Craig from Surrey was diagnosed with an oligodendroglioma in 2001 after severe headaches and problems with his speech. He was just 33. At the time, he was living in France with a young family. The diffuse nature of the tumour made it inoperable. Chemotherapy had no effect and he developed complications during radiotherapy. Exhausting all treatment options in France, the family looked at clinical trials abroad, however Craig did not meet the criteria. The father-of-two died on 26 November 2003. Two decades on, Craig’s family are taking on a mountain of challenges to help find a cure for the disease.
Here is Craig’s story, as told by his widow, Jo…
It’s been 20 years since Craig died. He was just 35. It’s hard to believe that in those two decades, research into brain tumours is still lower than investment into other cancers.
He was my husband, a dad to our two beautiful children Holly and Alex, a son, an identical twin, and younger brother an uncle and a friend to many.
Craig’s symptoms started when we were living in France. We met at work in Berkshire where we became friends before we began dating. We hadn’t been dating for long when he had the opportunity to work overseas. We took the leap together and never looked back.
One evening he got home from work after stopping to pick up Alex from creche. Craig came to talk to me and couldn’t find his words. He wasn’t making any sense and seemed to be describing what was above our fireplace. His face appeared as if it had dropped one side. I thought he was having a stroke. I rang my friend who came to be with the children who were four and two at the time.
In the time we waited to be seen at hospital, Craig began to talk and walk normally. However, his usual polite and eloquent personality changed. When someone spoke to him, he was very abrupt in his reply.
We mentioned that Craig had seen the GP about headaches, which we thought could be down to his job which involved lots of travelling. Shortly after he had a scan, we got the most devastating results.
They told us that Craig had a brain tumour, large in size, they didn’t understand how he was still functioning with it.
He had a biopsy and his tumour was described as having lots of little legs. Craig was diagnosed with an oligodendroglioma, the legs, or diffuse parts had characteristics of astrocytoma. After this, he suffered a grand-mal seizure which was so violent it caused his shoulder to dislocate and he bit down hard on his tongue ending up with a fractured collarbone. From the waist up he was in a cast which they had to remove to get him in the MRI scanner.
It seemed to be a complex tumour. Despite this, doctors thought it would respond well to chemotherapy and the stats around this were all positive. However, for Craig this treatment didn’t work. He was given a different chemo to try, this time in tablet form.
Over the next six months, his condition deteriorated. He began to have seizures where he struggled to find his words. He was always so chatty, he had to be for his job in marketing and sales, but the tumour had now forced him to communicate through cards with words and phrases written on them.
He lost mobility on one side, but treatment continued; introducing radiotherapy which he had daily. One day his breathing was laboured and he was generally poorly. The GP visited and suggested an ECG as he could have a clot or blockage somewhere. They discovered a pulmonary embolism (PE) in his lungs. He went to hospital but doctors were worried that treating the PE would cause a bleed on his brain.
I was told he wouldn’t make it through the night.
They managed to fit stents in his neck and he regained some mobility and could communicate verbally once again. He had a better quality of life where as before, he was trapped in a body that couldn’t move.
One day everything came back with a vengeance. It began with Craig’s foot dragging along the floor. Once again, he lost his mobility, from walking with an aid, he needed a wheelchair. His speech was compromised, and the doctor told us to enjoy the time we had. That was the first time anyone had hinted at any kind of timescale that we had left.
Craig died on 26 November 2003.
Two years after Craig's diagnosis he lost his hard fought battle at the age of 35. Our hearts were broken.
Now you see so many more stories about children and young adults, under a certain age. Why is it still like this?
It's taken me this long to feel ready to do something in his memory and as a family we have lots planned, leading up to The Three Peaks Challenge in May 2024
At the time it was a case of surviving with two young children. They’ve been deeply affected by this disease. My children have grown up without a dad and no or very little memory of him.
Jo Ainslie
November 2023
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.
If you have been touched by Craig’s story, you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure