution, she phoned the Countess of Chester Hospital for a second opinion. I couldn’t hear what was being said on the other end of the line but when she gave me the ‘thumbs up’, I assumed she’d say everything was fine and that I could go home. However, she put the phone down and asked me to go straight to the hospital. At that point, I was worried.
I phoned Nicola and she dropped Noah off at my sister’s and took me to the Countess of Chester. When we got to the hospital, they did some blood tests and more neurological assessments then sent me for a CT scan. We waited for a few hours before being moved onto a different ward, where at 11.55pm, a doctor appeared at the end of my bed and said the scan had picked ‘something’ up. I was booked in for an MRI scan the following day. Nicola went home and I stayed overnight then had my scan first thing the next morning. The timing couldn’t have been worse; it was Noah’s fourth birthday weekend and he was having a party later that day, which I really didn’t want to miss. While I was waiting for the MRI results, they allowed me to go to the party and I made it with 10 minutes to spare.
“Afterwards, I went back to the house still waiting for a phone call about my results. At about 7pm the phone rang and a doctor told me to come back to the hospital immediately.”
Nicola and I headed back to Chester. The doctor who was on shift wasn’t a consultant, so wasn’t able to tell me what exactly they’d found during the scan. He said there was some ‘swelling’, for which I was prescribed steroids and I was kept in overnight. The next morning, the consultant came to see me and said that there was definitely ‘something’ there. He explained that I was being referred to The Walton Centre for Neurology and Neurosurgery in Liverpool, where a multi-disciplinary team (MDT) would be discussing my case in four days’ time.
The doctor asked if I had any questions but for some reason, I didn’t. Maybe I was just trying to take it all in; I don’t know. Meanwhile, my sister and her husband arrived, and I updated them. They asked if I’d questioned the doctor about what the diagnosis actually was. When I told them I hadn’t, they were surprised, so I called the consultant back and my sister asked him what it was they were treating me for. He said it was a brain tumour.
Even though I knew deep down that I probably had a brain tumour, hearing the words was a real sucker punch. My mum died seven years ago on Christmas Day. She had been diagnosed with a brain tumour in 1993. For 20 years, they said it was inoperable but eventually, in 2009, they decided to go ahead with surgery to attempt to remove it. Unfortunately, she suffered a massive stroke afterwards and never fully recovered. Another stroke was the cause of her death but it was related to the treatment she’d had for her brain tumour. She had also been under the care of The Walton, so it was all painfully familiar to me.
“My sister was really upset and shocked by the news that I had a brain tumour. We joked though, because I was consoling her when really it should have been the other way around. It made me laugh.”
My next thought was that I had to phone my boss to tell her the bad news. She was amazing; even though I’d only been in the job a month or so, she told me not to worry about anything and that she and the company would support me in any way they could. I later discovered that her best friend’s husband has a brain tumour, so she had a good understanding of the impact of my diagnosis.
I was discharged from hospital and a few days later, I was invited to meet my surgeon at The Walton. Nicola and I went to the appointment together and upon meeting consultant neurosurgeon Mr Chavredakis, we were put at ease. He was a very suave man, dressed in a tailored blue suit, with a calm demeanour about him. As soon as he started talking, I breathed a sigh of relief, as he just exuded confidence, which is exactly what you want in a brain surgeon! He spun the screen round and showed us the MRI scan images, which showed the tumour was in the part of my brain controlling my speech and language. He talked through the options, which included an awake craniotomy, to debulk the tumour.
“The prospect of being woken up during brain surgery was terrifying but I said that I would do whatever he thought best.”
Having decided that an awake craniotomy was the best course of action, my surgery was scheduled for 6 September 2019. The experience of being woken up in the operating theatre was odd but it was fine. While I was awake, a speech and language therapist, who I’d been working with prior to the operation, put me through a series of word games, to check that my speech wasn’t being adversely affected as the surgeons carried out the painstaking work of removing as much of the tumour as possible. As far as I was concerned, I’d ‘passed with flying colours’ but it later transpired that I’d lost the ability to talk for around 45 minutes, so the surgical team was only able to remove around 50% of the tumour.
I woke up from surgery with a massive headache, which was probably to be expected. Once I was back on the ward, Nicola came to see me. I asked her to take a photo of my wound but she resisted, telling me it looked ‘fine’. Eventually, I persuaded her to photograph it and when she showed me the image, I was nearly sick. They’d shaved the area where they had to make the incision and the wound went from one side of my head to the other and must’ve been eight inches long. I was expecting it to be just one or two inches along my hairline, so it was a huge shock.
