SAME NONSENSE, DIFFERENT YEAR

Welcome to 2015 and welcome to my ongoing story of life with a rare genetic disorder called
Cowdens syndrome. With almost 700 people following my blog now, I feel a New Year is the time for a recap. To those of you who know me well, now may be the time for a cup of tea.

I am a 48 year old woman, married with two adult daughters and living in Western Australia. I am a passionate Westcoast Eagles (WCE) supporter,
love a good coffee and and can get lost in my iPad for hours. I love my family and once upon a time (seems like ages ago), I was a high school teacher.

But in 2009 when I was diagnosed with Cowdens syndrome my life changed dramatically. It's hard to put into words how it is different,but all I can say is that nothing has ever been the same since my diagnosis. I still love my WCE , my coffee and my iPad but I am different inside.

A lot of people who read my blog ask me about Cowdens. Basically it's a condition where the controls that stop cells growing aimlessly are faulty. In some this results in cancers and in many, growths or lumps of all descriptions. The problem with Cowdens is that the condition manifests itself differently in each person who has it. It is most confusing and most debilitating and no two people are the same.

The last few years have been a whirlwind. Countless surgeries to remove organs and tissue bursting with tumours, cancer not once but twice, a bilateral mastectomy and an immediate menopause following removal of ovaries. The list is seemingly endless.

I type it all now and I feel nothing. I don't feel anger and where once I felt sadness I now feel none. Maybe if anything I feel resignation. I certainly know that it's no point wasting my energy worrying about it all. Better to use the energy to deal with it all. And deal with it I have to...the lumps, the side effects, the doctors, the tests, the costs, the time off work, the ensuing anxiety and depression. Who has energy to waste on things which are done and dusted?

However, since mid 2013 my so called bravado has been severely tested. My eldest daughter ( age 19 at the time), was diagnosed with an aggressive dural fistula. For those who don't wade regularly in medico lingo, this basically means that unusual connections had been formed in her brain and these were dangerous.

Her story continues to unfold 18 months down the track. Though she is improved, she is not fixed and our new year will consist of soldiering on with more testing and more surgery. In 2015 she will also be tested for the gene that causes Cowdens syndrome. While the specialists who dealt with her early on felt there was no link to my diagnosis, her current specialist, her life saver, feels it is highly likely. Time will tell. A negative diagnosis is preferable and a positive diagnosis will not change treatment. It will merely answer the "why" which frequently hangs in the air.

There are two other members of this family. My youngest daughter is an actress and a soon to be first time university student. My husband is my strength and my rock. Both of them have had more to deal with than is fair. Sometimes, when health issues are not so pressing, they get a mention!

Thanks to this blog and social media, I have been able to link up with other CS patients worldwide. I can't begin to explain how exciting it was and continues to be to meet like people. Some have their own blogs and if you are interested their links appear frequently on mine. We are a close knit bunch despite the distance between us all. To this date I am yet to meet another in my state with this condition. However, a highlight of 2014 was starting the Cowdens Australia support group through facebook. Our membership is currently at 33. They are my " other" family.

I like to tell stories and hope you will stay with me and explore what 2015 has in store for me and my family. Please leave comments whenever you like. I read them all. Also, please share my posts whenever you can as it helps me get the word out about the syndrome.

So, basically that's it. You are welcome into my world and if you get something out of following me, that's great. Being inspirational however is not my goal. If I have to have a goal it would be to keep my whole head above the water for the whole year and preferably beyond.

  

"Onward and upward..." (C.S.LEWIS)

Till next time...xxx

ST