• This topic has 47 replies, 38 voices, and was last updated 5 years ago by sok.
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  • A Bullheart Christmas update…
  • bullheart
    Free Member

    Hello my lovely stw brethren,

    I cannot remember the last time I even logged on to the forum – I have been lurking, but for reasons that will become more obvious in a bit.

    What has happened since the summer? We ended treatment that was costing us £2972.35 per four week cycle, after having spent nearly £30K over a 7 month treatment period. Scans showed it was effective, which was grand, and we packed our bags and headed of to the south of France for a disastrous two week holiday with the extended family. My MIL had a ‘moment’, based on an idea to shelve HRT treatment, leading to some complex behaviours that resulted in moments of tension(!), and in the week preceding the trip I had started to feel the the pain in my abdominal area was potentially a little more sinister that we had given it credit for…

    As the trip went on, we contacted the palliative care team back in the UK that has been dealing with my pain, asking advice – theirs was to return home ASAP so that I could be scanned and reassessed. Unfortunately I had an itch that needed scratching about 45 miles away in the form of Mont Ventoux, and so we carefully planned a day to make an early ascent. Day came, I rode up hill, took pics to verify the achievement and then got in the car and curled up in a ball until we got back to the chateaux.

    You can guess the rest of this Greek tragedy – on getting home, and receiving the scan results we find a significant spread of active sites throughout my body, and the game begins again; what’s treatment next? How will it impact home? What about the family, how will they cope? My wife has just finished her Midwifery degree – what does this mean for her plans? My poor **** kids – will they ever experience a ‘normal’ lift.

    In terms of medicine/treatment, there is little left to turn to – the downside of being the longest living AS survivor is that ten years of treatment tends to mean you’ve ticked ALL the boxes of things tried.

    Back in a bit!

    lunge
    Full Member

    Well that’s a bit crap. Good luck with whatever happens next.

    Ming the Merciless
    Free Member

    KBO

    Ming

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    lowey
    Full Member

    As ever keep on keeping on mate. You are a total inspiration.

    Best of luck and love to you and the family.

    MrWoppit
    Free Member

    Sorry to hear that, Mark.

    Keep buggering on and keep us informed. I’d be happy to contribute to a revived funding push if needed.

    Woppit.

    benz
    Free Member

    Sorry to hear that it has raised it’s head again. However, you keep bouncing back. Keep bouncing!

    As Mr Woppit – keep us informed.

    salad_dodger
    Full Member

    Best of luck Mark. Fingers remain crossed for you and your family.

    TiRed
    Full Member

    Best wishes Mark. Good itch to scratch that you’ll all remember. Are there any trials available? Happy to do a search for you.

    gnusmas
    Full Member

    Thanks for the update. Keep on keeping on, hope there’s something out there for you. Much love to you and the family.

    bullheart
    Free Member

    Where was I?

    Treatment – there were three options available. Trebectidin is shite, and felt to be pretty ineffective in the worldwide sarcoma community to be a redundant treatment programme. The second, Ifosamide, I’ve had before in a combination therapy which was effective- but with some very complex side effects that can make life feel ‘not worth living’. It is brutal, and as a standing regime it really does impact on the family and wider social support groups. My poor kids don’t really have a dad at the moment – absolutely breaks me, as I’ve always worked hard to reduce the impact having cancer might have on then – but at some point I’ll have to sit down with them an explain that daddy is not going to get better.

    How on earth do you start that conversation?

    scaredypants
    Full Member

    no pics of ventoux, very poor show. I mean, how will we know what impossible extra hardship you engineered

    Was it in a Peppa Pig outfit / on a penny-farthing / towing the kids in a trailer? – we need to know

    Edit: Man, I wish this could’ve come before your second post; leaving it here all the same. I suspect you appreciate inappropriate levity more than most – and you get to imagine me cringing !

    BEST of luck with whatever comes next
    (my money’s on your kids being smart and pretty much knowing what’s going on)

    Pigface
    Free Member

    Wondered what was going on, keep fighting.

    DezB
    Free Member

    Yeah, good to get an update, but wish it was better news mate.
    **** cancer.

    jamj1974
    Full Member

    Very pleased that you scratched that itch. Bloody good work.

