Woman determined to make lockdown memories with her husband who has an incurable brain tumour reveals they’ve ‘gone around the world’ with a shisha lounge, Oktoberfest and wine tasting at home
- Hayley Smith, 30, creates ‘pockets of joy’ during lockdown for her husband Matt
- Matt was diagnosed with brain cancer nearly five years ago in July 2016
- The couple’s love of travelling and socialising has been curtailed by Covid-19
- Hayley hasn’t let it stop them making memories with an international flavour
- She has staged a Mexican night and a mini Oktoberfest in a tent in their garden
Devoted wife Hayley Smith, whose husband Matt was diagnosed with brain cancer in July 2016, reveals how creating ‘pockets of joy’ at home during lockdown helps them focus on the positive.
The couple’s love of travelling and socialising has been curtailed by Covid but Hayley, 30, from West Lothian, Scotland, hasn’t let lockdown stop them making precious memories with an international flavour.
Since April 2020, a month into the first lockdown, creative Hayley has staged a Mexican night, held a mini Oktoberfest in a tent in their garden, hired a restaurant-style igloo to dine in for Valentine’s Day and made a shisha lounge to feast on their favourite Arabic food to celebrate their sixth wedding anniversary in March.
Hayley Smith (left), 30, from West Lothian, Scotland, whose husband Matt (right) was diagnosed with brain cancer in July 2016, creates fun events with an international spin at home during lockdown, including a Mexican night
The couple love traveling and socialising, but this has been curtailed by Covid-19 so the pair have been bringing the international home since April 2020
She’s also held a wine-tasting evening sampling wines from all over the world and transformed their front room into a home spa complete with cream tea to treat Matt.
Hayley said: ‘I have always had a positive attitude and I’ve always loved arranging surprises for Matt.
‘Usually we love travelling and socialising but lockdown stopped us getting out to make memories, so I’m making them for us at home instead.
‘I enjoy coming up with the ideas, researching and sourcing things to give Matt and me those little pockets of joy, despite it being lockdown.
In July 2016, Matt was diagnosed after six weeks of headaches and vision problems and underwent a three-hour operation five days later to remove the orange-sized tumour which sat between two cysts
The couple met when Hayley was turning 18 and Matt was 20 when they had summer jobs at The Scottish Liqueur Centre in Bankfoot, Perthshire
‘It gives us something positive to focus on and we treasure each moment and memory.’
Hayley and Matt’s international lockdown calendar
April 2020: Wine tasting, afternoon tea and home spa, Mexican night
May 2020: Tropical brunch for Matt’s birthday
July 2020: Tiki garden party for Hayley’s 30th
September 2020: Oktober fest with tent in garden
October 2020: Hallowe’en Day of the Dead theme after Matt got home from his second brain surgery
New Year’s Eve 2020: Hogmanay luau
January 2021: Apres-ski hot chocolate in the snow, sporting retro ’80s ski suits
February 14 2021: Valentine’s Day igloo in garden for romantic meal
March 14 2021: Shisha lounge with a delivery of their favourite Arabic food, washed down by Moroccan mint tea to celebrate their sixth wedding anniversary
Hayley started creating their homespun lockdown memories in April 2020 after a scan revealed Matt’s tumour was growing back, a month into the first lockdown.
‘We were devastated and due to Covid, Matt’s treatment had to be put on hold, which was so frightening,’ said Hayley.
But the couple – who have set up the Matthew Smith Fund with The Brain Tumour Charity to raise awareness vital funds for research – were touched by people’s reaction to their news.
‘Lots of people were asking how Matt’s scan results went, so we posted a quick update on Facebook,’ said Hayley, who is also a community ambassador for the charity.
‘We asked if they could donate just £1 to the fund that would be brilliant.
‘Within 48 hours we had over £3,000 of donations and we were absolutely blown away.’
Hayley had set herself a target of raising £30,000 by her 30th birthday in July 2020 and people’s generosity helped her top that earlier. The fund now stands at nearly £37,000
Now Hayley is sharing their story through The Brain Tumour Charity in Brain Tumour Awareness Month (BTAM) to support its Voices For Change call to raise awareness about brain tumours – the biggest cancer killer of under-40s in the UK.
