THE CONFUSION THAT IS BLOGGING

I have been having  a little break from my blog. Not because there is nothing to write about, but because I have been sick and everything has been too hard. I've actually been ill with normal people stuff - a gastro bug that even a week later is still making me feel a tad unwell.

Taking a break from writing gives you time to think and to reflect on certain issues, especially my blog. What do I see as the purpose of my blog? Where do I see it heading? Am I happy with the way it is at the moment?

I'll be honest. There have been times recently when I thought it was time to shut up shop. " Its run its course" I thought. But given time to think, I've realised quite a few things which I would like to share with you.

My life ( like anyone's) is full of diverse groups of people. Depending on the situation, the classification changes. Here is the classification for my blog. Can you work out which group you belong to?

1. THE FAITHFUL - those who know what you're going through because they've really been through it themselves. These people sometimes write very little if anything on your blog, but may send emoticons or virtual hugs as signs of support and speak to you at all hours of the day and night.
2.  THE CRITICS - these people tell me they used to read my blog but its too full of medical issues and it makes them sad and/or depressed. To these people I need to say " try living the life" and goodbye. I'm sorry I couldn't entertain you.
3. THE MOCKERS - These are the people who roll their eyes when something new is wrong and make me feel I've made it up or I'm on some sort of attention seeking mission. I'm also adding in here, those who say " oh go write a blog about it" in a sarcastic tone, when things are not going their way in an argument.
4.  THE PRIVACY MOB - those who constantly ask why I discuss my life on Facebook. I discuss it, because I have to for my sanity. YOU don't have to read it. You have choices and you can choose not to read my blog...but I will miss you.
5. THE BLOGGERS - those who read my blog because they fell over it in the blogosphere. They read it in hope that I will reciprocate and read their blog and I do. I read as many blogs as I can when I feel well. This last week not so many, but this coming week will see me out there again. Many of these bloggers leave me inspirational comments which makes getting through a hard day often easier.

The purpose of my blog has always been therapeutic. I feel some calmness when I can see my words on paper.For this reason alone I can not see me stopping yet. An additional purpose is to advocate for those with Cowden's Syndrome. Latest findings are that the condition may be much more prevalent than recently thought. Much more common than 1 in 200 000. Who knows what my words may spark in your lives? 

Where do I see this heading - well for the time being I am happy documenting my journey and that of my daughter's. At this stage we are still waiting for her Cowden's diagnosis. Mine is confirmed - well and truly.

Last Friday I was back in day surgery to have some strange growths removed from my abdomen and breast. Pretty sure they will be benign but there is always that doubt, once you have had a cancer diagnosis. Remember the nurse in a previous post who insisted on showing me my own tumour? She was back. When the doctor injected local anaesthetic into my breast he said "this one won't hurt". She looked perplexed so I piped up and said " because they're fake". She still looked bewildered so the doctor said " the real ones were trying to kill her". Love my doctor's wit.

And just before I sign off, I want to say that I have found another CS patient who lives in my state. That makes the total in our Australian group 35 and finally company in western australia. I hope the next member is not from much closer to home but if it is, we will deal with that too.

Till next time ...xxx

GERALDTON YOUTH - YES WE CAN

This week I thought I would adopt a project to help keep my feelings of depression at bay. I'm still not in a position to hold down a regular teaching job, but I thought maybe some community service may be helpful for me. It was hard to think of what I could realistically do, while constantly travelling between Geraldton and Perth, because if I could commit to regular hours I would be back in my job.

Then one night I had an idea after reading an outburst on a local social network site. There has been a lot of trouble in my town of late - break ins, car theft, damage of all sorts and assault. It seems to have increased significantly but the police say that there is really only a marginal increase in crime. They say social media reporting is spreading stories more quickly than ever before. Because of this more people are aware and it feels like we are living in a ghetto or a war zone.

I know there are problems in this town but I also feel that the people ( mainly youth) causing them are in the minority not the majority. I think there are so many good young people in this town who are doing great things and because of social media fanning the troubles, the young people doing the right things are being largely forgotten. It concerns me every time I return to Geraldton to hear our youth being spoken about so badly.

