Hello folks!
It seems I always start my updates with an apology as to why I haven’t updated recently! For a change I think I’ll just lead into what’s been happening in the last five weeks.
The chemo, a four weekly trek to the Marsden in London, is now over. Despite their best attempts to fill me with the most toxic crap on the planet, I appear to be in fairly good order, both physically and psychologically. This doesn’t mean that the situation is easy; far from it. But I’m fairly happy with how things have gone. I was lucky not to have had some of the symptoms that other folk have had, and it looks like the constipation/squits conundrum and the skin issues have been the most trouble.
I count my blessings at this. During infusion you all sit in a room together and the pain that some really brave people are going through is fairly humbling. The flip-side to this is that your mind starts to play nasty tricks on you – does it not hurt because the chemo isn’t working?
The guy in the US with the same condition as me died on March 19th. He had posted on his blog on the 7th March that he’d never felt better, and that it felt so good to be having a break from chemo. And then bang – that’s it, gone. It came as a real blow to Meg and I. I’d spoken two him a few times via email, and then he was no longer there. Beside him I only knew of one other person with the same prognosis, but they don’t want to be contacted. As stupid as it sounds, my overriding emotion was that of loneliness. I couldn’t even ask his widow what he’d died of; was it related to the heart op? Was it the cancer? So a bit of a pisser really. But I decided to MTFU and carry on as normal.
Now my feet are something to behold. Think of the way shingles feels. Now multiply that by ten. Then add more wrinkles than a tortoise’ fanjita and you’re some way to picturing my feet at the moment. Wearing any kind of footwear is a bastard, SPDs especially – even the hem of my jeans brushing against my feet is agony. So I tend to wear flip-flops.
Now I work as a PE Teacher/SSCo (School Sports Co-ordinator) at a group of schools in South London. Two secondary, six primaries, an SEN and a PRU, and all very different and unique. Stick with it, you’ll see where I’m going…
Out of courtesy I asked my HoD to inform the head-teacher at one of my secondary schools (cannot be named for legal reasons) as to my need to wear flip-flops to help alleviate the discomfort. He received an email back three minutes later telling me that this would not be acceptable and that I should wear ‘thin cotton socks’ with my trainers instead in line with H & S compliance.
Now I know what you’re thinking. I should be angry, right? You couldn’t be more wrong! I’m overjoyed. You see, my condition is so rare that even the Marsden don’t know much about it. But it turns out that my HT is an expert in the field of angiosarcoma (that’s why he’s able to dole out such quality advice in just three minutes) and so he knows the solution to alleviating the pain – thin cotton socks! I just wish I’d thought of it. Ace eh? 👿 And this is the same place where I haven’t had a post op workplace assessment, a re-integration-back-into-work, a disability assessment, and where the HoD told me in an informal meeting that he could only support me so far as ‘he has to look out for number one’… (sigh) 😕
Despite all this sh*t I’m training hard for the summer. My sister, a crazy joiner and I are going to JOGLE for Sarcoma UK for 15 days in July and August. We’ll be supported by my wife in the van, and we hope to get as much support and sponsorship as we can. I really want to make a difference – this pissing disease might try and take me at some point (not by my reckoning though), but I’m going kick it squarely in the nuts first and raise funds for research programmes into sarcoma at the same time.
And so once again I turn to you lot. I need help. Sponsorship, support on route, a garden to pitch a tent in etc. If you’re a shop, we’re in dire need of kit sponsorship – bikes, spares, clothing etc; nothing is too small or insignificant. There should be a fair amount of press interest, and your logo will get plastered everywhere. I’m sorry if it sounds cheeky to try and scrounge stuff, but to be perfectly honest I’m not very experienced in fundraising for this type of event and I really don’t know what the etiquette is… All I can guarantee is that I won’t give up and I won’t let you down, I promise.
I’ve set up a JustGiving page for those of you that might like to make a donation. Please email onto your friends and colleagues – explain to them that some arse on a forum you frequent is trying to beat the odds and that he might just do it with their help. I’ve also started a website that should be online by the end of this week with the finalised route on it.
http://www.justgiving.com/TheBullheartJOGLE2010
Thanks for listening. Thanks for the continued messages of support. I wouldn’t have the courage to do this without you all.
Cheers,
Mark
