GIVING PLEASURE TO OTHERS

There is a cute little shop in this city called " Sugarplum Sweets" which makes lemon meringue cupcakes that are to die for. The girls and I went there for afternoon tea and I had one which had just been made. Gooey meringue, tangy lemon curd  and cake so fresh it collapsed in my hands and was shovelled straight into my mouth. I was in heaven.

The ability to create something, edible or otherwise, which gives pleasure to people is a gift. This morning I had breakfast with one of my oldest friends Anna. She is one of the most talented people I know. Not only is she an experienced teacher, she is also a published author of plays and songs for children. She has recently been commissioned to write a school song for a new college in Perth and this will be her third time doing such a job, such is her talent.

My big thrill today was to find out that an online Canadian chiropractic magazine had listed my blog under Arts and Entertainment. I am honoured that my writing is entertaining enough to receive this honour, even though the subject matter can be quite tense at times. Maybe it's an omen - first an online magazine, then a book publisher. Watch out Oprah and Ellen! Regardless, I am pleased that my writing gave sufficient pleasure to someone to be chosen.

http://paper.li/DrRichardKjaer/1313554978

And then there was the radio announcer, Ben Fordham, who responded to Ashton's tweet to ask his listeners to pray for her in the lead up to her 14th surgery on Friday. Such a simple task, which when completed gave her such happiness and pleasure and filled my eyes with tears of joy. He could have ignored it, but he didn't.

It really doesn't take much to make people happy and give them pleasure.

My greatest pleasure this week would be knowing that Ashton's surgery is successful. I pray for God to guide the doctors' hands and for our gift to be her improved health.


Till next time...xxxxxxxxxxxx

4 DAYS TO GO

OK...FOUR DAYS TO GO!!!

This Friday Ashton is back in surgery for work on the fistula in her neck. It's been a long three weeks waiting for this procedure and we are almost there. As she says its nerve wracking but we are so close now, we're keeping it all together.

Well, I'm drumming up support worldwide. Prayers have started everywhere and I'm hoping for the same feeling I've had before, of a world wide circle of prayer around her. After that as I said on Facebook and many times before, it's in God's hands.

Oh by the way... I tweeted the Pope. Yes he has a Twitter name @ pontifex, so I tweeted him and asked him to pray for my daughter. Will be over the moon if I get a reply.

The husband gets here in three days and then we are ready for the warrior support Ashton needs. I can't wait till he gets here. I really need him by my side. Ciara is working during the surgery. It's her way of keeping busy because waiting does do your head in.

Meanwhile, the book is going well and after this Friday I will finish it. It's rather surreal to revisit some of the last few months but also uplifting when I see the progress that has been made. Regardless  of whether I publish it or not, it's kept me busy and focused.

I may post quite a bit in the next couple of weeks. Hope you don't mind! I need to keep my anxiety levels down and writing is my way.

If you want to leave words of encouragement for my brave 20 year old, feel free and I will make sure she sees them. 25 days till her 21 st birthday and God willing all will be so much better by then .

Till next time...xxx

LIEBSTER AWARD

I had a lot of trouble getting to sleep one night, so when my husband was snoring, I grabbed my ipad for some entertainment.

What a surprise! Anima Choudhury (anima-choudhury.blogspot.com) had nominated me for "The Liebster Award."

What an honour! I had never heard of it before so I've pinched the next bit from Anima's blog to explain to you all.

History

The Liebster Award originated in Germany. The German word Liebster means sweetest, kindest, nicest, dearest, beloved, lovely, kind, pleasant, valued, cute, endearing, and welcome. In short, this award is given to the upcoming promising bloggers who have some worth-reading content and certainly have less than 200 followers as a recognition of their talent and as a way to greet them "welcome". This a small act of inspiration that might change a blogger's whole point of view, just like it changed mine. The Liebster Award is an award for Recognition. You would not get any money, or cup, or medal, or certificate; just a recognition which will give you a spot-light mark in this crowded blogging-market!