    I am extremely sorry to hear the challenges you are facing directly from the illness and the treatment. What a complete bastard of a disease. I hate it beyond all **** belief.

    I have no advice to give – but my thoughts and best wishes are with you.

    BigJohn
    Full Member

    Keep playing whack-a-mole with those tumours.

    I don’t suppose my positive thoughts and best wishes have any physical effect, but they’re on the way anyway.

    cynic-al
    Free Member

    Love the Ventoux action, and your spirit generally. Keep pushing Mark, Big-Hitting hugs…

    eddiebaby
    Free Member

    That’s a bugger mate. Keep on being the guy you are. Massive respect here.

    thepurist
    Full Member

    What? It’s been 10 years??? Doesn’t this frikkin cancer know when it’s beat?

    bullheart
    Free Member

    So those were two of the options available – both from the NHS, with no additional cost. There was a third treatment protocol not available on the NHS, but this is (again) prohibitively expensive and as such was eliminated from the rare cancer fund in 2012. It has favourable response rates in STS, and is used everywhere else successfully to treat it.

    We knew about this, and so obviously the question was “How can we afford this treatment?” At £3000 every three weeks, it’s prohibitively expensive; I decided a long time ago that there was a cost effective component to all of this, and that I didn’t believe in making strangers pay for a course of treatment with a poor visible outcome. That’s why we haven’t fired up the fundraising activities to date.

    I started to ask questions about the availability of this drug – it’s manufactured by GSK, in the Indian Continent, which is tricky, but interestingly (and as a first for me) is only available in pre-pack tablet Forman for oral consumption. Additionally, it’s not on the banned import schedule of cancer drugs, nor is it difficult to obtain – you can buy it from any pharmacy in India over the counter.

    So when pushed my oncologist admitted that there was nothing to stop me from importing the drug here. The difference in cost is absolutely mind blowing- by our calculations it’ll cost less that £590 for a months treatment and delivery here in the UK. There are risks that we’ve been warned about – principly relating to fake medications being sent out – and my hope is that through the post here on STW puts us in touch with someone who might be prepared to analyse what we’ve receive from India. My oncologist has suggested that a lab with a biochem centrifuge would be a gold standard approach to finding out whether it’s Votrient or rat poison!

    Another issue that STW folk might be able to help with is having a contact in India that can carry out the transaction face-to-face. We’re happy to pay anyone that might be able to help…?

    So that’s where we are at the moment. I’ve lost 28kg over the last six months, and am restricted from driving and cycling because of the size and proximity of the metabolic sites. I’m in constant pain, and no amount of morphine seems to alleviate this – I am therefore a grouchy, surly bastard on a daily basis, for my long suffering wife and beautiful children, which I hate. The forum has shifted a little on its axis at the behest of the owners – whether that is a good or bad thing we’re yet to see – but I’ve always found it to be a lifeboat in stormy seas, and it certainly prevents some of the isolation I increasingly feel from growing too great. My hope is that we don’t lose site of this.

    Thanks for listening folks. Again, no pity wanted, just felt that those of you kind enough to have supported me over the last 9 1/2 years deserved an update. No giving up, no bowing down. **** you sarcoma!

    leffeboy
    Full Member

    Thanks for the update.  I was wondering over the Christmas period how you were faring but was scared to ask really.  If this could have been nailed by willpower alone you would have got it years ago.

    blader1611
    Free Member

    Is there any form of governing body for Pharmacies in India where by you can buy them from places which are affiliated to it thus increasing the chance that what you are buying is genuine?

    jimmy
    Full Member

    I work with a lot of Indians, I will ask them. Send me as many details as you can.

    Scienceofficer
    Free Member

    You sir, are an intelligent, articulate, double hard barstard.

    You inspire me to try to live my life with the zest and determination you have persistently shown in the last decade. Bet you didn’t realise you’d become a role model.

    Let the importing commence!

    bullheart
    Free Member

    That’s very kind fella; I’m not too sure why, but I’ll take it. In fact, if you’re happy to tell me kids this directly, we set up and email address some time ago – the hope was that folk could be as honest and truthful about their experiences with/of/about me – I very much want the process to be honest about me, including negative experiences. My kids need to know he EXACTLY what their father was like, not just some halcyon post – death lyrical love-in.

