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In Hope Stories

Just 1% of the national research spend has been allocated to this devastating disease

Gary Fordham

Single dad Gary Fordham, 43, was diagnosed with a golf ball-sized brain tumour after passing out at the wheel of his van on the M6 motorway. It happened on New Year’s Eve 2018, when he suffered a seizure on his way home to Bradford after visiting his parents in Swindon for Christmas. Gary was in the van with his dog, a ‘shug’ called Buster, and his 11-year-old son Hayden. All three miraculously survived. Since the near-fatal accident, Gary has gone on to have an awake craniotomy to remove the tumour. He is now waiting to have a titanium plate fitted to replace part of his skull, since he developed an infection following his brain surgery. 

Here is Gary’s story…

On New Year’s Eve 2018 I woke up at 9 pm in Royal Stoke University Hospital, with no idea where I was or what had happened to me. My ex-wife, Gemma, and my son Hayden were at my bedside and I was told my parents were on their way. Dazed and confused, the events of that afternoon slowly unravelled, as I learnt that I had suffered a seizure at the wheel of my work van, with Hayden and our dog Buster next to me in the passenger seats. Apparently, at around 2 pm that day, I had lost all control of the three-seater Mercedes van after blacking out at the wheel. The van veered off the road, onto the hard shoulder and up a grassy verge on the roadside. It then did a 180-degree turn and flipped on its side, ending up facing the oncoming traffic on the hard shoulder of the northbound carriageway on the M6. My amazing son Hayden, who was stuck underneath me, managed to find my mobile phone in the footwell and called 999. The call handler asked him whereabouts we were but of course he had no idea, being only 11 years old and having just woken up from a nap in the passenger seat.

Luckily, several motorists had stopped to help and managed to get Hayden and Buster out of the van and they let the emergency services know where we were. One of the passers-by opened the back of the vehicle and took out a saw, which he used to get the window open to get them out. I was taken out of the van by the fire crew, with the help of West Midlands Ambulance Service, when they arrived at the scene. I remember waking up for a few seconds at the roadside and then again in the ambulance but I wasn’t fully conscious and didn’t know what was going on. The next time I woke up for 10 seconds or so, I was in the CT scanner at the hospital, but again I lost consciousness after a short time. Remarkably, Hayden and I had escaped with only minor injuries. Hayden’s face was red from where the airbag deployed and I had a cut on my eyelid. The bigger story was that the medics has discovered a tumour in my brain.

“It was difficult to process this news, having just woken up in a hospital 80 miles or so from home with no real memory of how I had got there.” 

I remember my mum putting her hands over her mouth in shock. I was in complete disbelief and it took a few days for it to really sink in. My main concern, as a single parent, was that I didn’t want Hayden to lose his dad.

I’d been having headaches and migraines on-and-off for 15 years or so. I’d been to the doctors several times but was always told they were ‘just migraines’. I learnt to live with them but they impacted my life in a big way. I would avoid social situations, as drinking would bring on the headaches and make them worse. It affected everything, from my work life to my relationships. I think that it may have contributed to the breakdown of my marriage and job changes. My wife and I parted in 2015 and I became a single dad to our son.

In the six months or so leading up to my accident, as well as the headaches, I had begun suffering from visual absence seizures. I went to see my GP in June 2018 and explained to him that each time it happened, my vision would go for two to three seconds and then it would go back to normal. The doctor gave me some tablets to take and said that if they didn’t work, I would need to see a neurosurgeon. When things didn’t improve, I made another appointment but unfortunately my usual GP had gone away on sabbatical for three months and so I saw somebody else. The new doctor diagnosed me with labyrinthitis, an inner-ear disorder most commonly seen in older people. I kept going back saying I wasn’t getting any better but I felt as though I wasn’t being listened to. Eventually, I was sent to Calderdale Royal Hospital in Halifax for a hearing test. Those test results came back as perfect, so they ruled out any hearing problems. I’d also been back and forth to Specsavers several times, but each on visit I was told my eyes were fine and that I had 20/20 vision.

Things took a turn for the worse when, in October 2018, I suffered a two-minute seizure while I was having dinner at home with a friend. My vision went completely and so my friend called an ambulance, which came and took me to Bradford Hospital. They put me on a heart rate monitor, which gave good results, so I was sent home.

“All the while I knew something wasn’t right but because I seemed fine in between the seizures, it was as if people just didn’t believe me.”

After I finally got my brain tumour diagnosis in Royal Stoke Hospital on New Year’s Eve 2018, I was discharged with a prescription of the anti-seizure drug Keppra and told I’d need a more detailed MRI scan with contrast, to determine the tumour-type and subsequent treatment plan. For some reason, having returned home to Bradford after two nights in Stoke, my MRI appointment was three weeks later, back at Royal Stoke Hospital. So, on 21 January 2019, I travelled from Yorkshire to Staffordshire by train, as I had surrendered my driving licence following the accident. To my huge frustration, when I arrived in Stoke for my appointment and having already had the intravenous (IV) port fitted, I was told there had been a mistake and they couldn’t carry out the scan that day. I travelled back to Bradford and after my dad made a complaint on my behalf, my medical care was transferred to Leeds General Infirmary (LGI), much closer to home.

