Morning all, if I’m honest I don’t want to derail this thread in any way, but I think I need a very simplistic response to what might be an even more simple question and I think there are enough folk here that can do so to help!

I have a significant and sizeable tumour in my upper left thigh that has made walking and general transit very complex. I have no flexibility or power – my leg is redundant as a tool for pushing down or up. My mental health is on the floor as a result, and we are currently here at Centerparcs teaching our 4 and 7 year old girls how to ride, which is both amazing and terribley sad too.

If I was to buy a S/H Haibike or other ebike @ £1500 – £2K in the near future, would it enable me to ride with my girls at Bedgebury, say, just by the battery propulsion itself, and not my legs? I’m hugely embarrassed about having to ask this question, but want time with my girls doing something we all love, and knowing that selling my beloved Travers to afford what I think equates to ‘twist and go’ being a possible solution in the short term. Treat me gently folks!

… and he’s back, ruby slippers a’ rubbin’…

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 –

What a spanner…!

Yourdadwasthebullheart@gmail.com

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….

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!

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?

Honestly? Sault; I’ve had so much pain on this holiday that I wanted to make sure I was in a fit state to drive home on Friday, so went with the ‘easiest’ route.

Hello all,

I did it this morning. I won’t be doing it again…

Currently in the bath, negotiating with my bowels about potentially not making a scene at dinner tonight. There are photos on my FB page if someone who knows how the new forum works wants to put them up…

BH x

I won’t fail, I don’t think. I may well take some time though. Mountain bike is out, as I don’t have any with gears! Running a compact on my ‘Dale, so will probably switch to an Alivio 9spd cassette on the back to help as best as possible. Staying in Lorgues, so about three and a half hours away by car – I think I’ll get there for midnight, kip in the car, and get on the bike for 5:30am in order to finish before it gets really hot.

on and on – lovely offer, but we’re there from 10/8 to 25/8 so probably little time for you to plan. Besides, I wouldn’t want to punish you with my ‘snails pace’ tekkers….. !

I had a conversation with a guy from STW once upon a time – the one armed cyclist named J Materna – who became one of my close friends until he died of the same cancer I have. I was talking to him about some of the concerns about the JOGLE ride in 2010, and that I felt the route we’d picked had some nasty ups on it. It went a bit like this;

me: “it’s four weeks out of treatment fella. I look at those South West bits and I’m just not sure I can do it, they’re **** scary”

j: “maybe. But what if those hills are looking on as you approach them and are saying to each other ‘**** me, that’s that Bullheart fella, the one with the terminal rare cancer thing. I’ve heard he just doesn’t back down, regardless of what the other hills have put in front of him. He’s just too dumb to give in…”

me: “wow, do you think so? That’d be cool, yeah. Hang on, too dumb…!!?”

Got to give it a go, eh? Wouldn’t want to get to 95 and have regrets…

Thanks all!

No assists, lumping it all myself. I’d actually prefer the weather to be dire, because I’m fat. Didn’t even think about the gearing – what’d be the best rear cassette for a 9spd 105 set-up? Or should I go full-on MTB dinner plate….?

Assistant Head in an ASC school. Privileged to be so; my students are funny, ambitious and the masters of divergent thought. Best job I’ve ever had.

It’s the opening of a door, not the closing, I promise.

Email in profile

Donated. You are, quite simply, a remarkable and inspirational father. If there’s anything I can do that will alleviate your pain, please give me a shout.

http://road.cc/content/news/237721-cycling-communities-raise-£30k-week-fund-cyclists-cancer-treatment

My eldest and I are on a Daddy-daughter road trip back up to Yorkshire to see my negative equity rented money pit. We’ve just had breakfast, and she’s colouring in one of those free McD kids sheets. And without looking up she says;

“Hey, this is lovely dad. Thanks for letting me be here…”

My sentiments exactly.

Good morning all,

Let me apologise for yesterday – I said I would respond in full, but life got in the way. As a bit of background information, I’ve been on codeine for years; firstly for when they cut my right atrium out, and more recently when they removed my right lat dorsi in 2015. Both surgeries left me in habitual discomfort, but the ramping up in tumour sites over the last six months meant that I was popping too much. As a result I started to suffer from gastro stuff, which meant that a move to slow-release morphine was the best and most practical solution. However, my head was writing cheques my body refused to cash, and this resulted in me nearly puking, and tearing the door of my meds cupboard like a fat kid looking for eclairs….

