WE STRUGGLE BUT WE DON'T QUIT- GUEST POST 4

My intention in producing this series has been to highlight the coping mechanisms of people with a variety of rare diseases. So far the stories have only been from people who have Cowden's syndrome (CS). This (as you know) is a condition close to my heart. Today following a question I got from one of my readers, I'd like to introduce Robert and Adrian to give a male perspective. Robert is American and Adrian is Australian.

The question I was asked was " does this condition affect males"? Well yes it does. Males and females with CS are affected in equal numbers but the literature indicates that males are more likely to develop conditions like thyroid cancer while females are more likely to develop breast cancer. Otherwise the syndrome appears to affect people of all races and ethnicities just as equally.

Thanks to Robert and Adrian for sharing their stories today xxx

INTRODUCING ROBERT

My name is Robert and I am a 55  year old male married with one son. We live in Detroit, USA.

As humans go we have around 25,000 genes.  I was born with a mutation or quirk in my Pten gene. This mutation predisposes me to have some forms of cancer. This doesn't mean I will get cancer, just that my risk is greater. My condition ( Cowden's syndrome) essentially lies in a grey area. Not much is known about it. 

Robert

 My main calling in life is helping people, mainly I guess because of some of the hospital stays I have had in the past.  A few years after high school I got a few jobs in the health care field. It filled my need to help people. The one job that stood out was the orderly position I had at the local hospital .The downside to taking care of people in the hospital is unfortunately they're sick and eventually I got sick. 

Being new to the job I wanted to get back to the job I enjoyed working at pretty quickly. Well, I came back to the job too fast and ended up in the same hospital I worked at. Well things got worse before they got better.  I went home about 3 weeks later but in that time I had contracted two different viruses.  No one could even start to guess what genetically might be the cause of all this. I eventually ended up with a hole in my throat (tracheostomy) just so I could breathe.

I ended up losing my job as I could not keep up with the work and the ongoing effects of the tracheostomy. I also couldn't deal with a high risk environment where I could catch anything around me.

 How I cope with the syndrome is by taking one day at a time and if I feel like I am on the rollercoaster from hell, I just try to focus on knowing it will stop sooner or later. I also enjoy working out to the best of my ability.

INTRODUCING ADRIAN

Hi I'm Adrian and I live on the east coast of Australia.
  

Throughout my whole life I have always had health issues and I was told I would never be able to do much. Did I prove them wrong!

On the 14^th of April 2014, I was diagnosed with Cowden’s Syndrome. Throughout my whole life I struggled with various medical issues and no one could ever find a cause of all of my problems. From the age of 8 I was in and out of hospital every year. I had problems with my right leg growing multiple tumours which were called angiomyomas.This was so serious that it even came to a stage where the surgeons told my parents that I may lose the leg.

Now at the age of 45 and 2 years into CS, I have learnt so much about myself and honestly the main things that keep me going are my boys.

Adrian and his boys

Without these two little men I think my body and brain would have given up some time ago. Now do not get me wrong I would have never done anything silly, but my day to day activities are made so much easier because of them When my now 4yr old comes up to me and says Daddy needs a hug so he can feel better, that in my opinion is the best medicine a person can get. Yes the weekly doctor’s appointments get up my nose with having to explain Cowden’s and how it affects me to every so called expert . But my boy’s rock. They are my life, they are why I am here and they are my way of coping with Cowden’s.

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And on that note I'll leave you with a cheeky photo from Adrian's boys. Have a great week,

Till next time...xxx
ST

WE STRUGGLE BUT WE DON'T QUIT - GUEST POST 3

Over 600 people have read the first two posts in " We struggle but we don't quit" series. This shows me that people need these stories of courage and resilience.

Egbertine

Today I'd like to introduce you to my friend Egbertine. Egbertine is from Amsterdam and we first met in an online support group for people with Cowden's syndrome. Egbertine is a breath of fresh air, always full of compliments and always supportive of others. She is also very brave writing in a language that is not her native tongue. I thank both her and her husband for their contribution today.

