Death was off the table as a topic for West Lothian couple Hayley and Matthew Smith following a devastating diagnosis that gave Matthew just one year to live.
At just 28, and only 16 months after he married his love Hayley, Matthew was handed the heartbreaking news in July 2016 that he had stage four glioblastoma - a quick growing and aggressive brain tumour.
The couple met when 17-year-old Hayley was working as a coffee girl in a café that was run by Matthew's mum. She had dropped hints for him to ask her out by sprinkling little chocolate love hearts on the foam of his cappuccinos.
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“Matthew was just such a chilled, nice, lovely, friendly guy,” she said. “Everybody just called him a proper gentleman. He was really such a sweet, caring human being.”
The loved up pair were married in March 2015, with Matthew describing his new wife as “a clever cookie” - when she was appointed as a hedge funds reconciliation manager with J.P Morgan in Edinburgh, the Daily Record reports.
They settled down together in the West Lothian town of Fauldhouse - an escape from the city as farm boy Matthew loved woodland walks and open space. It was to be their forever home when they bought the four-bedroom villa.
But in 2016, Hayley had come back from a trip to Perth to find her hubby badly ill, a rash had broken out on his neck. At first they put the symptom down to the migraines that Matthew had been suffering for about six weeks and the fact that he had a stressful career.
However the sickness and the rash then led to him becoming dazed and confused which sparked a fear that he could be suffering from meningitis. “I went to work and just couldn’t stop thinking about it. Something’s not right. I’d never seen him like that before,” said Hayley, who called NHS 24.
The call handler had asked for Matthew to speak to them directly and it was after he had made contact with the NHS that he text his wife. He relayed that he was in an ambulance and Hayley later found him in A&E where a doctor broke the horrific news to the duo.
“I’ve never had to give anybody bad news before,” he told Hayley. “It’s not meningitis. It’s worse. Your life is never going to be the same again.”
The symptoms Matthew had been suffering were found to be a brain tumour. A CT scan revealed the terrifying diagnosis and he was rushed to Edinburgh for an MRI to determine its size.
“It was bonkers,” said Hayley. “Matt was only 28, and we’d only been married for just over a year. So, it was a huge shock.”
Driving behind the ambulance to the capital hospital, it was revealed that a tumour the size of an orange was located on Matthew’s front lobe.
“He had not had a single symptom until those headaches six weeks before,” said Hayley.
“I just went straight into problem-solving mode – like, this is going to be fine. We are quite positive people, so I don’t think I allowed myself to feel that horrible shock.”
Shell shocked by the news, Matthew was allowed to spend around a couple of days at home before he was to return to hospital to have an operation.
“They let me have him back home, and I was terrified,” said Hayley. “That was probably the worst night ever, going to bed. I just remember thinking: ‘What if tomorrow I am waking up and he’s not here?’”
Hayley only had a coffee to steady her nerves as Matthew went under the knife at the hospital theatre. She had to wait five hours before healthcare staff told her that her husband was sat up in bed and enjoying a cup of tea along with a pudding.
There were no doctors around to give a run down to his family, so a dazed Matthew told them all that the tumour had been completely removed. He was able to walk and talk - Hayley allowed herself to then think they were “totally all fine now.”
It was from here that the couple vowed to live life to its fullest. They enjoyed two European holidays together and marked Matthew’s 30th birthday in 2018 with a once in a lifetime trip to Hong Kong, Bali and Singapore.
“He booked business class flights, just went all out, stayed in really nice hotels,” said Hayley, whose husband’s scans were reduced to yearly. “He’s a proper water baby, so we spent a lot of time in the sea, and eating and drinking.
“For his birthday, I’d made him a video of messages from hundreds of his friends. He doesn’t usually cry that often, but he was a bit of an emotional wreck. Despite that, it was a really happy moment.
“For the last two nights in Bali, I’d upgraded our room to a private villa, and it was lovely. I feel glad and lucky we went on that trip – because that was before everything went downhill.”
Around a year later, during the depths of the Covid-19 pandemic, the married couple were asked to come back to the hospital for consultation following Matthew’s annual MRI scan - Hayley says she knew then that something was not right. Covid unfortunately had stopped any further investigations until July, when no further changes were noticed.
