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I’ve had 14 years of chemo, and never felt better

At the age of 17 Jonathan Jones was told he would only survive another two weeks without urgent surgery after doctors discovered a brain tumour the size of an orange.

But now, 14 years later, and father to a six-month old son, Jonathan, 32, is loving life despite continuing on a gruelling schedule of chemotherapy.

In 2007 Jonathan, who lives in Solihull, was diagnosed with a grade 3 oligodendroglioma, an incredibly aggressive brain tumour, on his left temporal lobe.

The discovery of the large tumour was made by University Hospitals Coventry and Warwickshire (UHCW) NHS Trust, following an eye examination. During the examination an MRI scan immediately was ordered, which took place an hour later.

Jonathan and his family were left heart-broken at the results - if left untreated Jonathan would not have survived more than two weeks.

Surgery was booked for the following day, where the whole tumour, the size of an orange, was removed from Jonathon’s brain by Professor Amjad Shad.

Following the surgery Professor Ian Brown, consultant oncologist at UHCW, prescribed Jonathan with chemotherapy and a six week course of radiotherapy. Jonathan has been on chemotherapy ever since, attending the Arden Centre at UHCW every six weeks.

Brain scans over the last 14 years have returned stable results.

Jonathan said: “The operation was very long and my family were in pieces as you can imagine. When the surgeon told my family that it was the best outcome possible, everyone was relieved.

“Following the surgery I made good progress but my balance was seriously affected so I was in a wheel chair for a while whilst at the hospital. The care was absolutely incredible, they saved my life and I’m so thankful to everyone, especially Professor Shad, Professor Brown and Ian Edwards, who were amazing.

“I had a great support network around me, my family and friends were a great motivation for me to get better. They were all so supportive, and continue to be, and I am extremely grateful to have had them in my days of need. They really have been incredible.”

Before his life-saving surgery Jonathan had been unaware that he had a brain tumour. In the six years before his diagnosis his behaviour had been extremely challenging, getting him expelled from schools and in trouble with the police.

His mother took Jonathon to several counsellors and private hospitals in search of answers. He was prescribed ADHD medication, but when that failed the family took drastic action and asked for him to be sectioned, which again provided no answers.

When Jonathan’s behaviour started to improve he was treated to a holiday in Hong Kong with a friend’s family, which turned out to be a major turning point.

During the holiday he suffered terrible headaches, which Jonathan had put down to jet-lag and alcohol.

When he returned home Jonathan was still struggling, but was determined to go on another holiday to Newquay with his friends after leaving Arden secondary school, in Knowle.

He said: “Ironically the alcohol was the best thing I could do for my symptoms, as it was dehydrating me and reducing the swelling in my brain. Whilst I was in Newquay things went from bad to worse though and I had to be driven home by a friend.

“That was the last time I was able to get out of bed. Doctors initially thought that I had a viral infection, but things never got better and my family were frantic. Eventually my mum managed to get me an appointment at UHCW, which ultimately saved my life.

“Despite the journey I’ve been on and having to go through more than 170 rounds of chemotherapy, I’ve never felt better. I feel as fit as a fiddle and am really enjoying life as a new dad.”

When Jonathan was diagnosed he made the decision to freeze his sperm, fearing the chemotherapy would severely disrupt his chances of a fathering a child naturally.

Jonathan and his girlfriend Danielle were desperate to start a family so started looking into IVF treatment. They had the frozen sperm tested, but while they were waiting for the results found out that Danielle was pregnant naturally.

They welcomed their son JJ in the world six months ago.

“My life, albeit the chemo, is perfect,” he added. “I have a wonderful son, beautiful girlfriend and have set up a business designing clothes to help raise awareness of brain tumours, which also donates to the Brain Tumour Trust.

“If anyone reads this and is worried about headaches or their behaviour I would strongly encourage them to speak to their doctors. My tumour was found very late and could have fatal consequences, I’m very lucky to still be here.”

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