I worked as a teacher in this town from 1988-2013 and I raised both my daughters here. I think my teacher colleagues and I have done as good a job as possible with the youth of this town, often with limited resources, staffing, funding etc. I know many teachers who fund supplies for their classrooms from their own pockets to give kids the best.

And I think the kids in this town are the best. A lot of kids I have had the privilege of teaching have come from harsh backgrounds. Most have " come good" later in life. Most couldn't deal with school because of family and societal issues, but are having a go and playing their part in society now.

So, back to my project. It's a new facebook page called Geraldton Youth - yes we can. It's a celebration of the young people in this town who do great things and do them regularly. In the three days since I started this, we've had stories that range from kids with medical conditions who are attending school regardless, to new trainees in new jobs. We've had kids helping in the community and those giving excellent service in their place of work. We've even had two young entrepreneurs and their lemonade stall.

It's a new page. It may last a week, a month, a year. However long it lasts, its obvious from the responses I'm getting that people are worn out by the constant negativity in the local media  and uplifted by the simple, everyday stories of the good kids; the kids having a go and doing good things.

Let the police sort out the crime and by all means let's be involved in neighbourhood watch. But lets stop wallowing in all the bad stories and concentrate on the good for a while. No better place to start than with our kids.

Till next time...xxx

https://www.facebook.com/suzannaht/posts/10153056449505412

PLEASE HELP

This is not the sort of thing I would normally do, but just for this occasion I am making an exception. A young girl, one I got to know quite well when she was a student at the school I taught at, is in dire straits. Her bone cancer which resulted in an amputation last year, has re-appeared as what I presume are secondaries in her lungs.

There seems to be some possibility of treatment if her parents can get her to Germany. This requires $100 000 Australian to be possible. The town I live in is rallying behind young Suzy and her family. So far one fifth of the money needed has been raised in 24 hours, but the family is still a long way from their target.

She is 19 and while she lives, there is hope.

If you are in any way able to help, please consider doing so. Every small amount adds up.

http://www.gofundme.com/olr76whttp://www.gofundme.com/olr76w


\Till next time....xxx

FEMALE INSPIRATION

It was interesting to see all the media yesterday focus on International Women's Day. There were the accolades to women who deserve them ( Princess Diana, Angelina Jolie, Emma Watson etc )  and reading these accolades led to a very interesting discussion with my husband.

My husband is one of seven but is the only boy. He has grown up surrounded by women and is the father of two daughters himself. I was interested in which women he finds inspirational and I have to say his answers impressed me as they were not whom I thought he would choose.

His choices:

1. MalalaYousafzai- a Pakistani activist for female education and the youngest-ever Nobel Prize laureate. 
2. Julie Bishop -  Australian minister for foreign affairs



Dr Fiona Wood

3. Fiona Wood - Plastic surgeon specialising in burns victims 

This conversation obviously got me thinking about the women who had left a lasting impact on my life. I came up with a totally different list.

1. A nun at my school in Malta (name long forgotten) who taught my class about the importance of helping others and who made a big deal of us when my friends and I raised a tiny amount of money for a local orphanage. We would have been about seven and she brought the local priest in to compliment us.
2. A girl at the first school I attended in Sydney who sniggered at my intelligent answer to a teacher's question and fired in me a desire to do well always. She thought I was a dumb migrant. I thought she was dumb full stop.
3. My first piano teacher, a lady by the name of Pam Veary, who taught me to appreciate music.
4. My maths and Italian teachers at school - Jocelyn Quirke and Marina Chenaux - who also taught me to strive high and to " do as they said and not necessarily as they did".
5. My final teaching practicum supervisor Ms Hardacre who told me I would be a good teacher but not to burn out. ( she must have had a magic ball).

But there are other images that come to mind which remind me of the reality that my life is indeed one of privilege and one which requires service to others.