Recovery wasn’t straightforward. I had been home for three weeks or so, when I suffered a ‘blackout’, which could have been a seizure. It happened when Nicola had popped out to collect Noah from school. She’d made me promise to sit on the couch and rest while she was out but stupidly, I didn’t take her advice and instead, I got the vacuum cleaner out. I wanted to tidy up a bit, as my boss was coming to visit that afternoon. When I finished and sat down, I got the sensation of having goosebumps all over me. It almost felt like there was a ghost in the room. I got up and went into the kitchen and it happened again. I then opened the front door, to get some fresh air and to try and get rid of the weird feeling I was having. The next thing I remember is coming round, on my back outside, surrounded by paramedics. I had apparently fallen badly on the driveaway, fracturing my skull in the process. I was taken to Whiston Hospital in Merseyside, where I stayed for three nights to be monitored.
“Shortly after that, I received a letter in the post with the results from my biopsy. It said I had a grade 2 oligodendroglioma.”
I was pleased it wasn’t high-grade but when I turned to Google and discovered that the average life expectancy for this tumour-type is 12 to 15 years, I was gutted. My thoughts turned to Noah and Nicola and I got upset. But I quickly snapped out of it. I realised that there is no point in moping around being miserable. My mum never thanked us for feeling sorry for her about her illness. I got a lot of strength from her. I strongly believe that if you think yourself sick, you become sick. A positive mental attitude was going to be the best way forward.
I was referred to The Clatterbridge Cancer Centre on the Wirral for the next stage of my treatment, which would be six weeks of daily radiotherapy, followed by a course of chemotherapy. The radiotherapy was a grim experience. I played it down at the time, telling people it was like having a constant hangover but it was so much worse than that. I had a sore head and was shattered all the time and had to sleep a lot. I felt guilty that I couldn’t spend as much time with my family as I wanted to. Three weeks into the treatment, my hair began to fall out, just as I’d been warned it would. When I found clumps of it all over my pillow, it was the first time that I genuinely feared for the future. I got out of bed, went into the en-suite and cried. I looked like a cancer patient. I remember saying to Nicola: ‘I don’t want to die’. But we got through it by supporting one another and by investing in a lot of woolly hats.
I had a four-week break after radiotherapy before I started a high dose of the chemotherapy drug Temozolomide (TMZ), which is taken in tablet form. I was meant to be on it for 12 consecutive months but when the COVID-19 pandemic hit the UK in March 2020, my treatment was put on hold for three months. Doctors just didn’t know enough about the impact of the virus on patients like me, whose immune systems were weakened due to being on chemo.
“It was a scary time. I was worried about getting COVID, so we made the decision as a family to shield. We didn’t leave the house at all during that first wave of the pandemic.”
The chemotherapy made me very sick. I was fine for the first month or so but the second month was horrendous. I felt awful on it and knew it wouldn’t be sustainable for 12 months. My oncology team reviewed my treatment regime and they agreed to reduce the dosage. I felt a lot better straightaway. Then they increased it again, very slightly. It was about finding the right balance. However, the accumulative effect of the chemo meant that the final three cycles were the worst. I was relieved to finally finish the treatment in March 2021.
Since then, I’ve generally been feeling well. I have good days and bad days and still suffer with headaches but things could be a lot worse. I frequently get an itchy scalp, which is annoying but I can live with it. I’ve been able to return to work but I am predominantly home-based now. My balance isn’t as good as it used to be and sometimes, I’ll be talking then I forget what I’m saying.
I’m being monitored with scans every three months. The last one showed that things are stable; long may that continue! But I’m under no illusion that the status of my tumour is likely to change at some point.
“I’m realistic. I’ve accepted it will kill me eventually but in spite of that dark cloud hanging over me, I’m doing alright.”
The only social media platform I use is LinkedIn and it was while I was scrolling on there one day that I came across the Brain Tumour Research 20 for 20 challenge. It piqued my interest, as I realised it was something I could attempt to do to help me get a little bit fitter, all while raising money for a worthwhile cause, close to my heart. I bit the bullet and registered to do the fundraiser by committing to completing 20 minutes of exercise a day for 20 days. I’m coming towards the end of my 20-day challenge and it’s been a struggle but I’m thrilled to have raised nearly £1,200 for the charity. I have been running and walking 2.3 miles each day. Nicola knows the routes I take to keep it safe, as I am still at risk of having a seizure. I don’t think my fundraising will stop here. I’ve entered the ballot for next year’s London Marathon, something I may live to regret, but the thought of setting myself another physical challenge which I can combine with helping to find a cure for this terrible disease, is very appealing.
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.
If you have been inspired by Greg’s story, you may like to make a donation via http://www.braintumourresearch.org/donation or leave a gift in your will via www.braintumourresearch.org/legacy.
Together we will find a cure.