Coping with a life-changing diagnosis during COVID-19

As the UK went into COVID-induced lockdown, Matthew and Hayley Smith were receiving the news they had dreaded for four years – that Matthew’s brain tumour had come back.

They were given the diagnosis in an eerily quiet oncology ward and told that the current crisis meant they would have to wait until at least July to discuss next steps.

We spoke to Hayley about coping with life-changing news without the physical support of family and friends, the power of positivity, and how raising tens of thousands of pounds for the Brain Tumour Charity has kept the pair focused.

First shock

Matthew was just 28 when he was told he had a brain tumour in 2016. To describe the diagnosis as a shock is something of an understatement, says his wife Hayley.

“He didn’t really have any symptoms leading up to it. Everything was normal,” she says, explaining that he had visited the doctor with severe headaches, but was only sent for CT and MRI scans after developing a rash on his neck and becoming confused.

“We thought it was migraines, but the scans showed the tumour was so big that it was pushing on his eyeballs, causing the headache.”

“We could have used chemotherapy, but we decided on the spot that there was no point putting him through that, or at greater risk of COVID-19, because it is so ineffective”

A week later, he was in the operating theatre, where neurosurgeons removed a tumour the size of one quarter of his brain. The shocked couple were told that it had probably been growing for around 14 years.

It wasn’t until later that they found out it was grade four glioblastoma, a particularly aggressive type of tumour, and that his healthcare team expected it to grow back.

“It all happened so quickly that we didn’t have a chance to research anything. They said they had got 90% of the tumour during the operation, so we thought that was amazing.

“It’s only when we went back for a follow-up appointment, they said he had 12 months to live. It was totally out of the blue,” Hayley says.

“At first, we were thinking ‘gosh’, we’ve only have a year. But then we slowly realised that Matthew was actually really healthy. He had a plan of six weeks of radiotherapy five days a week and chemotherapy pills for a year, but, weirdly, he was never sick.”

Overtime, the couple, who have been together for 12 years and married for the last five, got used to living in limbo, settling into a routine of six-monthly monitoring scans.

Recurring nightmare

Then everything changed for Matthew and Hayley, who live in West Lothian.

“It had all been clear scans, which is unheard of with this type of tumour. It’s really strange because we had four years of thinking ‘maybe it will never come back’, even though you know in the back of your head that it will. It’s really tough.”

They received the results of the latest scan, which showed two new tumours, on 1 April.

“The lockdown had just started, and things were really strange. No one else was in outpatients and the doctors weren’t seeing anyone. That’s when we knew something was wrong – that there was a reason the consultant wanted to see us face-to-face.

“We were told that there was nothing they could do, and we were so shellshocked we just accepted it. The tumours are really small at the moment, but they are really hard to treat.”

The only option would be chemotherapy tablets, which have low efficacy when not used in conjunction with radiotherapy or surgery, both of which are currently unavailable, and are immunosuppressive.

Hayley says: “We could have had the tablets, but we decided on the spot that there was no point putting him through that, or at greater risk of COVID-19, because they are so ineffective.

“We were told the soonest they would be able to do something would be in 12 weeks. That’s a really long time with brain tumours because they are so unpredictable.”

Focusing on the positive

One of the most difficult things to cope with is not being able to physically lean on the family and friends who proved to be so invaluable after Matthew’s first diagnosis.

“I don’t know how we are coping, if I’m honest. The first time hit us so hard that I think we have become quite resilient. Because we didn’t think he would be here for long, we already have a mental barrier up and we just get on with it.

“Matthew is such a positive person and he has such a fantastic attitude towards the whole thing.  He knows there is nothing he can do about it and he is thankful that he is still quite healthy.”

Hayley, a hospice fund-raiser, and Matthew, who works for a private bank, have also channelled their energy into raising money for the Brain Tumour Charity.

Matthew says: “Lots of people were asking how my scan results went, so we posted a quick update on Facebook and asked if people could donate even just £1 to The Matthew Smith Fund to help brighten our day. In less than 48 hours, we had over £3,000 in donations.”

Hayley and Matthew founded The Matthew Smith Fund two years ago, and they had hoped to reach £30,000 by her 30th birthday, in July.

Hayley, who trekked 100km across the Sahara Desert with three friends for the fund last year, says: “I had thought the target was impossible with the pandemic meaning fundraisers had to be cancelled. These donations mean the fund has reached more than £31,000.

“There were a lot of happy tears. I’m so grateful for the support of friends, family and people who don’t even know us. It’s a difficult time, made even worse by not being able to see family, but this has really touched us and put smiles on our faces.”

Her hope, she adds, is that the money would help find new treatments, and, ultimately a cure, for the devastating disease, and help others in their position.