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.
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