A WIFE SPEAKS

After  many visits to the local hospital, the words finally came out of the doctors mouth “You have cancer! Cancer? Yes it was to be my curse and I  was going to have to say goodbye to everything that makes a lady a woman to survive. This was going to be very difficult. My head kept filling with questions... Am I dying ? No children? Would my husband, a real family man  stay with me? On top of this, the doctor had also discovered something else in my blood, something very ,very rare. But he wouldn’t be drawn into it yet as he wanted  do more research.

I had long talk with my husband and we realised that “separating" was not a option for us, and we would make the best of it all. The day  finally came for the operation  and my husband left me in the hospital. What I remember after was pain and realisation that I was  saying goodbye to periods forever.

Things did not get better. They got worse. With the next visit to my doctor after my release from hospital, I found he had discovered something new in my stomach. He was also prepared to discuss those blood results. I had been diagnosed with “ Cowden’s syndrome” and my stomach had to be removed or else  I had only two years to live. A little too short in my opinion !

One thing that keeps me going are my animals. They are my life savers so every  year that’s why I do something for  them! One year  I climbed a mountain  and another year I wrote a  book. All the money I raised was for the people who take care off these  little fluff balls!! This year we are organising a big fun -run for all people. It does not matter if you are in a wheel-chair or whatever , you are welcome to take part in this event! What we want to do is make a shelter for those animals who haven't got a chance anymore. We are asking old-peoples  homes to come and  care for the animals. It’s hoped loneliness in the elderly will be helped too, as well as saving the fluff balls.

Egbertine and her friend at work

My stomach has now been removed for nine years and my life had to start over again. I had to learn how to eat again and sometimes this meant I had to throw up in the most ridiculous places. I also had to deal with new surprises from my body, the latest surprise and challenge being epilepsy! Last week my husband had to call the emergency 112 to rescue me. Yes it’s frightening but I still believe that life is more than this and we both have lots more to offer each other.

A HUSBAND SPEAKS

My wife asked me to write a piece to accompany hers, about what it is like to be affected by the terrible disease cancer and Cowden’s syndrome. This is very hard for me. We deal constantly with hospitals and investigations and you deal with love and hope that one day a cure is found for your loved ones and mine.

Sometimes it is indeed difficult for us to have to wait for results. When they are good we become  happy again. Unfortunately  there are also difficult moments. Luckily my workplace is very supportive and nothing is a problem when things are going bad. They are very compassionate people.

I am sometimes sad that I have to deal with this. Fortunately I have several hobbies  such as photographing  our old city of Amsterdam and bike riding for hours, to help me keep my head above water. This is important for me to handle the emotions I go through so I can cheer my partner up, even when I feel helpless. Good friends and colleagues at work are also important to me, as they allow me to offload my story when I need to.

I wish I could tell the future but I can’t. All I can hope for is a long life with my beloved by my side for the next hundred years!!!
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Other than her husband, Egbertine wanted to emphasise how the following people have supported her and how she couldn't be where she is without them. These are her doctor and her health coach:

I hope you have gained something from reading this post. I know that I have been truly touched.

Till next time...xxx
ST

WE STRUGGLE BUT WE DON'T QUIT - GUEST POST 2

The response from the first post in the series " We struggle but we don't quit" has been absolutely overwhelming. Today I am pleased to introduce you to someone I call my little "Cow sister". Her name is Georgia.

The Adelaide girls - Hope, Tanya, Georgia, Roxanne and a West Australian imposter - me

I first met Roxanne (Georgia's mum) in an online support group for people with Cowden's syndrome. Over the years we have become good friends and have managed to meet up a few times. Roxanne has been a great support over the years and her personal strength is amazing. Her daughter is no different! As they say, the apple does not fall far from the tree.

