Turning a scary place upside down.

A lovely friend commented this on one of my earlier blogs and it really got me thinking.  Had I really turned the scary thing that is childhood cancer upside down and if so why?

As soon as Felix was diagnosed, it struck me that we and maybe others had preconceived ideas about what childhood leukaemia is and what it would mean for us.  The image I had was of a young child, sat on a hospital bed with a feeding tube, with huge eyes looking sad, lonely and lost.  From the onset this bore no resemblance at all to Felix who, to us, is the epitome of youth, optimism and strength. I could and would not let this change despite the  diagnosis.

Felix’s blog has achieved that, it shows that cancer has not changed him.  He still loves football, he still likes to look good and enjoys the company of others.  Yes, there are bad days, but don’t we all have bad days?  No matter what though, he still has his sense of humour, a sense of rebellion and his infectious smile.  He doesn’t want sympathy and he definitely doesn’t want people worrying, this does upset him.  His brother asked him the other day what it felt like to have cancer, Felix replied “it’s just normal”.  What is there to fear and sympathise about that?

I’ve always supported the view that knowledge is power.  If I could share my new found knowledge and understanding of what it is like to have a child with cancer, then this information could bring about change.  As Kofi Annan argues, “Knowledge is power.  Information is liberating.  Education is the premise of progress, in every society, in every family.”  Writing this blog is liberating for me, as it unshackles me from the torment of emotions and feelings that my son’s cancer has created.  I also know that this peek inside a home with childhood cancer has invited others to question their opinions, views and beliefs about childhood cancer.  The beautiful comments I receive and honest conversations I have are a direct response to our reality, not a media contrived representation or image.  We are all challenging the assumptions we had and turning them on their heads.

Yes, a world with childhood cancer is a scary place but by dispelling and challenging the preconceived ideas we have, we can define the nature of the relationship with leukaemia.  Whilst cancer is living with us at the moment, we will not let it unnecessarily confine or limit us.  It is up to us to define what it is to have and live with childhood cancer.  And if that means turning this scary place upside down, we’ll enjoy every minute!


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