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Living with a pilocytic astrocytoma – Jerome’s story

Jerome van Leeuwen, age 42, originally from The Netherlands and now living in Fife, Scotland was first diagnosed with a pilocytic astrocytoma brain tumour when he was just two years old, it later returned in his 30s.

In 2014, Jerome van Leeuwen and his wife Wendy moved to Scotland. A decision which was driven by the cleaner air which benefitted Jerome’s health. Living in Fife means that they can enjoy the beauty of Scotland. And also be close to the Edinburgh Cancer Centre which has gamma knife technology in the event Jerome’s tumour does begin to grow again.

Surgeons believed they had removed all of the tumour when Jerome was in infant, until it later returned.

Following another brain surgery, 5-10% of Jerome’s tumour was left behind, attached to his brain stem. He underwent gamma knife surgery on the remainder of the tumour. It currently remains dormant but Jerome is left with the after effects of this devastating diagnosis.

Jerome has to overcome daily challenges

Jerome van Leeuwen, who is wearing noise cancelling headphones, feeds his daughter, Abi
Jerome and his daughter Abi

Living with the effects of a brain tumour has devastating effects on Jerome’s life. Yet he tackles them head on and with good humour.

Some of the biggest challenges Jerome faces are with his motor skills, fatigue and hypersensitivity to sound and movement. He has to think about each step he takes when he is walking as his tumour affects his gait, something he has sought private physiotherapy for. Similarly, he needs to think before picking up hot drinks with his right hand, and consciously reminds himself to use his left. All of these actions contribute to the extreme fatigue Jerome experiences on a daily basis.

Hypersensitivity to sound and movement means that Jerome has to wear noise-cancelling headphones when he is with his two-year old daughter, Abigail, and that he cannot sleep in the same bed as his wife, Wendy.

Jerome says: “Basically everything is a balancing act between the upsides and the downsides when you have a brain tumour. Having a brain tumour is hard, and I don’t think I will ever adjust to it.

“Even if it doesn’t look like it, every little thing costs a huge amount of energy. All of that stacks leaving me exhausted before the day is even half over.”

Lifestyle Coaching Study

Jerome is always keen to explore new options to help improve his quality of life. This is why he took part in a clinical trial at the University of Edinburgh, which was funded by The Brain Tumour Charity.

As part of the study Jerome received both “Health Coaching” and “Activation Coaching”. He said: “Taking part in the study may help someone else too. There is not a lot I can do for others with a brain tumour, but this was something.

“When I joined the study I just thought it would be a bonus if it helped my fatigue. I didn’t go into the study with any real expectations. But it did help me, a lot, so it was a win-win.

“Studies like this help patients like me find more tools to manage something which ultimately can’t be any more than a managed condition.”

Jerome describes his coach as being more than a coach, they were also a cheerleader. They helped him recognise all the things he was achieving in his daily life. Be that walking his rescue dog, Sully, or playing with his daughter.

Jerome said: “It helped that there was an external professional helping me to figure about how to balance the different aspects of my life with keeping active.”


After taking part in the study, Jerome took part in the Pedal for Scotland where he managed to cycle 110km in one day (again).

Cycling has always been an escape for Jerome. To overcome his balance issues he got a trike with a suspension, which takes the balance issues out of the equation. Jerome has raised money doing charity bike rides, and his proudest achievement is climbing Mont Ventoux in France.

Jerome’s trike
Jerome climbing Mont Ventoux, France