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My name is Georgia, I am 14 and live in Adelaide, South Australia, Australia, the Southern Hemisphere, the world, the solar system, the Universe. And somewhere in this large space are people like me who are living with Cowden’s Syndrome. Less than 1% of people in South Australia have Cowden’s. I know 3 of them and 1 is my dad. I won’t explain much about Cowden’s because Suzannah is one of my ‘Cow sisters’ and she has told you lots over the years. But basically I am a 14-year-old teenager who has had 12 surgeries to remove tumours from all different parts of my body.

Not many people know that I have Cowden’s, they all just think “This is Georgia and Georgia has surgeries.” Which I’m fine with. The only people I have ever told are my two best friends whom I have known for years. They are very supportive and I am so grateful to have them by my side.

Everyone asks how I cope with Cowden’s, because I am always smiling and happy no matter what happens. The honest truth is I just look on the bright side, even if sometimes it’s so hard to find if there is one. For example in November last year I had a tumour removed from my foot which took 5 months to heal and an extra surgery to fix something that went wrong during the surgery. Yes, it still hurts every now and then but it is not as bad as the tumour pain was. This didn’t slow me down and I performed in my theatre production with a hole in the bottom of my foot.
I also live every day in the moment and I try not to worry about things ahead. I find if I worry about something like ‘what’s the doctor going to say.’ I will get very down and sad which I prefer not to be

Even though I have a rare disease I have done some amazing things in my life. I am a Girl Guide and I am working towards my Queens Guide badge (a high achievement in guiding). I am an s4s representative (Students for Students). I am also a netball coach and I play netball. I have played softball and I am a photographer. I have raised money for Jeans for Genes and I have travelled to many places in Australia with my Guide Unit and met amazing people. I have learnt a lot about leadership.

I have met many amazing people who deal with Cowden’s. When I was born the doctors told my parents that I would never walk or talk, but my mum and dad never gave up on me (it helps that my mum is a nurse). And  look at me now.

I am resilient.

GEORGIA

I am living with Cowden’s.

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There is so much to be learnt from Georgia's attitude! So glad I have my little Cow sister in my life to teach me.

Till next time...xxx
ST

WE STRUGGLE BUT WE DON'T QUIT - GUEST POST 1

When Dr Charis Eng linked mutations in the pten gene to Cowden's syndrome, she also noticed that her Cowden Syndrome patients had an abnormally high number of kids with autism or other developmental disorders. Studies have indicated that 1 in 88 children may be affected by some form of these disorders.

I first met Michelle in an online support group. Both she and her daughter Indigo have autism. Indigo has a host of other conditions including Cowden's syndrome.

Michelle's words on the eve of Autism Awareness Day (April 2) touched my heart. With her permission I am printing these words so we can all learn from them. She and her husband struggle on a daily basis, but I am always bowled over by their resilience and the way they find gratitude and joy in many situations. These people are not quitters and all they want from us is acceptance for their daughter.



April 2 is Autism awareness day. We are not interested in awareness. We want acceptance for our daughter. To be able to go out and about without being cringed at or people making cruel remarks about her being disabled. We have heard them all.

" yeah, she's autistic but can't you shut her up?"
" i don't want to look at that while i'm eating"
" you should have aborted it"
" why can't she talk"
" can't you discipline her?"
" that safety harness is against her human rights"
"Look at the retard"

I feel quite honestly, that at the age of 6, it is quite obvious due to the noises she makes, the way she acts and that she doesn't talk means shes disabled, not badly behaved and requiring discipline. Autism is a widely known concept in the world these days, many people know a neighbour, student at their kids school or relatives in their own family. It is not rare. 

I believe awareness is long past now and its time for some acceptance for these kids as they try to make their way. I would also make the request that if anyone (while in conversation with others) feels the need to talk about pre natal tests being available to test for autism, a cure is necessary, or argue about how much tax payer money goes to children like that, please remember that someone at your table may actually be autistic, have a child, relative or have a loved one who is autistic. Words like these are harmful and hurtful. 

