Perth dad Bartosz Maroszek’s life changed dramatically this year when he was diagnosed with a brain tumour.
Within weeks of finding out the shocking health news in August, he had to undergo surgery.
And as International Brain Tumour Awareness week begins tomorrow, Bartosz gives us an insight into what it’s like to live with a brain tumour.
He talks candidly about the symptoms he experienced, and the challenges and changes to his life.
It all began for 35-year-old Bartosz at the end of December last year.
He started to experience a change of taste and strange metallic smell.
After visiting his GP, he was prescribed antacid medication for acid reflux.
But he explains, it didn’t help.
He now knows what he was experiencing was what’s known as aura seizures.
“These are controlled mini seizures with sounds fading away, blurred vision, sudden anxiety fears and changes in taste and smell,” he says.
Tonic-clonic seizure
And then, at the end of July 2022, Bartosz had what’s known as a tonic-clonic seizure.
A tonic-clonic seizure, is what most people would think of as typical of an epileptic fit.
It happens in stages where the person loses consciousness, may fall to the floor and is followed by signs including their limbs jerking.
He says: “My then flatmate found me having a seizure. He found me eyes wide open, unresponsive, shaking and having spasms.
“There was blood and saliva coming out of my mouth because I’d bitten my tongue and we think it lasted about 15 minutes – so it was a pretty long one.”
Bartosz was taken to Ninewells where investigations led to the discovery of the brain tumour.
First symptom could have been years ago
He explains: “It was large in size – over 7 cm in length and over 5 cm wide.
“It is hard to say when it started growing, I have no family history of brain tumours, but the oncologist told me my first symptom could’ve been back in 2013.
“I experienced partial loss of sight in my left eye, but was told back then it could be retinal migraine.”
Specialists operated for hours and managed to remove two thirds of the tumour.
They couldn’t remove the rest because it had grown into Bartosz’s brain.
“Unfortunately it’s incurable, but after the surgery I was given a treatment plan to control it and I’ve now started daily radiotherapy.
‘Doctors say I’ve got a good approach’
“I sometimes get a bit of skin irritation and I’m sometimes forgetting things but that’s about all of the side effects I’ve had so far,” he continues.
“And I’ve shaved my head because I’m going to go onto chemotherapy next.
“I’ve been told by my doctors I’ve got a good approach – but what else can I do? Sit around and cry all day?”
Living with a brain tumour
Despite everything he’s been through, Bartosz was advised by the neurosurgeon he could still have some level of independence.
He wears medical wristbands and makes sure if he ventures out he is in crowded places.
But he suffered a recent set back when he had a seizure in Perth when out collecting medication.
He had to get a lift to Perth Royal Infirmary from a friend that day because “increased demand” on ambulances left him lying waiting at the side of the road.
And he says it’s made him anxious and afraid to be alone.
‘I only feel safe in the house’
“Because of what has happened I only feel safe in the house,” he admits.
“I’ve been out for shopping three times in the evening with a friend or neighbour when there’s no people around, but even that is too stressful.
“I went for a walk where I live recently with a friend and I felt I was too far away from home.
“I’ve even requested a two person transport so I’m not alone in the ambulance when I travel to Dundee for treatment.”
His parents have moved over from Poland so he is not alone.
‘I take each day as it comes’
He says the ongoing worry about how he will cope financially is also taking a toll.
As well as wanting to support his two sons, he has started seeing a private oncology therapist and is looking into alternative treatments alongside his current treatment.
He’s now on statutory sick pay and awaiting word on benefits he maybe entitled to.
“It’s not been easy. If it wasn’t for the help I get from people, I would be struggling.
“But for now I take each day as they come and I appreciate being able to open eyes every morning or fall asleep not being anxious.”
- More information about support is available from The Brain Tumour Charity. Local brain tumour support group details can be found here.
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