• This topic has 205 replies, 20 voices, and was last updated 5 years ago by Esme.
Viewing 40 posts - 1 through 40 (of 206 total)
  • A Bullheart update…
  • bullheart
    Free Member

    Hello All,

    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.

    Thanks again,

    bullheart

    https://www.gofundme.com/55ugxdk

    leffeboy
    Full Member

    Don’t be embarrassed. When it looked like I had cancer I read through your first mega thread from start to finish. It was inspirational and made me face it head on at full speed rather than let it come at me.  Will help with treatment as you helped with mine

    FunkyDunc
    Free Member

    I’ve seen your posts over the years but never commented before.

    Don’t worry about asking others for money, you are an inspiration to others who are not fighting for their lives, and perhaps help us all MTFU when seriously small things in the scheme of things upset us.

    I’ve shared your link.

    Best of luck and stick in there….not that you need that advice !

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    Ming the Merciless
    Free Member

    Donated and shared.

    Ming

    PiknMix
    Free Member

    There is absolutely no shame whatsoever in asking, I can’t offer much right now but what I have you can have.

    hairyscary
    Full Member

    Donated.
    Do not feel embarrassed or ashamed.
    Matt

    big_scot_nanny
    Full Member

    There’s a bucket load of fight in you, donated with best wishes.

    Also, it is just about only in the UK that we get squeamish about paying for healthcare, in the rest of the world most people have experiences like yours when they have to stump up for every treatment.   So. It’s a normal reaction, but also perfectly normal for most folks.

    Keep cracking on!

    kilo
    Full Member

    Donated. Best of luck and Screw cancer!

    z1ppy
    Full Member

    I’ve seen your posts over the years, & done curiosity has led me to do searches to see if you were still, let’s face it alive (not in a morbid way, as..), & I’ve been amazed at what you’ve gone through & are still out there doing stuff. Your an inspiration, & more than worthy of a contribution. If putting off buying some silly (compare to your life) ‘upgrade’ to my bike, for a month, I am more than happy to help & you shouldn’t be ashamed to have asked

    shermer75
    Free Member

    I’ve been following your threads for a while now and you are an inspiration to me also. Happy to donate!

    chipsngravy
    Free Member

    Don’t be embarrassed Bullheart, you are a giant amongst men. It’s an honour to help in any way possible.

    Big love to your family.

    milky1980
    Free Member

    Absolutely no shame in asking for help whatsoever.  If I was in your situation I’d have given up long ago!

    Can’t donate right now as it’s been a bad month financially but will do when payday arrives.

    damascus
    Free Member

    Hi bullheart,

    A few years ago my friend and I did the mtb c2c over 5 days carrying our own kit. I remember during a low point (probably pushing up a great big hill)  Pete told me about you and how he always read your posts and took great strength from them. I now read your posts and take strength from them too.

    I’ve sent you a donation, keep them posts coming! Thanks

    allthegear
    Free Member

    Nothing wrong with asking for help at all. Donated.

    Rachel x

    martinhutch
    Full Member

    You’re a frequent inspiration on here to myself and plenty of others. No reason whatsoever to feel bad about what is a pretty small request in comparison.

    dyls
    Full Member

    As others said nothing wrong in asking. Donation also made.

    Wookster
    Full Member

    Done…now keep going you magnificent bastard you!!!

    BigJohn
    Full Member

    Thanks for posting this.  After reading a few snippets on your condition last week I was looking for a way of contributing.

    Hmm,  a new pair of shorts as my old ones are starting to look tatty,  or give the money to fund chemo for Bullheart so he might be able  to annoy us with his relentless positivity for a few more years?  Tough choice.

    scaredypants
    Full Member

    Wow Bullheart; I opened this thread with real trepidation but actually there’s not too many shit jokes, so that’s already a positive <winking smiley thing>

    I’m in.  Very best wishes for the next round

    Maybe you could sell us each a t-shirt: Three grand?? – you could get a course of chemo for that !

    surfer
    Free Member

    Bullheart you are an absolute inspiration to all of us on here. Kick its arse!

    tomhoward
    Full Member

    Done, shared and reported to make the thread a sticky one.

    bruneep
    Full Member

    Done

    cancer really sucks

    Drac
    Full Member

    Stickied.

    soundninjauk
    Full Member

    I’ve got nothing useful to say really, except that you should never feel ashamed for doing what you have to do.

    Done. Go kick its ass.

    Malvern Rider
    Free Member

    Is there any way Bullheart to link your gofundme to ebay transactions so seller and buyers can choose to donate 100% to your campaign?  If not we will Paypal the full amount raised after 7 days.  Spring ‘cleaning’ begins today.

    scc999
    Full Member

    1st time I’ve logged in for ages.

    Just wanted to echo all the above comments that there’s absolutley nothing to be ashamed of in asking for help.  I totally understand why you feel like that, but try to put it out of your mind.  You’ve got far more inprtant things to spend your emotional energy on.

    I’ve never met you but your posts on this subject have been truly inspirational.

    Donated and would also ask that this be made a sticky thread.

    Everything crossed for you.

    Si

    oldnpastit
    Full Member

    Donated. I remember your first ever post from way back when, it’s been a long old journey, I’d quite like it to continue.

    riklegge
    Full Member

    Done.

    I’m crap at knowing what to say, reading through what you have gone through puts my own minor ailments into perspective. Good luck with the funding, and as others have said there is absolutely no shame in asking for help when it’s needed.

    nonk
    Free Member

    Can you spare a few quid to keep me alive 😳 ?

    yes mate

    pleased it’s a sticky

    mechanicaldope
    Full Member

    Done. Wish you and your family all the best. Good luck .

    gonetothehills
    Free Member

    I too have kept checking in over the years and been inspired by your strength. I hope we can help spur you on like you’ve helped so many of us. Stay strong, screw cancer and keep on keeping on. Donated.

    mechanicaldope
    Full Member

    Also, if you don’t get the full £15,000 this time round, or another course is required, feel free to ask again when the money runs out. Chances are I would have some more I could part with in a month or two’s time.

    oldtennisshoes
    Full Member

    **** THAT **** CANCER Mark!

    tallie
    Free Member

    Donated – keep fighting mate!

    beagle
    Free Member

    Done.  And echo mechanicaldope’s comments.

    All the best.

    akira
    Full Member

    Donated, not much unfortunately but hope it helps.

    anagallis_arvensis
    Full Member

    I’ve added a bit. Good luck

    Esme
    Free Member

    Donated . . . and I’ll add some more, if you post the “Vogue” photo and the “Show and Tell” drawing on here 😉

    Thank you for letting us help!

    roper
    Free Member

    I remember when you first posted. Has it really been nine years?
    I have shared your story quite a few times over the years with people going through difficult and dark times. It has given them an extra bit of strength when at times they thought they had nothing left. I wouldn’t be surprised if in turn they too have passed on your story too. A sign of a legend.
    Asking for help when you need it is fine and honourable and I hope you can reach your target. I suspect you will so just focus on staying well rather than worrying about money. Look after yourself, family and friends and let STW and friends try and sort out the other bits.
    Take care.

    Merlinman
    Full Member

    Here’s hoping!

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