BEATING COWDENS SIDE BY SIDE

There have been so many times in the last

ten years when giving in to Cowdens syndrome would have been so easy. I could have quit my job at the first sign of disaster. I could have curled up in a ball and totally withdrawn from society. Or I could have sunk to even further depths of depression than I did. But I didn't. The psych calls this resilience, and she says I'm the queen of resilience. I have to admit, it doesn't always feel like that, but that is what she says so I'll wear it.

In the same way I've tried to teach my children that giving up is not an option to take lightly. If you want something you work for it. If you have a goal you work towards it. And, you don't give up unless you've exhausted every viable option. This has been an especially important lesson for Ashton, my eldest, who was also diagnosed with Cowdens syndrome early last year.

Part of my ability to cope comes from being of a certain age. I was therefore concerned in 2013 when Ashton was struck down with a debilitating brain condition. It's hard to expect a 19 year old to understand and to fight and to not give up. I remember telling her through each of the 16 brain procedures which ensued, that we would beat this and that her Dad and I would do everything in our power to help her through this. But from day to day, we never knew what we would find. It's hard to explain to someone who hasn't lived her life yet, that life is worth living for.

Anyone with a debilitating medical condition will tell you that life is never, ever the same again following diagnosis and that you will change as a person too. Friends who support you "en masse" at the start often dwindle with time, as they can not understand why you are not better yet. They run out of conversation and simply move on. Life therefore can get lonely but  you do learn to appreciate those that are there for the long haul with you more.

Doing day to day activities may become a challenge. In my situation working full time was no longer viable so casual employment became my income. Not the best pay but better than nothing! In Ashton's case, her brain procedures left considerable scarring which induced epilepsy. This resulted in the loss of her drivers licence, a bitter pill to swallow for a young woman. She could have crumbled, but instead she chose to find alternatives. It's how we have to roll.

The hardest challenge for my daughter in the last few years has been her studies. When all hell broke loose she was in the second year of a Bachelor of Arts degree. Fighting for her life she had no option but to withdraw. This was devastating for someone who had dreamt of going to university since childhood. But she fought, improved and returned...many times. Yes, relapses hindered her BUT she always went back, did a bit more and passed another unit. At one stage, after two craniotomies, she almost gave up, but she pushed through and would not let the condition win.

Tomorrow is a very special day in our family because tomorrow Ashton graduates from university. Despite extensive surgery, she has completed her degree and will stand up with other graduates at the University of Western Australia to be recognised. I am so proud I fear I may burst. I want to tell everyone how amazing a feat this is and how in the face of considerable adversity she has won  a gold medal. But instead I will sit quietly in the prestigious Winthrop Hall ( where I once graduated)
and cry a few quiet tears of joy and thanks.

We have this condition for life. There will be lots more ups and downs, but tomorrow will be a definite up. Tomorrow we are beating Cowdens side by side.

FROM THIS:

TO THIS

Till next time...xxxST

FIGHT LIKE A GLADIATOR

On most days I fight like a gladiator and deal with whatever life throws at me. But there is usually a point where everyone (even a gladiator) breaks. And funnily enough I always find that after managing big, scary issues it's usually something tiny and seemingly trivial that tips me over. I don't think I'm on my own in this regard. For example, today my heavily pregnant sister in all her gladiator splendour, almost broke over a zebra clip. She has battled through all the challenges of pregnancy with a two year old in tow and she's almost at the finish line. But her two year old's tantrum today about the choice of hair clip almost broke her. That and the fact that said toddler today also didn't like the fact that her shirt had armholes. Like I said, even a gladiator breaks sometimes!

So three weeks ago I was in my own gladiator splendour...

Daughter having thyroid removed? No problem!
Panic attacks while daughter in theatre? No problem! I'll push through.
Mother falls over, breaks shoulder in 3 spots and needs taking to hospital? We got this!
Mother admitted to hospital for 5 days because of breaks and flu. Still soldiering through!
Daughter 2 has mini medical drama...sorted .
I get flu ( worse than Mum)...pfft
I get laryngitis...who needs a voice anyway?
Husband gets flu ( worse than anybody in the universe).

