David’s Story

“David was diagnosed with an anaplastic oligodendroglioma in 2017, when he was 37, after a tonic-clonic seizure. My fit and healthy husband was suddenly very sick.

He was started on anti-epileptic medication to control his brain tumour related epilepsy. His tumour was aggressive and taking over his left frontal lobe. David underwent an asleep craniotomy and debulking brain surgery 2 weeks after diagnosis.

The second I saw David after his operation I knew though my husband was alive, the man I had married and chosen to spend my life with, was gone. He was no longer my easygoing, extroverted and independent David and I overnight became his carer.

6 weeks after surgery, David started 6 weeks of radiotherapy followed by 8 months of chemotherapy. This first year was exhausting for us all.

The treatment meant the cancer was now stable, but I knew something else was happening. We got a referral for our Community Brain Injury Team to assess David. My suspicions were correct and severe acquired brain injury was confirmed – the result of the tumour, the surgery and the radiotherapy.

David has frontal lobe syndrome – an umbrella term for his communication deficits, his mobility issues, his inability to control his emotions (to name a few) and needs constant supervision to keep him safe. We’ve been getting modifications made to the house too so that he is safe and can stay at home for as long as possible.

David struggles to read, write and speak, so it’s my job to advocate for him and to tell his story. I’ve always chosen to see the positive in a negative situation so I get involved with charities to raise awareness of brain tumours and acquired brain injury in any way I can.

We need more support for people alongside their cancer treatment because, as you can see in David’s case, he needs so much support as a result of the brain tumour. There needs to be more support for the people caring for those with brain tumours too – it’s relentless caring for David and there’s no respite.”