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Brain tumours kill more children and adults under the age of 40 than any other cancer

Thoughts following the first anniversary of the loss of BBC radio producer Simon Willis

by By Hayley Willis – Simon’s wife and mother of their children

Although Simon and I separated in April 2019, before he passed away, he remained very central to my life – we were very close and saw each other most days – I was only living a mile away and if we didn’t see each other, we would definitely speak on the phone every day. We remained jointly involved in bringing up our two children and even went on holidays together as a family.

Simon, a former BBC producer who worked with the likes of Zoe Ball, Jo Whiley, Simon Mayo and the late Terry Wogan, was a bubbly, larger-than-life character who radiated fun and was a devoted father. Simon was godfather to Jo Whiley’s children while she is Bevan’s godmother and along with her husband Steve, who was also a great pal of Simon’s, they remain close family friends, checking in with us often and getting together with us when we all can.

The first anniversary of Simon’s death was on 3 March after we lost him to a glioblastoma (GBM) brain tumour, poignantly at the beginning of Brain Tumour Awareness Month. Honor now 10 and Bevan, 14, and I are having to get used to these occasions. We’ve already had the first Father’s Day and the first Christmas without him, as well as his birthday when we focused on doing positive things. Honor insisted we still buy Daddy a cake for his birthday!

Being older kids when they lost their dad, it’s been pretty tough. It has hit Bevan really hard – he’s lost his male role model and although he has uncles and grandfathers, Bevan is now living in a female household. The sad thing is that it’s really difficult to access bereavement support for him. There are lots of groups for younger children, many offering art activities. He went along to one and was expected to make a bookmark. His reaction was inevitably: “How is that supposed to make me feel better that Dad is dead?”

The GP referred us to a local charity for children, young people and their families which supports mental health and emotional wellbeing, but bizarrely losing a parent doesn’t meet their criteria for bereavement support! I had to go privately to get help for the kids.

I look at Bevan and often notice he is starting to become Simon in miniature. Bevan loves 80s music, which they would have bonded over, and even asked for a cassette player for Christmas so that he can make up mixed tapes. It would have given Simon such a kick! Bevan’s also thinking of working in radio like his dad.

Since losing her dad, Honor has, hardly surprisingly, developed some separation anxiety. She’s always checking with me where I am going and how she can get in touch if she needs me.

I am also very conscious of how huge the stress has been for Simon’s parents who live in the North-East, which, with the distance, makes it more difficult for them to see their grandchildren too.

Simon and his brother Mark were very close, so it’s tough for him as well. Mark was a rock for us all following Simon’s diagnosis with what was initially a grade 3 anaplastic astrocytoma on Christmas Eve 2017. Faced with such shocking news, we abandoned our Christmas plans and Mark hosted Christmas instead. He continued to look out for his brother and even had Simon living with him for a while following his second surgery after the brain tumour grew back. 

Simon was the funniest person I’ve ever met and made me laugh more than anyone else ever could. Even doing nothing together was fun. I ache for those times now.

Cancer and everything else that went with it was not so hilarious. Our entire lives fell apart and I never saw it coming. I can’t even begin to tell you how frightening it is knowing that someone isn’t going to get better. If he didn’t pick up the phone or answer immediately when I walked into the house and shouted hello, dread would wash over me.

How do you even begin to prepare yourself or your children for this? It was agony.

The moment I had been dreading came at 5:37 am on 3 March. I knew the second my phone buzzed what had happened. “Are you the next of kin for Simon Willis?” Nothing can prepare you for that moment. Nothing. Despite knowing all through his illness that this would be the outcome, when it actually happened it was nothing like I had imagined it would be. I think I was expecting a miracle at the eleventh hour because someone like him couldn’t die. 

Day-to-day, I miss not having Simon’s support and find I need to plan so much more. I am a single parent with no one else around to pick up the slack. I don’t like to continually be asking people for help, like for example when I am running late for school pick-up.

It’s been a mega-stressful year in so many ways, not just because of Simon’s death, but having to sell and move out of the family home, being made redundant from my job and starting to retrain as a midwife. I am having to get to grips with writing essays, which is very different from the writing I did in my previous role as a social media manager.

I hope that by writing this blog and flagging up Simon’s brain tumour story, available to read on this website, I can play my part in raising awareness, particularly during Brain Tumour Awareness Month. It’s only when your family is affected that you truly understand the terrible implications of this devastating form of cancer which wrecks lives and families. The only way this can change is by bringing about better outcomes for brain tumour patients and ultimately finding a cure.

Simon taking part in the 2019 Walk of Hope with the children

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