Monday, 21 November 2016


This is my clock in all it's real glory, smudges and reflections and always open for discussion. It doesn't resemble the "60 Minutes" stop watch any more than my dealing with CML was reflected in the fluff piece presented last night.

Do you remember when you were a kid and there were hidden little treasures in the Wheeties box? I was the middle kid, so if by chance the older brother didn't get in a steal it with a look of, ' If you say anything to Mum, I'll punch you in the face', and as he was bigger than a brick shithouse and pretty violent I believed him, and it actually fell by serendipity into my bowl, then I'd end up giving it to the baby sister, cos otherwise she'd do a bit of a hang-dog face and have a bit of a cry. The unequal distribution of the toy was only marginally less disappointing than the toy itself.

I reckon cereal manufacturers stopped putting plastic shit in the boxes cos you know it's unfashionable to allow kids to be disappointed these days, but people of my vintage are stronger for it. Yep we have been hardened to that empty guts feeling, and so hardly ever cry when we are faced with stuff that we find sad or unfair or just generally disappointing.

I have mentioned my, 'Oh Well' mantra. It helps get over silly little daily disappointments like a smidgen lack of froth on the cappuccino, 'Oh Well, never mind. Tomorrow is another day.' Or the lack of a pricetag on the wine you want at the booze shop, 'Oh well, there's plenty of others to choose from, or you could just find someone to ask for assistance if you have a lassoo and a megaphone.' Good luck with that.

My Basil plant is not thriving and that's disappointing cos I have been very kind to it, 'Oh Well'

My best linen trousers have had a blow out, 'Oh Well'

The novel I am reading ended rather predictably, 'Oh Well'

I forgot to push record on my favourite show, 'Oh Well'

I am sure you get the idea.

But last night's episode of "60 Minutes" has been just much harder to get over.

I watched it this morning online.

The lead story which had been advertised quite a lot on the tellie and in social media was about a pretty young woman who is preggie and has CML.

Silly old me. I thought for a millisecond that this might put CML centre stage and therefore explain stuff about it for the average Joe in the street, and selfishly I was looking forward to all those who viewed it and all those who discussed it, being better informed and aware. I was hoping that the difficulties people with CML face, might have been highlighted. Problems, like not being able to access disability aid because they only rate 5 points out of 20 on the government scale. 5/20 for an incurable cancer that is treated with oral chemo drugs whose side effects are often debilitating! What would count as 20/20 you ask, - well I believe that drug addicts get a perfect score. It seems that media attention is the only thing that makes the bureaucrats sit up and take notice. So I was hoping that 60 Minutes would go hard.

Problems CMLers  have purchasing travel insurance could have been worth a mention, when all too often regardless of how ridiculous it might seem, CMLer's claims for medical help during their holiday are denied cos whatever the problem, it was down to the CML and so not covered. Yep a bicycle accident was due to the CML, not the pothole, and difficulty breathing due to the CML, not the volcanic dust. So actually purchasing the policies is not a problem, but finalising a claim seems to be.

The only difficulty mentioned in the segment was delivered almost under the breath in the final bit where another woman, not the lead, said she was mostly well, except that some days she couldn't get out of bed.

I reckon the average Joe would now be none the wiser.

Chronic Myeloid Leukaemia  C.M.L

They could be forgiven for thinking that sufferers are all good looking girls who are bravely staring down an irritation, and that they go forward everyday full of optimism and good health and a full face of makeup, capable of doing any damn thing they set their minds to.

As that is not my reality, I had a little cry and the disappointment leaked out my eyes.

I don't routinely fall into a self pity hole and I don't think that's what washed my face this morning either.

I was just sorely disappointed with the opportunity lost.



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