I Lost My 26-Year-Old Brother To A Brain Tumour – The Biggest Cancer Killer Of Under-40s

In My Story, readers share their unique, life-changing experiences. This week we hear from Maria Lester, 42 from Surrey.

In August 2014, in the small hours of the morning, I sat in the darkened bedroom of my 26-year-old brother Stephen as his life was snuffed out by an unspeakably cruel brain tumour.

All of his dreams for the future died with him: he would never buy a house, get married, have children, or see his 30th birthday.

Afterwards, I Iay on my parents’ sofa and sobbed, while they had to call for a doctor to confirm his death. When I was finally cried out, I made a silent promise that this would not be the final chapter in Stephen’s story. It wasn’t.

Stephen had been training to be a pilot in the RAF when he was first diagnosed. He was strong, fit and talented; someone for whom even the sky wasn’t the limit.

For as long as I can remember, all he’d ever wanted to do was fly, but in 2008 he received the shocking news that spelled the end of his promising career: he had a type of brain cancer known as an astrocytoma.

The treatment sounded terrifying. He had an orange-sized tumour removed during an operation that was performed while he was awake, to avoid damaging other areas of the brain that controlled his speech, vision and movement.

The fear he must have felt is something I can’t begin to comprehend. But that was Stephen to a T: always courageous, never complaining.

He also had chemotherapy and radiotherapy, which made his hair fall out and left him feeling horrendous, a case of the cure being worse than the disease. Of course, we knew it wasn’t really a cure.

At a meeting with his neurosurgeon, he was warned that the tumour would regrow and one day kill him.

He managed to stave off that day for another six years, which made him one of the ‘lucky’ few: 88% of patients diagnosed with brain cancer will die within five years.

During that time, our family made memories that we’ll cherish for ever: a bucket-list holiday to Las Vegas, the chance for him to meet the team at his beloved Spurs, and a special audience with the incredibly kind magician Dynamo.

But Stephen was living on borrowed time, and by his 26th birthday he could hardly leave the house without a wheelchair.

It was agonising to watch as my brother, who could once run 12 miles carrying a large military rucksack, now struggled to walk 10 feet from his bedroom to the bathroom.

Soon he lost his memory, his power of speech, his appetite. It was no existence at all. And then, with his family by his side, he was suddenly gone.

But it wasn’t the end of his story. In 2015, to mark the anniversary of his death, I wrote a magazine article and launched a petition with the help of the charity Brain Tumour Research, calling on the government to fund more research into brain tumours, the biggest cancer killer of under-40s.

This is an area that has been historically underfunded for decades, with just 1% of the national spend on cancer research allocated to the disease. And yet statistics show that one in three of us knows someone affected by a brain tumour.

As I sat typing, I could never have imagined the extraordinary path the petition would lead me down over the next eight years. I asked some friends to share it, hoped we might hit the 10,000 names we needed to get a government response, and for a while that was as far as it went.

Then, out of the blue, someone from the Petitions Committee got in touch to say that they had decided to make it the subject of their first-ever inquiry.

Patients, charities and experts alike all gave evidence, and the Committee’s report concluded that “successive governments have failed brain tumour patients and their families for decades. The government must now put this right.”

In the end, the petition closed with a staggering 120,129 signatures, triggering a debate at Westminster in 2016.

In early 2018, my father Peter Realf and I were invited to a Brain Tumour Round Table Summit at Whitehall. Around the same time, the government pledged £40 million for research into brain tumours over the next five years, boosted by another £25 million from Cancer Research UK. The campaign seemed to have been an overwhelming success.

But then Covid struck.

Suddenly, the Department of Health and Social Care had a new crisis to deal with. Brain tumour campaigners were unable to come together. Many cancer trials ground to a halt. Ministers came and went. So did prime ministers.

Other issues had emerged, too: the limited number of clinical trials available to brain tumour patients (even taking Covid out of the equation); the urgent need for less red tape and more joined-up thinking.

Last month, it was reported that only £15 million of the government’s promised £40 million had materialised, which was a devastating blow.

But this week, there were two major new twists in the tale. First, the All-Party Parliamentary Group on Brain Tumours, which had been holding its own inquiry, published a landmark report calling for the government to recognise brain tumour research as a ‘critical priority’ and ring-fence £110 million of current and new funding.

Shortly afterwards, it was announced that another brain tumour debate will be held on March 9, this time in the main chamber, where I hope it will finally get the recognition and increased investment it so desperately deserves.

Whether the government will commit to the further funding – and, more importantly, actually uphold its pledge in full this time – is something that should concern us all.

For brain tumours do not discriminate: they can affect people of any age, gender and background. Some days I catch myself staring at my son, my husband, my friends, even myself in the mirror, and wondering: could you be next?

The debate is timely. March happens to be Brain Tumour Awareness Month. But for the thousands of patients living with the disease, or the heartbroken families who have lost loved ones, every day is brain tumour awareness day.

I have met lots of inspiring patients over the past eight years, many of them no longer with us. The Wanted singer Tom Parker, who I had the privilege of campaigning alongside before he died last year aged 33. Amani Liaquat, who graduated with a first-class law degree before her glittering future was cut short at 23. Anna Swabey, who blogged so bravely about her battle, and passed away aged 25 the day before what should have been her wedding.

When I watch the debate this week, it will be their faces I picture, along with the brother I would give anything to see again. And whose story I will keep telling until we find a cure.

Maria and her father will be attending Westminster on March 9, where there will be a parliamentary debate into the current lack of funding into research for brain tumours. She did not receive a fee for this article. To take part in HuffPost UK’s My Story series, email uklife@huffpost.com.