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Saturday, 8 March 2014

One year on.

 for anybody who is bereaved 

Our first anniversary

As my little wise Chloe would say Elizabeth Kubler-Ross "knows s**t".  If there is one person who I would recommend as the "go-to" person for coping with bereavement it would be her  Her writing is beautiful and uplifting.  It provides a familiar blanket to smother the pain and provides signposts to a kinder path. Sometimes, for me, grief feels so harsh and almost punishing.  That softness is so appreciated.  When my pain overwhelms and engulfs me, as it does, I tend to turn to her words for comfort.

So there I was arrogantly thinking that "I don't do anniversaries" and "I don't generally even know what day it is.  Everyday is difficult.  It's just another day.".  Bulls**t!  If only I had heeded Elizabeth's warning that even if we don't acknowledge an anniversary consciously; the sub-conscious will make damn sure we don't get away with it.  She refers to research from very young children in children's homes; children too young to really understand time.  On the day that marks the year that they were put into care; the children nearly always really struggle and their behaviour deteriorates sharply.

Their soul remembers the day; even if they don't.  God, if life wasn't difficult enough for these children.

Back to cancer - I remind myself that children in childrens' homes get cancer too and so do those from third world counties.  Just because you've already won the negative lottery of life and had an appalling start in life; doesn't mean that you won't get cancer too.  Great life isn't it.

  I heard many stories of young people coming in for cancer treatment with no parental of family support.  The mums and dads on the ward would do their best; but what ever happened when they went home?  This idea really haunts me.  This is also definitely worth a look  www.worldchildcancer.org.  Just a flick around this site makes me realise how much worse our journey could have been.  Accessing the proper medication for palliative care is a real challenge in some countries.  Jesus how horrendous would this be!

So one year on and my thoughts are coming together.  Our aim, to turn our pain into something inspirational, something positive, echoes in the background.  But there are so many questions.  Chloe was blessed in that she was so loved and so protected.  How can we use this passion, this energy to start our own little movement in her name. How do we help others and where should we focus?  So many people, so many young people, want to help.  All that passion; all that energy.  It needs to build and unite around something with clear objectives.

My background in communications tells me loud and clear "manage expectations!"  Start small and have achievable aims.  Yes we want to raise thousands for research, yes we want to help children in less developed countries.  Yes, yes, yes!!!  I flinch at my arrogance.  We just aren't big enough for that.  And yet "it takes just one person to change the world" - and even if we change the world in a tiny tiny way - make life a little better for just one child, one young person - maybe that's enough?

So Chloe's second Mum, Rosemary Ridgeway - my rock throughout the whole of Chloe's illness, death and way beyond - me and some of Chloe's dearest friends have set up our Foundation  Create for Chloe.  Our thoughts are taking shape and here are some of our musings/observations - Cancer Research has an appalling record for investing in cancers that affect young people and children.  Reminds me I need to cancel my monthly payments.  Teenage Cancer Trust is brilliant as are others; but  IMHO, larger organisations sometimes loose the passion and purpose that they are set up for and start serving the staff more than listening to the people they are trying to help. This isn't a criticism; just a fact of life.  So we want to start lots of conversations - with our local hospital The Royal Marsden, other charities big and small - where can we pump prime other projects that are failing because the funds are drying up - speak to the children, the teenagers.  Cancer is expensive; very expensive.  I've seen families loose their child and then their house because they had to give up work to care for their child.  I've seen children struggle to afford a prom dress as Mummy can't work any more.  God I've seen so much additional distress because a family was facing financial hardship on top of everything else.  We want to start by listening to people and seeing where our passion, our energy and our funds can help a tiny bit.  And I'd love to hear from anybody who reads my blog - NO project is too small - pls email me on debbie.binner@onetoonecomms.com.if you have any thoughts.

And in the meantime we will carry on "banging the policy drum".  Treatments that are 40 plus years old; access to new treatments denied to children and young people as they are "too risky" or "not commercially viable", 900 new drugs coming down the pipeline for cancer; NONE of these are for the cancers that affect children and young people....... So much to do.

I read about another small cancer charity the other day and it's catch line was "A small charity; with a big heart".  This sounds just perfect to me.

Keep you posted




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