I’M TAKING ON MY SHAWN’SSILENT KILLER

THE snow was lying thick on the ground outside Shawn Clark’s home. It was January, the Christmas lights were down and the novelty of the winter weather was beginning to wear thin.

Out he went to clear the latest snowfall drifting into the neat housing estate, just a ball’s throw from Livingston Rugby Club. A former soldier, he soon had the roads and pavements cleared, and when a few weeks later he began to feel pain in his right leg, the snow got the blame.

However by February 7 the 42-year-old was in accident and emergency at St John’s Hospital, unable to lift his right foot from the ground.

By the time he and his wife Rachel were back home, what they had thought might be a trapped nerve had been diagnosed as a massive, aggressive, inoperable brain tumour. A tumour which, five months later, would leave Rachel a widow at 40, and their 19-year-old son Tom without a father.

“Shawn had been suffering from headaches but we never thought about a brain tumour,” says Rachel. “He was working as a contractor for RBS and of course things were stressful so you think that’s what’s causing the headaches.

“When we went to the hospital we really did just think it was for a trapped nerve. He was responding well to the tests they were giving him, they thought he might just need physio.

“However when I mentioned that he’d recently been forgetting things, they decided to give him a brain scan. To say it was a shock when we were told . . . well there isn’t a word for it. It was as though it wasn’t real. Devastating doesn’t cover it. Perhaps surreal.”

A biopsy revealed that Shawn was suffering from the deadliest form of brain cancer, a grade four glioblastoma multiforme. Doctors told them he had between six months and a year to live. Shawn was now one of the 6500 people who are diagnosed with primary brain cancer in the UK every year.

Sitting in her tidy kitchen, trying to ignore the thumping overhead from the family dog unhappy at being shut out of the conversation and the odd screech from the parakeet in the living room, Rachel frequently blinks back tears as she talks.

Her hair as dark as her mood, her spirits only lift when she glances at the portrait of Shawn she has had tattooed on her left arm – the red roses around his face, still bright with ink. “It took seven-and-a-half hours and was pretty painful, but he’s worth it,” she says.

The family had arrived in Livingston three years ago, “to get a better quality of life than the one we had in London. Ironic, isn’t it?” she says. “It was great to have the countryside on our doorstep. And my roots are here as my mum was from Edinburgh and my dad from Blackburn. As he was army I was born in Germany and mostly brought up in London.

“Shawn was ex-army himself, he’d been in the Royal Irish and the Royal Artillery, but we wanted a complete change. Then things went pear-shaped.”

As the family struggled to come to terms with the diagnosis, Shawn began radiotherapy at the Western General. “Before he started it his movement on his right hand side was deteriorating fast, he said it like having lead weights on his arm and leg. He responded well to the radiotherapy, but then he had a general seizure, like an epileptic fit. That was terrifying.

“So then he was on anti-seizure medication, he had a blood clot, so was on thinning injections daily and, of course, steroids. All this from what we had thought was a trapped nerve.” By June, Shawn was offered the chance to begin chemotherapy as things seemed to be going well. But on the morning of July 6 he woke up with severe pain behind his eye and in his head. “We went to St John’s by ambulance. He was in such a lot of pain.

“He was admitted at 11.30am. The doctor called the neuro-oncologist at the Western and for some reason they agreed not to give Shawn a scan – I still have no idea why they came to that decision.

“He started fitting and was taken into resuscitation. That was the last time I had a coherent conversation with him. He asked me where I was going because the doctor wanted to talk to me . . .”

She pauses to compose herself. “I was asked if I wanted him to be resuscitated. I told them yes because they couldn’t tell me what was happening with him. By 5.30pm he was moved to a medical admissions unit and finally the doctor there agreed to scan him.

“It was only then they discovered that he been suffering a massive haemorrhage – and had been since he’d been admitted that morning. Only then did they also give him the pain relief he really needed.”

Rachel finally went home at 10.30pm. At 6.30am the next day the phone rang. She and Tom, whom she describes as still being “shellshocked and angry” went back to the hospital. Shawn passed away at 9.30am.

“He was so brave through it all,” she says. “But that’s the way he was. He was always very physical. He played rugby, went fishing, climbed Munros. He loved the outdoors, so to not be able to do all that was difficult for him.

“I also think that while all cancers are terrible – my gran died of cervical cancer, my mother was also affected by it – I think brain cancers are the worst because of how they can change people physically and through their personalities. When that happened I just had to let it go over my head, because I knew it wasn’t Shawn, it was the tumour.”

However, Shawn’s death has given Rachel a new purpose. Two months on and she’s now raising money for Macmillan Cancer Support – she used the financial advice service herself when Shawn was ill – but as important for her, she’s becoming an ambassador for Brain Tumour UK to raise awareness about brain tumours.

“This is my job now,” she says. “More people under the age of 40 die from brain tumours than any other cancer, and it’s a bigger killer of children than leukaemia, but the research doesn’t get the funding it needs. I’ve no idea why that is but I have decided that I won’t stop until that’s changed. I might even chain myself to the railings at No 10 Downing Street.”

Rachel and Tom have already held a fundraising paintball day for the charities – it was one of Shawn’s favourite past-times - and she also intends to abseil off the Forth Bridge next year for Macmillan. In the meantime she’s supporting the cancer charity’s World’s Biggest Coffee Morning on September 30.

“When you say Macmillan to most people they think of nurses but there’s so much else they offer which can be just as important to people with cancer – that’s definitely got to be worth supporting,” says Rachel.

“But people have got to be more aware of brain cancer. It’s a silent killer. Shawn could have had it for years and not known. People shouldn’t be fobbed off if they have persistent headaches [and be told] they are migraines. They should demand a scan. The earlier it’s picked up, the more chance of survival.

“I’m doing this for Shawn, but also all those who have been diagnosed and those that will be in the future. They all need brain cancer to be more prominent. People need to talk about it as much as they do other cancers. Hopefully once awareness is raised, the money will follow.”

n For more information on Macmillan’s World’s Biggest Coffee Morning visit www.coffee. macmillan.co.uk. For more information on Brain Tumour UK visit www.braintumouruk.org.uk. Rachel has also launched a Facebook page Campaign to Raise Awareness and Funding for Those Affected by Brain Tumours.

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