Mum-of-two Julie Basleigh tells CHRIS HUMPHREYS about how she is carrying on with her life after she was diagnosed with an incurable brain tumour and her efforts to help others in the same position

“I find myself wondering if my family know what sort of funeral I want, looking at songs and readings, I worry about things like that now.”

These are the type of decisions that we all hope never to have to make, but they are now the reality for 38-year-old mum of two Julie Basleigh since she was diagnosed with an incurable brain tumour last year.

Julie’s journey of emotional highs and lows began in November 2014 when she was in her photography studio taking pictures of a client.

She began to lose the ability to speak, her face started to drop, she began to fit and then passed out completely – she was having her first seizure.

“When I woke up the ambulance was there,” said Julie.

“They took me to the hospital to find out what was wrong, they said it was probably a one-off – that I shouldn’t worry about it too much.”

But Julie wasn’t convinced, her father had died from a glioblastoma multiforme, a grade four tumour, so she wanted to find out more.

“I had an MRI scan a week later and I found out I had what looked like a grade one tumour, maybe a grade two.

“Grade one and grade two is considered benign, grade three and grade four is cancer.

“The thing with brain tumours is even if they’re benign, they’ll become malignant at some point – it’s just a matter of when.

“It could be anything from the next day, to 20 years, nobody knows.”

Julie decided to have the tumour removed, she was booked in for awake brain surgery on February 6 2015.

But when she arrived at the hospital on February 5 with her husband Tony, she discovered they had lost her scans.

She was rescanned and that’s when she found out, only hours before her surgery, that the tumour had developed and become cancerous.

The next day Julia had the tumour removed as planned, the operation went well and apart from a few word-finding issues, she could still talk afterwards.

Six weeks of radiotherapy and then six months of chemotherapy followed.

Every scan right through to December last year was clear, she had beaten the tumour.

“We had a good Christmas thinking it was behind us and we didn’t have to worry about things too much,” she said.

“Then on the January 8 I had another seizure. It was a partial seizure where I’m still awake but I can feel my speech going and my face jerking.

“My throat was jerking and I couldn’t feel my hand. It lasted for about half an hour.

“The first thing I thought was oh my god, it’s back.”

Julie naturally feared the worst but the doctors at the hospital told her it could be any number of things related to the healing from the surgery – they likened it to an aftershock after an initial earthquake.

Julie’s own neurosurgeon was slightly more concerned, seizures weren’t a feature of her recovery and he feared something was wrong.

An MRI scan confirmed everyone’s worst fears, the cancerous tumour was back. It was non-curable.

Julie remembers looking at the scans: “The bit that is white is cancer and there was a lot of white – I knew it was a glioblastoma multiforme and if it wasn’t there yet it was going that way fast.

“Considering it was only six weeks since my last clean scan it had grown really big, really fast.”

Julie was determined to fight, she wanted it out and fast – she had another awake brain surgery that weekend, January 31, almost exactly a year since the first operation.

This time the recovery was harder, the doctors had to take out more tissue around the cancer, part of that was in the speech area of the brain.

“When I woke up I could only say yes, no, thank you and a few basic words,” Julie said.

“It’s not just your speech, it’s reading and writing and comprehension as well.

“I’d be struggling to read books to my two-year-old, reading the words and pronouncing them was really difficult.”

For now, Julie’s tumour has gone again.

With another six months of chemotherapy ahead she is continuing to fight, but she knows it is likely only a matter of time.

“The average life expectancy is 14 months, the amount of people who get to two years is only 30 per cent and when you get to five years only 10 per cent of people will be alive,” she said.

“This is non-curable, it will come back, but it’s about what you do in the meantime – it’s about having the most positive mental attitude you can.”

Julie is lucky to have the support of her family around her. Her husband Tony, 46, works from home a lot so he is there much of the time.

For her children – Liberty, 12, and Ava-Rose, just two, life is continuing as normally as it can.

“Ava-Rose is too young and I think Liberty is trying to ignore it,” she said.

“While I look fine and I sound ok I think she’s using that to pretend it isn’t happening.”

“When I found out it was a grade four we had to have the conversation with her, we had to explain that we just don’t when it will happen – it could be six months or it could be ten years I just can’t say.”

“She knows all the facts, I’ve not hidden anything.

“We’ve made a hopes and dreams box, it’s things that we want to do together whether it’s trips to the beach or wanting to go to Disneyland – anything can go in there.”

The next few years remain uncertain for Julie and her family, she will have another scan soon to find out if the treatment is keeping the cancer at bay, at least for now.

“I don’t know what my life expectancy is, at some point I’m going to have to ask and I think that will be really gutting.

“I can ignore it at the moment but when somebody actually says to you it’s going to be one year, or two years, that will be very upsetting.

“In my heart I like to think I’ve beaten it but you know that actually nobody beats it.”

While it may be many people’s instinct to retreat into their own struggle with such a prognosis, Julie is not like many people.

She is dedicating her time to supporting others fighting the same battle and to helping charities funding research.

One of the most tiring aspects of her journey so far was having to commute to Oxford for all her treatment – the consultations, the surgery and even the radiotherapy and chemo.

She worked out that in 30 days she travelled 2,400 miles, spending 90 hours in the car, five hours to find a parking space – all for seven and a half hours treatment.

She said: “There are people who get so fatigued from the treatment that they can’t walk and they have to get themselves to Oxford.

“I was lucky that I had enough people to drive me but some people don’t have that.”

The Brighter Futures campaign to build a new radiotherapy unit at the Great Western Hospital is trying to raise £2.9m to bring vital care closer to home.

It is a cause that Julie has taken time to support, even with everything else she is going through – an emotional video she made of her journey is now sent out to those who sign up to help the campaign.

She said: “Swindon is big enough that having the radiotherapy centre would make such a difference to so many people - it’s such an important appeal.

“I just want to help other people while I still can.”