1. The women who worked in a carpet factory I visited in Tunisia . One caught my eye and smiled and when her supervisor wasn't watching I handed her some money. I have never seen money disappear down someone's shirt front so quickly.
2. A young 12 year old girl I met in Bali in 2010 who  melted my heart. She studied hard in the mornings and helped her parents selling postcards in the afternoon. I wish I had the ability to find her again.
3. Nina, a Balinese beauty therapist who despite her simple life, still reaches out and gives what she can to a young mother less girl in her village.
4. The homeless girl in Perth city. She looks like she's on drugs but she was also hungry and I cant stand seeing hungry kids. I bought her breakfast and she devoured it. Why do we have this problem in Perth?Why are our kids hungry?
5. +Ernie Dingo's mother who visited my classroom many years ago. She was one of the most mesmerising women I have ever met and she had my rowdy bunch of indigenous girls under control with one look. Moral of the story - family and keeping tabs on each other.

So, there you have it. That's my take on International women's day.  While we may give accolades to people who rightly deserve them, its important to remember there is so much more to be done in this world, where women are concerned.

Till next time...xxx

PS - if you enjoyed this post, please share it !

KEEP DREAMING

I feel like I've neglected my blog in the last week but there has been so much going on I just haven't had the time. But, I'm back!

I can't believe that Ashton's 21 st party has come and gone. What a night it was! One hundred friends and family gathered together to celebrate my daughter's birthday. It was amazing.

First I have to show you the cake! Oh my goodness this was more than what we expected - stunning to look at , tasty ( caramel and chocolate layers) and those flowers were works of art. I am showing you the photo from the business page to give them a free plug! Thank you +Sugarplum Sweets . I couldn't think of anyone better than Flavia and her staff for all my cake needs. Don't even try arguing with me about cake not being a need until you've tasted their lemon meringue cupcakes. It's a need!

Now, I have to show you the birthday girl. It's hard to believe that two days before the party, she woke up on her actual birthday in hospital. It's hard to believe that she endured a six hour procedure three days before the party. Why is it hard to believe? Because she looked like this...

I love my gorgeous girl and I was so delighted to see how happy she was all evening. After everything she has been through ( and unfortunately will continue to go through), she thoroughly deserved her night and to be made a fuss of.

Here's a few more happy snaps for you to enjoy!

Ciara and boyfriend Joel

Ashton, me, Ciara and Mark

Pride and Joy

Heaven on a stand

Oh yeah! Did I forget to tell you we also had a macaron centrepiece also made by +SugarplumSweets - flavours were redskin, blueberry and white chocolate. My eight year old niece kept asking all night if it was time to have one yet?

 Finally got home to a Geraldton two days after the party, after having been away from home for almost three weeks. I thought the weekend had been great but one more good thing was about happen!

When I started this blog back in October 2013, it was all about me and my condition. It was a way of coping with a diagnosis which nobody had ever heard of. I never realised how much I had missed writing until I started blogging. 

Then it seemed that others enjoyed my writing despite the story line being sad at times. People started telling me to write a book and slowly I warmed to the idea. It took a while because the subject matter is so painful and so tender, but I eventually put a collection of my best blogs together and sent them off. Nobody was interested!

Around New Year, Ciara took me to task. She told me that if JK Rowling could get turned down
many times, who was I to give up after a couple. My interest re-ignited, but this time I spent ages writing the blogs in a story format. This is how I coped waiting for Ashton's February 6 appointment.

The first two replies where rejections - again! Then I received a letter from a publisher in the UK. They wanted to see more!

Its been a long time since I have been this excited about anything! This letter does not mean they will publish the book. It just means they want to see more. It means that a group of editors across the world in the UK, think I might have a story to tell and that I CAN WRITE! WOW!

Even if it doesn't get published I will always have this moment. If it does get published, seeing my name on a book will be a childhood dream come true!

Till next time....xxx

HAPPY 21st TO MY F.E.D

Twenty one years ago I gave birth to a beautiful baby girl. She gave me quite a shock because she arrived five weeks and one day too early on a very humid night. When I woke her father at 11 pm to tell him my waters had broken, he didn't believe me at first. But he had no choice really and soon we were flying out the door to the hospital. We were so young and so naive and so inexperienced that we forgot to take a bag of anything with us. You know what I mean - clothes, toiletries, baby stuff! We had nothing with us. Looking back now it was hilarious!