Remember people with autism are people with feelings, and deserve respect just like anyone else on the planet.
                                    Michelle

Till next time...xxx

Indigo and Michelle

ST

A STORY I WILL NEVER FORGET

I am currently working with a group of people to bring you a series of stories about others living with a rare disease. Due to a few hiccups, this will hopefully start next week.

In the meantime a writing prompt from the #Friday reflections, writing group caught my attention this week:

The two moments you will never forget in life are…
Describe them in great detail, and what makes them so unforgettable.


The following is an excerpt from my book ONE LUMP OR TWO. It's more than two moments; it’s a whole day or two which I will never forget.

As I typed the story that day, I found myself in tears. It was a hard story, one I had never really spoken about.

At the time I wasn’t sure about why the tears had flowed and to be honest I’m still unsure. Maybe it’s because we almost lost her.

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I had one day of morning sickness with my first pregnancy but was sick almost continuously for the first three months of my second. Looking back now I should have known what I was in for. This was a feisty baby, one with an opinion, one who made her presence known.

I remember going for my 18 week ultrasound. Somehow I knew there would be a problem and sure enough, her heart was thumping loudly and clearly, but she refused to move.

The ultrasound lady said she needed to move, and for the only time ever in my life, told me to go away and eat a mars bar and drink a coke and to come back in two hours. I wonder now about the safety of all that sugar flooding my system but nevertheless, there she was dancing for the camera two hours later. That was her first performance and funnily enough she can still be bribed with sugar today.


On the day she decided to make her presence really felt, I was at work. I was in a classroom trying to manage a bunch of Yr 10 terrors. She didn't like them. I could feel that because she was punching out from inside. Like mothers everywhere I went into protective mode. I got another teacher to mind the kids and walked straight to the car and drove straight to the doctor.

Ashton had been five week's premature but the possibility that this baby might be premature had never crossed my mind. So I was taken aback when the doctor told me I was already partly dilated at 32 weeks. Her exact words were “Ring your husband. Go straight to hospital".

I'm not sure what they do nowadays, but 18 years ago it was strict bed rest. I was not allowed to move, although occasionally I had a short walk to visit a patient in a similar situation, in an adjoining room. The husband and Ashton (age 2) came to visit regularly but all I really did for a while was sleep.

Then came the day.
                                            
The husband had gone to visit a country show in his home town forty minutes away. He didn't like leaving me but I encouraged him to go because there was no need for him to miss out, and he needed a break from the hospital. He would have just arrived, when suddenly back at pregnancy home base I got my first contraction.

Organized panic set in. I wasn't quite 33 weeks and babies that young had to be delivered in the city because my town did not have the facilities to care for their needs. The GP called the Flying Doctor and set the wheels in motion for me to be flown to Perth...again! This was how my first baby had arrived.

Meanwhile in a time before mobile phones, the husband had been located and was on his way back. He had been close by all week yet I chose the time he was farthest from me to go into labour. Poor man!

Because my baby was still so young I had to wait for a specialized medical team to be assembled to fly up to get me. This took a bit of time and in the meantime I tried very hard not to give birth. Joke!

The Flying Doctor finally arrived and I was wheeled outside for the first time in a week. A storm had started and I didn't fancy being in a small plane up in the storm with a baby that was insistent on being born. The medical crew were fantastic but lets face it, it was early in the morning (about 2 am) and we were about to go up in a small plane among thunder, rain and lightning. I was terrified and in labour!

I shared the plane with an unconscious young woman, another medical drama. She had been in a riding accident earlier that day and also needed to be transferred to the city. Because the plane was full the husband couldn't come, but he promised to drive down in the morning. 

The plane ride was horrendous and even though I was lying down, I vomited non-stop all the way to the city. The nurse and doctor set up a drip because they were worried about dehydration but I just kept vomiting and vomiting.

We arrived in the city and I was transferred to an ambulance. It was about 3.30am and I remember

                                                                     

flying down the freeway with the sirens blaring. It all seemed so surreal at the time but that’s what happened and there I was in the middle.

