A Stone man who lost his beloved younger brother to a brain tumour is today sharing his tragic story in order to highlight the “chronic” underfunding of the disease.
Simon Turton was a fit and healthy man, engaged to be married, and the father of a young daughter, Livy, when he was diagnosed with a low grade brain tumour after suffering a seizure at a friend’s wedding.
Over the following 18 months Simon had regular check-ups but for some reason was not invited to come in for MRI scans to check on the tumour in the centre of his brain. When he finally had an MRI scan, it was found to have become cancerous. Simon passed away the following month, aged 36, before he had even started radiotherapy treatment.
Today, for the first time, Dave is telling Simon’s story. Dave is working with the national charity Brain Tumour Research to highlight the fact that brain tumours kill more children and adults under the age of 40 than any other cancer yet just 1% of the national spend on cancer research has been allocated to this devastating disease. He has chosen to speak out during March, Brain Tumour Awareness Month, and is urging people to take part in the UK-wide fundraising event, Wear A Hat Day on Friday 31 March.
Now in its eighth year, Wear A Hat Day is supported by Debbie McGee, who lost husband Paul Daniels to a brain tumour a year ago, celebrated milliner Stephen Jones OBE who cared for a terminally ill friend, actress and broadcaster Sheila Hancock CBE whose grandson was successfully treated, and singer, songwriter and record producer John Newman who is awaiting treatment for his second brain tumour.
Dave, of Lichfield Road, Stone, said:
“It was in March 2011 that Simon’s consultant questioned the lack of scans over the previous year or so and booked him in straight away for an MRI. This scan revealed that the tumour had grown significantly and Simon was immediately scheduled for a biopsy. I was very concerned that Simon had been left for so long without any monitoring and had trusted this was all in order with Simon’s regular appointments at the hospital. I had tried to remain positive for Simon, whilst believing that the Queen Elizabeth Hospital were doing everything they could for my brother.
“I started doing some research into biopsies and was concerned about this intervention, but in the end we were guided by the experts. The results of the biopsy confirmed that Simon’s tumour was now grade 3. It was the first time the term ‘cancer’ was used, which was a big shock to us all as until this point we thought it could still be low grade.
“We went home and it hit Simon what the full situation was. I remember him looking to the sky and shouting: “I’ve got cancer.” This was the only show of emotion I can really remember as I think he was trying to protect Mum and all of us from reality.”
“On the Easter Bank Holiday Monday in 2011, Simon was at a barbecue when he started to feel very ill. An ambulance was called and he was taken to hospital. By the following morning, he had become un-responsive, having suffered a sudden cerebral swelling. At 10.50am Simon passed away.
“After we lost Simon, we went to see his consultant to talk through our questions and he admitted that from the scanning perspective there had been a mix-up in the paperwork which meant that the next scan wasn’t triggered automatically. He said he would see that procedures were put in place so that this couldn’t happen again, but this was obviously too late for Simon.
“We received a letter of apology from University Hospitals Birmingham, which was disappointing. I’m aware that the radiotherapy treatment could have left him in quite a disabled state and as the consultant explained, the outcome for Simon may have been the same even with earlier treatment, given the type of tumour and its position. I had to tell myself that with the type of tumour that Simon had, there was never going to be a good outcome, so maybe it was for the best we didn’t have to see him suffer and that the end came quickly.
“The options were so limited for Simon – he couldn’t even have surgery to remove the tumour because of its position in the centre of his brain – which is why I am working with Brain Tumour Research to raise awareness. It’s too late for Simon, but other families with loved ones diagnosed with brain tumours need to have the comfort that more effective treatments have been identified and ultimately a cure found for this devastating disease.
“I cannot stand by without doing all I can to change this chronic underfunding. Even though it’s too late for him, I want Simon’s legacy to help find a cure for this deadly disease and I don’t want his name to be forgotten.”
Dave and his brother Paul have raised thousands of pounds for Brain Tumour Research over the years since they lost Simon, including holding music festivals in Cornwall where Paul is based and by running the London Marathon two years ago.
Dave is campaigning to raise awareness of brain tumours and, along with Brain Tumour Research, he is lobbying the government and larger cancer charities to see the national spend increased to £30m – £35m a year, in line with other cancers such as breast and leukaemia.
Wear A Hat Day will see schools, workplaces, families and individuals across the UK fundraising and taking part in all manner of hat-themed fun events to raise awareness of brain tumours and help fund life-saving research. Funds raised through 2017’s event will develop the charity’s network of world-class brain tumour research centres in the UK.
If you have been inspired to donate go to https://www.justgiving.com/fundraising/SimonsStory
To get involved with Wear A Hat Day, please visit: www.wearahatday.org
Or text HAT to 70660 to donate £5
Texts cost £5 plus network charge. Brain Tumour Research receives 100% of your donation. Obtain bill payer’s permission. Customer care 01908 867200. Charity no. 1153487 (England & Wales) SC046840 (Scotland).