Another thing about this award is that this is "Pay it forward" award, like a 

chain-reaction. Once you have accepted the award, you have to search for other bloggers, who are emerging as new buds with some really promising content which you find worth reading. You can accept it, or you can let it go; no harm done. Still, I want to say that it might make someone else's day if you would accept it. However, if you want to accept The Liebster Award, you have to follow six simple rules which are:

I have said this before, I'm always amazed that people read my blog so to have someone acknowledge it in this way is such an honour! To get it at the start of a New Year is a good omen...fingers crossed.

Ok...let's play the game!  
11 Random Facts About Myself

1. I was born in England but live in Australia. My parents are Maltese.
2. My greatest wish is to be a perfect weight and to speak Italian fluently.
3. When I read a good book, I like to finish it in one sitting.
4. My favourite foods are all the ones I shouldn't eat.
5. I have seven sisters in law.
6. If I could have one wish it would be to have my dog Harry back.
7. My greatest achievements are my children
8. I make a mean apple pie
9. I am really an emotional weakling - if you hurt me I bruise and bleed.
10. I am very dissatisfied with my life at the moment and its upsetting me.

My questions to answer

1. Are you passionate about blogging? - yes I am, probably almost getting obsessive because I have far too much time on my hands at the moment.
2.  Where do you want to see yourself in next 10 year? I want to be financially secure and I want to be happy in the job I am doing. I want to be well travelled.
3. What is the source of your motivation? My motivation comes from my family and the situations we go through. I'm also a high achiever. I like to keep busy and being busy keeps me motivated.
4. What is the color of your eyes? brown
5. What is the motto of your life? when life gives you lemons, make lemonade.
6. What is your favorite book, and why? Too hard a question to answer. I love books - the words, the covers, the feel of them
7. Pizza or Wine? - pizza hands down
8. What is your dream-place you always wanted to visit? I have always 
9. wanted to travel to Italy and start at the top and work down the country, taking my time and learning the language as i go.
10. What is the worst fear of your life? My worst fear is that someone I love will die.
11. Do you think a blogger can make a change to this world? Change happens one person at a time - so yes!
12. Do you believe? or You think that humanity is going to nowhere? - I think we are losing some fundamentals of being a community. I dont think we're going nowhere...yet

BLOGS I AM NOMINATING

1.Hannah Heath

2. Olivia's Catastrophe 

3. The Keyboard Talk

4. A Geek and a teacher

5. My wife makes

6. Life.Love.Beauty.Paradise.

7.Amiey Laureen

8. Learning to love yourself

9.Keeping it real with Maureen Millier

10. Mom script

11. Adventurous Ruchi

YOUR QUESTIONS TO ANSWER:

1. Where are you from and what's the weather like?

2. Why blogging?

3. Who is your greatest writing inspiration?

4. What is the story behind your blog title?

5. What is your favourite ICECREAM flavour?

6. What do you know about Australia?

7. If you had one writing wish granted, what would you ask for?

8. Who would you invite to write an intro to your best seller?

9. What is the best gift you ever received?

10. What is the best advice you would give someone writing their first blog?

11. What sort of food represents you and why?

Congratulations to you all !!

 

How to Add the Badge on Your Blog:

The Badge

It's simple.

> Download the image given above 

> Go to Dashboard 

> Go to Layout 

> Add a Gadget 

> Find "Image"

> Chose file ( the badge you downloaded to your computer)

> Click on "Shrink to fit"

> Save

> Save arrangement 

TOO HOT TO BLOG VLOG

So, I look terrible today. My hair is in need of a colour and I've got no makeup on. Of all days, today I decide to do a video blog. I think the 41 degree heat has cooked my brain. Anyway today it was time to go to genetic services at King Edward hospital for Ashton to be tested for the Cowdens gene. She took it in her stride and I suppose it's done now and all we can do is wait and see. A positive result changes nothing , but would finally give a reason why the fistulas grow so rapidly. A negative result leaves a reason for her condition still a mystery, but means her risk for all the Cowden's related issues remains the same as the general population. There is no winning here.

Ten days to her next surgery. We are keeping busy and trying to laugh lots. Making these videos helped.

