I was abroad on holiday in Cape Verde at the end of September 2018 when I noticed my right eye had slightly blurred vision and it wasn’t until I closed my left eye that I realised it was quite badly blurred. Normally I have 20:20 vision so it was quite noticeable for me. I booked myself in for an eye test for the 6th October 2018 thinking I would just need glasses like most people go to the opticians for. How wrong was I. They were struggling to get a photo of my retina as ‘something’ was in the way. After a lot of examination they told me there was something pushing my eye forwards and I needed to go to Ipswich hospital on Monday 8th October. When I got to Ipswich hospital after many more eye tests and an ultrasound they told me I had a tumour behind my eye and I needed to be referred to moorfields eye hospital in London. Tuesday 16th October 2018 I had my appointment with Professor Sagoo at Moorfields and over the previous 3 weeks the vision had gone from slightly blurry in the right eye to not being able to see out of it at all. After yet more eye tests and ultrasounds and pictures of inside my eyes were taken Professor Sagoo confirmed what we were all thinking, I had cancer of the eye, also known as Ocular Cancer, and I had to have my eye removed. 3 weeks on from that day and I went in for surgery on the 6th November 2018.
In between the 16th October & 6th November 2018 we made multiple trips back to London for PET and CT scans to see if the cancer had spread and at the time it hadn’t. The surgery itself couldn’t have gone better and on the 16th November 2018 we went back to London for a follow up appointment we were told the cancer had been contained within my eye & I didn’t need any further treatment such as radiation.
After that I had my prosthetic eye fixed and went about life as ‘normal’. I had ‘routine’ scans 6 monthly and on my scan on the 10th September 2019 I had a scan which found something on my liver. Multiple appointments, two biopsy’s & what felt like 100 blood tests later they confirmed what we all feared, the cancer was back in my liver & it was ‘incurable’ and untreated I would have 6 months left to live. Being dealt this news at just 24 was seriously tough but with some promising treatment plans I kept super positive.
The first treatment I started early January was a clinical trial at Mount Vernon hospital called IMCGP100. After going there twice a week for 12 weeks we were devastated when we found out it hadn’t worked and in fact the tumours had grown.
Then in May I started another immunotherapy treatment called ipillimumab. Again the scans revealed this didn’t work.
Over a year after my secondary diagnosis, I’m still here & fighting and feel relatively ‘healthy’ all bar slight pain in my liver there is nothing else wrong with me.
There is a treatment called Delcath which is performed in Southampton which requires an intensive care bed, so after I finished imcgp100 I wasn’t able to do it due to the lack of intensive care beds due to COVID. In order to get into Delcath, I need to have less than 50% disease (cancer) in my liver. We have just been told that I have 50% already so we need to get on with the treatment. The issue with this being it is now no longer a clinical trial and therefore is not funded by the NHS. This treatment will cost me £40,000 a session and I could need up to 6 sessions if not more. 50% of people who have had this treatment have had their tumours shrink, with the other 30% having their tumours remain the same. With these sort of statistics and at just 25 years old I need to find the money to fund this treatment. I have been told if I want to go ahead with this treatment I must start on the 26th October.
Obviously being asked to get £40,000 in 19 days is possibly the most daunting thing I’ve ever faced, and that’s just for treatment number one. 6 weeks after that will come number two and so on and so forth. This is where I need the amazing powers of social media. I completely appreciate it’s seriously challenging times at the moment, but even £1 won’t go unnoticed and if that’s too much, just sharing the post to your family and friends would mean the world to me.
We will be running different fund raising events over the coming weeks and months so make sure you follow and like the page to be kept updating with fundraising progress & treatment progress. Any fundraising ideas and help are truly welcomed
- Brian Brett
- Jade Hodgkinson
- George Forbes
- David Wadhams
- Ernie Boothe
Organizer and beneficiary
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