Life before diagnosis

Hi everyone,

I'm Simon, a 54-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 12-18 months from diagnosis, I’m in month 12 (February 2026).

Having gone through months of trying different options to stabilise the tumour, I have now found several treatment options that have potential to keep me alive for up to 5 years, or more. I am now having a different type of chemotherapy through the NHS and another private treatment which is an immunotherapy called Avastin. Avastin is a powerful treatment which is likely to bring good results for a period of time however, not that long. Once the treatment begins it’s ongoing and likely to last for several months before the cells DNA restructure and Avastin stops working. My consultant has stated I will then need to start another treatment, I can't publish the chosen one yet, I will publish after my brain tissue sample has been confirmed as enough for the treatments, but the initial cost is very high (Details below). 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.

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 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, 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.

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!

IOZK: estimated initial costs, Germany, £72.300 in year 1, plus accommodation, flights, transport and there will be medical extras circa £6000. A total of £78,300.

CeGaT: estimated Initial Costs, Germany, £80,300,00 year 1, plus accommodation, flights, transport and there will be medical extras circa £6000. A total of £86,360.

DCvax: UK treatment and manufactured, USA company, final NHS testing underway (Not approved until 2030 unfortunately), induction Phase, £75,000 upfront, then £20,000 x 3 in 1st 12 months for “boosters”, and an additional £12,000 for manufacture, treatment fees. A total of £147,000.

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 at all since early 2025, and although I am currently feeling brilliant, my earning potential is now limited. If I can find work that fits in with the numerous hospital appointments and days when I am too unwell to do anything at all, which whilst the Avastin works is rare, then what I earn and you donate will finance the chose treatment.  

The funds that my amazing friends and family have raised this year have enabled me to test different treatment options, 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. If just over 200 people were able to donate the cost of a couple of pints each month it would enable me to keep on going for longer and get the 5+ years my loved ones deserve. Please.

Now...

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