‘As soon as Matt was diagnosed, I wanted to do everything in my power to help The Brain Tumour Charity’s amazing work and raise money for research to help save other people what we’re going through,’ said Hayley.
The couple met when Hayley was turning 18 and Matt was 20 when they had summer jobs at The Scottish Liqueur Centre in Bankfoot, Perthshire.
They travelled for three years to see each other when Hayley started Queen Margaret University in Musselburgh, and Matt was in his third year at Northumbria University in Newcastle
The pair also hosted an Oktoberfest-style event in their garden, with a large tent and bunting in their garden and big glasses for pints of beer
For Hayley’s 30th birthday in 2020, the couple held a Tiki garden party, complete with a hut, gold paper straws and metallics disposable cups
‘Matt’s mum was my boss,’ said Hayley. ‘I worked in the coffee shop and Matt was in the bottling plant.
‘I loved how he ordered exactly the same lunch every day – two filled rolls, soup, a bit of Tiffin and a cappuccino.
‘We hit it off although we’re polar opposites. Matt’s quite serious and shy while I’m an extrovert who never stops talking.
‘He was in his third year at Northumbria University in Newcastle and I was about to start at Queen Margaret University in Musselburgh, near Edinburgh.
‘For three years we travelled to see each other – a big commitment at that age but it felt right.’
Hayley said that she and Matt hit it off despite how they’re ‘polar opposites’ when she worked in the coffee shop Matt got his lunch at every day
The couple celebrated Halloween in 2020 with a Day of the Dead theme, a traditional festival in Mexico, a couple of days after Matt got out of hospital following a second operation, which took 10 hours, to remove a tumour which grew back
In May 2020, the couple celebrated Matt’s birthday with a tropical brunch, with gold balloon bouquets and leaf shaped balloons
The couple moved in together in 2013 and Matt proposed on Christmas Day 2014.
‘I was in my Cookie Monster onesie and, although we’d talked about marriage, I wasn’t expecting a proposal because he’d already bought me loads of Christmas presents,’ said Hayley.
‘But he put an engagement ring at the bottom of my stocking.
‘We were going to my parents for lunch and have a tradition of dressing up, so Matt said he wanted to propose beforehand so I didn’t cry my false eyelashes off.’
The couple’s wedding in March 2015 was ‘a giant party’ and they settled down to married life in their dream ‘forever home’ in West Lothian.
For their Valentine’s Day celebrations this year, Hayley hired a restaurant-style igloo to have a romantic meal in the garden
Hayley started creating their homespun lockdown memories in April 2020 after a scan revealed Matt’s tumour was growing back, a month into the first lockdown
But their newlywed bliss was interrupted in July 2016 when Matt was diagnosed after six weeks of headaches and vision problems.
‘At first, we just put it down to being stressed at work,’ said Hayley.
‘Matt went to the GP who thought it was migraines and gave Matt medication.’
One weekend, Hayley went to visit friends and Matt rang to say he’d been violently sick, which they thought was food poisoning.
‘When I got back, he kept falling asleep and I noticed a rash on his neck and shoulders,’ said Hayley.
‘I thought of meningitis and did the glass test and the rash went away.’
The couple – who have set up the Matthew Smith Fund with The Brain Tumour Charity to raise awareness vital funds for research – were touched by people’s reaction to their news (pictured fundraising for The Brain Tumour Charity)
New Year’s Eve saw the couple celebrating Hogmanay Luau, which combines the Scottish celebration on December 31 with a traditional Hawaiian party
Hayley also put on a shisha evening on March 14 this year, where they feasted on Arabic food and celebrated their sixth wedding anniversary
Next day, Matt stayed off work and called NHS 24 when he felt worse.
‘He was talking nonsense so they sent round an ambulance and he was taken to our local hospital, and I rushed there from work,’ said Hayley.
A CT scan revealed a mass on Matt’s brain and he was transferred to Western General Hospital, Edinburgh, where a more detailed MRI scan confirmed an orange-sized tumour. It was pressing on his optic nerves which explained the headaches and sickness.
‘We were in absolute shock,’ said Hayley, a fundraiser for a children’s hospice charity,
‘Nothing can prepare you for news like that about your 28-year-old husband.