The team at LGI confirmed that I had a golf ball-sized tumour in the left side of my brain, which they would need to remove with surgery. My operation, an awake craniotomy, was on 23 April 2019. It was an amazing experience. I was in the operating theatre for 10 hours and was awake for six hours or so. I remember chatting to my wonderful surgeon Dr John Goodden about holidays and cruising. My speech therapist, a lovely lady called Suzanne, was on hand to talk to me and do word games. Any time my speech was affected, she would report back to Dr Goodden, as it meant that area of healthy tissue should be avoided, as they removed the mass.

 “I felt strange sensations, as if water was being sloshed around my brain like mouthwash at the dentist, but I felt no pain.”

I stayed in hospital for 72 hours after my operation and I began to recover well. My mum and dad came home with me to help me around the house. Dad left on 7 May, by which time I was strong enough to accompany him on the short walk from our house to the local train station in Low Moor. Two days later, however, my mum and I noticed that my head was getting increasingly swollen and red, so we rang the hospital for advice. They told me to go straight in and after being assessed, I was admitted and put on two drips. I was diagnosed with a bone flap infection; the part of my skull that had been cut during surgery had become infected and they would need to operate again. My second operation was on 9 May 2019. It was four hours long and involved removing the part of my skull that had become infected.

“The plan was to replace the missing bone flap with a titanium plate within three to four months post-surgery but a year-and-a-half on and I am still waiting.”

I became very self-conscience of my appearance following the operation, as it has left me with an unusually-shaped head.  I have worn a baseball cap ever since and don’t like to go out without it. The plate-fitting operation was finally scheduled for February this year but had to be cancelled at the last minute, when it emerged my bone flap was still in the lab at the hospital and not in Scotland, where it was supposed to be, in order for the plate to be made to the exact specification of my brain. My surgeon was really annoyed and hugely apologetic that there had been such a grave error. Meanwhile, I was having scans every three months to monitor my tumour. The scans remained stable but the one in January 2020 revealed that I had suffered a mini stroke. This meant I had to be sent for vascular, neck and heart scans, to investigate further, as well as having a heart-rate monitor to check my circulation. By the time these appointments came around, we were in the throes of the Covid-19 pandemic and three out of four of them were postponed, which led to further delays to my surgery. The surgeon didn’t want to operate until they’d investigated why I’d had a stroke. I am now hoping to have the plate fitted in December but as we enter another national lockdown, I am worried that there will be further delays. My latest scan in June also revealed some tumour growth, so the plan is to remove more tumour when the surgeon operates to fit the titanium plate. After waiting all of this time, I am just so desperate for it to happen now.  

One of the hardest things about my brain tumour diagnosis has been losing my job and a career that I loved. I was a chemical dosing engineer for Winterhalter UK, a company based in Milton Keynes. After my accident I was on full pay for a couple of months, then three months’ sick pay, then that was it. When Covid hit, the company shut the chemical part of the business and I was made redundant. I was expecting to be back in work within a few months. As I can no longer drive and have no idea when I will get my licence back, finding a similar role elsewhere is impossible. I’ve worked since I was 16 years old and really struggle with unemployment. Financially, it has been tough. Luckily, when I split up from my wife a few years ago and I took on 100% of the mortgage, I also took out critical illness cover, so I did get a lump sum payment from that. However, the money soon ran out and I now have to survive on Universal Credit. Getting a Personal Independence Payment (PIP) hasn’t been easy, as mine is an invisible illness. The job I had before my accident was brilliant; I travelled up and down the country, supplying hotels, restaurants and venues such as Wembley Stadium with chemical dosing services. It was well-paid and afforded me and Hayden a really comfortable lifestyle. We enjoyed lots of lovely holidays abroad, including a trip to Cuba and another to Mexico.

 “In spite of the challenges, I do my best to try to keep upbeat and positive, as I realise many other brain tumour patients have it worse.”

The strength and bravery Hayden has shown has helped me tremendously; he’s helped me at home, he calls my parents behind my back when he’s worried about me and he reminds me to drink plenty of water and to take my tablets on time. He has motivated me to stay strong and to recover. The things Hayden has dealt with make him an absolute hero and I couldn’t be a prouder dad. From contacting the emergency services when we were trapped in the van, to taking on board my brain tumour diagnosis, he has shown such strength in the face of adversity. Without Hayden, I would have struggled so much, especially being so far away from my family and close friends in Swindon. I'm so proud of what a team we've become.

One regret I have is that I never got to meet the wonderful people who stopped to help us on the M6 that New Year’s Eve. I owe so much both to the members of the public who rescued Hayden and Buster from the van and to the emergency services who came to our aid. One of the paramedics took Buster from the M6 and followed the ambulance in a response car. It would be lovely if Hayden and I could meet them one day to sincerely thank them for what they did.

 

Gary Fordham
November 2020

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 Gary’s story, you may like to make a donation via or leave a gift in your will via www.braintumourresearch.org/legacy

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