WE'RE NOT SO DIFFERENT REALLY

The greatest gift I have ever been given is the right to be called a parent. It is a gift I have held close to my heart for over 21 years and one which I will never, ever stop being grateful for. I remember most parts of my daughters' childhoods- the births, the toilet training, the many firsts, the awards at

school, the dancing concerts, the squabbles with friends. The list is long and ingrained in my memory banks. Of course there are also events we could have done without. The falls off skateboards, the asthma years, the hearing impaired years, the hearing aids, the fight for support and recognition at school and of course Ashton's diagnosis with dural fistulas and consequently Cowden's syndrome. Life is never simple and you learn to take the good with the bad, adjust everything into some sort of workable programme and soldier on.

This morning I watched my 15 month old niece Isabella jump when a bird tweeted next to her. She was totally terrified and only calmed down because my sister in law and I kept making bird noises and laughing, showing her it wasn't a threat. It made me realise how we have the ability to create these tiny humans and are totally responsible for their care and learning. They are helpless without us.

The reason I am thinking about all this is because lately there have been an increasing number of stories in the media about young children. And I'm not talking about good stories. Deaths at the hands of parents, accidents, abductions and the heartbreaking pictures of a three year old refugee drowned while escaping from the horrors of his country, have been just too frequent.

It totally baffles me how anyone could hurt a child, worse still their own.
It totally baffles me how anyone could deny parents their child and the memories of his or her childhood.
It totally baffles me how people can be ok with not helping refugees, how they always have an argument to oppose anyone who has a heart and a conscience.

Children are so precious and it doesn't matter whether they are yours or someone else's, we all have a responsibility towards their safety, care and upbringing.

I remember praying to every saint I could remember to protect my daughter during surgery. I would have given anything and done anything  in exchange for her good health. It was a very intense feeling born out of love, fear and a desire to protect my child at all costs. How hard it must be for parents to put their children in a refugee boat knowing the risks involved. I wonder how often they promised God anything as long as their children were safe.

We're not so different really.
Till next time...xxx

HAPPY FATHER'S DAY

Dear Birds outside my window,

                

I'm not sure if you are aware of the time but it's only 4am and that is way too early to start all of that racket. In fact let me go so far as to say your tweeting has woken me up and I am NOT impressed. Yes I know it's spring and I know it's not so cold anymore but really it's still 4am!!!

Now look what you've done. I am wide awake. Thanks for nothing. Between your noise and someone else's snoring ( points to husband), this is it folks. I am officially awake.

And that's not really such a good idea because at 4 am I have the tendency to overthink. This week will bring two doctor's appointments; the week after will be three. One of the appointments next week is for Ashton. Yes, folks it's 3 months since we saw Dr Hot Stuff and this week it's catch up time. Just as I managed to get over my " something is bound to go wrong today " negativity, here we go again. Miss Ashton ( touch wood and reaches for bed head) has been well. She looks well, sounds well and feels well. That of course doesn't mean her pretty little brain is doing the right thing but we will take it anyway. She looked very proud of herself yesterday when she pointed out it's been 3 months. And so she should. Three months without incident is huge progress. Let's see what HS has to say about that!

Love

ST
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THE HUSBAND

FATHERS DAY in Australia is today September 6 and I would love to especially wish my father and husband a very happy Father's Day. They have both put up with lots over the years and I am eternally grateful for them both.  The girls and I would be lost without them both.

Ten things about my Dad:
1. He is still working as a doctor at age 76.
2. He has an awesome memory for anything that happened fifty years ago but not so much for what happened yesterday.
3. He diagnosed my Cowden's syndrome.
4. He knows every proverb ever written and will test you on your knowledge of them.
5. He is a grammatically, fastidious writer and has sworn not to die till I know the difference between its and it's. ( I do. I'm just testing him).
6. He is the second of eight kids and the only one to leave his homeland of Malta.
7. He is never wrong and on the odd chance he might be, he will spend hours looking for a loophole to make him right.
8. He knows the most random stuff about the most useless topics. Eg he is full bottle on POPES.
9. He can recite the catechism he learnt when he was a very young boy.

