“Living with a brain tumour has made Dom more in touch with his emotions and his diagnosis has made our marriage even stronger”
Written by Carol Dyce.
Two-and-half years after the fateful day former Liverpool and Leeds footballer Dom Matteo had 10 hours of life-saving brain surgery, his wife Jessica “counts our blessings every day” and considers the devoted couple as among “the lucky ones and closer than ever.”
Now Jessica and Dom, 47, who became an ambassador for The Brain Tumour Charity after his diagnosis in November 2019, are sharing their story in Brain Tumour Awareness Month. They want to raise awareness about the disease – the biggest cancer killer of children and young adults in the UK – and to highlight the charity’s free relationship counselling service in partnership with Relate for couples and individuals living with the devastating impact of a brain tumour diagnosis.
“I feel blessed that we still have Dom with us and that he’s still the person I fell in love with,” said Jessica.
“Others aren’t so fortunate as people can have a personality change after diagnosis and The Brain Tumour Charity’s relationship counselling service is an absolutely vital and wonderful resource.
“When your partner has a brain tumour, no one gives you a handbook about how to deal with it and the possible impact on your relationship. We count ourselves among the lucky ones and we’re sharing our story as we want to help others who haven’t been so lucky.”
The date Monday, November 11, 2019, will be seared in Jessica’s heart forever.
“Dom had gone into hospital for a CT scan as he’d been suffering headaches and our GP had referred him, saying: ‘You’ve never come to me for anything in seven years, let’s get them checked out,’” said Jessica, 40.
“At the time, our son, Luca, had a virus so we put Dom’s headaches down to having it, too, but thought it was best to be on the safe side. The day before he’d worked for LFC TV and came off air saying his head was ‘throbbing’ and he never complains about anything.”
Jessica was teaching a ballet class when Dom rang her after his scan at Calderdale Hospital, near Huddersfield,
“He told me, ‘They’re going to keep me in, they’ve found something in my brain, they think it’s a tumour,’ said Jessica.
Dom was bluelighted to Leeds General Infirmary and Jessica drove to meet him there.
“I just couldn’t take it in and went on automatic pilot to get to the hospital and took Dom’s elderly parents with me,” said Jessica.
“When we got to the hospital Dom was in a wheelchair and couldn’t see. He was pumped full of steroids to reduce the swelling on his brain. All that had happened within 48 hours. It was agreed he’d have an operation in two days. We said goodbye to Dom in his room and I drove his mum and dad home.”
As Jessica pulled up on her driveway, the hospital rang to say Dom had had a massive seizure.
“They said they were doing everything they could and that I needed to be there,” she said.
“I turned straight back round and drove the half-hour back to Leeds, sick with fear as I had no idea what was waiting for me. I didn’t know if Dom would still be alive or, if he was, what state he’d be in. It still makes me cry when I think about it now.”
At the hospital, Jessica ran inside to find that Dom was still unconscious, and doctors were battling to bring him round. They said Dom would die unless they operated immediately due to immense pressure on his brain.
“Dom’s surgeon, Ryan Mathew, took him down to theatre at 5.15pm and told me to go home to try to get some sleep,” she said,
“I went home and my sister came round. But I didn’t sleep a wink. I perched on the edge of my bed waiting for the phone call, which finally came at 3am, after Dom had been in theatre for almost 10 hours. It seemed like an eternity. But it was the best phone call of my life. Ryan said he’d removed 90-95 % of Dom’s tumour and that he was doing really well. He said he was sorry that he may have lost the sight in Dom’s right eye. But I was overwhelmed with relief and gratitude that he was OK.”
Dom had been due to fly to Singapore for work a few days later and, after his GP referral, his scan had been booked for three weeks after he got back.
“But he was offered an earlier appointment when there was a cancellation, which saved his life,” said Jessica. “Dom could have had a seizure while he was on the flight and we would have lost him.”
Dr Mathew told Jessica to come in the next day as Dom was sleeping.
“I was expecting him to still be out of it covered in tubes and on a ventilator, but he was sitting up in bed with no tubes, just a drain from his skull,” said Jessica.
“As I walked through the door, he said “Hello kidda!” I just couldn’t believe it. I was so grateful that he knew who I was and he was still my Dom.”
Dom was in hospital for three weeks and biopsy and test results revealed he had a large, very rare grade 3 (cancerous) brain tumour, a RELA fusion ependymoma, which is usually diagnosed in children.
“Doctors said part of the tumour was calcified and that it had probably been growing for decades since Dom was a child,” said Jessica.
“He didn’t lose sight in his right eye as first feared, although he has lost some peripheral vision, a small price to pay for saving his life.”
Dom had six weeks of radiotherapy at St James’ University Hospital in Leeds, known as Jimmy’s. He rang the bell to mark the end of treatment in February 2020 and then faced an agonising 11-week wait for a scan to show his tumour was stable as appointments were cancelled due to Covid.
Jessica explained: “Immediately after Dom’s diagnosis and during treatment, I went on automatic pilot to get through what we had to do. As I didn’t feel in control, I controlled the things I could like our diet – cutting out red meat and drinking green juices. And during the pandemic when we couldn’t get to hospital and Zoom was too tiring for Dom, I worked with him at home on his speech and language.”
Dom underwent months of tough rehabilitation with “brilliant support” from their occupational and speech and language therapists.
