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In Our Hearts Stories

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

Simon Willis

A former BBC radio producer who worked with the likes of Zoe Ball, Jo Whiley, Simon Mayo and the late Terry Wogan, Simon was a larger-than-life character and devote father. His brain tumour diagnosis came after a year of symptoms including fatigue and confusion. He passed away three years later due to complications after surgery.

Here is Simon’s story as told by his former wife Hayley

Simon was a bubbly man with a larger-than-life personality. You could spend an hour with him and think he was so much fun, but once he became ill, if you spent any significant time with him you would realise he wasn’t so good and that he would constantly repeat the same stories.

“It’s quite strange to think that those who are the life and soul of the party are quite often the ones who leave the party first.”

Simon worked as a radio producer, notably on Zoe Ball’s Breakfast Show when she was at Radio One, where he also produced Simon Mayo’s show. He also worked with the likes of Jo Wiley and the late Terry Wogan. He spent a period too in TV development as a talented executive creative director.

Among his other great passions was his love of theatre, he was a member of a local amateur dramatics group and he was a massive foody, enjoying cooking elaborate meals at weekends, when he would use every utensil and pan in the kitchen, along with many quite obscure ingredients.

Simon was a great father to our two children, Bevan, now 14, and Honor, nine. He was always lots of fun and often not the sensible one – he would come home from work just before bedtime after I had spent the previous hour calming them down and immediately fire them both up!

The first signs that anything was wrong came a good year before he was diagnosed. Simon started complaining of feeling really tired and it started to affect our home life. He was put on anti-depressants which did nothing to help. I had to keep encouraging him to go back to the GP surgery to let them know the tablets weren’t working and pointed out that if he didn’t, the GP would think he was fine.

It wasn’t until we went on holiday and Simon was so tired he didn’t want to do anything that I completely realised how bad things had got. I hadn’t appreciated that when I left for work as a maternity care assistant at Stoke Mandeville Hospital at 6.30am, Simon would really struggle to get out of bed, although I do remember calls from their school to say that the kids hadn’t arrived.

I remember talking to our maternity ward matron about how I didn’t know what was going on with Simon. On one occasion, when he was writing an email he forgot how to add an attachment and there were times when he couldn’t remember how to spell a word, or forgot the way when he was driving. She asked if Simon had hit his head because it sounded like a head injury and was adamant we should go back to the GP and insist on an MRI scan.

Simon was referred to a neurologist who did various tests and thought he was fine, but decided to send him for an MRI to be ‘doubly sure’.

While we were waiting for his MRI appointment, I remember starting to make a cottage pie and pushing some potatoes towards Simon, saying: “Make yourself useful.” He didn’t know what to do with them; didn’t understand that they needed peeling and preparing for the saucepan.

“I thought he was winding me up. It made me question whether he had early onset dementia and whether he was fit to care for the kids in my absence – Honor was just five then.”

The MRI scan went ahead on Christmas Eve 2017. With the chaos of having young children and family visiting for Christmas, Simon went to the appointment with his friend Steve, with the idea they would go for brunch afterwards and then come home. It got later and later, but eventually we had a call from Steve to say they had found something.

“The news was fed to us in drips; nobody mentioned the word ‘tumour’ that day, but rather ‘lesions on the brain’. It was terrifying but in a strange way also a relief that there was an explanation for Simon’s bizarre behaviour.”

The doctors decided Simon would have to be admitted to Milton Keynes General Hospital as they were worried he might have a seizure because of the size of the mass and the amount of swelling around it. Simon was put on steroids, while we abandoned our Christmas plans. Simon’s brother Mark, who lives in Kettering, hosted Christmas instead.

Being the Christmas break, it was so difficult to see anyone who could tell us what was going on with Simon or what was going to happen. It was incredibly frustrating and obviously very worrying.

Early in the New Year, Simon was transferred to the John Radcliffe Hospital in Oxford where, in mid-January, he underwent a resection and a biopsy on an 11cm-wide mass which we had been told had been there a long time. The surgery was successful in removing around half of the tumour.

“We got the histology results on 30 January, Simon’s birthday – he had a grade 3 anaplastic astrocytoma.”

Having done lots of research on the internet by then, I was really freaking out, but Simon appeared very matter of fact. I chased after Mr Plaha, the neurosurgeon, saying: “Please, we have children. You need to tell me what this means. What time frame are we looking at?” Mr Plaha was very honest and told me that the best hope was that treatment would pause or stall things for a while.