10. He used to dislike Australian rules football but somewhere along the years this changed and he became an expert on that too. At the football he knows every player's number!

My Dad is the best!

Till next time...xxx

SELFIE WITH MY DAD

ST

CUT ME UP

Increasingly in the last few years, more and more of my procedures have been done under local anaesthetic. It makes for a simpler day. You go into hospital fifteen minutes before your scheduled time. You are admitted in record time and sometimes ( like last week) you don't even have to wear a theatre gown. After the procedure, you get a nice coffee and biscuit and you get to drive yourself home. Simple? Sometimes.

On the agenda for this day was removal of a suspected lipoma ( fat tumour) in my right wrist and removal of a hard " something" on my scalp. I wanted them taken out quickly because I had an ear infection, was already feeling rotten and wanted to be back in my bed ASAP. Ear infections frequently torment me. The day before I had woken to throbbing ears, inflamed red knuckles and a red rash on my neck. A pharmacist later confirmed an allergy to the antibiotics being used to treat my ears. Not wanting to put myself through the rigmarole of an appointment with another GP, I thought I would suffer in silence for the next four days, till I could see my own GP.

So there I sat miserable as sin waiting to be called into theatre. 

" The nurses and I have decided that frequent fliers ( ie you) need to bring us cake from now on" said my plastic surgeon as I entered theatre. 

"Not a problem" I said. "one dozen Westcoast Eagles cupcakes coming up". 

He laughed because I know he is an avid fan of an opposing team.

"What's growing on my head?" I asked.

" With you, who knows?", he replied.

And so it began with the local anaesthetic in my wrist which hurt a bit and the local anaesthetic in my scalp which hurt a lot. Maybe it hurt more because my ears were already in pain. Who knows? I held back the tears and grit my teeth, but man it hurt. What finished me off was the sound of the scissors cutting through my scalp. I lay there thoroughly miserable and fully aware that my doctor was currently cutting out a bit of my scalp and sewing it up. I felt no pain but I could hear everything and it wasn't fun.

"Next time I'll have a general thanks", I said. 

No reply.

The rest of the day I felt like I had been run over by a truck. I was dizzy ( probably from my ears) and in pain on my head. The wrist was fine. 

A couple of days later my husband and I returned to Geraldton. Head and wrist pain were all gone but what was with the dizzies coming and going? I could hardly stand without losing my balance and if I was standing and feeling fine, in a split second this could change. My husband found this out the hard way when we stopped for food and drink and he had to catch me before I toppled over at the counter. This had to be more than just ears.

My GP changed my antibiotics and sent me off to have a multitude of blood tests and an ultrasound on my adrenal gland area. The guy doing my ultrasound said that adrenals are rarely seen in adults. I'm not sure what I was supposed to say to that. I am in the hands of my doctor. " If she wants an ultrasound of my adrenals he can bloody well find them", I thought.

Pathology tests are in - lipoma in wrist and cyst on scalp.

Blood tests are in - all good except calcium very low. That can make you dizzy if it's low. BINGO.

Ultrasound results not in - sonographer last seen hunting for adrenal glands.

                       

Fun and games

Till next time...xxx

  

JOIN HANDS TO BEAT CANCER

Daffodil Day

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This post is in memory of a 29 year old Cowden's syndrome man who passed away this week. RIP Michael Young. Your resilience and strength and your cheeky sense of humour will not be forgotten.