I arrived at the hospital to be greeted by the kindest nurse I have ever met. I promptly threw up what was left of me, but she didn't flinch. In fact she had me wheeled into an emergency labour room and promptly gave me a bath. I must have smelt a treat after two hours solid vomiting. Just as I was about to sleep, the door opened and it was my Mum. It was 4.30am and knowing what I was going through she had come to be with me. At the sight of my Mum, I cried buckets of tears but stopped when the door opened again. It was my sister. She had rung the husband to find out what was going on and she had come up too.

Meanwhile, my baby oblivious to the trouble she had caused slept. And eventually so did I.

In the morning, which was only a couple of hours later I was able to work out where I was properly and think straight. The doctor had come for a visit in the middle of the night, not looking too pleased that she had been woken up.  I was past caring as yet another birth was going haywire and this upset me.

About mid-morning my baby decided to do a complete cartwheel and then suddenly I felt all wrong. I went to the bathroom and found that the umbilical cord was outside my body. WHY DO THESE THINGS ALWAYS HAPPEN TO ME?

The doctor was called and apparently there was a problem because my baby had turned and become stuck somewhere. Because she was only 33 weeks it was going to take time to dislodge her without stressing her. The pain was unbearable and I was not allowed any medication...not sure why.

At one stage I was in so much pain, I remember four nurses holding me down. I think they were trying to turn baby around and dislodge her. Whatever it was, I was screaming and my poor husband looked so distressed, the doctor asked for him to be taken outside.

And then suddenly amidst all the screaming, the pain just disappeared. Just like that it left and I felt relieved, till I heard the doctor tell the anaesthetist to “knock her out NOW ". Apparently I had started to haemorrhage and my baby's life was at risk.

She was flat when she was born but soon picked up. This was one tough baby who started life in traumatic circumstances, but fought and fought.

When I was woken from a general anaesthetic and an emergency caesarian, my first glimpse of my baby was not how I ever expected it. Rather than lying on me, she lay near me in a small humidicrib. I was allowed to touch her through the holes in the crib. She was so, so small! 4lbs 8oz.

Like any premmie, there were issues. She had to be fed via a syringe through her nose, she wouldn't suck and when she did suck she wouldn't breathe. We got through all the issues...one by one. As I said, this was one tough baby girl.


And that's basically how she has been all her life! She is a tough cookie with the biggest heart. She is
loved by friends, family, workmates...everyone. She has her faults, don't you worry, but you forgive her most things because she makes you laugh and cry at the same time. She is an actress, a singer, a dancer, a clown, a joker and the list goes on. To me she will always be my “Baby Born” dolly and my favourite younger daughter.

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I'm sure you will agree that it's hard to forget a story like that.

I would love to hear your stories and experiences.

What moment in your life will you never forget?

Thanks for reading,

Till next time...xxx

Ciara and Ashton

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IT'S A GOOD FRIDAY

Today is Good Friday, the day Christians remember the death of Jesus Christ on the cross. It is the most important date of the church year and the cornerstone on which Christian faith is based.

For the first time in years, today I attended a Good Friday ceremony and I was surprised to see that the church was literally bursting at the seams. I don't know why I was so surprised. On reflection I suppose, I expected to see few people, because I expected them to fulfill the anti - religious sentiment which disappointingly infiltrated my Facebook news feed that morning. Obviously not everyone should be lumped in the same basket. Lesson learnt.

The message today at the service was loud and clear. Good Friday is all about good winning the ultimate battle against evil. Even with Jesus' death, good still won through the resurrection. The priest encouraged everyone to continue the fight against evil in every aspect of their lives. It got me to thinking about a few examples which have occurred lately. For example, the terrorist attack in Brussels was a horrendous example of evil. As in Paris however, the event has brought people together in a way that shows that evil will not be allowed to win and will be fought.

On a personal front I consider disease to be evil and therefore I use whatever tools I have to fight and educate myself and others. This attitude is not unique to me and I am constantly meeting others doing exactly the same. They are resilient, strong people who fight hard and look for the positives in very challenging situations  to get them through. You see them struggle but you don't see them quit.