On Valentine’s Day, they had a fire unit and fairy lights to give the igloo a cosy and romantic atmosphere, with fur covers on the wooden seats and a rose on the table as they feasted in the snow in their garden
Hayley also put on a wine tasting event for the couple at home in April 2020, where they tasted red wines from around the world at their dining table
They celebrated their sixth wedding anniversary with a shisha evening, and later washed everything down with Moroccan mint tea
‘Five days later, Matt had surgery to remove the tumour. Luckily, it was fairly straightforward as it was nestling on two cysts, and he was in theatre for three hours.
‘We’d been warned he may have problems with his speech and movement on his right side, but when I rang five hours after his operation, I was told he was sitting up in bed having a cup of tea – the relief was overwhelming.
‘I rushed to hospital to find the cheeky chappie asking for extra pudding – I couldn’t believe it.’
But two weeks later, biopsy results revealed the devastating news that Matt’s tumour was a glioblastoma, the most common aggressive brain tumour in adults, which has an average prognosis of 12-18 months.
When much of the UK saw snow in January this year, Hayley capitalised on the weather as she put on an Apres-ski style event, with hot chocolate in the garden where they wore retro 80s ski suits
As one of the first memories the couple made in April 2020, Hayley put on a spa day in their home and finished the day with cream tea for Matt
The couple moved in together in 2013 and Matt proposed on Christmas Day 2014, hiding the ring at the bottom of Hayley’s stocking, as she recalled wearing her Cookie Monster onesie when the proposal happened
‘We fell apart and struggled to process it,’ said Hayley.
‘Matt had radiotherapy and chemotherapy and I never heard him complain once.
I took my cue from him and determined to make the most of every moment together.’
Matt, 32, a hedge fund reconciliations analyst with a bank, had stable scans and the couple just ‘got on with life’ until a scan in April 2020 revealed his tumour was growing back. His second surgery in October 2020 took 10 hours due to the tumour’s position.
Hayley said that while they’re ‘realistic’ about Matt’s prognosis, she thinks it makes it ‘even more important to seek out joy in each day and share laughter’
Hayley, pictured relaxing and reading in the garden with the couple’s dog, said that she feels blessed to have Matt as her husband and her best friend, adding that he inspires her every day
‘This time, he suffered right-hand weakness and sometimes gets his words mixed up,’ said Hayley.
WHAT IS A GLIOBLASTOMA?
Glioblastomas are the most common cancerous brain tumours in adults.
They are fast growing and likely to spread.
Glioblastomas’ cause is unknown but may be related to a sufferer’s genes if mutations result in cells growing uncontrollably, forming a tumour.
Treatment is usually surgery to remove as much of the tumour as possible, followed by a combination of radio- and chemotherapy (chemoradiation).
It can be difficult to remove all of the growth as glioblastomas have tendrils that extend to other regions of the brain. These are targeted via chemoradiation.
Glioblastomas are often resistant to treatment as they are usually made up of different types of cells. Therefore, medication will kill off some cells and not others.
The average survival time is between 12 and 18 months.
Only 20 per cent of patients live longer than a year and just three per cent survive over three years.
Source: The Brain Tumour Charity
‘At first he had balance problems, but that’s improved now.’
Creating those memories at home are now even more precious.
‘We’re realistic about Matt’s prognosis but I think that makes even more important to seek out joy in each day and share laughter,’ said Hayley.
‘I feel blessed to have Matt as my husband – and my best friend – and he inspires me every day.’
David Jenkinson, The Brain Tumour Charity’s interim CEO, said: ‘We are very touched by Hayley and Matt’s story and are hugely grateful they are sharing their story in Brain Tumour Awareness Month to highlight our cause as brain tumours are the biggest cancer killer of children and adults under 40.
‘Despite that, over £500m is spent on cancer research in the UK every year, yet less than 3% is spent on brain tumours.
‘We are urging our supporters to share their stories and to sign up to BRIAN, our ground-breaking app and databank, whether living with a brain tumour, caring for someone who is or working in health care or research.
‘We receive no government funding and rely 100% on our wonderful supporters and partners like Hayley and Matt to help us towards our aim of doubling survival rates and halving the harm caused by brain tumours.
‘Like so many other charities, we are expecting over a 40% drop in our income this year, which is why our fundraising is more important than ever.’
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