“People don’t realise what a long haul recovery is after a brain tumour diagnosis and treatment and how many long-term effects you have,” Jessica added. “At first, Dom was frustrated and impatient that he couldn’t just jump on the treadmill and get back to normal. But he couldn’t even squeeze toothpaste onto a toothbrush and he’s still relearning how to read and write – Luca’s homework spellings are too difficult for him. His writing is better but he can’t read it back – it’s fascinating how the brain works.
I’m not a very patient teacher at times and when my old headmaster got in touch after Dom’s diagnosis asking what he could do, I asked him to help Dom with his reading. He’s an avid Leeds United fan so his payment is hearing Dom’s tales of his playing days!”
Dom also has short-term memory problems, but he has regained some now they’ve moved house near Halifax. However, it was a huge loss of independence for him not being able to drive
“Our old place was in a very rural area but now we’ve moved to another village where Dom can walk Luca to school every day and go to the shops – he’s a familiar sight in the village tea-rooms!,” said Jessica.
Dom has also been fundraising for The Brain Tumour Charity and had an emotional reunion with former Leeds United team mate Mark Viduka for a Q & A session at the club’s Elland Road pavilion on March 11.
After being together for 20 years and married since 2018, the couple’s ordeal has taught them valuable life lessons which have brought them even closer.
Five life lessons that have made our marriage stronger
Lesson one: Embrace closeness
“We’ve always been close and a good team, but Dom’s diagnosis has brought us even closer together.
“Since his diagnosis, Dom has become much calmer and is more in touch with his emotions and is more open with me about his feelings. He worked with a life coach for a year, which really helped him.
“Post-diagnosis life is so different to our life before. We were always rushing about juggling everything. Now we make more time for each other as a couple – although we love our family time – we took Luca, eight, on honeymoon with us!“
Lesson two: Don’t sweat the small stuff
“When someone nearly dies, you do a life audit. Now our priorities are more crystal clear than ever – our family and being healthy and happy.
“Twice a week – every Thursday and Sunday – we have a family meal at our favourite restaurant. On Thursdays, it’s us with Luca and on Sundays, Dom’s daughters from his first marriage, Luisa, 16, and Elin, 12, join us.
“Things I used to worry about before like what people think about me just doesn’t matter anymore – we don’t sweat the small stuff as we realise what’s really important in life.“
Lesson three: Take turns to be the strong one
“Dom calls me his ‘rock’ but he’s there for me. He now has scans every four months and we suffer terrible scanxiety as the waiting is so stressful.
“You feel OK for a month, then you have the build-up to the scan and waiting for the results. One of will feel off-kilter and be lifted by the other, taking it in turns to be strong for each other.“
Lesson four: Don’t take each other for granted
“I’ll never forget my dread and fear I was going to lose Dom during that drive to hospital after he had his seizure. We all take each other for granted until you go through a trauma and know how easily someone can be snatched away from you.
“I feel blessed that I’ve still got Dom with me as it so easily could have been a different ending, and we don’t take each other for granted anymore.“
Lesson five: Use your experience to help others
“We are both passionate about wanting to help raise awareness. Before Dom was diagnosed with a brain tumour, I knew absolutely nothing about them and I was shocked when I found out they were the biggest cancer killer of children and young adults in the UK.
“I’m blessed Dom’s personality didn’t change and he’s still the man I knew. The Brain Tumour Charity is doing such an important job offering people counselling to adapt to such a painful time in their life.
“We count ourselves among the lucky ones and we want to help other people who aren’t so lucky.“
Dom said:
“Since my diagnosis, I have had amazing support from family and friends, especially Jess. She is my rock and has been at my side since day one.
“Our lives were turned upside down overnight. One day, I was on TV, the next I was fighting for my life. I feel blessed to still be here.
“The hardest time for me and Jessica is around scan time. I think sometimes she needs to take herself off from me and vice versa, but we always support each other.
“I think I have more routine and focus in my life now and it means everything to me to use my position to help The Brain Tumour Charity raise awareness, and I’ve also set up the Ahead Of The Game Foundation with former world light weight kickboxing champion, Dave Bolton, who is also living with a brain tumour.
“Not a day goes by that someone doesn’t ask me for help when they’ve been affected by a brain tumour or message me through social media and I think helping others if you can is what it’s all about.
“Now I don’t take anything for granted and I’m so grateful for my family. A close brush with death makes you realise how precious life is.”
Eve Kelleher, Head of Services at The Brain Tumour Charity, said:
“Our warmest wishes go to Jessica and Dom as they continue to navigate the emotional impacts a brain tumour diagnosis and long-term side effects can have on a partner and their loved ones, as well as the person living with a brain tumour.
“We are incredibly grateful they are sharing their story in Brain Tumour Awareness Month to help us raise awareness of the disease – the biggest cancer killer of children and adults under 40 in the UK – and to highlight our free relationship counselling service.
“While Jessica and Dom have found his diagnosis has brought them even closer together, we know that a brain tumour diagnosis can put a huge emotional strain on relationships.
“Our Losing Myself report revealed that two in three people felt their diagnosis had a negative impact on their relationship with their partner, and 72% said it had affected their physical intimacy.
‘That’s why we run a free counselling service in partnership with Relate for couples and individuals, whose relationship may have been put under pressure by a brain tumour diagnosis.
“Since March 2020, we have seen an overall 30% increase in people seeking our support and we are continuing to see growth in our support enquiries each month.
“Anyone affected by a brain tumour can call our free Support and Information Line on 0808 800 0004 or email support@thebraintumourcharity.org.
“We are here to listen, support and help with the latest information.”
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