Andrew Hirst, a father of three young children from the market town of Newark in Nottinghamshire, was living life at breakneck speed – and loving every minute of it. 

There were 5am starts to support the Olympic aspirations of his 10-year-old son, Freddie, a county-level swimmer. There were regular runs with his daughter Juliana, aged six and already a precociously gifted young athlete.

There were school runs, park runs, the odd game of football with friends; happy moments with his wife, Rachael, and treasured walks with Maximilian, his three-year-old son.

A full-time family man, Andrew even found time to fit in a full-time career, first as a design and technology teacher and more recently as an educational support leader. Life was fulfilling.

But at the age of 35, Andrew is in danger of losing everything. He was recently diagnosed with a cancerous brain tumour and the prognosis is bleak.

Andrew is facing the future with the same sense of purpose he has brought to other aspects of his life, and is hopeful a fundraising campaign can secure enough money to obtain potentially lifesaving treatment. Even so, his words are fraught with a sense of what might be lost. 

‘It’s just realising that things are going to have to change, obviously not being able to see my children grow up, not being able to grow old with my wife,’ says Andrew, whose relationship with Rachael began in 2012. ‘Things like that, that’s what upset me the most. 

‘I’d always thought that me and my wife would retire together. My oldest boy is so determined to swim for Great Britain; I might not ever see it. 

‘When I take my daughter running, it started out as we would look at butterflies and birds, we used to walk [the park course] together. 

‘With my working here, there and everywhere Monday to Friday, Saturday morning was just me and my daughter, just talking about school, strawberries and birds, singing songs and looking at ducks. 

‘Later, she wanted to do a bit of jogging, and then she moved on and she said, “Why don’t we see how fast we can do it today, daddy?”

‘We held hands while we did the running. It went on from there. At the minute I can’t run with her, so we can’t share those moments. Obviously she can walk it and do it with me, but it’s not the same.’ 

It was last November that things took an unexpected turn. 

Andrew began to experience headaches; intermittent at first, they became increasingly intense, eventually prompting him to contact his GP. No appointments were available and so Andrew soldiered on, assuming he was suffering from natural fatigue. 

‘I was getting headaches, migraines, but I just put it down to tiredness’, he says, before elaborating in terms that emphasise just how much family is the prism through which he sees life. 

‘When one day you’re in London and the next you might be in Grimsby; you’ve got a 10-year-old who’s swimming with kids two years older than him at county level, has his eyes set on going to the Olympics in Australia when he’s 18; you’ve got a girl who every night goes on the treadmill and does 2k, then does stretches, you, know, I just put it down to trying to juggle too much.’

But something wasn’t right.

The days before Andrew’s world turned upside down were nothing out of the ordinary. At the weekend, he went for a run with the kids, mowed the lawn, had friends over for dinner; on Monday, he helped moderate a French exam. 

Then he got home and it was, he says, ‘literally like someone had flicked a light switch’.

‘I was being sick and couldn’t open my eyes,’ recalls Andrew, who had a temperature of 107F. ‘Just having the light on anywhere, even a mobile phone screen, I just couldn’t deal with it.

‘The pain [was overwhelming] – I just lay on the bathroom floor and I couldn’t move. I had no energy, I was really hot. I thought that was it.’

After a call to 111, Andrew was immediately referred to a doctor, and from there to King’s Mill hospital in Sutton-in-Ashfield, where he was driven by Rachael after the couple were told it would be quicker than calling an ambulance. 

Scans revealed a grade 4 glioblastoma, a malignant brain tumour with an average survival time of 12-18 months. The most common and aggressive form of primary brain tumor in adults, it is found in the brain’s connective tissue, spreading in a manner that has been likened to the roots of a tree, with all the attendant challenges that implies for surgical removal.

Only a quarter of patients surviving for more than one year following diagnosis, while the five-year survival rate is about 5%, according to Cancer Research UK.

In Andrew’s case, the swelling caused by the tumour was so severe that his brain had moved by 8mm. After undergoing a five-day course of steroids to reduce the swelling, he was moved to Queen’s Medical Centre, a teaching hospital in Nottingham, where he underwent brain surgery. 

‘All I wanted to do was just go home,’ recalls Andrew. ‘I woke up and asked where my running shoes were, where my work laptop was. The penny hadn’t dropped that it was a lot more serious than I was thinking.’

Thirty sessions of radiotherapy and chemotherapy followed, but Andrew wanted to look beyond traditional treatment methods.

‘It became apparent that the treatment I’ve received has been around for decades,’ he says. ‘As someone who works in technology, I know it moves on every month, every year. It made me question why the treatment available has not progressed.

‘Then I realised that places like Australia, Germany, America, have alternative treatments, things that haven’t been passed on the NHS yet. It got me looking at the  alternatives.’

One of those alternatives is targeted hyperthermia treatment, which involves heating the tumour to open up the surrounding blood vessels and fill them with more oxygen, boosting the effects of radiotherapy and chemotherapy. 

Clinical trials have shown promise, but the experimental approach is not available on the NHS. Short of undertaking treatment abroad, Andrew’s only option is to have the therapy done privately, which would involve travelling to London for three 90-minute sessions a week at a cost of around £4,000 a month.

The other possibility is immunotherapy, another experimental treatment that made headlines last year when Professor Richard Scolyer, a leading Australian pathologist who was diagnosed with a glioblastoma in June 2023, announced encouraging results after testing his own research on himself.

Together with Georgina Long, his medical co-director at the Melanoma Institute Australia, Scolyer previously led trials of immunotherapy drugs that stimulate the immune system to recognise and kill cancer cells. That groundbreaking work has dramatically increased survival rates among advanced melanoma patients and last year saw the pair share the prestigious Australian of the Year award.

On learning of his diagnosis, Scolyer and Long decided to apply the science they had developed to his condition. Scolyer, whose treatment included a personalised vaccine tailored to his tumour markers, has so far shown no recurrence. 

While his survival has been cautiously hailed by oncologists as a potentially significant breakthrough, much work remains to be done. The toxicity of the drugs poses a risk in itself, while there is also a danger that the treatment could cause fatal swelling. 

But Andrew, who is desperately trying to contact Scolyer and has calculated that seeking treatment in Australia will cost around £200,000, is determined to leave no stone unturned in the search for a solution that might prolong his time with his family. 

‘There’s been a lot of tears, a lot of closed curtains at the weekend, away from people and sharing moments together, as you can imagine,’ he says. ‘We’re all just trying to stay positive and keep going.’

At the time of writing, a GoFundMe page set up by Andrew has raised just over £37,000 of the £250,000 he has targeted. 

The family have been deeply touched by the generosity of strangers; even in the brief time we spoke, the total crept up by £600. 

‘I understand I’m really lucky and really fortunate,’ says Andrew, once again looking beyond his own plight. ‘There’s people out there, especially in other countries, that aren’t as lucky.’