Leslie Dutton, a builder from Ealing, West London, was suspected of having Alzheimer’s or Parkinsons when he was diagnosed with a glioblastoma (GBM) in January 2009. The father-of-two underwent surgery, radiotherapy and chemotherapy but died in hospital in August 2009, just four days before his 64th birthday.
Here is Leslie’s story, as told by his daughter Grace …
My dad was more than a father to me, he was my best friend. He was amazing in every way and would do anything for anyone. He was a builder by trade and worked from the age of 14 up until getting ill at 63. He died four days before his 64th birthday.
“It happened so quickly and was so traumatic that it has taken me 14 years to begin to come to terms with it.”
Dad started acting out of sorts in the summer of 2008. I had to ask a friend to rescue him after he called to tell me he had got lost in the car on a routine errand. He also started putting empty sweet wrappers in drawers and I remember having to drag him out of a road after finding him standing in the middle of it with a lorry coming towards him. It was like he hadn’t seen it or couldn’t register how quickly the vehicle was travelling.
“I took him to the GP who told me he could be suffering from Alzheimer’s or Parkinsons.”
In January 2009 I took Dad to the optician and he was in there for more than four hours. I think he was struggling to process anything but, when I asked why it was taking so long, I was told patient confidentiality meant no one could discuss him with me. I ended up taking Dad back to the GP after he stopped being able to write cheques. He was like a child scribbling with a crayon and the bank wouldn’t cash them. Again, I was told he could have Alzheimer’s or Parkinsons but he wasn’t referred for any tests or scans.
Eventually, I got so frustrated with the situation that I drove Dad to Wales where his friend, a consultant radiologist, lived. Dad had been complaining of back pain and I offered to pay for a full-body MRI scan but Mum said she was sure the problem was in his head because he was acting so strangely and it had escalated so quickly. As soon as the scan was carried out, I got a call telling me Dad had the worst type of brain tumour possible and that it was fast growing. I asked how long he had and couldn’t believe it when I was told no more than six months.
“I was in a state of utter shock and disbelief and cried for days.”
Dad was put on steroids to reduce the swelling in his brain and within three days he was back to his normal self. However, just a few days later, he changed and became angry, bad-tempered and aggressive. He was extremely confused and didn’t know what he was doing or who he was. A couple of weeks later he was taken into St George’s Hospital, in Tooting, for surgery. Unfortunately, only half of his tumour could be removed because the rest was lodged so deeply in his brain. We were told that taking more out would almost certainly have paralysed him and might only have extended his life by a couple of months.
“Sadly, after his surgery, Dad was even more damaged than before.”
He could still communicate but he had no idea what was going on. All his scans and blood tests took place in the same hospital but he never knew where anything was. We were told this could have been caused by interference with a nerve in his head during the op.
“Dad went on to have six weeks of radiotherapy but did not tolerate it well.”
He got blisters in his mouth, was sick and his hair fell out. He was also put on oral chemotherapy for six months, which required him to take different-coloured pills at breakfast, lunch and dinner. He was unable to lift a kettle of cold water without spilling it and was completely unaware of time, so I failed to understand how he could be entrusted to go home and take his medication correctly. It was all very stressful.
“He became really hard work towards the end and so unpredictable that we didn’t know what he was going to do from one moment to the next.”
He would attack Mum, which was entirely out of character, and got very angry when we took his car keys away and wouldn’t let him drive, screaming and throwing things in protest. I found out I had a low-grade bladder tumour whilst he was ill and had to hide the fact I was going into hospital to have it removed, which was really hard considering I had always shared everything with him.
Dad suffered a seizure in July 2009 and was still shaking violently when the ambulance crew turned up. As he was drifting in and out of consciousness, he was taken to Ealing Hospital where he was admitted to a general ward. After three days he was moved to a high dependency unit and then to critical care where he was kept on life support for four weeks. When we visited, we had to wear aprons and gloves because he had MRSA and C-diff.
“Eventually, in August 2009, after a month of showing no signs of life, Mum made the difficult decision to turn off his life support.”
The whole experience was horrendous from start to finish. Watching Dad change from a friendly, caring, warm and loving person into an aggressive and unpredictable one was really scary. His personality change was so dramatic that I scarcely recognised him by the end. It was without doubt the worst six months of my life and has taken me more than a decade to pluck up the courage to start fundraising for Brain Tumour Research.
“No other family should be forced to endure the horror that we did.”
To try and prevent this, I’ve been turning trash into cash. There’s an area near me which is prone to fly tipping and I’ve been collecting bits of furniture, things like wardrobes, tables, chairs, photo frames and chests of drawers, and transforming them to sell in aid of the charity. Being a builder’s daughter gave me the confidence and I’ve already made £590.
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they 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 since records began in 2002.
Brain Tumour Research is determined to change this.
Together we will find a cure