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Couple find love after pioneering proton beam therapy

Most couples meet through friends, work or – especially during lockdown – online, but fate brought Clara Darcy and Tom Vinnicombe together in the most unlikely of places – a world-renowned hospital where they had pioneering treatment for their brain tumours. Poignantly, happiness came out of them sharing the heart breaking bond of living with […]

Most couples meet through friends, work or – especially during lockdown – online, but fate brought Clara Darcy and Tom Vinnicombe together in the most unlikely of places – a world-renowned hospital where they had pioneering treatment for their brain tumours.

Poignantly, happiness came out of them sharing the heart breaking bond of living with the devastating disease.

When they met at The Christie in Manchester in October 2019, they were drawn to each other and after treatment they kept in touch.

As they opened up to each other about the emotional impact of living with a brain tumour, friendship blossomed into love and the couple are now planning a future together.

It’s wonderful that something so positive has come out of our ordeals.” said Clara, 38, an actress from Manchester, who has had guest roles in Channel 4’s Hollyoaks ITV’s Emmerdale and The Royal and BBC2’s Eric and Ernie.

I never dreamt having cancer would lead me to the man of my dreams.

We understand what each other have been through.

If I have a wobble, Tom’s there for me and I’m there to reassure him when he needs it. I’m so grateful to have him at my side.

Now the couple are sharing their story to help The Brain Tumour Charity raise awareness about brain tumours – the biggest cancer killer of children and under-40s in the UK – and highlight its relationship counselling service in partnership with Relate.

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Clara was diagnosed in July 2019 after suffering severe headaches for six months. She’d been to her GP several months before who put her headaches down to migraines and prescribed medication.

Desperate for relief, Clara saw a muscular-skeletal physiotherapist as she thought she may have damaged a nerve as most of the pain was in her neck; and then she saw a chiropractor.

Nothing worked and the pain was escalating,” said Clara.

One weekend, she went to her local A & E in agony. By then, she’d also had other symptoms on and off including a hoarse voice, blurred vision and vomiting,

I was expecting them to give me a steroid injection in my neck and send me on my way, but they ordered a CT scan,” said Clara.

The doctor told me the scan had shown a ‘huge abnormality.’ I immediately had to have a more detailed MRI scan, which confirmed I had a brain tumour.

I was shocked and that time is a blur. But I remember a sense of relief that I finally knew what was wrong with me.

Doctors told Clara that she had a very rare clival chordoma, a type of cancer that develops in the bone of skull base and can grow towards the brain.

My neurosurgeon said it was the biggest he’d ever seen – the size of a fist,” said Clara.

It had eaten away at several of my upper vertebrae and he was concerned that my neck might not be strong enough to hold up my head after surgery.

I was told I may need spinal fusion surgery, too, which would have welded some of my vertebrae together.

It was another devastating blow because, as an actress and dancer, I need a range of movement and I thought I would become massively restricted physically.

A week after being diagnosed, Clara underwent 14 hours’ endonasal keyhole surgery at Salford Royal Hospital.

I couldn’t believe it when they told me they were going to remove my brain tumour through my nose!” said Clara.

But it was the safest way to do it because my tumour was just in front of my brain stem and very difficult to get to with traditional surgery.

My family were terrified I wouldn’t make it through the operation, but I just knew I would – partly thanks to my incredible surgeon, who removed 95-98% of my tumour.

Clara came round from surgery wearing a large halo cage to support her neck. After five days and more scans, much to her relief, doctors decided she didn’t need spinal fusion.

She couldn’t eat or talk for a week because she had an elective tracheostomy during surgery as the tumour was pressing on her trachea.

After three weeks in hospital, I went to stay with my mum and dad, and recovered from surgery fairly quickly,” said Clara.

Three months later, she started eight weeks’ proton beam therapy at The Christie, the only UK centre to offer the treatment – which is more targeted than conventional radiotherapy damaging less healthy tissue – on the NHS since 2018.

I felt so blessed to be eligible for the treatment, especially as the hospital is on my doorstep,” said Clara.

Fate stepped in as marine engineer Tom, 34, was also having proton beam therapy at The Christie, six years after he was diagnosed with a brain tumour in September 2011.

His family had already suffered tragedy when Tom’s twin brother, Christian, was killed in a car accident in 2009, and his mum was diagnosed with incurable cervical cancer 18 months after Tom’s own diagnosis.

As they come from a seafaring background, Tom’s dad suggested he build a boat in his twin’s memory.

Over the next three years, Tom spent countless hours after work and weekends on his labour of love building the Kingfisher Sport 18-foot vessel.

One night I was working late on the boat and my right eye went slightly blurry,” said Tom from Cornwall.

I just put it down to being tired or that I’d got something in my eye.

I could move my eye from the centre to the right but it wouldn’t move from the centre to the left, but I didn’t really think anything of it.

I went to the local A & E and they couldn’t find anything wrong, so they sent me to the eye clinic at my local hospital, where I had an MRI scan.

A few weeks later, while Tom was waiting for the scan results, he went to Falmouth Oysters Festival and had his photo taken with Cold Feet actor John Thomson.

My eye looked ‘stuck’ in the photo and that’s when I knew something weird was going on,” said Tom.

When I went back to hospital, the doctor said, ‘You’ve got a brain tumour.

