I hope everyone is well. Every now and then I pop up from the shadows in order to update people on my progress, and the state of my health. For those of you that have PMed me, thank you – it’s lovely knowing that my family are in your thoughts. For those that don’t really know the situation, nine years ago I was diagnosed with the worlds rarest cancer. It had a 0% survival rate past one year, and I’m the longest living person in history to still be living with it. Since then, I have had five separate chemotherapeutic interventions, radiotherapy, surgery to remove my back on the right hand side, and a number of enemas.
I quite enjoy the enemas.
Last year, tumours appeared in my arm and left buttock. Those of you that competed with or met me at either the Prudential 100 or SSUK will have noticed me having to strap my right hand to the bars in order to keep the bike stable! I began a chemo cycle in September 2017, which unfortunately didn’t work in reducing the tumours. Because we are running out of conventional treatment protocols, my oncologist suggested applying for a treatment by the name of Abraxane, as results across the world have been fairly encouraging in AS patients. After a significant wait for a decision, we were informed that I was not eligible for this treatment, and would therefore have to make do with another soft-tissue sarcoma drug named Trabectanin.
Trabectanin is shit. It’s a low level maintenance drug that is issued when there is nothing left, and that will have no effect on my tumours. It’s given to ST sarcoma patients to placate them, and I’m neither psychologically or physically anywhere near that place, as acknowledged by both my teams at UCL and the Royal Marsden. The only other option, other than awaiting a phase 1,2 or 3 trial that might never happen, is to fund the Abraxane treatment privately. This costs £3000 every three weeks for six months.
So so here I am, having re-written this post four times, and still unable to come to terms with having to beg to strangers to perhaps contribute financially and share the link below. I’ve never felt so compromised in my entire life, and the mix of sadness, humiliation and pure shame is almost unbearable. I have never asked for money from people before in order to meet my own personal needs, which makes it even more awful. I cried like a baby at the first treatment on Monday, as I couldn’t believe that my extended family were having to contribute to keeping me alive – sitting down with the ‘Financial Manager’ at UCL Private on floor 5, and having to phone my wife to make the first payment of £2918 was just soul destroying.
Im not sure if there is anything else to say really. Thanks for taking the time to read, and even if you don’t want to or cannot contribute ( and I absolutely understand if this is the case – I know how tight things are for everyone at the moment), please consider sharing the link on your social media.
Donated. Best wishes.
Fuckin hell. You absolute champ. Never be scared to ask for help when you need it mate.
A shit situation, but don't give the asking a second thought. Thinking of you and yours.
Done, good luck.
Stay strong like Bull. echo what PhilDAS say never be sacred to ask.
all the best and oh yeah Fuck you cancer.
Will share on my twitter and see what little I can do on the money front. It's not an ask, it's a necessity. Keep your head high mate.
Good luck, keep up the good fight
Donated and shared, keep fighting, mate!! ❤️❤️❤️
Done - good luck!
(Also, #thoughtsandprayers, obvs)
Please don't feel bad about asking - we would be the ones feeling ashamed if we found out we could have helped and hadn't. Good luck.
^ Nicely put.
Thanks for sharing.
Just having a whip round with my business partners. Will donate soon when I've had a chance to transfer to £
Props for reaching out. Donated.
If anyone deserves support it is @Bullheart
Look at his profile to see his fundraising efforts for other people.
It's nothing short of a disgrace you've been put in this position. But perhaps that's a discussion for another time.
Donated and I wish you well with it all.
Never feel bad asking for help . You have put so much effort into helping others since your diagnosis it literally fills me with happiness to be able to extend some help to you.
On that note, I had a whip round with some friends and colleagues and we have just donated £2,234. There might be some more to come. I know some of the guys have donated directly.
Donated, htfu bro.
Fucking hell that's good going!
I think this was at roughly 7k when I saw this first around 12.30PM today. So good to see this cracking on towards the goal.
Superb work. Sometimes there are small , and fleeting moments in life which illustrate that there are some very very kind and decent people about. I think that this is one of them.
Nice one Stonehedge, and everyone else who has donated- be nice if this hits the goal today, it’s climbing strongly at the moment. In a world often short of joy the sight of everyone helping makes me genuinely happy, so a personal thanks from me.
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