And then one day while getting ready to fight another day, I looked in the mirror and that's when my gladiator armour dissolved. I looked bloody awful. My nose was red raw and looked about twice its normal size. My eyes were bloodshot and my skin was terribly blotchy, presumably from the stress which had totally taken over my body.

It was the giant nose that really did it! That was my breaking point. And I tell you crying about it didn't help, because the laryngitis made me sound even more pathetic than I looked.

I'd like to think I gave in gracefully. I let my daughter ring for a doctor. I stayed in bed and slept and slept and slept. I even took a holiday from my blog. As my psychologist would say "I self cared". The old me would have soldiered on and would never have had 5 minutes to look in a mirror.

The newer me knows better than to be beaten by a big, ugly, red nose. The newer me also knows that fighting like a gladiator for long periods will eventually make you break if you don't take a deep breath, take time out, reorient yourself and then eventually move on.

I'm feeling very wise and so much better.

Till next time...xxx

DON'T BE AN ASS

Everybody has a cross or two of some sort to bear. Some crosses are small, others huge. Some people

http://sd.keepcalm-o-matic.co.uk/i/don-t-be-an-ass.png

make crosses bigger than they have to be. Others seem to " manage" whatever is thrown at them with ease. But the thing is we are all weighed down by something.

 Last night I spent quite a while "chatting" to an old friend who flits in and out of my life regularly. His kids have exhausted him physically, mentally and I'm guessing financially. All are adults and all have mental health/ drug related issues. All I could do was listen and hope that God would give me the right words, even though nothing I could say would take away the pain. That one I know from experience. It is simply a large cross to bear and you just (as my friend said) " keep moving on". Incidentally he found time to ask about my crosses. Nice guy. That's why we're still friends after 30 years.

In a cross of a different kind, this morning I found that an ex student of mine was being trolled online. The woman and young mother is very talented and restores old furniture. It's not the sort of work that would appeal to everyone, but most people have a brain and keep their mouth shut if her work is not for them. Not today though. Two women went out of their way to tell this woman her work is rubbish and deserves to be binned. What good comes from hurting people like that? If you don't like it keep your mouth shut and move on. Adding crosses to the load this woman undoubtedly already has...not cool at all.

http://endiem.com/wp-content/uploads/2015/09/Donkey.jpg

And continuing on...as I left a shopping centre today a young mum with a look of death on her face and a toddler in a pram, side swiped me. The expression on her face never changed and nor did I get an apology. Hmm, I'm guessing that the child was the cause of the problem, the cross to bear. But, walking around ramming people with your pram isn't going to fix much is it? No need to be an ass to others just because you're having a bad day. 

And then I look at my family and our never ending health issues and how they impact on family who support us. For eight years, my younger daughter has really struggled with a sister and mother in and out of hospital and in and out of danger. It's been a huge cross to bear for one so young, but she continues to persevere with grace and resilience. Her life can be really tough sometimes but watch her interact with others and you would never know. While she shares the load of her crosses with those near and dear, she doesn't make others pay for them.

A friend just called in and I told her the subject of this post. She told me that 5 months ago her boss asked her to do a particular task. Once completed my friend received no feedback and secretly suspected her boss hadn't really given it a look. Today her boss told her in no uncertain terms that the work she did 5 MONTHS AGO was unsuitable. Not only was she spoken to inappropriately but now my friend has an additional cross to bear as she is already snowed under with other work. I'm "guessing" someone was in a bad mood or forgot to take her happy pills, but seriously 5 months later!!!

I'm in to morals lately, so here are the morals of these stories:

1. Having a cross to bear does not give you the right to be an ass. Be nice to each other, people! As the saying goes, " if you have nothing nice to say, say nothing". And if you decide to ignore this and talk anyway, speak to people with a respectful tone.
2. Your cross might be heavier than someone else's but it still doesn't give you the right to be an ass. Smiling, saying sorry for ramming people with your pram and asking after others are acceptable non- ass behaviours.
   

Let me know what you think in the comments.

Till next time...xxx

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