THE HUMAN FACE OF COWDEN'S SYNDROME

Almost three years ago I decided to start blogging about my life with Cowden's syndrome (CS), a rare genetic disorder which increases my cancer risk because the gene that controls cell growth is damaged. I had no wish to write for " pity", but I did and still do have an urge to inform others, about what I feel is a condition that effects more people than the accepted risk (1 in 200 000) indicates. As the months unfolded and my blog grew, one of my own daughters was also diagnosed with CS. Luckily our second daughter tested negative, but the result is bittersweet when both are not negative.

Ready for surgery AGAIN

Up till now Ashton's journey with CS has been different to mine. Regular readers will recall sixteen brain procedures in 3 years and the overwhelming grief as cells multiplied without hesitation causing no end of life threatening problems. This condition continues to mutate and plague her but with excellent doctors we take one day at a time and we pray. We always pray.

Recently as I watched four doctors looking at an ultrasound picture of her thyroid with mouths hanging open in amazement, I realised this part of the story we would share. Like my thyroid, hers was huge and so full of nodules it looked like a visitor from an alien country had taken up residence in her neck. This was a goitre - a bloody big one - and as the surgeon said the need to remove it was a " no brainer". Ie it was coming out.

As Ashton has recently finished her university degree she is currently applying for jobs. The hospital could not guarantee a date as technically speaking there did not appear to be a need to rush. This was my first worry. I didn't want her to get a job and immediately have to take time off for surgery when her date arrived. After sharing a hotel room with her, I spoke to my husband as I had further worries. She appeared to be struggling to breathe properly. We decided to use the surgeon privately ( think $$$) to speed things up and within two weeks we had a surgery date.
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The risk of thyroid cancer in men and women with CS is estimated to be 35%. Thyroid cancer in CS is most commonly the follicular type but may also be the papillary type.  
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Yes, we agree doctor. It's a " no brainer".

Back from theatre and sound asleep

The thyroid gland, or simply the thyroid is one of the largest endocrine glands in the body, and consists of two connected lobes. It is found in the anterior neck, below the laryngeal prominence(Adam's apple). The thyroid gland controls rate of use of energy sources, protein synthesis, and controls the body's sensitivity to other hormones.These hormones regulate the growth and rate of function of many other systems in the body. T₃ and T₄ are synthesized from iodine and tyrosine. The thyroid also produces calcitonin, which plays a role in calcium homeostasis. ( thank you Wikipedia)

2 DAYS LATER: She is still in hospital because thyroid hormones and calcium levels are yet to stabilise. I remember this stage well. You get pins and needles in your fingers and toes and it is so uncomfortable. So she is on serious calcium therapy until the  doctor is happy that she is safe. Apart from the levels, the doctor told us that a normal thyroid weighs about 10g. Ashton's thyroid he guesses was about 80g - EIGHT TIMES ITS NORMAL SIZE. AND, it had wound around her esophagus. No wonder she was struggling to breathe.

DAY 2 - doing well

This is just part of our story.

This is the human face of Cowden's syndrome.

We await pathology results.

Till next time ...xxx

THE NEED TO SLEEP

There is a West Australian blogger calls Constance who calls all women "Queens". Every time I read one of her posts I smile and nod in agreeance. Yes she is right. All women are queens. And today I'm telling you that I am at my " queenie" best because I slept for eight hours straight. I got out of bed with a spring in my step, and dressed and took off for work, incident free...like a queen.

What a difference a good nights sleep makes. A doctor once told me that " sleep is the greatest

rejuvenator". How right she was! And thank God she was right, because she was ripping off a major part of my anatomy the next morning and imagine if she got THAT wrong ! Not even funny actually, is it?

Anyway, I digress. Back to talking about how blissful sleep is and how great life is when we get some. Yesterday was a bad day, that started with a bad night with no sleep. On top of that something was tearing my stomach into shreds and I felt awful. So I hopped back into bed but for some reason (probably pain) still could not sleep.

Later in the day when my eyeballs were hanging out of my face due to lack of sleep, I decided something needed to be done about the lack of food situation in the house. Why was this so urgent you may well ask. Who knows? But, in no state to get up, dress and go shopping, I had decided to grocery shop online instead.

Now I love online shopping and it's not the first time I've grocery shopped online, but it's been a while. In that time they've spruced up the website and in my sleep deprived state, this excited me. Yes folks, my life is so sad, the Woolworths app excited me.

