Monthly Archives: November 2005

Yeah! I’m so happy because we (I actually don’t know what we’re called yet, but let’s just get it clear that when I say we I mean Me, Simon and Ben) finished the first draft of our short film tonight. It’s like 28 pages long which is great but shocking, that’s surely going to have to come down by about 8 pages. I also went out, in the pouring rain! Well I wasn’t in the rain for most of the time. I bought some milk (‘cos I had company, but now we have like 7 pints because Haley bought some too) and the new issue of Total Film and decided to get the re-rerelease (that’s right) of “I’m Not Okay” from My Chemical Romance after two of my friends wouldn’t shut up about them… Now I’m afraid I may join them! Nah, nothing to be frightened of, they’re a good band. So where was I? Ah yes, “Night Shift” was completed and we also debated on what to official call it. Rather than the Murder Mystery/Horror we set out to write it’s now turned into a Murder Mystery/Dark Comedy which means that “Night Shift” doesn’t really sound right.

Can’t think of anything else to type, too tired, must sleep……

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As you know I haven’t been keeping up to date with this thing but check out this news report about a three-year-old boy who has Erythropoietic Porphyria from Idaho in the United States. It was reported about over a year ago but I haven’t been keeping track of things as I said. What’s really freaky is we look kind of similar…

Nicholas Ashby | Me, Thomas McNab

The report goes onto say everything I’ve told you about in my site; blood transfusions, bone marrow transplants and enlarged organs such as the spleen. They mention if he doesn’t get a Bone Marrow Transplant that his life expectancy is only Eight to Ten-years-old which is EXACTLY what doctors told my parents when I was diagnosed. I know the United States has very different whether to the UK but surely by now I would have thought that doctors would have known more about Erythropoietic Porphyria to stop telling people they’ve only got a life expectancy of ten years. There’s no way I’m just a ‘special case’, surely I can’t be the oldest living person to suffer from it, can I? Damn, this has woken me up. It’s not everyday you read about someone else going through the exact same things as you did. The boy’s mum has set up a website so I’m going to try and see if I can contact them. Tell you more about it later if I do, see ya.

So what’s up? Well, I’m having a hell of a bad time with my fingers unfortunately. I can’t seem to go two weeks without an infection and that’s been since May! I’m having transfusions every two weeks now which is pissing me off a bit as I managed to last three weeks about a month ago and I thought things were looking up. Otherwise I’m feeling okay some days, not so okay others. I’m trying to get out at least once a week and I’m doing exercise every day. I’m also getting blisters on my feet which is weird since I never get blisters on my feet but I think it’s because of these new shoes… Well, it’s definitely not because of the sun! I don’t want to jinx anything so, touch wood, but apart from getting a new Hitman line back in April I haven’t been admitted to hospital once this year. Wow, I didn’t actually realise but that’s a great thing to be thankful for… Not that I celebrate Thanksgiving but if I did I would be thankful for that. I’m going to update with some pictures from Halloween last week so keep an eye out if they’re not already up.