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Friday 28th August 2015

Show you care about beating cancer this Daffodil Day 

(http://www.cancer.org.au/get-involved/events/daffodil-day/)
Every day in Australia, around 350 people are told they have a life-threatening cancer. The survival rate for many common cancers has increased by 30% in the last two decades, but we still have a long way to go.
You can show you care about beating cancer this Daffodil Day by:

• Ordering merchandise that you can start selling now
• Volunteering on the day
• Getting your school involved
• Getting your workplace involved
• Donating 

Your support will help Cancer Council continue to fund research into the prevention, detection and treatment of cancer and its information and support services.
Get involved and show you care about beating cancer this Daffodil Day.
 ------------------------------------------------------------------------------------------------------------------
 
 A diagnosis of cancer is not always a life sentence, but it does have long lasting repercussions and whether you choose to admit it or not, it changes you. It changes the way you look at life and it makes you question whether things you once felt were so essential really are.

Most importantly it makes you want to have a better quality of life without sweating the small stuff and without toxic people draining your every moment.As the picture says, it pushes you to live.

Daffodil day is all about raising money to support people at various stages of their treatment. When I was going through my treatment I was able to receive some financial help and to use the help line in the middle of the night. This is often a difficult time for cancer patients and their thoughts.

This Friday, if you are in Australia, support Daffodil Day. Buy some flowers, a pin, a soft toy and be assured that the money is very well spent and much needed.

DID YOU KNOW?

 ---------------------------------------------------------------------------------------------------------------------

ALSO THIS FRIDAY: I HAVE DECIDED TO RELEASE MY BOOK ONE LUMP OR TWO?, THREE DAYS EARLY TO COINCIDE WITH DAFFODIL DAY. THANK YOU TO THOSE PEOPLE WHO HAVE SUPPORTED ME BY PRE-ORDERING THE BOOK. THE LINK IS JUST BELOW IF YOU WISH TO STILL ORDER.

YOU DO NOT REQUIRE A KINDLE BUT IF YOU DON'T HAVE ONE YOU WILL NEED A KINDLE READER DOWNLOADED TO YOUR DEVICE.


 ONE LUMP OR TWO?




Have a good week
Till next time...xxx

FINALLY SOME DIGNITY

This week was doctors week. As I live four and a half hours away I try to make appointments close together to make my life a bit easier. This week in three days I had four appointments scheduled for either myself or my children. Yes, you read correctly. I said four. This week was expenditure "plus" week, not just of money but also of my inner strength and perseverance. You see doctors week stresses me at the best of times. But I was expecting the worst this week because three out of four appointments required me to advocate for my condition, and one of those three had already insinuated that if she didn't know about it, it must not exist.

Advocating for Cowdens syndrome is physically and mentally exhausting. It is hard work. Why it needs to be, I have no idea. I don't expect every doctor to know about every single condition, but some doctors appear to take offence that you know something they don't. I belong to four online Cowdens syndrome groups so I am exposed to many different people with the syndrome. We're talking well over one hundred, not bad for a condition affecting 1 in 200 000. So it stands to reason that I may know a lot more about how this rare condition can manifest itself. I need to share to feel that I am receiving the right treatment. I need to be able to give some insight on what it's like to have this condition. It's not being a show off. It just is what it is - having the contacts.

My first appointment was with a new doctor. She also had a medical student sitting in with her. Alarm bells! Doctors with medical students don't like showing students what they don't know. But I couldn't be more wrong this time. She was pleasant and welcoming. She was delighted I had brought copies of recent blood tests and asked interested appropriate questions about Cowdens. She told her medical student that she loves learning from her patients and to embrace their knowledge. I just about fainted from the shock. Finally some dignity. She finished me off by saying that she can't begin to understand how hard it must be to continually have to advocate for myself. I was speechless.

Doctor number 2 was later that day. In all my career as a professional patient I have never come across a doctor like this one. Not only did he have star quality ( once a doctor to Nelson Mandela) but he was warm, funny and extremely knowledgeable. My younger daughter warmed to him immediately and I silently thanked God, because she doesn't do well at all with medical stuff. When the inevitable Cowdens medical history  arose he asked question after question. At one stage obviously impressed by my answers he asked me if I was a doctor. There was a moment of panic in my brain, followed by the feeling he could be thinking I was a smart arse. Again I was wrong. He complimented me on my knowledge and told me to never, ever stop learning and advocating for the condition. For the first time in a long time I was overwhelmed for all the right reasons. For the first time in ages I felt that there was hope. Later on Ciara told her sister that her doctor was impressed with Mum, because she knew lots of big words. If only she knows how those big words sometimes keep me awake at night.