So I started shopping:
" I'll have one of those...and one of those".
" two varieties of mince ...let's get both!"
" ooooo Kitkat on special....and chocolate gaiety biscuits...definitely.
" wine on special...don't mind if I do"

I was like a woman possessed.

Today after a lovely day of relief teaching ( see I used the word LOVELY and relief teaching in the same sentence cos I slept), the spring in my step took me home in anticipation of my food shopping being delivered to me. How exciting!

As the delivery lady helped me lug bag after bag into the house, the first waves of concern started to roll out. Why were there so many bags for just the two of us, especially when one of us was going to be away soon? Oh dear, what had I done?

Here is a part of the conversation that ensued between the husband and me. It may involve lying or stretching the truth or whatever you want to call it, so beware.

H: how many people are you buying food for?
Me: oh you never know. It's good to be prepared. ( avoid eye contact)
H: why have you bought two types of mince?
Me: They were both on special. ( in reality I haven't got a clue).
H: You've bought chocolate, chocolate biscuits, wine, more biscuits...why???
Me: ( look perplexed) oh really! Must be a Woolies mistake, but we'll keep it shall we ( thank God  he didn't see the ice-cream)
H: WHY IS THERE SO MUCH CHICKEN????
Me: ( look dumb, then turn around). Oh my God. I think I wanted 6 drumsticks, but I ordered 6 giant packets of drumsticks. We are going to be eating flipping chicken for months AND my freezer is now so full, I don't have room for everything.

So at this stage I should present you with some sage advice about things you shouldn't do while lacking sleep. This list would include signing documents, putting on makeup and obviously now internet shopping. So, here's the advice folks. SLEEP. It's a no brainer isn't it and without it, you do stupid things and you get to eat chicken drumsticks for two months.

If you have a good chicken recipe, link me to it PLEASE!!!

Till next time...xxx

IF ONLY IT COULD ALWAYS BE LIKE THIS

Usually everything "fun" in my life is organised to coincide with something else, and more often than not that " something else" is medically related. Part of that reason is that most of the things I classify as fun are in the city, a 4 1/2 hour drive away. While it's understandable, it's also a bit unfair because it means you're constantly waiting for the next incident or appointment, to squeeze in the latest musical, a get together with friends or a football match.

This week we turned things around a bit. For a while now my daughter and I had been talking about flying to Melbourne on the east coast of Australia, to watch our favourite football team in action. So, this year we finally did it. We finally planned something because WE wanted to, in a time frame WE wanted. Ironically of course there had to be a medical appointment in the days leading up to our trip. But, this was actually organised around our trip for a change. It might seem that I'm excited about nothing to some people, but when you have Cowden's syndrome so much control is taken from you, that any control you can have on your life becomes quite empowering.

Anyway the medical appointment was to

Passing time waiting for the doctor

check up on Ashton's thyroid, because she has a multinodular goitre that has to be monitored. Cowden's syndrome also carries an elevated risk for thyroid cancer, so regular checks are important. I lost my thyroid back in 2007 and with it any dreams of being a singer. Luckily I had none!

I'll talk more about her thyroid in a future blog post. Let's just for the moment say it's big, it's ugly, it's fascinating. So much so, that as they were ultrasounding her thyroid, no less than four doctors stood there mesmerised. Ashton got a bit touchy about this. She's quite protective of her organs.

Anyway, enough about thyroids for a while. This post is about making time for fun and scheduling it in if you have to, so I want to tell you a bit about what we've been up to in Melbourne.

Today we visited DFO South Wharf (shopping outlets), the Emporium ( more shopping) and Melbourne Central ( you guessed it...more shopping). Melbourne has a brilliant food culture so of course we ate great food . This includes my first ever chicken dumplings and the best curry puffs I've tasted in years. I've also ticked two things off the bucket list - macarons from Zumbo's and afternoon tea at Brunetti. Let me just tell you that the Nutella macarons and Italian strawberry biscuits with chinotto ( an Italian soft drink) are to die for. We ended the day with a drink in the bar after which Ashton left to go out with a friend and I left to tuck myself into bed with my iPad.

Was yummy

Miss Ashton relaxing with a beverage

I don't ask for much! Nice food...good coffee...that's all!

