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Simon’s diagnosis story

The mum of a teenager who had two brain tumours was told her son’s symptoms could be because he was taking illegal drugs.

Simon Reeves, now 27, from Macclesfield felt unwell and was struggling with his balance after going on a family bike ride in July 2013. He had fallen off twice during the ride and had struggled to keep the bike upright during the journey.

He headed home earlier than planned and his mum took him to see the GP later that day. The GP couldn’t find anything wrong but Simon and his mum were sent to A&E at Macclesfield Hospital by the GP to check his balance. The doctors took urine and blood samples and told Simon’s mum that he could be on illegal drugs, which she rapidly dismissed.

The medical team also carried out a CT scan and it was the results of this scan which marked the beginning of Simon’s rollercoaster ride.

Simon said: “Within 20 minutes of having the scan, the hospital were arranging for me to be transferred to Salford Royal Hospital and we were told the unbelievable news that I had a brain tumour.

“Everything moved really fast and I was so scared. My mum was trying her best not to upset me but I knew things were not good and that I was really sick.”

Further tests at the Salford Royal Hospital confirmed that Simon had two large brain tumours – one on each side – which were sitting on his balance nerves. The doctor suspected and it was later confirmed that this was due to a condition called NF2 Syndrome. This causes tumours to grow along the nerves which look after hearing and balance.

Simon was allowed home for the weekend and returned to hospital three days later to have an operation to remove the tumour on the right-hand side. The tumour on the left hand side had to be left due to concerns that removing it could leave Simon deaf and further cause problems with his balance. The ten-hour operation successfully removed all of the tumour on the right hand side of Simon’s brain.

Simon said: “That weekend back at home before the operation went so quickly before I had to get ready for the operation which I knew would change my life forever. I told my mum “please don’t let me die”. There had been no signs about NF2 Syndrome before all this happened so it was such a big shock to me and my family.

“The days following the operation are a bit blurry. I was too scared to look at myself. I tried walking a couple of days after the operation and I kept stumbling but I was determined I would do it so that I could go home. I was discharged five days after the surgery and it was so good to be outside and back in the fresh air.

“But, when I got home, I started to feel very depressed. I didn’t want to go outside again and I didn’t want anyone to know what was wrong with me. I started keeping myself to myself and I no longer felt safe on my own, I found it hard working out where sounds were coming from and I found even the simplest of tasks hard to do.”

Prior to his diagnosis, Simon had been studying animal care and farming at college. However, following his treatment, he found the course too difficult to manage alongside his condition and the impact it had on him so he had to leave.

Simon’s mum decided that they should take a family holiday to Shropshire so they could get away from it all for a little while.

But, on the morning of their departure, liquid began dripping from Simon’s wound and he was blue-lighted from Macclesfield Hospital back to Salford Royal Hospital. He had a CSF leak, which is when the fluid which acts as a cushion to protect the brain escapes and there is an increased chance of his happening following brain surgery due to the incisions required.

The wound had become infected so Simon needed further surgery to reopen and clean it. He also had a lumbar drain fitted and had to stay as still as possible in bed for over a week in hospital. Simon and his mum did manage to take the belated trip when he was discharged from hospital.

Over the following fortnight back home, Simon had a midline fitted and a district nurse visited him twice a day to give him IV antibiotics. Even after all this, Simon’s ordeal was far from over. Six months later, he went back to hospital for an MRI scan, hearing and balance tests and he was told the devastating news that the remaining tumour on the left hand side of his brain had grown.

Simon was put on medication to stop the tumour on the left-hand side of his brain from growing by stopping its blood supply. The medication, Avastin, was given via an IV for an hour every two weeks for six months and then every four weeks at the Christie Hospital in Manchester. However, Simon’s veins were suffering due to the medication so he has now had an internal port fitted.

Simon said: “The treatment made me very tired – I would come home and sleep the days away. But, it had been working well for me. It did shrink but then it started growing again so every time I have an MRI scan I feel sick waiting to find out what’s happening this time.

“Nothing in my life is the same as it was before that bike ride that day. I don’t ever go out on my own, I have lost all of my confidence and I don’t know how I would manage without my mum.

“My condition makes me so tired, I find it hard to concentrate on anything for more than a few minutes. I have tried cycling again but it is so hard to keep my balance. I wish I could turn back the clock and have my old life back again.”

Simon and his mum have been fundraising for the Christie Hospital in Manchester where he continues to have his Avastin treatment every month.

They both did a fire walk in 2016 which raised over £1,000 and last year he did a zipslide event which raised more than £600. He hopes to do more fundraising as and when the ongoing pandemic allows it and £500 has already been pledged for it.

Simon added: “It’s just our way of giving back all the thanks for the constant care that they provide for me.”