Life before diagnosis
Hi everyone,
I'm Simon, a 55-year-old guy, born in the UK, Manchester, but living in London and Surrey for 30 years. In February 2025 I was diagnosed with a terminal brain tumour. The typical life expectancy for someone in my position is 6-12 months from diagnosis.
My current fundraising has enabled me to have a private treatment in the UK which is an immunotherapy called Avastin, a powerful treatment which has slowed the growth. In fact the original tumour has been “zapped”, but a new one (regrowth) has popped up. I am still determined to raise funds. I have now been rejeted for the preffered treatment, CeGaT as the treatment will take too long, so I have, thank god now been accepted by IOZK in Germany. All funds raised so far have paid for the initial payments to CeGaT, however, they are only refunding a small amount of it. So the battle on many fronts continues. Staying alive to be with the family and raising funds to make this happen and will continue on Avastin for as long as needed.
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During surgery and treatment
This is my story
Hi everyone, I'm Simon, a 55-year-old guy, born in Manchester but living in Surrey and the City for 30 years. In February 2025 I was diagnosed with a terminal, stage 4 brain tumour. The typical life expectancy for someone in my position is 6-12 months from diagnosis.
This is my story:
I am married to the beautiful and unbelievably strong, Zoë, and I have 2 kids, Raphael, 22 years old who will plays rugby professionally (hopefully in France soon as frankly it pays more and is better than here!) and Gabriel, 17 who is a computer nerd, complete opposite to his brother and doing computing at college. I have an 86 year old mum, Pam, who had a very rough 2024 and 2025 herself (it’s like a crappy competition), who I’m looking after, but who still, unbelievably, has the mental ability to deal with me!
In 2025 I did a dry January and did an 8 mile walk every day to get fit, but every day on the walks I had a "dizzy" spell. I put this down to a diet, daily exercise and no booze. Then in February, the spells kept happening, so I decided to do an MRI. I did an MRI private scan, the cheapest I could find in London, just for my own sanity and the following morning I had a phone call from the GP and was ordered to meet them asap. I was told I had a brain tumour, level 2. This was Wednesday. On Friday I went to hospital and after another MRI was told it was level 4, and terminal, game over.... I spent a week in St Peter's hospital, then in March I spent a week in St George's Hospital and had surgery. Unfortunately, they couldn't remove the whole tumour, just 80%, so I'm doomed apparently, I have my SR1 document (short length terminal disease statement), hence why I am doing this fundraising, as I have to look after my family who I love more than everything, and the time remaining is short.
I spent my whole life raising charity funds, volunteering and trying to be just a good person, never expecting the same for me, but here we go!
Having gone through months of trying different options to stabilise the tumour, and spending what money I had, I have just had my latest MRI (29th September 2026) and it shows a new tumour, big new tumour.
I will continue doing the private treatment every 3 weeks, it’s called Avastin as my consultant believes it will help in a small way to keep me alive a bit longer. This is roughly £1,400 a month. Your donations have so far allowed me 17 treatments over the last 12 months, so all donations help fund this.
I’m so in love with my wife and family, they make me feel amazing, and it hurts so much to know that without donations, i'll be dead quickly.
Thank you all and please contact me at any time. Let’s keep this going x
Now
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