But in August, as the pair prepared to walk dog, Link, Matthew experienced a tonic clonic seizure. Matt was a different person after the seizure,” says his wife. “He was shouting at me, getting grumpy, being sarcastic. It was like something from that seizure had disconnected a part of his brain.”
His speech began to waiver, and a further MRI scan revealed growth on centre that required surgery. He elected to have it removed entirely, which would stop him from having the ability to speak, rather than partial removal – an option that would reduce the time he had to live.
Hayley, along with Matthew’s parents, made their return to the hospital for the results of the biopsy, which sadly came as “a huge bombshell.” It was then, in October 2020, that doctors delivered the prediction of the little time Matthew had left.
“I was so confused, because I had just assumed it had all been removed,” she explained. “I didn’t realise that some cells still get left behind, and there are sleeping cells. Essentially, they’ll waken up one day and re-form a new tumour.”
Hayley continued: “I don’t think we even spoke about his dying, but it was a mutual understanding that we were just going to do what made us happy, when it made us happy – and hang out with who made us happy..”
The procedure left Matthew with reduced, jumbled speech, and mobility issues. The seizures became more frequent and he became impulsive, angry and short tempered.
Physios and occupational therapists at the brain injury clinic encourage him to remain active and he took up golf.
“You kind of got glimpses of him. He was still in there. But every seizure that he had just took something else away from him,” said Hayley, who, during the pandemic, threw little parties to keep her husband’s spirits up – from donning sombreros and drinking margaritas, to staging a Hawaiian New Year luau.
“He was clearly frustrated and a bit more sad than before, but he still had that lovely ‘I’ve just got to get on with it’ attitude, which was incredible,” she said.
A breakthrough came when their oncology nurse put Hayley in touch with Marie Curie in July 2021 – a year after she’d been her husband’s full-time carer.
With the arrival of Marie Curie community nurse Susan came a fall detector, a careline to provide support in the event of escalating seizures, and OTs and physios in the couple’s home.
“I’d been struggling with everything. I was falling apart every day. I was just terrified that he was going to get hurt,” said Hayley. “I was physically and mentally exhausted. Just instantly having these things in place gave me that tiny peace of mind that I’m not on my own. And Susan was just wonderful.”
The nurses during home visits bathed Matthew, and got him into a chair by the TV – all while helping him keep his dignity.
Susan also arranged respite care, which allowed Hayley to take a precious few hours out for a coffee, knowing her husband was being looked after.
It was with Susan that she had the conversation about where Matthew would die. Knowing that his safety would be compromised if he remained home, the nurse arranged for the seven-day Marie Curie emergency service to be implemented, before a bed became available at the Marie Curie Hospice in Edinburgh.
There, the couple were introduced to healthcare assistants Lewis and Richard, whose kindness and good humour promoted a thumbs-up and a nod from the now non-verbal Matthew.
“Everyone from receptionists to cleaners, healthcare staff, nurses, doctors, all had this magical way of making you feel really at ease,” explained Hayley, who knew that finally her husband would receive the emergency meds that would relax his muscles and end his seizures.
“To be able to actually chat things through is so helpful because you feel like you’re part of the decision-making.”
She was allowed to bring Link, their little sausage dog, in to snuggle next to his master in his large room with a balcony, overlooking the gardens.
Matt had, by then, stopped nodding – communicating only by blinking. But he found the ability to stroke his dog’s paws – a source of comfort to both Matthew and Hayley during those silences that made him upset.
“The night before Matthew passed away, I think I just knew it was going to happen,” said Hayley, now aged 31.
“He’d been asleep the whole day and then I said ‘bye to him and squeezed his hand and told him I loved him. Then, he opened his eyes and looked at me and nodded, then went back to sleep. It was like he knew.”
Matthew lost his life to brain tumours on October 7, 2021, with his parents holding his hands, and kindness and warmth greeted Hayley when she arrived at the hospice to sit with her husband.
“They’re just so supportive, and they let you lean on them, but also they know to give you space if you need it,” said Hayley, who now lives in Stepps, North Lanarkshire.
“They are really wonderful human beings. They made the whole process weirdly manageable. A hospice is like a good death, and I definitely think that’s what Matt got.”
Marie Curie’s The Great Daffodil Appeal, encourages supporters to donate and wear a daffodil this March to support the charity’s nurses, doctors, and hospice staff as well as its information and support line. See www.mariecurie.org.uk/daffodil/donate
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