I'm absolutely exhausted and my feet ache, but there's a happiness with it all that has come from not thinking of lumps, thyroids or brains for a while. We've simply enjoyed life AND there is still tomorrow to come.

If only it could always be like this!

Till next time...xxx

IF MY COUCH COULD TALK

Yes, she is home!

Most of the space in our family room is taken up by our couch. It's burgundy coloured, big and comfy, the sort of couch you can get lost in and I love it. I'll take a new oven, fridge or washing machine any time. But my couch is special and I will hold onto it for as long as is possible. As I flopped down onto it yesterday I couldn't help but think that its time was however coming. It looks faded and worn and in some places where the upholstery is wrecked, it is a tad dangerous to sit in. Oh dear!

How does one get rid of a piece of furniture that has been such a crucial part of family life? If my couch could talk it would have lots to tell about family get togethers with cups of tea, home made scones and chocolate cake. It would tell you how everyone took their tea and who was most likely to spill their tea on the couch. It would also recount the heated discussions as we sat watching the latest TV shows we were all engrossed in, and how the husband who claimed never to watch " such rubbish", would surprisingly still know the ins and outs of the shows. And while we are at it, let's talk about the naps , long and short. The couch would tell you who slept there while sick and what they suffered from. It undoubtedly would remember a semi conscious child lying on it and a neighbour frantically trying to rouse her. And then there are my many nights suffering with insomnia, finally ending with some sleep on the couch.

Reading on the couch

Cuddles on the couch!

Yes, the couch is the keeper of the memories and the keeper of the secrets. It remembers the time Ciara tied the dog's leash to the side table, while she sat on the couch. When she moved, her devoted dog moved too, taking with him the table AND the aquarium on it. It also remembers the time homework was done on it while watching TV, and while Mum was out. Naughty kids, but the couch never told. It also never told about the head stands on it against the wall above. I wondered for years where the black marks came from!

The couch has been sat in, sat on and sat near. Its seated Grandad and his newspapers, kids watching Netflix, the neighbours over for a glass of wine and the friend who laughed because he couldn't get
out of it. It has been spilt on, vomited on and jumped on. I tried to be angry at the last one but I couldn't stop laughing. They were too cute! The couch also has magical properties. Don't believe me? Try looking for a missing tv remote. Look once. Look twice. Once you're convinced it's not hiding down the side of a cushion, someone else will find it there. If that's not magic, I don't know what is!

Yes, the couch has been a treasured part of our family, but as I said its time is unfortunately looming. Now to win the lottery to replace it!

Have a great week.

Till next time...xxx

BALI OR BUST?

I need a holiday and so does the husband. In fact he needs a holiday more than I do as the hours he

has been working of late are totally and utterly ridiculous. He assures me that the busy season is coming to an end. It had better be or I may become the first woman ever to be charged with kidnapping her husband.

I'm so envious of people who decide on a holiday, book it and go. I've heard of people who book today and are by a pool sipping cocktails within hours. How is this possible? Planning and taking a holiday when you have Cowden's Syndrome goes something like this:

1. We need a holiday. Let's check the calendar and see which dates are not taken up by doctors' appointments, checkups or hospitals. 
2. As my daughter also has Cowden's  I need to check her medical schedule too as she usually needs my support.
3. I've identified a " window of opportunity". Yahoo! There is actually a week no doctor wants to know me or her.
4. Where to go? Vietnam would be nice.
5. Google hospitals in Vietnam, just in case I need them. Not convinced anyone there would know about Cowden's syndrome so not really a safe choice.
6. Change location to Bali. Hospital situation still no good but only 3 hours flight to mainland Australia. Decide to risk it as have risked it before to this location.
7. Book flight.
8. Fill out "1 million" forms to attempt to get travel insurance. There is no box to tick for Cowden's syndrome or any box for anything close to my condition. I tick the box to ask some one to ring me.
9. I notice that if family member remaining home has medical condition that may require you to return home in an emergency, it needs to be declared.
10. I fill out another " million" forms about daughter's condition and tick the box again.
    
