Awareness of the BASTARD Childhood Cancers

untitledIn a bid to spread more awareness for Children’s Cancer Awareness Month, I need to travel back in time to an event which impacts my every action; my very being: my childhood cancer.  The photo shows me in the lovely and then very fashionable cheesecloth shirt and green skirt, during the summer my hair was growing back after 18 months of chemotherapy, and getting ready to start secondary school.

‘The cold, smelly, waiting room was empty; it was late in the evening.  I had been rushed up to London from my local hospital in Kent. I remember being given a band to wear around my wrist with my name and 3AB.  I didn’t realise it then but 3AB was to be a ward which would become my second home.  It would be somewhere I would spend many weeks.  I would have a new family there.  I would make so many new friends.

I also didn’t realise it would be a place of memories.  Forty one years on and I still remember the ward as if it were yesterday.  I can picture the various beds I spent time in; the kitchen where I made popcorn with the nurses and my fellow patient-friends; the playroom where I spent ages making flowers out of pencil shavings; and the treatment room where I received many tortuous treatments.  As I write, I can taste the toxic drugs flooding my veins, ready to speed through my body in a bid to destroy the bastard tumour that was filling the space between my fifth and sixth left ribs. My type: a Ewing’s Sarcoma,

            ‘A form of sarcoma usually affecting the shaft of a long bone in young adults’.

I was just nine years old. Statistics given to my family at that time were as follows:

Curability rate: 30-60%, Occurrence rate: 3-4% of all cancers. It was RARE. It was AGGRESSIVE.

1Photo shows the tumor attached to my ribs, which were removed along with it.

Ward 3AB at the Hospitals for Sick Children, lovingly and more commonly known as Great Ormond Street, deep in the heart of West Central London, was to be the place I called home for the next two years.  This is where Paul O’Grady’s Little Heroes TV programme is coming from.  Two years of chemotherapy, six weeks of radiotherapy, and major surgery were somehow slotted into my life amongst the dancing competitions and reading. I celebrated the Silver Jubilee with a fetching wig, and saw my siblings grow from toddlers to young children in that time.

Photo shows my chest after the tumour and ribs were removed, with small surgical clips (which still set the scanners off in airports!)2

My family was changed forever with the events which followed a seemingly minor accident in 1976.  There is no concrete proof that this caused what followed, but it was deemed highly likely by professionals at the time and my gut has always told me this was true.

Great Ormond Street would be in my ‘heart’ for the rest of my life. I still have check-ups relating to this cancer – I had one this Monday just gone – not directly about the cancer, but to check on some of the after effects. Someone said to me just last week that cancer and its effects, are lifelong. Something new regularly pops up, and often it is related to the original area or treatment. Nowadays I am treated at the University College London Hospital, which is just down the road from GOSH. I think I’m a little old to for GOSH now, although I still visit when I’m passing to sit in the beautiful St Christopher’s Chapel, for peace and solitude, to say thanks for allowing me to stay in this life. I understand my dad spent some time here when I was a child. He was tearful talking about it all at our wedding, in his speech. My treasured oncologist at GOSH, Dr Jon Pritchard was at our wedding. Sadly he is no longer with us – ironically taken some years back by a brain tumour.

This disease really is a BASTARD. It took my grandad, my nan, my father-in-law, my husband’s best friend, my best friend (just last year), and several other friends and family members. It has had us grieving constantly.

BUT it’s not all bad news. There are survivors, the world over, and we continue to fight every single day. We will not give up, we continue to tell our stories, to give others hope… my life since has been shaped by that day and made me who I am.  I am a fighter, a survivor…

To anyone who is fighting right now, may I send you hugs and prayers always.

lips

Check out my website www.sensingthesimplelife.com for more about me and my work

Published by

Dr Sandra Beale-Ellis

Freelance writer, author, educator and speaker. Sensing the simple life from an autistic perspective. Doctor of Education of pedagogy in autism. Qualified teacher of karate and dance. Student teacher of yoga. Clinically diagnosed Asperger's and childhood cancer survivor.

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