Nine weeks of waiting for a result! Oh well

Till next time...xxx

PS It took me absolute hours to work out how to upload the videos. Hope the links all work. You see...you can teach an old dog new tricks. Off to the hairdresser. Have a lovely day xxx

FRUSTRATION, PATIENCE AND BROWNIES

I have been staring at a computer screen for days trying to overcome the writers block which has overtaken me. You see I can't think straight anymore and I find I also can't talk without effort. I certainly can't be creative and to a certain extent creativity is required in a blog. At one stage I even considered deleting it all so that I wouldn't have to write any more.

This story you see is starting to take its toll on me. Waking up every day and facing what is in store is draining the heart out of me.

Last week we found out  that the fistula in Ashton's neck has grown considerably . You may remember that the doctor was on a mission to destroy this fistula back in November, when a problem in her thyroid stopped proceedings. Investigations followed and  plans were made to reassess in another year. Problem solved....or so I thought.

You would have thought it was then a simple case of getting back to the original plan. Hell no! First it took over two weeks for a report to reach Ashton's doctor. By that stage he was off on leave to welcome baby number 3. (!!!) Then it was Christmas. Then it was New Year and THEN he went on holidays.

Now we certainly don't begrudge him his down time. This doctor and his team work bloody hard. But when we finally got to a review early January and found out the fistula had grown significantly, we didn't expect to have to wait another 3 weeks to get to theatre.

Yes, I know about triage. I get triage, but I don't like it when my daughter's condition has become worse. But its pointless isn't it? Its pointless to moan because there is nothing I can say or do to influence the tight schedules and tight budgets  these doctors work under. All we can do is carry on and pray.

                                                      
And eat chocolate. A friend just brought me a plate of homemade brownies and they are to die for.

My support crew has gone into overdrive. My news feed and messenger is filled with  positivity and prayers and virtual cuddles. They can tell that I am close to breaking point. But...that is not an option.It never has been.

Last night I messaged another mother whose teenage son is going through a shockingly similar situation. I needed someone who gets it. She told me not to let the Devil get a foothold in my mind. Now I'm Catholic and we don't seem to talk much about the Devil, but for some reason this comment made sense. Don't let your mind be full of negative thoughts. Don't let these thoughts take over your thinking. Just remember God is on the case. 

 I get it.I've always got it. I just forget and lose hope every so often.

Today was no better. Ashton developed a headache overnight and though I suspect the assignment due today was a contributing factor, she has no option but to head to the ED and submit for more tests. Stress? Tension? Fistula ? Who knows? There is no extra blockage, so this time it might be a normal people's headache. Shame she can't manage it like a normal person would. Imagine if we all had to go to the ED everytime we had a headache. Saturday mornings would be crowded!

So that's the 19th almost done with and that means 18 days till surgery. Let's hope this fistula doesn't increase anymore in the meantime. Enough is enough.

Till next time...xxx

REACH OUT AND TOUCH

I hate to admit it but all of a sudden I'm sort of glad that my book was turned down last year. Why the change in heart you may ask? Well ...simple...what I'm now writing is already so much better. Sometimes I'm finding myself totally engrossed in the stories, so much so I forget I'm one of the leading characters. I guess it's surreal what this family has been through in the last ten years.

During my writing something has frequently crossed my mind. When someone you know has an illness or is going through some misfortune, I have always felt that making contact and offering help is the proper action to take. But what happens (like in our case) where our lives are a nonstop barrage of illnesses and misfortunes? What are people supposed to say or do then? I'm acutely aware that people must find us a bit hard sometimes. What do you say to us? What do you do for us? I have found in the last few years that its too hard for some people and they simply start to move away from us.

I know that often they move away not because they no longer care but because they don't know HOW to care the twentieth time round. OR they are scared of saying or doing the wrong thing. And I suppose scared you should be because in these situations emotions are often fragile, patience is limited and thoughtless comments are not easily tolerated. I myself admit to distancing myself from those who say the wrong thing at times when I have been at my lowest.I miss the company of these people but I don't miss their lack of empathy. Only  time will tell if those friendships can be salvaged, but at this rate too much water will have passed under the bridge for this to happen.

The correct thing to do when people are going through ongoing drama is to stay in contact. I emphasise this is my opinion but its one based on considerable experience. But there are some guidelines here, an etiquette which needs to be observed. No matter how good a friend you are, immediate family must come first. In our case the husband and I have nine siblings between us. Add in grandparents and our other daughter (who is priority number one) and you'll understand how hard it is to maintain contact with other people when a situation is playing out.