11. Accommodation and flights booked, but not insured.
12. Specialist rings to see if appointment can be moved back a week. This clashes with holiday so no go. Appointment rescheduled for 3 months time. I really needed that appointment.
13. Insurance writes back. They need more information from GP. Visit GP for said information. GP writes what I wrote in first place, but signs it doctor.
14. Insurance for me declined. Insurance in event of daughter requiring help possible, for the cost of a small island nation. Looks like I'm travelling uninsured once again, unless I break a leg or fall off something, like normal people do.
15. Packing medication. Going to Bali and they're a bit " tough" on drugs. All medication to be in original box for checking if needed. I take 6 different meds and a few vitamins. The boxes fill my case and I feel like a drug mule. Visions of every drug related news programme fill my mind.
16. Pack large sunscreen as no wish to increase my already greater melanoma risk. Now I really have little room left in suitcase.
    
17. Worry about allergies so pack large Phenergan, in original case of course. One holiday with no Phenergan ended up in Malaysian hospital. Would like to pack sleeping pills but decide to medicate with alcohol if desperate. It is a holiday after all.
18. Pack snacks in case of food intolerances to Balinese food. Unpack snacks as need to pack clothes. Remind myself Bali has supermarkets.
19. Chastise myself for not sending medic alert paper work off. Check if possible to receive medic alert before departure date. Pharmacist laughs and I take that as a no.
20. Compile list of my doctors contact numbers back home, in case of emergency. It's happened before so don't tell me to stop worrying.
21. Day before flight lie awake regretting decision to " risk it" in Bali. Worry about everything under the sun that could go wrong. Imagine myself on Channel 7 news as an emergency case flown to Perth.
22. Get on plane. 
23. Worry about daughters back home, the one with CS and the one without, for whole week I'm away. What are they not telling me?

I'm sure you all think I'm a hypochondriac by this stage. 

Only another person with a chronic condition will truly understand that it can never be " book, pack and go" for us. Anyway, I'm off to google hotels in Bali. Despite everything to worry about, we did have a nice time eventually.

Beautiful Bali

Till next time...xxx

SOME MISTAKES YOU JUST DON'T MAKE

Last week during my 50th birthday party I spent some time cutting up the beautiful cake my sister in law had made. She had used black dye on some of the fondant and as I cut the cake my hands became blacker and blacker. Not wishing to ruin my beautiful birthday dress, I took off into the bathroom to scrub my hands. A couple of minutes later my friend Carole stormed in and asked what I was doing in there. Thinking that she was making conversation as it was actually pretty obvious, I just laughed. But she persisted and told me that I needed "balls" to be in here and I needed to come out. It still took a bit longer, but eventually when she pointed behind me to the latrines the penny finally dropped. I was in the male bathroom. Thank goodness it was empty at the time. When I finally exited the bathroom, there was a crowd waiting to give me a rousing clap. How mean! It was a simple mistake!  

According to http://au.reachout.com/the-truth-about-mistakes making mistakes is a normal part of life and taking responsibility and facing up to our mistakes is a great way to learn and avoid doing the same thing again. Did I learn anything from my bathroom adventure? Yes. I learned that when I'm focused on something, I tend to have blinkers on - not a good habit really. Imagine the embarrassment if the bathroom had been full. According to my husband, I make these mistakes often. Leaving the lights on is his pet peeve. The reality is that I am so focused on what I am doing next, I just forget to turn those lights off! OK it needs to stop. I admit it. I am at fault here and I hereby promise to slow down, stop, think and play my part in reducing the cost of the power bill. 

Let's get serious now. Some mistakes are worse than others and some mistakes you just don't make.

Yesterday I drove home from the city. It is a four and a half hour road trip that can be quite tedious, but was actually lovely for a change. I saw lots on the way - paddocks full of stunning yellow canola crops, an emu feeding in an area that was rejuvenating from a bush fire  and crisp clear ocean views. It wasn't all nice. I also saw people driving like idiots possessed, driving with heads down (obviously checking out their phones) and people texting.These people are making huge mistakes while deliberately and intentionally breaking the law AND BOY AM I CROSS.

The first day I ever used a mobile phone, I needed to travel on the freeway in Perth. It rang while I was on the freeway and I was so excited by my first call, I reached down to answer it. Please be aware it was still legal to do so at the time. The next five minutes were madness. I made mistakes with my driving that put me and other drivers at risk. At one stage I even missed an exit and had to then go miles out of my way to return to my route. It was an eye opener and one I never repeated. I didn't need a law to tell me what to do. While driving, you do not use a phone.