I’m still a little foggy from the last few days, and all that has happened. I’m slowly trying to contact folk from here, LFGSS and FB, in order to thank them for their kindness and generosity. Even as I write this last sentence, I’m unable to express my feelings about what has happened adequately – I feel lost in my attempts to fully describe the impact of what we as a family have received in terms of financial and emotional support from you all. My kids have been puzzled at watching their dad check his phone, walk into the kitchen, and bawl loudly as a result. This continues when they ask me if I’m sad, and I explain that I’m actually incredibly happy. But then, how on earth do you transfer this information to two young kids; that the response of strangers has resulted in the person that protects them maybe having an outside chance to continue doing so? I take the easy option, giving them Chupa-chups and bunging Paw Patrol on the telly instead, as life is tough enough at the moment.

And yet, look at what has happened to my family and I over the last 36 hours. None of you will ever have an inkling as to how important your £5, £10, £25 or £K’s (unflippingbelieveably!!) are to me, my wife and our children. Yes, the money offers the opportunity to access something that has a better chance of keeping me here. But more importantly, to know you have value, and that there are folk in society that value a total strangers life over a beer, socialising, bike parts, holidays, a new **** car, etc, is the catalyst for staying here. Nine years ago I was given less than a year to live. The response from people, friends and strangers inclusive, was the thing that convinced me I wanted to stay here. I wasn’t wrong then, and I’m not wrong now – and that is down to you all.

Thank you. I give you my word, I’ll carry on **** cancer in the head with a brick for the foreseeable future.

Bullheart x

I’m a bit stunned, to be honest.

I intend to respond properly tomorrow. Thank you all, for everything.

Mark, Meg, Seren and Gwen x

This;

https://www.ebay.co.uk/itm/Suzuki-Ignis-GL-5-door-1-3-Petrol/173105483318?hash=item284de40e36:g:nKgAAOSwf15aX5lR

Dirt cheap eat to run and insure, bombproof and parts cost nowt. For £1200+ you can pick up a 4×4 version which really does work too!

Thank you my lovelies; remember though, worst things happen at sea.

I have seen the very best of humanity through this website Mark. I have experienced immeasurable kindness from remarkable people. Swallow your pride, be brave and take the advice and support given to you from the folk on here and allow someone else in my position to benefit from all the good a functioning forum can offer.

And do it quickly. I’ve got to use the Classifieds to raise funds for funeral costs.

Hold your horses Tonto – where and when did I mention that you and Cougar weren’t appreciated? I said that if I were Mark, I’d be letting you know how much I appreciated you both (and the unseen mods). Now clearly, you haven’t walked, so either he’s doing something right or you’re doormats, and I very much doubt it’s the latter.

My experiences of Mr Alker are not positive – but they are not definitive, a point your loyalty evidently counters. Two sides and all that…

Remember though; if something looks like shit, smells like shit and tastes like shit, it’s probably not a Lion Bar….*

* (relating to the Forum, not the owner)

I’ve just been given six months to live by my oncologist. Will it be before then?

[inserts appropriate dark/macabre/wistful/sobbing/laughing emoji]

[deletes for fear of it ending up in Ling thread through forum redirection error]

So yes, there are bugs and they will be fixed. in the meantime I’m sorry for the glitches but sometimes you have to rip everything down before you can build something better.

No he hasn’t Drac.

^^^^ this is bollocks. And it’s bollocks because a growing number of professionals on here that are in the industry are saying it is. And they’re not just whining, they’re repeatedly offering workable solutions that could limit the damage and salvage the sites reputation.

I don’t quite get the cold thing. I’m a bit muddled tonight. Could you explain?

It’ll be a cold day in Hell before Mark either (1) coughs to the ownership of having ballsed this whole thing up in an epic way (from concept to initial delivery to further, er, “developments”) and (2) offers any form of sincere apology. For the record, I’ve never had a problem with people miscalculating, getting things wrong, making mistakes, etc – everyone is allowed to do so. But some half-baked, vague, nonchalant statement (with more than a hint of defiance) issued on a self serving, ‘this is my sandpit’ style sticky thread that no-one can challenge you on isn’t the mark of a leader in my book.

However, I’ll bet my onions he’ll continue to wheel Cougar and Drac out as sacrificial lambs to take the flak. I’m not sure what maintains your loyalty gents, but if I was Mark I’d sure as hell be letting you know your value.

I’d now follow this serious post up with a funny meme/.gif but it’d probably break the forum. Let’s hope no butterflies flap their wings in the rainforests of South America, eh?

Looks like a Honda Prelude. About £35K worth of car if you were judging by looks alone.

E-motion; hired a fatbike from them, but they do a whole range of Ultegra/Di2 equipped road bikes too. Fantastic brother/sister combo running what is a very slick and customer-oriented business, with solid local knowledge. Couldn’t recommend them highly enough, and their Trip Advisor ratings are very good too (except for one – ask him about it!).

Hoping to to go back again this year.

