Monday, 2 February 2015

How far would you go for someone you love ?

This morning I had an early start for the first scan of my thigh (since I finished radiation) where the cancer was removed from my left thigh almost 12 months ago . Scanxiety is overwhelming.

I'm not sure when I'll get the results because they will be sent to the Sydney Radiation Oncologist at Westmead Hospital . She didn't expect I have anything to worry about and I hope she is 1000% right.

The MPNST - Malignant peripheral nerve sheath tumour - I had removed is directly related to neurofibromatosis a genetic condition I was born with, though not diagnosed until my early 20's. MPNST are persistent buggers and I hope mine has well and truly p*ssed off. I had several friends with terminal cancer related to their MPNST - it cuts like a knife reading their set backs and ongoing treatments.

Nothing like contemplating the what if's on a day you are also attending the funeral of a friend's mum who passed away from cancer and finishing reading Love Ypur Sister by Connie and Samuel Johnson (late last night).

Connie Johnson with stage 4 , terminal Breast Cancer writes so movingly of how she balances her time preventing other mums from facing a terminal diagnosis with spending the limited time she has left on earth with her little boys. It was so inspiring , enlightening and confronting and well worth a read.

Connie was diagnosed with breast cancer at 33 - after already surviving cancer twice at 12 & 22. Her breast cancer was so aggressive chemo and radiation were not successful at stopping it spreading.. This time she was told there was no cure and she will die.. As a young mum she was forced to prepare for her own death and most importantly - leaving behind her two young sons.
Faced with the devastating news that they would soon be separated forever, they made a pact to remind women to be breast aware and stop others having to say goodbye to those they love.

Their message is simple: 'Don't fall into the booby trap.' Samuel has travelled through every state and ridden more than 150,000 kilometres to raise awareness and raise research dollars.

Connie decided to send her brother, Sam, on a one-wheeled odyssey around Australia. to raise $1 million for the Garvan Research Foundation. The book weaves an inspiring story of  Samuel and his crew travelling through every state and riding more than 150,000 kilometres to raise awareness and raise research dollars.

Part memoir, part travel diary, part conversation the book is an incredible story of two remarkable Australians each sharing their tales, from childhood through to the finish line and beyond in a memorable and unique story. 
The take to heart to heart message - Love Your Sister shows just how far one man will go for his sister.

I still can't believe my husband agreed !

It also reminds me how far my husband and I will go for our son Sam. We'll be doing the pants drop and running through Sydney in our undies to raise money for Neurofibromatosis in less than 12 days on Valentine's day.

You ask what Neurofibromatosis is and put simply, it means our tumour suppressor does not properly function and every nerve cell in your body has the potential to become a tumour. As a result, it presents multiple health issues across a lifetime.

You might be sick of me asking - but this cause is so important because NF auses mostly benign tumours to grow on nerves - there is a 10% chance of malignancy and I was unfortunate.

NF is a lifelong medical condition and can affect many organs in the body, including the skin, eyes, bones, and nervous system. It has cut short many lives as well as causing severe facial disfigurement and other disfiguring cosmetic skin cafe au laits spots and bumps. The internal tumours are the biggest concern.

Your donation however small will help fund a cure and #endNF