Doctor number 3 was the big test. She was the one who gave us short shrift last time. She was the one that shut me down on everything I tried to say. She was the one who made me feel if she didn't know about it, it must not exist. In a welcome and surprise about face, she presented us with all the facts I had tried to share with her last time. I sat quietly but felt smug. I didn't even blink an eyelid when she presented Ashton with an article on Cowdens testing protocols. I actually felt like punching her but just felt relieved that my daughter would be getting what I know she needs. And it was ALL THE DOCTOR'S IDEA OF COURSE!!

So, there is hope and this week there has been dignity. Maybe one day a patient with Cowdens syndrome will walk into a GP and be told by them what needs to be done, not the opposite. When medical students thank you for educating them, yes there is hope for the future.

Till next time...xxx

AN ORANGE ADDICTION

" Orange is the New Black" seems to be everyone's favourite addictive piece of TV. As per usual, I am at least 100 light years behind everyone and have only just started it. Don't get me wrong, I knew it was there, because any time I tried speaking to my daughters, their eyes remained glued to the

screen and I  got a token nod and the standard " yes Mum" to any question or statement I asked.

How are you? Yes, Mum.

Shall we go grab a coffee and you pay? Yes, Mum. ( definitely something wrong!)

The sun is black today. Yes, Mum.

Would you like me to rip of all my clothes and run down the street? Yes, Mum.

OK. Last one was a trifle exaggerated but whatever it was had them and everyone around me hooked. So, finally curiosity killed this cat and I signed up for Netflix and OITNB. This was a BIG MISTAKE cos now I am totally and utterly addicted myself. My eldest daughter ( bless her heart) tried to protect me by warning me about the sexual elements of the programme. Why do young people always believe they invented sex? Unfortunately after an eternity teaching teenagers, very little scandalises me any more, this series included. But fascinated I definitely am.

What is it about other people's lives that make them so intriguing and why can I get very little done until I have seen every single episode of all three seasons of this series?  I cook with the iPad on. I wake up early and watch it in bed. I rip through my chores to watch another episode. I go to bed early so I can cuddle up to my iPad and see what happens next. Addiction is a problem and I freely admit it, I am addicted to this series, so much so that I dread what will happen to my morale when I finish season 3  and there is nothing left to watch.

The last time this happened was after my breast cancer surgery when my neighbour Ally walked in

with every episode of "Sex in the City" and told me it was scientifically proven therapy. She was so right that I never moved for a month. How had I never watched this on TV? I told you. I am always light years behind. I didn't even know what a Jimmy Choo or a Christian Louboutin  shoe was till then. I was a disgrace to the female race till that series.

Other people's lives often appear to be so much more interesting than your own.Its easy to get caught up in the escapism that life in a prison or a serious shoe fetish provides, because its so far from your reality that it provides a temporary break. Its good to escape. Its healthy. But after a while engaging back with the real world is necessary or it becomes a totally different issue. It becomes avoidance.

I meet a lot of bloggers online and sometimes they let you into a snippet of their lives. Everyone appears to be addicted to something - food, weird diets, religion, certain life styles. And yes some of them are interesting and some well are just not for me. I'll tell you one that is not for me -kale. My husband recently planted a lot of kale because everyone has been claiming how addicted to the health benefits of kale they are. I'm calling bullshit on that one right now. My body does not like kale. I do not like kale and I could easily provide wind energy to a small country if forced to eat it again. But some people are addicted to the stuff and good luck to them. I'll stick to a prison series. It doesn't effect my digestive system.

