Tuesday 13 August 2013

I'm really angry today

Aw this picture made me laugh; despite the fact that today I'm actually very angry.  So firstly what's so funny?  Well Chloe and Hannah used to tell me I look like Marge from the Simpsons - well actually they said it when I'd had my hair done.  Cost me an absolute fortune actually - best hairdresser in London.  But every time I'd come home they'd call me Marge.  Little monsters.  But I feel strangely fond of, and attached to, Marge. So I thought I'd check out her angry face - strangely looks just like me:) - well today at least.

Now for the anger.

-  there's a programme on tonight about a Mother who didn't want her child to be given radiotherapy for a brain tumour.  I'm not going to watch it; so I guess that everything I say will be from a base of ignorance.  I usually don't like commenting on things I haven't seen; but I'm grieving so what the hell.  AND in this respect I do speak with the "benefit" of some experience.  Apparently this poor Mother ran off with her son because she was scared of the treatment (check out the side effects of radiotherapy to the brain - doesn't make easy reading).  So far this sounds perfectly reasonable to me.  However, sounds like the side effects of the brain tumour would have been worse -  basically  death.  Eventually the Mother was persuaded to come back and have her child's brain fried; thereby avoiding death.  The Mother was also into "alternative therapies" and believed that the current health system was full of self serving individuals who were quite happy to maintain a status quo,  A few highlights from that status quo:  no new treatments for many childhood cancers for 30 years, no priority for seriously ill children and a general feeling that parents should just be grateful for the treatments they can offer.

I hope with all my heart that nobody I know and care about will ever ever have to visit this world. It is harsh, cruel and often seems without any common sense or compassion.  Believe, if you want, that if your child got ill all the stops would be pulled out to give them the treatment they needed.

But the truth is it won't and you won't be able to do a darn thing about it.  Health professionals will treat you with a kind of kindness but basically you will be dismissed and avoided.  Everything you say will be filtered though a lens of "poor love she's in denial and  just can't accept what's happening".  I can imagine what it feels like to be a person dealing with serious mental health problems - I think you'd get the same kind of reaction.  AND God forbid if you ever even mention alternative therapies or any "anti cancer" foodstuffs - then you really are labelled a "nutter".

Just for the record I don't do alternative therapies, anti-cancer diets, healing or anything else that isn't "conventional".  I like science and I like facts.  But I do understand why people do.  I totally understand when conventional medicine isn't giving you any answers and is treating you like a sub-human - you'd try anything.  It's your child for Christ's sake!  What would you do?

I dare say the tv programme will play the usual media trick of using black and white characters. Distraught Mother into alternative therapies = nutter.  Doctors and nurses doing their best and eventually "common sense" prevails.  Sadly it's all a little bit more complicated than that.  The medical establishment has a lot more questions to answer than that - and the worse thing is they all know they do too.

So a little plea to all my dear readers.  Please talk about, think about, find out about childhood cancer/young peoples' cancer.  The rates are going up and outcomes have stalled.  I know that life is hard enough without thinking about anything quite so depressing; but we do need a public debate about this.  I can't bring my beautiful daughter back but I hope to God that I can do a tiny bit to give another child a better shot at beating cancer without the terrible debilitating side effects caused by many of the current treatments.  PUBLIC AWARENESS is what is needed - otherwise the industry will carry on doing what it's doing. Our beautiful children matter far too much for that.

Love to my dear friends Dana and Darah from the US - you really are my heroes.

Thanks to a dear old friend who wrote to me today.  Your words were beautiful and really lifted my spirits.  Heartfelt words are sometimes all you need.

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