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

ON A FINAL NOTE FOR 2014

Dear God, we have to talk. 

For many years now I have got to this date and looked back in horror at the year that has been. Yet again, I find myself in this predicament. What's going on God? My year has been a bit like that joke going around, where someone asks Santa for a slim body and a fat purse and he gets it all mixed up, and the person gets a fat body and a slim purse.

I am feeling a tad ripped off AGAIN!

Now I know that you know what you're doing, but do you think I could maybe offer a few suggestions to guide you for next year...cos it must be difficult dealing with so many people and so many stories.

Firstly God, a bit of overall health in this family wouldn't go astray. It's not that we don't like hanging around hospitals checking out the cute medical students. It's just wearing a bit thin and it costs a small fortune in parking fees.

Second request if it's ok. I would like to stop feeling like I'm constantly waiting for the next thing to go wrong. It's sort of getting on my nerves and making me into a bigger stress head than I already am.

Thirdly a Lotto win must be on the cards...right? 

By the way God, here's a little something I thought I'd share with you cos it hasn't been ALL bad ALL the time. Here are some highlights from 2014.

2014 LUMPY CHRONICLES AWARDS

MOST POPULAR POST - Introducing Ashton GUEST BLOGGER ( my smarty pants daughter took out top post for the year on my blog. Over 1100 people read her posting.

MOST POPULAR ON GOOGLE PLUS - 'Twas the week before Christmas ( hard market to crack and suddenly I hit the jackpot).

MOST SURPRISING LOCATION WHERE BLOG IS READ - Ukraine ( ?)

LEAST SURPRISING LOCATION WHERE BLOG IS READ - Australia

HAPPIEST MEMORY IN 2014 - the Eagles and 96fm visit to our girl in hospital.

COMMUNITY SERVICE AWARD - +Telstra for iPad and modem to our girl

NICEST PEOPLE ON EARTH AWARD - +Midwest Charity begins at Home team

PERSON OF THE YEAR - Dr Hot Stuff 


Till next year...xxx
Please like and share.

ST

WHAT ARE YOUR NEW YEAR WISHES?

Today for a moment everything felt so " normal". The husband was mowing the lawn, the favourite youngest daughter ( FYD), home for a visit was cooking and I sat quietly sipping my new vanilla coffee from Bali. We attended church in the morning and had friends call over mid morning. We then had family and more friends come to visit in the afternoon and exchanged Christmas greetings and cards and caught up on all the gossip.

I remember telling students not to use the word " nice" because it was too general. Well, I'm about to break my own rule because today was " nice". It made me feel good. It made me feel normal. As I said to my sister in law, you could almost think the problems in this family are finished, that all is well and life is peaceful.

I wish that was the case. 

Christmas will come and then we will see in another year where only God knows what is in store for us with doctors, hospitals etc. In the meantime we wait and go through the motions of Christmas and New Year. 

This year I'm done with New Year's resolutions so there will be none from me. How can you keep resolutions when your life is continually messed about?  Instead of resolutions I'm compiling a list of my New Year's wishes. I've thought long and hard about these. What do you think?

For the FED ( favourite eldest daughter) I wish good health and a body that does what it should do. I wish her inner strength to continue and her determination to fight to never leave her. I wish her continued success in studies and for the world to know what she is capable of.

For the FYD I wish patience and self knowledge. I wish for her to have a family life that does not revolve around medical drama and for her own inner strength to deal with it, if this can't be granted. I wish her opportunities to sing, dance, act and everything that makes her and others around her happy.

For the husband I wish a never ending bottle of Bintang beer and more opportunities to rest. I wish the weight of the world off his shoulders and ( now I'm pushing it), a money tree to grow in the back yard.

For myself I wish stamina to last the distance, even when the end posts are moved. I wish patience to accept what I can't control or change and the energy to push on regardless.

I hope you have the chance to make some wishes of your own.

Till next time...xxx