    It can be anonymous,and cannot be edited by me – I don’t even have access to the archive anymore. The only person I trusted who would complete this without prejudice is my old tutor/colleague from the IOE, and the complete owner rights to the email are hers (this is legally confirmed).

    So please do feel free to comment in some way about if there has been anything I’ve influenced, as it will hopefully one day will help my two amazing girls understand who their dad really was….

    leffeboy
    Full Member

    so, what’s the address then?

    bullheart
    Free Member

    What a spanner…!

    Yourdadwasthebullheart@gmail.com

    Cougar
    Full Member

    “is,” surely. Bah.

    Sandwich
    Full Member

    Mark, I’ll talk with the boss next week when we’re back as we had a group of Indian doctors holiday with us last season. I’ll need his ok to contact them again to ask advice as he’s a sole trader not a corporate.
    And to echo Cougar that should be an ‘is’ (unique people are never a ‘was’).

    Hope Christmas was as good as possible and the rest of the family are doing well.

    teethgrinder
    Full Member

    Hi,
    Saw your post about the Indian GSK medicine. I work for GSK in Barnard Castle. Let me know as many details as you can and when I get back to work on 7 jan I’ll speak to some site senior management and see if there’s anything we can do.

    Alphabet
    Full Member

    Thanks for the update. It sounds like there are some people on here who may be able to help. Like there was ever much doubt. Keep fighting and good luck with this next chapter in your amazing and inspiring story.

    cchris2lou
    Full Member

    Keep going.
    Do you know if that médecine is available somewhere else in Europe.

    jamj1974
    Full Member

    Mark, Is this not something suitable for crowdfunding as you did before…?

    jsync
    Full Member

    I’m up for a fundraiser, although I realise this is not the point of the post.

    Good luck to you and family Bullheart.

    trap6
    Free Member

    I’ve been holding back,not knowing what,how too say anything,but my thoughts echo what I’ve seen from some above if not all,there is an inner Beast in you from what I can see, I think we all wish we had the same,’God knows’ life would be not so bad like many of us think, Stay Strong BULLHEART Like you always Do,and Please Keep that Hardened Wardog Attitude.
    Peace Sir.

    cloudnine
    Free Member

    Hey.. where’s the Ventoux photos!!

    [Manhugs] Keep up the fight.

    anonymous
    Free Member

    I don’t have the necessary contacts you need right now (although I know a very pleasant family from Bangladesh that cook amazing food, should samosas be required) but I hope that folk here are able to help out with your requests – looks like things are already moving on that front, so fingers crossed.

    I also echo the sentiments about you being a genuine role model, in an era whether such are a rarity – with genuine passion, fight and love for others. I’m sorry your hand has been forced to demonstrate it in such a way, but perversely your story does, and will continue to, benefit many in their daily life and outlook. Well, that is until we all get a bit fretty about whether to put on winter tyres on our car.

    I refuse to write into a eulogy email though. It’s not going to be needed, as well you should bloody well know.

    Best Wishes to you and yours for another year of passion, fighting and loving.

    Nobby
    Full Member

    Mark, know a few folk who are at GSK so will ask around – you never know, if enough people raise the question it might just end up at the right person.

    Keep on hoofing this ******* disease in the slats & shout if we can do anything else, even if it’s just a chat/coffee/beer/stupid stunt…..

    STAY BULLHEART.

    bullheart
    Free Member

    Jimmy/sandwich/teethgrinder et al; thank you, I’ll put the details regarding the drug up shortly – if the method of payment and despatch we’re trying doesn’t work out we’ll need a range of counter-plans….

    Ventoux – null

    null

    singletrackmind
    Full Member

    You know what to do
    Get the drugs
    Take the drugs
    Deal with the pain
    Hug your family

    Its not like its a new thing to do anymore. I sense a tiny amount of doubt , and battle weariness creeping in . Well you can stop that right now. Just think how fast you will be on a bike now you have lost a couple of stone when the new drugs do their thing
    I can offer no help in getting the drugs , but one route that might be open is to get a load of condoms, put the tablets inside. . . . . . . No seriously, if they are not banned then ask if anyone is going to India for work /pleasure who can buy them and bring ’em back ?

    postierich
    Free Member

    Stay strong Mark big love from the Munros in the Lakes!

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