So what can you do if you find yourself in this situation? Firstly, do not take offence to any lack of contact from those experiencing the drama. Appreciate how physically and mentally exhausted they are. It is your job to keep in contact if you value the friendship - text, send an email, leave the occasional message on Facebook, send a card, drop over a meal in crisis times, offer to do shopping...you'll think of something.  It's not hard!

And I'm not sure if you know this or have experienced this yourself but sometimes the period soon after coming home from hospital can be just as hard. I think you cope during the drama with adrenalin and then it's over for a while and you crash. That's when a visitor who turns up with a bottle of wine or chocolate and company can be such a help.

I really never set out to write this but now it's done I hope it helps someone. Next time someone has a death in the family or is going through a medical drama, make contact. Reach out to them in whatever way you can. Do not say " I'll call you when everything's over". For some people ( like my family) there is no end date. Reach out now. Who knows? You might make someone's day.

Till next time...xxx

MY PHOTO SHOOT

Tomorrow I have a photo shoot. Photos of my body will be taken for the pleasure of a select few. I will wear the latest in fashion and later feast on the best the earth can provide.

Yer right!

Let's start that again. Tomorrow I have an appointment for a colonoscopy and endoscopy where all the photos taken will be of my insides, and seen by my doctor. Having already cancelled before Christmas, I have no option but to attend this one. Couture of the day will be your normal blue gown, where your bottom hangs out if you forget to hold it discreetly. And it won't be fine dining. It will be a sandwich and yoghurt. It's always a bloody sandwich and yoghurt.

But before we get to the sandwich and yoghurt phase, I need to get through today. Today is day 2 of preparation. Yesterday was "no fibre" day. No fruit, veg, grains, just some meat and white flour products. It's amazing how unappealing white bread is after years of multigrain. I swear it just melts inyour mouth and tastes like sugar. 

Today after a lovely breakfast of more sugar tasting bread it's a liquid only diet. So far so good but there are distant rumblings and I know it's going to be a long day, one that will culminate in a date with the toilet bowl.

Enter my least favourite drug in the universe - picoprep. Sorry Fresenius Kabi ( what a name), but I'm not a fan. I know it's necessary but honest to goodness, it's like a human vacuum cleaner in a pill. As it says on the package it does a

bowel evacuation. Oh the indignity of it all. I'd rather evacuate the premises.

Because I have far too much time on my hands my brain wanders in many directions. Why is the package green? Green has a strong emotional connection with safety according to Dr Google. Hmm I think a browny/yellow colour may have been more apt in the circumstances.

But marketing people are quite savvy for safety is indeed the reason why I will subject myself to this drug in a few hours. Those of you who have been with me on this blog for a while now may remember  my first date with the gastroenterologist who will perform my procedures 
tomorrow. When I woke from the procedure, he sat by my side and told me had never seen anything like it before. My gastrointestinal system is like a foreign country with waves and waves of what initially looked like polyps. He said that I had literally hundreds upon hundreds of polyps and luckily at that stage I didn't know that normal people freak out if they have just one. What he had just seen was the blanket of hamartomas common 
in Cowdens syndrome patients.

Hamartomas are benign growths. They are not malignant tumours but do  grow along with, and at the same rate as, the organ from whose tissue they are made. Unlike cancerous tumors, they rarely invade or compress surrounding structures but it can happen. It's not very scientific to say this, but in my family if it's rare that will be us. So best they are monitored.

Amidst the hamartomas, polyps can be (and in me have been) found. Thank God all benign so far. The risk of colon cancer in CS sufferers is about 9%. Not sure what it is in non CS people but it's high enough for me to make sure I'm tested and my hamartomas and polyps are monitored.

The time has come to have a stand off with a glass of something that looks like milk...gross...I hate milk. Expecting the salty water taste I experienced the last time I went through this ordeal, I am pleasantly surprised. It's lemon ... a bitter lemon taste. The concoction is drinkable and I knock it off quickly. Now to sit and wait...or was that wait to ...? Yes, I know...not funny. Believe me, I'm not laughing.

Can't wait till tomorrow is over.

Till next time...xxx