Meanwhile, Simon, the eternal optimist, would say: “It’s cool. Everything’s going to be fine.” It was his way of coping.

Simon had six weeks of radiotherapy, which felt like an awful lot longer. I was researching everything and getting him to eat, do or try all manner of things I thought might help.

A further scan revealed that the tumour had not grown and was stable.

Simon then had 12 months of chemotherapy. He was very sick for the first couple of months during the Summer of 2018 and I really didn’t expect him to last the course.

By Autumn, however, Simon started to perk up and was able to tolerate the chemo quite well, although it knocked him out for a few days afterwards and he was really stressed for a few days beforehand. I tried to do anything I could to make him feel better, making whatever food he fancied eating.

“It was pretty devastating at Christmas that year when Simon told me he didn’t think our marriage was working and he wasn’t happy. In April 2019, when he finished his chemo treatment, we separated. I still wanted to be close to him and remain there for him, so it was very difficult to accept.”

Simon was planning to go back to work and still telling people he would live to a ripe old age, even though we knew the tumour could be treated, but not cured. I knew he wasn’t going to make old bones, but because of the way he spoke about being fine and ‘better’, it was such a shock to so many people when he died and especially everyone he worked with at BBC Radio One, including the likes of Zoe Ball who called Simon’ The naughtiest, daftest dear chap’ in a tribute on social media.

It was very frustrating for him not being able to drive – Simon was desperate to get his licence back – but I could see he was slower and not as sharp as he used to be and I was scared about him driving again.

In September 2019, Simon did the Walk of Hope along the Grand Union Canal with the kids for Brain Tumour Research.

In March 2020, when the coronavirus pandemic properly hit us, I noticed that Simon didn’t get how serious it was and wasn’t taking precautions.

Even during the pandemic, Simon had his six-monthly scans, going alone, when previously he had been accompanied either by me, Steve or his brother. Now because of COVID he had his results on the phone. He told us he was fine. Towards the end of 2020, he became very snappy and could get quite cross for no apparent reason. I thought it was just with me, but later found out that it was actually with everyone.

Around Christmas-time he learned that the tumour was growing again, but because no-one was with him at the appointment, we only had his version of events. He made the decision on his own to have further surgery – perhaps if Steve, Mark or I had been with him, we might have talked him out of it. 

Simon had his second craniotomy in January 2021. It was quite successful in removing the tumour, but he never really recovered from it. He went home to stay with his parents following his discharge and then to his brother’s for a couple of weeks.

He was very confused following the surgery and on one occasion when I FaceTimed him he asked where I was. He wouldn’t accept I was at home because he had forgotten that we were no longer married, nor living in the family home together.

It was strange. Sometimes he could be quite lucid and sometimes not. Mark started to wonder whether he would ever be able to live independently again.

One day Simon told Mark he had hurt his leg coming out of the pub, even though he hadn’t been anywhere. His behaviour became increasingly confused over the course of a week and it became apparent that his head was swelling. He spoke to a Macmillan nurse in Milton Keynes who said we should bring him in and they could arrange for a scan. A blood clot was found and Simon was given anti-coagulants.

We weren’t worried because we thought now that Simon was being treated, he would be fine. Mark had been visiting him in hospital and had just left when I tried to call him, but Simon had already gone to sleep.

“At 5am on 3 March 2021, I got a call to say Simon had passed away. Apparently he had stood up to go to the toilet and the clot had shifted and that was it.”

I didn’t find out until about an hour after it happened, because the hospital were trying to call me on the landline which had been disconnected.

Although we knew that the tumour had become a grade 4 glioblastoma multiforme and what that meant, his death was so much earlier than anyone anticipated.  Mark was in the process of helping to put Simon’s affairs in order.

Simon had wanted to donate his brain but because of how his death happened, this wasn’t possible. It was sad too that Simon wasn’t able to donate his organs in accordance with his wishes because he had undergone chemotherapy.

It was very tough for the children because, although they had known their dad had been ill for three years, they didn’t really think he was going to die, even though we didn’t keep things from them. They could see he was often tired and needed lots of sleep, but they just accepted that was how Dad was. Honor could barely remember Simon being well and going to work.

“I never stopped loving Simon, or caring for him. It was very tough knowing that people were thinking: Simon’s got a brain tumour and she’s left him.”

Although we didn’t separate because of cancer, his illness didn’t help. Trying to reason with someone who has a frontal lobe tumour isn’t an easy thing.

Hayley Willis
October 2021

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.

If you have been touched by Simon’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

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