Life before diagnosis

Hi everyone,

I'm Simon, a 54-year-old guy (55 in June this year, Woo Hoo!), born in the UK, 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 12-18 months from diagnosis.

Having gone through months of trying different options to stabilise the tumour, with no or limited success, we have now found several treatment options that have the potential to keep me alive for up to 5 years, or more. Chemotherapy has zero effect on unmethylated glioblastoma, and I have just completed my 2nd Radiotherapy session on a new growth, 30 days in a row last year and 10 days this year, no more allowed or it will frazzle by brain. So that’s it at the NHS. My current fundraising has enabled me to have a private treatment which is an immunotherapy called Avastin. Avastin is a powerful treatment which is likely to bring good results for a period, it has reduced my original tumour by 70% and kept it that way however, a new tumour has appeared, which the last radiotherapy was for. So, I have to keep funding the Avastin and now finance treatment for all future tumours (DNA based).

I have now had approval for the next treatment, so will likely have a new brain tissue sample removed (there is an upside - morphine!) and frozen to enable my selected future treatment (details below). The initial cost is very high so unfortunately, or fortunately, there is a plan in place to get me to the minimum of 5 years with my loving family, but I do need everyone's help, friend or stranger please so I can see my youngest son get to 21 years old.

During surgery and treatment

This is my story

I am married to the beautiful and unbelievably strong, Zoe, 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 and I have an 85 (86 soon) year old mum, Pam, who had a very rough 2024, 2025 and so far in 2026 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 was doomed apparently, I have my SR1, hence why I am doing this fundraising, as I have to live longer so I can look after my family who I love more than everything and the time remaining is short and I am determined to fight and extend my life expectancy, so targeting 5+ years post diagnosis.

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!

The selected initial treatment is CeGaT in Germany. The estimated initial costs are £80,300,00 year 1, plus accommodation, flights, transport and there will be medical extras circa £6000. A total of £86,360.

I’m so in love with my wife and family, they make me feel amazing, and it hurts so much to know that without any income now, my condition will deteriorate, and my life could end very quickly. I have not been able to work since early 2025 as it would impact my benefits. I feel brilliant, but my earning potential is now limited. Only you donating will finance the chosen treatment. 

The funds that my amazing friends, family and complete strangers, have raised so far have enabled me to test different treatment options and are financing the next major one, and we are all so grateful for that, Thank you. But we do need to somehow find a way to pay for these treatments and need your support urgently. Your donations will enable me to keep on going for longer and get the 5+ years my loved ones deserve. Please, donate, encourage others and do look at the whole website and gte the story of my life. Thank you again.

Now...

Please help us keep this going for at least 5 more years