That night a new midwife was doing her first shift in a new country hospital. She was told to expect a quiet night for her first night and within two hours she got an emergency. I remember her ringing the doctor who was not too pleased to be woken up. Apparently she made the huge mistake of ringing the doctor before examining me herself. The poor woman got yelled at but there was no doubt my baby was on its way, so she managed to squirrel out of any more doctor tongue lashings.

Like her sister two and a bit years later, she was too early to be delivered in a country town hospital and the Royal Flying Doctor plane had to come up from Perth to get me. Ashton was born the following day at 2.59 pm in between calls to my closest girlfriends.I have never seen such a look of delight on my husband's face as I saw that day.

The feeling of holding your first baby in your arms is quite inexplicable. The sudden rush of love
Iand wonder when you look down and finally meet your child can be compared to nothing else. You love all your children equally but the wonder of the first birth is just so special. It was so interesting to read another blogger #Lysa Wilds from #Welcome to My Circus describe exactly the same feelings in her recent post about her son, who coincidentally has a birthday this week too.

My daughter woke up in hospital on her 21 st birthday. She had surgery the day before which did not achieve what it set out to do, so it could have been a downer. But with the help of the nurses, doctors and friends and family we still made the best of the day. Eventually Ashton got discharged and home we went for flowers, cake and visits from family.

The health sagas are not over. We had hoped for the best of 21st presents. We had hoped to be de-fistulised. However, it wasn't to be this time.Once again I thank God for a doctor who knew when to stop rather than take risks.

So now its time to concentrate on a 21st party and on life. She will be reviewed by the doctors in a few months and a new plan of action will be made.We hold our collective breaths but till then life goes on.

Happy birthday to my favourite eldest daughter. 

Till next time...xxx

FESTIVAL OF ASHTON

So it's Sunday afternoon and I am having a lazy time. Last night a group of us went to see Ciara in her production called "A little rain must fall". It was lots of fun but with a message to take away about risks and consequences . I loved the colour, the activity, the loudness and the general storyline. The production is part of the "Perth Fringe Festival"and because there are so many acts going on, Ashton and I are going back tonight to see another production. We're actually going to see a comedian because I think before this week starts we  need a good belly laugh.


So let me catch you up on this family's sagas. This week as I've mentioned already is Ashton's  21st birthday. Her birthday is on Thursday and her party is next Saturday. We have approximately 90 to 100 people coming and it is going to be a fantastic night.

Only one thing stands between today and the rest of the week. No, it's not the fact that the uni year starts tomorrow. No, it's not the fact that some people still have no idea what to wear to the party. It's all about the fact that on Wednesday her surgery has been brought forward. What the hell!

You might remember that she still needs another operation. There is still some fistula in her jugular vein and the doctor (please bow) wanted to get her back into theatre as soon as possible to finish the procedure. The original date scheduled was March 20 and though it was a bit of a distance, we sort of got used to the idea.

Which is why we're all a little in shock that the procedure has been moved to Wednesday 25th February. She was given the option of saying yes I'll have it on the new date or no keep March 20. Rather hard call to make isn't it? Whichever decision you make it is full of negatives and positives. We all eventually decided health must come first, so she has opted to have the surgery on Wednesday 25th and will therefore be waking up in hospital on her 21st birthday. Never in my wildest dreams did I see my child waking up in a high dependency unit on her 21st birthday after her 15th major procedure. She has told the doctors that she expects flowers and cake. The bets are on as to whether they will follow through.

Just to see a smile on her face, Mark and I have already given her our birthday present. If you are not on my Facebook list you will not have seen these photos so I will include them because they have made made a lot of people smile and a couple cry. It's just so nice to see her happy.

We are so hopeful that this procedure will be the last BUT all we can do is hope that this will be true. This June it will have been two years since her diagnosis. That's a huge chunk out of her life and out of ours.

See you in the hospital.

Till next time… Xxx