This week’s hoo hah

So – there's been a bit of a hoohah this week, on the Myeloma UK website.

Which has a great facility that all of us poor sods and our families, carers etc use – the Discussion Forums. Where you can post questions ('does anyone know this hospital?' 'what can I expect now I've been put on X drug') etc. And which doesn't as yet have the benefit of any themes for the posts – so as there are only 15 slots on the front page when you open it, questions fairly rapidly get over taken by new ones coming in, and get consigned to pages further back (which no-one reads) unless people answer them, in which chase any answers make that entry shoot back up to the top of the front page again. There ar eprbably over 7,000posts in total.

So the dilemma: One woman, Roz Bennett, has been posting for months about her husband Michael. And basically using this common forum as a personal blog. So about 6 out of the 15 front page entries are from her: 'Michael not so well today', 'Michael coming home tomorrow', 'Michael phoned tonight' etc, Which is fucking annoying, as other people's entries are therefore getting shoved to page 2, 3 etc as she's over dominating the site.

So: I – 'mad, foolish, try and make the world a better place but at the risk of getting crapped on' sucker that I am – sent her a charmingly worded (oh yes I tried!) post, saying how interesting etc it was following her and M's story, really want to provide the best support for her, could she maybe consider posting in one place so easier to follow the thread and provide better feedback as a result' type of thing. Despite thinking ' look woman, this is a communal forum, other people aren't getting a look in, so this is the only fair option'.

And you can guess the rest: She flipped and posted a 'Goodbye this is my last post ever as I've been chased off the site' type of entry, then puts lots of stuff on about 'I'm disabled, can't get to hospital, this is my only lifeline'… guaranteed to make me and any other person feel desperately guitly for even having mentioned it! Cue lots of people asking her to stay on the site, me posting a huge apology, again reiterating that the idea was only to benefit her (brackets: and others in so doing… not even me as I don't bloody post on there, I just try and answer other people's questions to help out, arse!)

Then some grumpy old man has a huge personal pop at me 'don't listen to these Clare Scotty Scotts who come on here with their Under 50's group, taking over our site etc etc' – OUCH! Mr fucking chippy bastard. Cue: me upset, all my Under 50s chums outraged and sending emails of support, the MMUK staff removing his abusive post and putting up a reminder of how the site should be used to slap his wrist….

OHH WHAT A HOO HAH!!!!!! 

Much helped by one kind lady today who's tracked down my personal email and sent me a 'you were trying to do the best thing, well done you, and thanks for all the posts you've supported people with', which was very kind and nice to get! (Though typical that she didn't dare put that on the main site for all to see!!!!!)

So – I am Public Enemy No 1 for having set up the Under 50s and now for having inadvertently demonised a disabled woman… class. Still, having the Under 50s is a huge blessing – lots of us are in touch on a daily basis and its a massive bonus, so all in all – I tried.

It does set up the question about when is it better to try to do something for the good of all, even when you may get personally pilloried for it… vs the temptation to stick head in sand and hope it'll go away….. Haven;t quite got to the bottom of that one, and for every time I've tried it, its probably worked once in my favour for every 5 times its ballooned into a fecking disaster…but I still seem stupid enough to try! Did I have a Stem Cell transplant or a Lobotomy?

Am asking Santa for a tattoo of 'MUG' to go on forehead.. will nicely match the one of 'DRAGON' ON MY ARSE…. S xxxxx