He said I had the calmest reaction he’d ever had from anyone, but I’m a very level-headed, chilled person and just thought, ‘Let’s get on with it.’”

Determined to get his brother’s boat into the water before his surgery in November 2013, Tom launched it in front of family and friends on the fourth anniversary of his death that August. Sadly, his mum was too ill to go and died two days later.

Three months later, Tom had a temporal craniotomy at Bristol Southmead Hospital to remove the golfball-sized tumour and biopsy results revealed it was a grade 2 (non-cancerous) chondrosarcoma, a rare tumour which can affect the base of the skull and grow into the brain.

“I was in hospital for a week and at home for another two weeks, then back to work like nothing had happened,” said Tom, who has signed up to The Brain Tumour Charity’s ground-breaking BRIAN app.

Tom had stable scans for four years until his tumour started growing again. In October 2017, he had another 12-hour craniotomy, which left him with permanent deafness in his right ear.

After surgery, I had terrible balance problems for a few weeks, but was able to go back to work after three weeks,” said Tom.

When I was accepted to have proton beam therapy at The Christie a few years later, doctors told me that I was the first person from Cornwall to have the treatment on the NHS in the UK.

Little did he know he was about to meet his soul mate.

Tom teases me as he vividly remembers meeting me on the first day of our treatment, but I have no recollection of it at all as I felt so ill,” said Clara.

At first, he chatted to my mum more than me as he’d bump into her in the waiting room while she was waiting for me to come out of treatment.

But we gravitated towards each other as we were the only patients a similar age.

My first impressions were, ‘he’s cute’, He had the most gorgeous twinkling blue eyes and I loved his Cornish accent.

I remember thinking in normal circumstances, I would’ve asked him out, but I felt so rough during treatment that romance was the last thing on my mind.

On December 5, 2019, Clara finished her treatment the day before Tom and rang a bell to mark the milestone, watched by her family.

It was such an emotional moment and Tom gave me a massive hug,” said Clara.

Next day, I decided to surprise him by going back to the hospital to watch him ring the bell as I knew it was too far for his family to travel from Cornwall.

But when Clara got there, Tom had already completed the ceremony so he could leave earlier for his long journey home.

I was really disappointed and wanted to keep in touch with him, so I asked the staff to forward a good luck card I’d bought for him,” she said.

Clara had put her phone number in the card and a few days later, Tom texted to thank her. They started messaging each other about once a month, comparing notes on their recovery.

I found myself looking forward more and more to hearing from him,” said Clara.

Over the following summer, the texts got more frequent and flirty, and then eventually we started chatting on the phone daily and Facetiming each other.

In December 2020, after a year of keeping in touch, Tom had a check-up at The Christie and suggested they meet up.

He was going to stay at a hotel but I invited him to stay with me,” said Clara.

It was romantic going to Christmas light displays together and that was it really, we were a couple and things got serious quickly.

We’re totally different and haven’t got much else in common apart from having brain tumours – I know nothing about marine engineering and the acting world is alien to Tom, but we just gel and it keeps things interesting.

Now Clara and Tom take it in turns to make the 700-mile round trip every four-six weeks to see each other and are planning a future together.

It’s a hefty trip but it’s worth it to be together,” said Clara.

Sometimes we’ve gone longer without seeing each other due to Covid restrictions, which was difficult.

We’ve got to know each other’s friends and for now have the best of both worlds – Cornwall’s beauty and Manchester’s trendy vibe. Once we’ve decided where to live, we’re hoping to move in together.

The couple are grateful for “incredible support” from their families and friends but “feel blessed” to have each other.

Tom’s the only other person who gets first-hand the fear, anger and trepidation that comes with living with a brain tumour, “said Clara, who has co-written a play about her tumour, which she hopes to perform at the Edinburgh Fringe Festival this year as part of a national tour.

It’s so reassuring to know Tom gets how I feel and we both now have scans every six months.

Tom also helps me cope with my anxiety that my tumour is malignant and very likely to grow back at some stage; and, although his is low-grade, there’s a chance his could recur, too.

Being diagnosed with a brain tumour is the worst thing that’s ever happened to me, but it also brought us together and we’re blissfully happy.

We hope that sharing our story will help give people hope that you can find love even in the darkest times.

Now we both want to enjoy every ounce of life together as we know how precious life is.

Tom said: “Right from the start, our relationship was simple and relaxed – it felt right.

We keep each other’s spirits up when the other is having down days. I love how cheerful Clara is, she always looks for the positive and is never down for long.

The staff were amazing at The Christie but the best part was meeting Clara. It was such a random place to meet someone in hard circumstances, but I feel so lucky we found each other.

Eve Kelleher, The Brain Tumour Charity’s Head of Services, said: “Our warmest wishes go to Clara and Tom and we are delighted for them that something positive has come out of their shared experience of being diagnosed with brain tumours.

We are hugely grateful they are sharing their story to help us raise awareness about brain tumours – the biggest cancer killer of children and adults under 40 in the UK.

While Clara and Tom’s experience is such a happy story of their diagnoses bringing them together, we know that a brain tumour diagnosis can be 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.

Anyone affected by a brain tumour can call our free support and information line on 0808 800 0004 or email support@thebraintumourcharity.org

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