In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Software sales manager David Kingston was diagnosed with a low grade brain tumour nine years ago. He underwent surgery and follow-up treatment and now faces more chemotherapy after his tumour began to regrow, this time designated as high grade. He is married with two chlidren and endured the loss of his 20-year-old daughter to the genetic condition cystic fibrosis four years ago.
“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. My wife has been incredible, having always been by my side. Thanks to her, and the amazing group of friends we have, it is overwhelming to feel their constant love and support. With the introduction of social media, one of the sweetest things is when someone gets in touch after 25 years and wants to know how I am coping.”
David tells his story:
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.
It is a bitter pill to swallow but life goes on. I regard myself lucky that I have great support from my wife Kim, our beautiful children – Charlie and Jessica, our families, friends and work colleagues. When I was first diagnosed we were told the tumour could come back although there was no way of telling when; it could be a matter of weeks or, equally, I might have ten happy years or more ahead of me.
Within weeks of my initial diagnosis in 2008, I underwent surgery in Southampton. It was successful in removing virtually all of the tumour. Over the coming years, chemotherapy was followed by radiotherapy which, without doubt, was the worst experience of my life. 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 to 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.
When I was first diagnosed in 2008, I was working for a software company in Cambridge. I returned to work soon after my operation, but as I could not drive my return to work wasn’t dealt with compassionately and I was made redundant soon after. The company I work for today is a completely different story. For the last eight years my managing director, and now good friend, has always shown his full support for me and my family, going out of his way to ensure that my role in the company has always been secure. As I can no longer drive, my journey to work is quite difficult as my journey to the office has not been straightforward, but I am given to opportunity to work from home should I wish. I am lucky to work for such a supportive company whose backing I know will help me through what lies ahead.
One of the legacies of my previous treatment is that I live with ongoing, unbearable pain in my legs – a condition called neuropathy. The only way I can cope is by walking and I regularly cover 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.
I never spend time worrying about myself but I do worry about my family. The hardest thing is thinking about Kim and the children, Jessica who is 11 and Charlie, eight, and what will happen to them without me being here to pick up the pieces.
Sadly, I know only too well the pain of loss as my beautiful daughter Emma passed away in July 2013 from the genetic condition cystic fibrosis. 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.
We’ve always been honest with Jessica and Charlie, they know I have a brain tumour and that I’m going to have more treatment. 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. My wife is an incredible social butterfly and, thanks to her, we have many friends. It is overwhelming to feel their love and support and 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 and, in that way, I try not to spend time worrying about the unknown.
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.
If you have been inspired by David’s story and would like to make a donation to Brain Tumour Research please go to https://www.braintumourresearch.org/donation/donate-now or leave a gift in your will via https://www.braintumourresearch.org/legacy
Together we will find a cure.
The views or opinions expressed within are not necessarily those of Brain Tumour Research. This content has been shared for information purposes only. Brain Tumour Research does not recommend or endorse any particular treatment. If you have or suspect you may have a health problem, you should consult your doctor or other suitably qualified medical professional. Our member charity brainstrust can provide additional information on treatment options.