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If only brain tumour research could be funded in the same way as leukaemia and other cancers

Stephen Realf – In Our Hearts

Stephen RealfJournalist Maria Lester’s moving account of her brother Stephen’s brain tumour battle was first published in the Mail on Sunday’s YOU magazine*, a year after he passed away in August 2014 at the age of 26. She launched an e-petition which quickly attracted thousands of signatures and became the first to prompt an inquiry by the new House of Commons Petitions Committee.

Stephen packed more into the six years after his diagnosis than most people do in 86. But he couldn’t keep fighting forever. By the time his 26th birthday came around he was in a wheelchair. He went into a rapid decline, losing his ability to speak, eat or even get out of bed. I don’t like to dwell on those final few weeks, as that’s not the Stephen I remember. To me, he will be forever dashing, forever dignified, forever beaming that beautiful big smile.”

Stephen’s sister Maria tells his story… 

Growing up, my younger brother Stephen and I were pretty much polar opposites. He loved planes and eventually joined the RAF as a trainee pilot; I’m a nervous flyer. He could tell you anything about Tottenham Hotspur, while I couldn’t even tell you the offside rule. And now there is the biggest difference of all – I am still here, and he is not.

Losing a sibling, especially such a young one, feels as though a piece of yourself has been forcibly removed. The wound may heal, given time, but the scar will always be there. It is the kind of seismic shift that rewrites the family history in an instant, splitting everything into before and after, then and now, with and without.

I miss my little brother, often at the most random of moments. Despite few common interests beyond a shared love of movies, we couldn’t have been any closer. While my younger sister Kathryn and I were born just two years apart, predestined to bicker over clothes and boys, Stephen came along eight years after me – the beloved baby of our happy family. But all the love in the world cannot offer immunity from tragedy, which first struck in 2008.

Stephen was 19 and still in flying training when he began to feel “not quite right”. In hindsight, there had been a few early warning signs: occasional complaints of ringing in his ears, followed by pins and needles; the time he collapsed shaking one sunny day, only to be sent home from hospital and told he was simply dehydrated.

Though he never said so to me, I suspect his biggest fear was that it might be the onset of epilepsy, which would almost certainly terminate his RAF career. Little did we know then that it was something even worse – something that would end not only his career, but also his life, and the carefree lives of those around him.

The day he was diagnosed with an astrocytoma – a type of brain tumour – in the April of that year was one of our family’s darkest. The thought that this bright, brave teenager with everything to live for now had a potentially fatal cancer was too awful to comprehend. A quick trawl of the internet for survival statistics (probably the worst thing you can do in that situation) made for grim reading. And, perhaps worst of all, there was nothing any of us could do to “fix” him: unlike bone marrow or a kidney, you cannot donate a piece of your brain.

Within days of his diagnosis, the promising career he’d spent years building suddenly began to unravel. He was no longer able to fly, something that pained him far more than the tumour, and had to leave behind life on the RAF base – and many friends – to move back in with my parents in the Midlands. He also had to surrender his driving licence on medical grounds, and I know he mourned the loss of his independence deeply. It’s testament to his determination and his caring medical team that he eventually managed to get his condition under control and his licence back, albeit for less than a year.

Then there was the treatment, which seemed almost as distressing as the illness. First, he underwent major surgery to remove as much of the tumour as possible but, because of its awkward position in the brain, there was a danger that his speech or movement could be impaired.

To reduce this risk, he chose to remain awake for much of the procedure – while fixed to the theatre table – so that cognitive checks could be done at regular intervals. I can’t begin to imagine the courage required to lie still while doctors operate inside your head, but I’m pretty sure I’d have passed out in shock. This was followed by gruelling sessions of radiotherapy and chemotherapy, which caused him to lose both his appetite and his hair.

But while these measures brought him precious extra time, it quickly became clear that his condition was incurable. The tumour was too unpredictable, too embedded, too difficult to remove in its entirety. Each quarterly scan loomed large on the calendar, a ticking time bomb that could go off at any moment. We knew it was a question of when, not if, though we tried never to dwell on the answer.

And yet, in these most difficult of days, we created some of our happiest memories. One of Stephen’s favourite films was The Hangover, so we booked the family trip of a lifetime to Las Vegas – where, by complete coincidence, we bumped into one of the film’s stars, boxer Mike Tyson. (We managed to get a photograph of Stephen and Mike together, though it was such an unlikely tale that all his friends were convinced we must have gone to Madame Tussauds.)

Back in the UK, we arranged for Stephen to meet many of the staff and players at his beloved Spurs, go to a film premiere attended by Bruce Willis and dine out at top London restaurant The Ivy. On what turned out to be his last trip to the capital in April 2014, we planned a surprise meeting with his idol, the magician Dynamo, who blew us all away with both his kindness and talent.

Everywhere we went, Stephen retained his incredible courage and cheeky sense of humour. On another family holiday, he had a brief seizure in front of a girl he’d been trying to impress. “Come quickly,” she called out to me. “It must be his ejector-seat injury.” Baffled, I tried to play along, until Stephen could explain later. Turns out he’d used a bit of Top Gun-inspired creativity to explain the large scar on his head.

