For the past nine years, longer than his son Charlie has been alive, David Kingston has lived with a brain tumour.
It’s big and it’s incurable, and time and treatment options are running out for him.
But don’t for a moment think the 46-year-old software specialist sits around feeling sorry for himself.
Even though he knows a cure might come too late for him, he is working with the national charity Brain Tumour Research to support world-leading research at their laboratory in Portsmouth to help other people in his position.
David, from Southsea, who is dad to Jess, 12, and Charlie, eight, says: ‘My brain tumour first introduced itself by causing me to have a seizure while I was in a sales meeting at work.
‘I was checked out at A&E, diagnosed with epilepsy and told I would never drive again.
‘In a matter of hours my life had changed for good. Nine years later, I have just been told that the tumour, which started as low grade, has shown signs of malignant transformation and is now regarded as high grade and cancerous.
‘I’m back on chemo and it’s tough.
‘It is a bitter pill to swallow but life goes on.
‘I regard myself as lucky that I have great support from my wife Kim and our beautiful children, our families, friends and work colleagues.’
When David was first diagnosed he was told the tumour could come back, although there was no way of telling when; it could be a matter of weeks or years.
Surgery in 2008 was successful in removing most of the tumour.
Over the coming years, chemotherapy was followed by radiotherapy which David describes as the worst experience of his life.
He says: ‘It was extremely distressing to have my face covered by a mask which was bolted down onto the table and all I could do was listen to the terrible noise as the machine delivered the radiation.
‘I found it so traumatic that, for weeks afterwards, I suffered night terrors and panic attacks to the extent that I couldn’t stay at home on my own when it was dark.
‘Somehow, I managed to get through radiotherapy every weekday for six weeks. I was left with strange patches of baldness where the radiation entered my head on one side and exited on the other.’
One of the legacies of David’s treatment is he lives with ongoing, unbearable pain in his legs – a condition called neuropathy.
The only way he can cope is by walking and he regularly covers 70 miles a week, occasionally upwards of 100 miles.
‘I love being out in the fresh air, listening to music and find it good for my mental health as well as my physical wellbeing,’ says David.
‘I never spend time worrying about myself but I do worry about my family.
‘The hardest thing is thinking about Kim and the children and what will happen to them without me being here to pick up the pieces.’
Sadly David’s tumour is not the first tragedy to strike the family.
In July 2013, his daughter Emma died from the genetic condition cystic fibrosis.
He says: ‘She was just 20. We had been to the Isle of Wight Festival together and had a wonderful weekend.
‘When we got home she came down with an infection and passed away.’
David and Kim believe it’s vital to be honest with Jess and Charlie.
They know that, once again, their dad is going through treatment.
But he says: ‘I am determined to remain positive and consider that at least my back-story would get me fast-tracked to boot camp on the X Factor!
‘This is my life, this is the hand I have been dealt and I have to get on and live it as best I can.
‘I am determined not to let my illness define me or rule my life.’
David describes Kim as ‘ an incredible social butterfly’ which has meant they have a wide circle of friends who are always ready to support them when they need them.
‘It is overwhelming to feel their love and support,’ says David.
‘One of the sweetest things is when someone gets in touch after 25 years and wants to know how I am doing.
‘I approach the results of each scan with a level of apprehension.
‘I am resigned to the fact there is a fight ahead but my view is that I can’t deal with it until I know exactly what I have to deal with and, in that way, I try not to spend time worrying about the unknown.’
David is supporting Brain Tumour Research’s Wear a Hat Day on March 29.
To get involved, or to donate, go to wearahatday.org or text HAT to 70660 to donate £5.
WHAT IS BRAIN TUMOUR RESEARCH?
Brain Tumour Research is the only national charity in the UK focused on funding sustainable research to find a cure for brain tumours.
The charity has established a game-changing network of world-class Research Centres of Excellence in the UK.
More than £6m was raised towards research and support during 2017.
The organisation is campaigning to see the national spend on research into brain tumours increased to £30 - £35m, in line with breast cancer and leukaemia.
In 2015 a petition led to the 2016 Westminster Hall debate and Brain Tumour Research taking a leading role in the government’s Task and Finish Working Group convened to tackle the historic under-funding for research with the report being published in 2018.
n Brain tumours kill more children and adults under the age of 40 than any other cancer.
n They kill more children than leukaemia, more men under 45 than prostate cancer, and more women under 35 than breast cancer.
n Just one per cent of the national spend on cancer research has been allocated to the disease.
n In the UK 16,000 people each year are diagnosed with a brain tumour. n Less than 20 per cent of those diagnosed survive beyond five years
compared with an average of 50 per cent across all cancers.
n Brain tumours are indiscriminate and they can affect anyone at any age.
n Incidences of, and deaths from, brain tumours are increasing.