A lot of people used to tell me I was addicted to coke zero. Again, sorry to my mother and brother who think I consume 3 cans a day, but I actually consumed 1 can a day. The very nature of the word addiction implies a pleasurable act which becomes compulsive and interferes with ordinary life responsibilities, such as work. Drinking coke zero was pleasurable and compulsive but did not interfere with anything, or so I thought. I  stopped  months ago, of my own accord when I learned about the dangers of aspartame. Scientifically proven or not, anything you consume regularly that effects your body is an addiction and I don't need to risk anything stuffing up my body further. Its already a mess without aspartame in it. So, I ditched the chemical pleasure zone.

I'm sure some people will think there are good addictions. I'm not sure about whether such a thing exists but happy for you all to enlighten me. Tell me what you are addicted to and whether a good addiction is possible or whether it is an avoidance tactic for something deeper. 

I will leave you with that deep thought. 7 episodes to go.

Till next time...xxx

DIARY OF AN INSOMNIAC

SLEEP and I have a bad relationship, so much so that I am known to sometimes seek out pharmaceutical help, to stop insanity from lack of sleep, developing too early. With the life I lead , insanity IS going to develop, but I would like to prolong the inevitable for as long as I can.

For your enjoyment and understanding let me take you into a typical night in my life. This is last night,  a night with no pharmaceutical help. Read it and weep for me folks.

6pm - cooking dinner. Overwhelmed by wave of tiredness. Feeling quite light headed so dish out dinner and lie on couch to watch Home and Away on TV.

7.30pm - decide to head to bed as can hardly keep eyes open.

8pm - tucked into bed conversing with the world via iPad. Electric blanket is on and slowly drifting to sleep.

10 pm - husband comes to bed. Cuddled up to warm husband in warm bed and very sleepy.

10.05pm - phone text beeps x2. Ring tone belongs to daughter number 2. Instant panic that something is wrong. Text reads - " Mum, are you asleep?" I reply - " Who died? What did you kill? How much is it going to cost me? " As an afterthought I add " are you OK?". She replies " Very funny. It's OK. It can wait till morning." It obviously can't.

11pm - complete marathon texting session about study opportunities available for next year. Husband snoring. Last text is audio of Dad snoring for her enjoyment.

11.05pm - WHAT IS SHE GOING TO DO NEXT YEAR? Replay discussion in head and weigh up pros and cons as now wide awake. Elbow husband to stop snoring. Try to sleep but impossible with that racket.

12pm -  I do not need to pee. I do NOT need to pee.

12.10am - I need to pee.

12.15am - phone flashing on silent. Avoiding full glass of water, grab phone and glasses and dive under doona cover to read messages. Then check Facebook, Twitter, Google plus, emails and Instagram. May as well cos am wide awake!

2am - grab pillow and move to couch in lounge room. Get cosy as its freezing after the electric blanket.

2.05am - get up because light turns on outside. Instant fear of intruder. Rotating Hills Hoist ( washing line for all non Aussies) has triggered husband's new sensor light toy.

2.10am - start to replay every intruder story heard lately. Analyse every sound outside. Finally I  sleep.

3 am- I need to pee. Traipse back to bedroom narrowly missing vacuum cleaner I should have put away hours ago.

3.05am - wide awake. Body overcome by wind pains. Ouch, ouch and ouch. It seems my body doesn't like my home made quiche.

4am - still wide awake. Husband stirs and asks me how I slept. Resist crazy woman urge to strangle him.

4.30 am - husband gets up and heads to work for super early shift. I have the whole bed to myself and I still can't sleep.

5 am - get up to make warm drink. Come back to bed and knock over glass of water. Swear loudly.

5.30am - foul mood so start writing blog post. Neighbours go to work. Random thought - have  no idea what neighbour looks like. Should say hello in case of possible intruder.

6am - turn light off and finally go to sleep. Thank God I don't have a job to go to.

8am - WIDE AWAKE so get up and have breakfast. Totally and utterly wrecked.

8.30am - Back to bed.

12.00pm - GOOD MORNING! ....GOOD AFTERNOON?

My life is such fun.

Till next time...xxx

ST