Choosing not to discuss death and dying was an unspoken decision for Hayley and Matthew Smith after he was given just one year to live.
At the age of just 28, only 16 months after he married Hayley, Matthew, in July 2016, had received the devastating diagnosis of a stage 4 glioblastoma – a fast-growing and aggressive brain tumour.
Hayley had been a 17-year-old weekend coffee girl in the café managed by Matthew’s mum when she met him – and sprinkled chocolate love hearts on the foam of his cappuccinos in the hope that he’d take the hint and ask her out.
“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.”
Soon after the couple tied the knot in March 2015, Matthew – who is described by his wife as “a clever cookie” – was appointed hedge funds reconciliation manager with J.P Morgan in Edinburgh.
The pair chose to settle in Fauldhouse, West Lothian – a retreat from the city for Matthew, whose upbringing on a farm instilled in him a love of woodland walks and open space. They believed the beautiful four-bedroom villa they bought there to be their forever home.
When, in July 2016, she returned from a trip to Perth to find her husband terribly sick, with a rash on his neck, they both put it down to the migraines he’d had for six weeks – and his stressful job.
When the sickness and rash continued and Matthew seemed dazed and confused, his wife feared 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.
When the call handler insisted on speaking directly to Matthew, she asked him to call. Then came a text from her husband. He was in an ambulance. She found him in A&E, where a straight-talking doctor cut to the chase.
“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.”
A CT scan had revealed a brain tumour, and Matthew was going to have to be transferred immediately to hospital in 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.”
She drove behind the ambulance to hospital, where an MRI scan revealed a tumour the size of an orange on Matthew’s front left 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.”
With Matthew’s brain surgery scheduled for a week after he was admitted to hospital, he was allowed to spend a couple of days at home before going under the knife.
“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?’”
Having nursed a coffee in a nearby cafe while her husband was in theatre, Hayley received a call five hours later. Matthew was sitting up in bed with a cup of tea and a pudding.
With no doctors around to brief his family, a groggy Matthew told them the tumour had been removed completely. He was talking and walking – and Hayley told herself they were “totally all fine now.”
That’s when Matthew and his bride vowed to live life to the full. Following a couple of European holidays, they marked Matthew’s 30th birthday in 2018 with the trip of a lifetime 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.”
Twelve months later, at the height of the pandemic, they were asked to attend hospital for a consultation following Matthew’s annual MRI scan – and Hayley knew instinctively something was wrong. But Covid put paid to further investigations until July, when no further changes were detected.
Then in August, as the couple prepared to walk dog Link, he 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.”
With his speech deteriorating, a further MRI scan revealed growth on Matthew’s speech centre that required surgery. He elected to have it removed entirely, which would rob him of his speech, rather than partial removal – an option that would reduce the time he had to live.
Hayley and her in-laws returned to hospital for the results of the biopsy, which 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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