John Lilley

3 min read

John was a loving husband and dad with a wicked sense of humour. He was diagnosed with a glioblastoma (GBM) brain tumour in 2019 after suffering a seizure and fought a tough battle which ended when he passed away on 7 May 2023. His family are continuing the fight with a Fundraising Group known as John’s Army. 

Here is John’s story, as told by his daughter, Charlotte …

My dad was the best dad – I know everyone says that, but he really was! He was so kind, good fun, always taking my brother and me on adventures or going bike-riding with us – even painting my nails. Dad never raised his voice – he was a very gentle man.

He had a wicked sense of humour and was always cracking jokes – even when he wasn’t well. And he never lost his sense of humour, although sometimes it could be quite black – he would say: ‘there are many reasons for living and one has just entered my head. If you can’t celebrate when alive, how the hell do you do it when dead?’

Mum and Dad were sweethearts from the ages of 18 and 19 respectively, marrying two years later and having my brother Daniel and me while still relatively young. Dad was in the Royal Navy for 12 years and fought in the Falklands War.

After the Navy, Dad worked for the RAC until he was made redundant. Then, in his 50s, he decided to wind down and took a job working in a call centre for HomeServe.

“It was always Dad’s plan to retire at the age of 60 and go on a world cruise with Mum, who had been diagnosed with breast cancer in 2015. Thankfully, since having surgery to remove the lump and radiotherapy treatment, Mum has been fine.”

You could count on one hand the number of sick days Dad had off work – he always seemed so fit and healthy. But on 3 July 2019, Dad was getting ready for work when he had a seizure and ended up on the bathroom floor. He came round to realise he was unable to speak. Fearing he was having a stroke, he banged on the floor to try and attract attention.

We called an ambulance and the paramedics also thought he had experienced a stroke. They took him to New Cross Hospital where Dad had a CT scan which revealed a shadow on one side of his brain.

The following day, Dad was transferred to the Queen Elizabeth Hospital in Birmingham where he had an MRI and further tests, including a biopsy, which confirmed that he had a glioblastoma (GBM).

“Agonisingly, Dad’s tumour was treatable, but not curable. Devastatingly, we were told that his survival prognosis, at the age of 57, could be a mere 12 months.”

Mum, Dad and I were all told together in a side room at the hospital. We never expected it to be a brain tumour – we just didn’t think it would be something so severe when Dad had had so few symptoms.

Dad also learned that he had to give up his driving licence, which he found very difficult as it meant losing his independence and having to rely on others to help him get around.

Daniel was away on holiday in Canada at the time and Dad decided he wouldn’t tell him about the brain tumour until he returned home a couple of weeks later. When he did get to tell Dan the diagnosis, we all had a good cry together.

“Meanwhile Dad was determined to fight all the battles which befell him and came to think of us, his family, as his army. He was also adamant that we should continue fighting his corner after he was gone.”

We’d never heard of GBMs before, but suddenly they seemed to be everywhere – famous people like Tessa Jowell and later Tom Parker but also so many ordinary people’s mums, dads, even children.

Dad was told he would have an awake craniotomy, because the tumour was so close to the part of the brain controlling his speech function, to debulk his tumour. It sounded very alarming. The surgery went ahead later in July with Dad being given the pink drink 5-ALA to highlight the tumour under UV light and help the neurosurgeon to remove as much of it as possible. Just before he went into theatre, Dad was told he didn’t need to be awake after all. 

His surgeon Professor Colin Watts was happy with how the five-hour operation went and indicated Dad might be able to go home the following day. However, we then had a bit of a scare when Dad had heart pains and it was feared he’d had a heart attack. In the end he remained in hospital for nearly three weeks.

Towards the end of August, Dad began daily radiotherapy and chemotherapy treatment which encompassed three different types of drugs delivered both intravenously and in tablet form. These brought horrible side-effects including brain fog and fatigue, as well as pains in his head.

When the COVID-19 pandemic lockdown started in March 2020, I moved back home with Mum and Dad. In some ways it was a blessing in disguise because it meant we had lots of quality time together. I especially remember enjoying drinks in the garden in the lovely, warm sunny weather we had during the spring that year.

Meanwhile Dad’s scans were coming back clear and he was determined that he wouldn’t be beaten. He enjoyed spending time painting, drawing and writing a blog which he called Brain Man about his brain tumour journey – a wonderfully witty account about his thoughts and feelings along with a record of his treatment.

“Dad wrote in his blog: ‘We have seen in a generation, the prognosis for patients with breast cancer and leukaemia turned on its head from investment in research, but we haven’t seen that for brain tumour patients. It’s clear that more needs to be done for people like me who are diagnosed with this devastating disease to bring hope, rather than despair, to our loved ones.’”

We were all very shocked when we learnt that just 1% of the national spend on cancer research has been allocated to brain tumours since records began in 2002. It’s just so unfair.

In July 2021, a scan brought the devastating news that the tumour was back and Dad had numerous cycles of chemo which led to multiple blood transfusions as his blood count or platelets dropped, but Dad was amazing and just got on with it.

“At the start of 2023, heartbreakingly, we learnt that there was further progression of the tumour – it was like a gob stopper that had splintered and now the tumour was everywhere.”

The doctor was very surprised that Dad wanted to carry on with treatment and remained so positive. He started on a course of lomustine for three days every six weeks.

Then, in March, Dad had a turn for the worse and couldn’t talk or use his left hand and was taken into hospital and put on dexamethasone.

“The tumour was growing a lot more quickly and we were told that there was nothing more that could be done, so it was some comfort that he regained his speech and was still joking, laughing and eating, even on the day he died.”

Dad was in hospital for five or six days and then he came home. Mum had been a nurse so she was keen to care for Dad, but we all helped look after him, including Daniel who came with his new wife. For the last three or four days of Dad’s life, we also had help from hospice nurses, and only needed to set Dad up with a bed downstairs for the last couple of days of his life.

I am glad Dad achieved his goal of living beyond 60 and also of still being alive for my brother’s wedding, although sadly he was too ill to actually attend. Mum and Dad had celebrated their 38th wedding anniversary, as well as 40 years together before he died.

We have so many lovely memories of such a special man, and, since he died, friends, neighbours and former colleagues have shared many of their own memories – lots of which we hadn’t previously known about.

“Years ago. breast cancer killed so many but now survival rates are high due to investment and better treatments, and, of course Mum is one of those survivors. Meanwhile, there have been no advances in treatment for patients with GBM for the last two decades because brain tumour research is so terribly underfunded, which is why we lost Dad.”

We’ve set up John’s Army as a legacy for Dad and to fight for brain tumour patients going forward and bring them hope that they can survive this awful disease.

Charlotte Lilley
August 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 historically 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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Together we will find a cure.

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