Silas should have turned 21 last month. It was a difficult milestone in my head. We did very little as a family on that day – just kept ourselves busy and opened a couple of bottles of the red wine one of his godfather’s gave him back when he was christened. I wonder so much what sort of man he would have become. He would have been a giant of that I am sure. He would have topped all his brothers in height and I suspect have been around 6’4. I wonder how it would feel to be enveloped in his trademark enormous bear hug when he’d be that size? What would his infectious laugh sound like now? Would he and Inigo still be best mates? Would have have a girlfriend? Would his heart have been broken by someone already? Would he still need to curl his fingers through my hair? Would he still be as quirky and crazy as he was in this picture above taken on holiday in Scotland many moons ago? So many, many things that I will never know from a future that was stolen from us all.

We have learnt to live with our grief – we are not strong, we have had no choice in the matter really. It’s just one foot in front of the other – a gentle trudge into a future without his shining face – and the waves of grief, although they still come, are less likely to knock us off our makeshift raft these days. Very little though has changed in the world of brain tumours. Ben and I have been in touch with a family whose beautiful daughter died just after Christmas, just like Silas. It breaks my heart that families are still going what we went through and told there is no hope and no treatments that can save their children. When people say to me “have you not done enough yet?. Isn’t it time to stop?” – I want to shake some sense into them and say that I don’t think we will ever stop – not until families have more treatment options and these tumours are not a death sentence. Brain tumours remain the biggest cancer killer of children and young people and we have to fight until this changes. We need to at least “double survival” – one of The Brain Tumour Charity’s key aims.

So, more fundraising in the pipeline with our Masquerade Ball in June, and my fingers are sore from constructing table decorations and other bits and pieces – a welcome distraction from the permanent ache in my heart.

And then yesterday an unexpected surprise…. My mother turns up on my doorstep with a small package in her hand. Back in 2006, a local artist drew some portraits of the boys for her which she wonderfully gave me that Christmas. He had though in the back of his drawers several more that he had done at the time and this week he gifted them to her. One of the hardest things when someone you love dies is never seeing a new image of them ever again and there clasped in her hands were two glorious drawings of Silas that I had never seen before. Such little things but how my heart sang.

Today I have a slight spring in my step despite the thunder and rain…

Voices for Change

March 2021 was Brain Tumour Awareness month. The Brain Tumour charity has been hit very hard by the impact of Covid-19, like all UK charities, and their funding stream has been decimated. This is terrible news for those of us desperate to change the outcome for families facing a brain tumour diagnosis.

The charity is pushing its #voicesforchange campaign ensuring that the issues that affect the brain tumour community remain a political priority. As part of that campaign and also to push the charity’s ground-breaking app BRIAN, Ben and I recorded a video explaining why we wish the app had been around during Silas’s treatment.

Always bittersweet to see his beautiful smiling face.

If you know anyone diagnosed with a brain tumour please encourage them to sign up for the BRIAN app. Even if they never use it for themselves, merely by signing up their medical history (anonymised) can play a part in changing the future for others.

A Piece of the Jigsaw Puzzle

I recently got the chance to speak at another conference. This time for the PM Society’s conference – “What does an informed patient mean for healthcare.” – at The Royal Society of Medicine in London. The conference combined a series of presentations and case studies from experts passionate about patient involvement in healthcare, highlighting how important it is to engage patients from the very beginning of the healthcare process and showing how collaboration with patients is key to improving healthcare outcomes. It is an important part of the jigsaw puzzle.

I was the keynote speaker and also took part in a panel discussion about how best to design information that meets patients’ needs.


Partnership with Shepherd Neame


Kent-based brewer and operator Shepherd Neame has named us as their inaugural Charity of the Year, as part of the relaunch of their Sheps Giving charitable arm of the business.

Shepherd Neame have already supported us at some of our other charity events and their team was instrumental in helping the Mighty Bar run smoothly at our summer festival but this partnership takes their support to a whole new level and we are excited to be able to work directly with members of their team to raise funds and awareness. Aside from the local connections, the company has lost two members of its own staff to brain tumours and several other employees have had family members affected.

Funds have already been raised via a charity golf day and the Faversham 10K run but there are lots more plans in the pipeline, including a Christmas Sale and a comedy night – something that would have been right up Silas’s street – so watch this space….

Test Match Special

If there is one thing Silas loved more than anything, it was cricket. He spent hours out in the garden in the summer with his younger brother playing out five day test matches. They would hold the score in their heads, know exactly who had scored how many runs, know how many overs each bowler had bowled and how many wickets they had taken in each innings. Amazingly enough, we never had a broken window.

In August, his father had the opportunity of chatting to Jonathan Agnew on the iconic Test Match Special. They talked about cancer, brain tumours, fund raising, cricket and A Mighty Boy.


A very special moment for all The Pullen Boys both big and small.

Ben also took the “behind-the-scenes” opportunity to bandana a number of England cricketers including Ian Botham for the site.