<span style=”color: #444444; font-family: unset; font-style: italic; line-height: 15.360000610351563px; -webkit-text-size-adjust: auto;”><span style=”color: #444444; font-size: 17.600000381469727px; font-style: italic; -webkit-text-size-adjust: auto;”>I got a bollocking of what I thought was an amusing tongue-in-cheek little jibe on email which backfired badly.</span></span>

Just to check – you don’t get paid for being a mod, right? And you’re the one at the coal face, taking the flak for this and other forum-related issues? And the owner isn’t here, doing the same? And you’re receiving bollockings/chastisement from him for something you’ve said was ‘tongue in cheek’? And you’re role as a mod is to assess such things on a daily basis? But you’re not paid, and receiving bollockings from the owner, who by the very definition of others on here on several threads is ‘chippy’ and/or ‘sarcastic’ towards forum users?

Seems legit. 😶

I line-manage a lot of people. I don’t do it like that. I rarely agree with all of the mod-related decision making on here, but I have a grudging respect for Drac and Cougar for their attempts at getting it right. Sounds like a bit of a one-sided relationship to me.

[comes in from bike ride]

[looks at forum]

[sighs]

[goes back out for bike ride]

STW forum. Helping people off the internet since 2018.

Classic!

Who did you get to rebuild it? Was it the same firm that created Ling’s car website? I’m certainly hovering over the subscription button now – or at least I think I am (It’s behind a huge pixelated avatar of David Koresh or something…)

ASD isn’t like not having a limb. Or being paraplegic. Or weighing 400lbs.

Except it kind of is. The way my students have explained it to me is this. Imagine the worst feeling on Earth; fear, terror, extreme physical pain, high pitched noise, whatever. Multiply the brain stimulus and subsequent response to all of these fight/flight responses by ten. And then try to explain it to a cat. In Swahili.

For each of us, there is something that gets your goat, so to speak. For me it’s spiders; I have an uncontrollable flight response to them. That isn’t altered by everyone I meet, telling me (and later shouting in frustration) that spiders are great – regardless of how credible those individuals are. I just **** hate spiders, and anyone standing in my way will be levelled as I exit via the door, roof, wall etc. Irrational, but that’s how it is.

Everything is amplified when you have a SOCCOM diagnosis, purely because you cannot explain how you feel to others. Even when you do, via C & I interventions, task boards, etc, people still don’t understand the urgency or pain around a situation/issue. So then the labels come out – poor behaviour, disruptive, lazy – and a myth begins. Don’t get me wrong, behaviour is part of it. But even as a former professional Rugby player, I’m telling you that trying to get a young person with ASD from a car into a shop when something has affected them is harder than putting your arm up a cats arse.

And quickly on the other two points; blue badge for open heart surgery? I don’t even have on for chemotherapy; I’d be embarrassed! And previous guidelines back in the day for cardiac patients was to get off their arses and move about as quickly as possible if they didn’t want to die !

Hold the front page kids – I’m here! And it’s almost like I was born for this thread!

Assistant Headteacher in an ASD Residential School – tick.
Got cancer in my heart, which resulted in open heart surgery – tick.
Used to work for NHS as a Cardiac Rehab specialist – tick.

Zippy – I’VE GOT ALL THE GODDAMN ANSWERS BABY!!!

Oh, and if they can put a new window in that’d be great too!

Mine has been instructed to, as we’re trying to safe on funeral costs.

Every penny helps.

Best piece of advice I’ve received was from a guy who worked in Mountain Rescue. He said they wouldn’t send folk out to save others in shit kit. He recommended the high level Keela stuff, and between that and Paramo I’ve never looked back.

My Keela Soft-Shell is the best jacket I’ve ever owned – 9 years old now…

I can get the link to work; get anyone with a black-belt in Google Fu sort it?

My favourite 80’s car by some way.

https://www.carthrottle.com/post/why-the-mercedes-190-e-2-5-16-evo-ii-is-the-best-looking-car-ever/

I asked this question today in an interview for pastoral posts; I’m an AHT in a secondary school. I like to see answers that focus on the importance of ‘challenging others’ being a good thing, and an acknowledgement that good/effective leadership at any level can often arise from disagreements.

I’d be surprised if, in the course of your teaching career, there hasn’t been a time when you and your colleagues have disagreed about something; data, planning, curriculum, PP outcomes etc. Given how difficult working in education is for all nowadays, there is an inevitability to it happening. Outstanding leaders see this, and pre-empt it through empowerment and equity.

Magnets.

Thread closed.

Once again, the crown for the ‘King of Threads’ changes hands in the never ending battle of whatthefuckery, here on Planet STW.

Shithouse thread.

Needs more Ling.

3/10

Edit: *tip ‘o the hat to Bullheart. Always great to meet a fan…especially one who’s sheer bloody mindedness to hang on to life humbles me*

I’m still paying off the bathroom. I can’t go anywhere until that’s done. And whilst death might seem like sweet release from such trivialities, the other half appears to be able to communicate with ‘ the other side’…*

*mainly through whining and mithering.