His playful personality also made him popular at the local Myton Hospice. When he began taking part in activities there – at the suggestion of his Macmillan nurse, who felt it might do him good to get out of the house more – we didn’t really expect him to enjoy it because he was so much younger than the other patients. However, to our surprise, he made many new friends and found a supportive sense of community. They encouraged him not to dwell on the things he couldn’t do, but to focus instead on those he still could, living each day to the fullest.

In the end, Stephen packed more into the six years after his diagnosis than most people do in 86. But he couldn’t keep fighting forever. By May 2014, it was clear that his health was seriously deteriorating, as he began to forget words and names, and found it tiring just to walk downstairs.

By the time his 26th birthday came around the following month, he was in a wheelchair. That was a hard night, with friends and family trying to keep his spirits up as we got together, all knowing there was a high chance it would be his last year with us.

After that, he went into a rapid decline, losing his ability to speak, eat or even get out of bed. I don’t like to dwell on those final few weeks, as that’s not the Stephen I remember. To me, he will be forever dashing, forever dignified, forever beaming that beautiful big smile.

He passed away peacefully at home in his own bed, surrounded by those who loved him most, and love him still. In the hours just before he died, his faithful Labrador Jack bounded up the stairs and into his room to lie across his lap one last time. It was almost as if he knew.

In the days immediately after Stephen’s death, I couldn’t stop reflecting on what a huge waste it all was: the high-flying career that was cut short; the wife he would never meet; the children he’d never get the chance to be a great dad to. But standing at his funeral, seeing row upon row of people whose lives he touched so deeply, I knew for sure that his short time on this earth was anything but wasted.

He was given an incredible send off, having left my parents a rather organised but heartbreaking list outlining how he’d like it to go (though we did all wonder whether ‘Fly-past – if possible?’ might be a challenge too far). The service was led by a former RAF chaplain who had known Stephen well, and it showed in the thoughtful words he spoke. Tottenham sent a stunning floral arrangement in the shape of the club’s logo.

And as we all gathered around the coffin at the cemetery to say our final goodbyes, a Typhoon jet did a slow-roll salute overhead. The RAF had been able to arrange his fly-past after all. The whole day was such a perfect tribute that my biggest regret – ironically – was that he wasn’t there to witness it.

Since Stephen died, he is never far from my thoughts. There are days when I feel angry, days when I have a little cry, but there are also days when I can look back at photos of him and smile. My parents, sister and I talk about him often, and while his absence will always be deeply felt in our lives, we do try to focus on the fun we had together and the special memories we share. Despite everything my little brother endured, he always picked himself up and refused to feel sorry for himself, so it would seem almost disrespectful for me to sit around moping now.

Instead, through the clouds, some small rays of sunshine have emerged. Firstly, the outpouring of kindness from my husband, family, friends and colleagues, even from people I had not seen for years, was genuinely moving – from the childhood pals who showed up in solidarity at his funeral, to the kind friend who asked for donations to The Myton Hospices in lieu of gifts for his 40th birthday, to everyone who took the time to compose a compassionate letter or card.

There was, admittedly, also the occasional thoughtless comment, but even then I realised that the speaker meant well and just didn’t know what to say. In my experience – and I’m aware that everyone grieves differently – I preferred friends saying something to saying nothing. The times that hurt most were when people avoided bringing up his death at all, as though they were afraid it might lower the mood, but thankfully such encounters were few and far between.

Secondly, and perhaps not surprisingly, I have embraced more of a carpe diem mentality. It may sound clichéd to say that life is short, but that doesn’t make it any less true. None of us knows how many tomorrows we are going to get, and that’s something I no longer take for granted. After Stephen’s death, I made myself jot down my own ‘bucket list’, and by the end of this year I’m hoping to have ticked off eight out of ten. Highlights have included snorkelling at Australia’s Great Barrier Reef and climbing the Sydney Harbour Bridge, which meant overcoming my flying jitters enough to make the long-haul trip – although I’ll never love planes the way that Stephen did!

Finally, I’m trying to take positive action in his memory, to help other families who may find themselves in a similar situation. One of my aims is to raise greater awareness of brain tumours, and to highlight the urgent need for further research. At present, little is known about what causes them – and yet they claim around 3,600 lives a year, affecting people of both sexes and all ages. In fact, they kill more children and adults under 40 than any other cancer – and yet received just 1.5 per cent (£7.7 million) last year of the national spend on research into cancers, according to Brain Tumour Research.

These statistics are shocking, which is why I started a petition supporting Brain Tumour Research’s campaign to see this investment increased to between £30 and £35 million a year. It quickly gathered momentum, and in October 2015 – shortly after reaching 14,000 signatures – became the first ever e-petition to prompt an inquiry by the new Petitions Committee. The following month, my father Peter, mother Elizabeth and myself were all invited to Westminster to submit formal evidence, along with Brain Tumour Research’s Chief Executive, Sue Farrington Smith. At the time of writing, the inquiry continues while the petition has climbed to more than 33,000 names – and I would urge you to spare just a few seconds to add yours in support of this incredibly important cause.

There is no time to waste. It may be too late for Stephen – but, with further breakthroughs, who knows how many other brothers, sisters, mothers, fathers, friends and children we could save?

Maria Lester, November 2015

*This is an edited version of the article that appeared in YOU magazine, reproduced with permission.

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