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In Our Hearts Stories

Less than 20% of those diagnosed with a brain tumour survive beyond five years

Oliver Cooper-Grace

Oliver Cooper-Grace, 23, from Liverpool, started to suffer from headaches and nausea in May 2021. He was told he had cluster headaches but, one month later, he went to hospital after being sick through the night. An MRI scan revealed a mass, and he was later diagnosed with a grade 3 anaplastic astrocytoma brain tumour. Oliver endured two operations, chemotherapy and radiotherapy. His tumour continued to grow but he was told he could have no further surgery and no alternative treatments were available through the NHS. His family started crowdfunding to raise £50,000 for pioneering private treatment abroad, after exhausting all options with the NHS, but Oliver’s condition deteriorated. He died at home on 9 February 2023 with his loving family by his side.

Oliver’s mum Sharon Cooper tells his story…

In May 2021, Oliver started getting strong headaches and he was feeling really nauseous which was unusual for him.

This was all during COVID so he could only have a GP appointment over the phone. He was told he had a viral infection and told to take paracetamol for his sinuses.

Oliver wasn’t getting any better, so he contacted a walk-in centre and his GP again; he was to be treated for cluster headaches.

On 8 June, Oliver was sick during the night. He called NHS 111 and was told to go to hospital, so he went to Accident and Emergency at Aintree University Hospital in the early hours of the morning.

He had an MRI scan; the doctors told us there was a mass on his brain which could be cancerous and there was a lot of swelling.

“Our world suddenly changed; Oliver was healthy, he liked going out with his friends and watching Everton. We just weren’t expecting something like this.”

Oliver was told if he didn’t undergo surgery, he would be in a coma within a few days, so he was transferred to the Walton Centre that night.

Oliver underwent surgery and 70% of the tumour was removed. Before the procedure, he had been told there was a risk that surgery could affect his speech and mobility, so we were so happy to hear him speaking normally when he woke up.

The biopsy from the operation showed Oliver had a grade 3 anaplastic astrocytoma brain tumour.

He had two months of radiotherapy at the Clatterbridge Cancer Centre in Liverpool. Following this, Oliver had three months of chemotherapy which left him feeling so tired. He also lost a lot of weight.

“In December, Oliver had an MRI scan which showed the tumour had grown. That was horrible to hear after all of the effort that was put in to stop it.”

On 15 January 2022, surgeons managed to remove a further 20% of the tumour during an awake craniotomy. The remaining 10% could not be taken because it was so close to his optic nerves.

“Oliver had more radiotherapy and chemotherapy but an MRI scan in July showed the tumour had grown again. He was also told that further surgery was not an option because of the tumour’s sensitive location.”

We knew Oliver would never be cancer-free but it was so frustrating to have run out of treatment options on the NHS. The standard of care on the NHS hasn’t changed in years. Even though brain tumours kill more children and adults under the age of 40 than any other cancer, they do seem to be the poor relation.

We began researching brain tumours and found out about immunotherapy vaccines in Germany, which are not offered by the NHS.

These vaccines help the immune system to recognise and attack hostile cells and prevent them from growing back. It’s a lot more advanced than anything that is offered on the NHS.

“I find it shocking and frustrating that it’s not available in the UK. There was something that might have helped but we couldn’t access it.”

The treatment is very expensive and would have required regular travel to Germany. It is a huge amount of money for one family to fund. We had set up a JustGiving page to fund the treatment, so we were relying on the kindness and generosity of others to help Oliver fight this cancer.

In November 2022, the clinic in Germany had done sequence testing and told us they were able to create a vaccine for Oliver. Unfortunately his latest scan results the following week showed the tumour had grown again, which meant the chemotherapy he was on wasn’t working. He was then put on the last type of chemotherapy he could have as part of the NHS’s standard of care. We looked at alternative medication for Oliver to be sourced from Germany

In December, Oliver started having problems with his vision in his left-eye, so he was put on steroids to reduce any swelling. He was struggling with his vision which then affected his balance. He was also starting to slur when he spoke, and he couldn’t remember certain words.

For New year 2022, we booked a cottage in the Lake District with the family. It was lovely but Oliver was struggling with his vision and coordination, and he had to be held when he walked.

On 12 January, Oliver had another scan at the Clatterbridge. We were told there had been significant growth on his tumour. The team said they could offer another type of chemotherapy but warned the chances of it working were minimal. Oliver had already tried three different types and none of them worked so he decided against it. For the first time I asked his prognosis and the oncologist said Oliver would just be looking at months/weeks left to live.

The charity Thumbs Up For Charlie had provided us with a week away in the countryside just outside Preston. It was a very difficult week; Oliver slept most of the time and my partner Billy and I needed to do all of his personal care such as washing.

When we returned home, a hospital bed was delivered for downstairs and Oliver spent a lot of the time asleep. After a few days he began struggling to swallow so he was put on a syringe pump to administer his medication.

All of Oliver’s family and friends came to visit him which was lovely. On the evening of 8 February, he began to struggle with his breathing. The district nurse gave him morphine and a sedative; incredibly it was the first time he had needed morphine. Within half an hour, Oliver passed away, with me, Billy and Oliver’s sister, Emily, by his side.

Oliver had gone five days without any food or fluids going into him, it was one of the most hideous things to watch. I’m just glad he didn’t have to be like that for a long time.

I just feel so frustrated that there are other treatments out there that work, but they are not available on the NHS. The standard of care is very limited. When Oliver was diagnosed, I was suddenly put in a situation where I needed to research treatments and medication, while also becoming a fundraiser to pay for potential treatment abroad. I became part of a club I never wanted to be part of. Things have got to change and the Government needs to allocate more money to research this devastating disease. Germany and America are doing loads of trials and have access to alternative treatments but everything seems to be on hold in the UK.

I’m supporting Brain Tumour Research’s call on the Government to ring-fence £110 million of current and new funding to kick-start an increase in the national investment in brain tumour research to £35 million a year by 2028. 

I’ve signed the petition to increase research funding, which needs 100,000 signatures to hopefully prompt a parliamentary debate.

Sharon Cooper
May 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.

Brain Tumour Research is determined to change this.

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