Over the next few weeks, I will be taking a back seat in my blog and introducing you to some very special friends of mine who regularly fight the good fight. Some are kids, some mothers. Some have Cowden's syndrome, others have other rare conditions. All struggle but none quit. 

I hope you will enjoy their stories and benefit from their strength.

May you all have a Happy Easter and please be careful on the roads.

Till next time...xxx
ST

THANKS FOR INSPIRING ME

Who or what inspires you?

When I was a child my grandfather was one of my favourite people in the whole wide world. He was a teacher and possibly one of the smartest people I ever met. My grandfather inspired in me a love of books and many a time I would sit on a stool in his study, reading something from his collection, while he prepared for another school day. Reading opened up a world I never knew existed.

I literally devoured books and read many, years before I should have. I remember being especially in love with any book about the British Royal family - not today's lot but kings and queens with really strange habits like cutting the heads off subjects who upset them. It was fascinating as where some of the words used. I remember the word concubine intriguing me, but nobody would explain what it meant!

Equally fascinating were books about crime. Initially Hercule Poirot and Miss Marple ( good old Agatha Christie) were at the top of my list and I remember being so engrossed in her books that I would finish them in a day. As I grew older crime writers like John Grusham became more my thing. The more blood and gory details the better!

Of course as I grew up, inspiration came from other avenues. In 1975 after having survived cyclone Joan, in our new Australian town of Port Hedland, I remember being inspired by some of my teachers. The cyclone had flattened our school and though lessons were obviously cancelled, I remember walking through the school in shock. Teachers were crying and it wasn't till I became a teacher myself that I realised the enormity of what they had lost. I was broken hearted to see my teacher so upset, so I organised some kids to help me collect whatever damaged books we could find. I thought this would cheer him up.  All of these teachers had done great things for me since arriving in Australia and that inspired me to do good back. The books were so damaged they were in fact useless but the look on my teacher's face when he realised what his " kids" had tried doing for him, stayed with me for a long time. It is so true that we can inspire others to do good, if we speak to them and treat them with dignity, as this teacher did.

As I grew older and became a teacher I was often inspired by students who passed through my classroom. I remember a 14 year old girl who returned to school after becoming a mother. She didn't want to be merely a statistic. She inspired me to climb back up when I'm knocked down. I remember a young man who told me he would become Australia's first indigenous prime minister. He has goals and a plan and he's well on his way chasing his dream. What a lesson for all of us, to chase our dreams , not live a life of regret and to realise we have the world in our hands.

When I entered a phase of my life where health issues started to drown me, I became inspired by the
condition I was diagnosed with. I know this sounds odd but it's true. I made it my mission to learn as
much as possible about Cowden's syndrome, so I could stay on top of it, not vice versa. I became proactive in my care and thanks to my thirst for knowledge was able to avert a disaster or three. Through support groups I met many people who carried the same faulty gene. Their stories and
experiences only added to my knowledge and  truly inspired me to get on with it and not let the
condition define me.

And finally I want to mention my children. They are amazing young women and I'm proud to be their mother. What these girls have been through in the last eight years is more than anyone should have to go through in five lifetimes. Despite my health issues and their own, they continue to plod on with life and reach for the stars. In June the eldest daughter will finish her undergraduate degree. Not bad for someone who's had 16 brain procedures in three years. She has fought and continues to push forward. My younger daughter is also a fighter. She's  had to witness both her mother and sister be seriously ill and yet she still works hard pursuing a career on the stage. With all the stress she's gone through, many would have just have called it quits, but not my girl. And to top it off, despite a morbid fear of hospitals ( who can blame her) she swings into action when needed in a medical emergency.There's inspiration right there. Remember the saying, "Feel the fear and do it anyway"? That's my daughter.

And that's where I'll leave it today.

Tell me who or what inspires you? I'd love to know.

Till next time...xxx
ST