Now usually mistakes are not a reflection on you as a person. I would hope that people don't judge my value by the fact I hung out in a male bathroom and left all the lights blazing in my house. But let me tell you straight. I am judging the folk who crossed my path yesterday and it's not in a good way, because how many times do you need to be told. The news, social media, magazines, newspapers etc are littered with stories, rules and laws about driving. There is no longer any excuse. These mistakes are serious and need to stop.

If you are one of the many people who still "play" with their phone while driving, stop it before you kill yourself or others. And quit making excuses for yourself. You do NOT have to take that call or reply to that text or find out what's happening in the world while driving. You just don't.

Usually, if you make mistakes, you acknowledge them, fix them and move on. It's actually not healthy to dwell on old resolved mistakes. But if you are one of the many still doing the wrong thing on the road, I would encourage you today to dwell and keep dwelling.Think about how quickly life could change. Then chuck your phone in the back seat out of reach while driving. Or better still put it in your bag and put the bag in the boot of the car.

I'm off to check that all the lights are off in the house. Let me know when it is safe to go back on the roads.

Till next time...xxx

The view on the drive home

TILL DEATH US DO PART

The other day while in a local supermarket I bumped into a woman I know and we started chatting. I

mentioned that the husband and I were coming up to our 25th wedding anniversary and she seemed genuinely shocked. Apparently (according to my friend), at the age of 50 I should be on my 2nd or 3rd relationship by now. Hmm...really?

25 years ago, two weeks after my 25th birthday I married my best friend. We made promises to each other and ended these vows with the words " till death us do part". We never imagined that our marriage would actually be littered with near death experiences which would test those vows. But as the regular readers of this blog know, this has been our lot in life with two people in this family with Cowden's syndrome.

Every medical challenge came and went and each time we braced ourselves, cried, prayed, yelled and wondered why us. Each time our relationship was tested and some times it was worse then others. Sometimes it would have been easier to walk away. From my perspective I was causing my husband pain and it broke my heart to see him suffer as he was. I often wanted to leave and protect him from further anguish. From his perspective, he couldn't fix it, it was horrible to see someone you love go through so much and it would have been so simple to get in the car and drive off. But that never happened because to give up on each other was never an option. 

A cousin of my husband said recently that she was surprised we were still together after all we'd been through. In reality the reason we are still together is because of all we've been through. It's made us tougher and more resilient.

But don't get me wrong here. Don't for a moment think we don't argue, disagree or fight. We are both hot blooded and prone to being argumentative. We both have faults. But what we've learnt is that these things are "small stuff". We've experienced the hard stuff well and truly so we know the difference. We've stood at the side of the big, black holes, contemplated jumping in and never did. After experiencing and surviving those times you learn to not sweat the small stuff. You yell and scream at each other, kiss each other goodnight and move on. You work arguments out because once upon a time you promised " till death us do part" and the "small stuff" isn't death. Not even close.

So because 25 years is a long time and my supermarket buddy thinks this is fast becoming a rarity, I thought I'd share with you what works for me. Maybe you can borrow or use one of my tips with your  partner. ( Please turn on your sense of humour before reading further).

1. Cultivate a deep belief that you're always right and that they are deeply misguided in thinking they are.
2. Learn to listen but not hear. I tend to use this when my husband is explaining at length why the car isn't working and how he's fixing it.
3. Hide the chocolate and wine for your own personal emergency use.
4. Occasionally do what makes them happy. ( Hi I'm Suzi and I love long drives in the countryside...wink, wink).
5. Drag them away for time out regularly. Leave town together and book into a nice hotel room that someone else has to clean. Eat nice food that someone else has to cook and use multiple plates that someone else will wash up.
6. Laugh and pull faces when partner is angry over nonsense. Please make sure it is nonsense first. Re- read point 1. Works with grumpy teenagers too.
7. Demand hugs and say " I love you" regularly.
8. For really serious " small stuff" ( eg he ate your chocolate stash), go through in your mind how you would kill him. Do not enact this plan. I repeat DO NOT ENACT THIS PLAN.
9. Hide occasionally and recharge alone. I love a coffee shop visit, my husband a massage.
10. You don't have to have the last word. Learn to shut up because remember point 1.

Happy anniversary sweetheart. I love you. I really do, TILL DEATH US DO PART and possibly for a long time after.

Till next time...xxx

ST