I was 37, fit and healthy when I suffered a niggling headache that wouldn’t go away. Then I received devastating news I never saw coming

Jeff Curnow thought little of the headaches he endured for months.

The ‘fit and healthy’ dad, from NSW, was living a seemingly normal and active life when he noticed his persistent aches weren’t getting better with pain relief.

After a few months of ‘putting up’ with throbbing pain, the professional painter decided to see a doctor, assuming something was wrong with his neck.

‘The GP ordered an MRI to check for anything unusual… I had no idea of what was to come,’ Jeff told Daily Mail.

A week later, he discovered his headaches were actually a sign of brain cancer.

‘We were asked to come in for results and we got the news… The doctor said, “Unfortunately we found a mass in the middle of your brain, you need to pack your bags and go to the hospital right now”,’ Jeff recalled. 

‘I walked out to my partner… and dazedly explained that I had a brain tumour, I felt sick, scared and my partner kept saying, “Is this a joke?”‘

Before his soul-crushing diagnosis, Jeff – who enjoys fishing, surfing and spearfishing – never saw a doctor because he believed he was healthy.

But when the headaches wouldn’t go away, he knew he needed to get checked.

After getting an MRI in the midst of COVID in 2020, his results confirmed he had an extremely rare brain tumour at the age of 37.

‘We received shocking news that I had an extremely rare – less than 0.1 per cent of all brain tumours – diagnosis, a papillary tumour of the pineal gland,’ he said. 

‘There are only 200 to 300 cases worldwide.’

Fortunately for the family man, the surgeries were successful.

‘The first was to biopsy the mass and place a shunt as I had developed hydrocephalus due to the fluid buildup around the brain that was causing the severe headaches,’ he said. 

‘Then we proceeded to a second surgery to remove the tumour.’ 

Living with a rare brain tumour has changed everything for Jeff.

‘I have had scans every three to six months for five years straight to check it hasn’t grown back. As a result of the two brain surgeries, I have developed epilepsy from the surgical scarring,’ he said. 

The brain condition has led to him losing his driver’s license for 12 months at a time due to seizures, along with his confidence and income whenever he’s unable to work.

‘I was even placed under general anaesthetic for over 24 hours at one point because my seizures got so bad. I have struggled to stay positive at times throughout this journey,’ the dad explained.

‘We never realised how debilitating living with epilepsy is, and we now fully appreciate how challenging it is to live, drive and maintain consistent employment. There is very little government support for epileptics, particularly if you don’t fall into the “severe” or refractory category.’

Despite being given the all-clear, the dad said the biggest challenge is living with the ‘fear’ that his cancer may return.

‘I have managed to cope by leaning on family and friends for support, keeping myself active and busy and trying to remember to live each day,’ he explained. 

‘I am very blessed to have watched my three-and-a-half-year-old son Jack grow and have a wonderful support dog Winnie, along with my fiancé Elise who keeps me strong.’

It has been more than five years since his diagnosis.  

‘I can happily say in all my routine scans the cancer has not returned,’ he shared.

‘My original neurosurgeon did wonders and my oncologist said he must have done a good job. However, I do now have epilepsy for the rest of my life and will never be able to stop taking medication.’

As life was starting to look up again, the dad was hit with another devastating blow.

He had booked a long-planned fishing trip to Vanuatu that cost him $10,000. But the night before he was due to fly out, he suffered multiple seizures – the first he experienced in two years. 

‘I recently suffered a grand mal seizure the night before the long-awaited fishing trip in Vanuatu. I was unable to make it as I was in hospital,’ Jeff explained. 

‘I lost everything for this trip, thousands of dollars due to travel insurance not covering anything.’

When he tried to get a refund or a credit voucher, he was unable to get his money back due to his brain cancer being classed as a pre-existing condition.  

His friends Ben and Amy have created a GoFundMe to help Jeff get through financially after he lost $10,000 from the trip he was medically unable to go on.

‘Jeff has never had any financial assistance for loss of income, medical appointments, or the long-term impact of living with cancer,’ the friends said. 

‘He would never ask for help himself. This fundraiser exists because we love this family and simply couldn’t watch them absorb yet another unfair blow. This is not about sympathy.

‘This is about helping a good, hard-working family recoup the cost of a break that was cruelly denied and easing the pressure during what will be another incredibly challenging year. 

‘Every bit of support helps remind Jeff and Elise that they are not alone and that kindness still exists when life feels relentlessly unfair.’

Reflecting on his journey, the dad said if he could do anything differently, he would have seen his GP sooner about his persistent headaches.  

‘Don’t ignore unusual headaches, see your doctor and get advice,’ he said. 

‘Cancer is s***, but I hope my story can show people that there is hope to survive this cruel disease, and that I pray for the people suffering from incurable brain cancer that we find a cure. 

‘Hang in there, there are often more people who care about you than you realise.’

Jeff, now 42, urges everyone to support the Mark Hughes Foundation by buying a beanie, with proceeds funding the much-needed brain cancer research.

‘We like to call ourselves, the “luckiest unlucky people”,’ he said.

‘While I have been diagnosed with an incredibly rare cancer, I am here to tell the tale and hopefully give hope to others.’