WE STRUGGLE BUT WE DON'T QUIT - GUEST POST 6

This is the last post in the series " We struggle but we don't quit". 

Today we meet Sarah, a 29 year old nurse from Australia. Her endeavours to find proper care and advice for herself, and her ability to soldier on in the face of adversity, are truly inspirational.

INTRODUCING SARAH
What do you do next when all your fighting and pushing for your health doesn't pay off? 

When I look back at the time of diagnosis all I did was advocate and fight for my health. The doctors had no answers. I had no answers and yet I knew that something was wrong. Something deep inside told me that something wasn't right with me, despite what people said.

It wasn't in my head; it wasn't because I was overweight and it wasn't about what I ate. This persistent drive inside of me told me that I should keep going. There had to be a reason to the way I was feeling.

Answers did finally come (a lot more then I expected) - multiple medical conditions meaning multiple doctors, tests and hospital visits. Cowden's was a diagnosis that I was expecting but never wanted. A high risk cancer gene meant I was at risk of a plethora of cancers, and in particular breast cancer. My mum lost her battle to breast cancer when I was 19. I wanted my journey to be different.

Despite the challenges I wanted to be proactive. I continued to research and be my own advocate. I quickly realised that the now infamous blank stare from doctors would become part of my life and that it would be my job to educate doctors and medical professionals. In a small part it gave me a purpose to my medical conditions and gave me control back over things I never asked for.

One of the most particularly frightening things for me was the prospect of breast cancer. With an 80% lifetime risk and given my family history, the risk was high. It is a difficult subject for me as I saw what my mum went through. When I saw changes in my scans last year, (although they were benign)it was enough for me to start asking about prophylactic mastectomy. To be honest the mere thought was terrifying, but I knew it was my best option to reduce my risk. So I went to my surgeon and got a referral to a plastic surgeon. I knew this would be an uphill battle as my surgeon said I was too young to have the surgery. I pushed ahead with the consult anyway. Even though I knew the chances were slim, it was still a shock to me when the plastic surgeon also said no.

I put all this time and effort into my health to be told no. I freely admit it threw me. I didn't know what to think. Was I wrong? Was he wrong? Why didn't he respect my concerns about my health risks? All I was told was to lose weight and it would make things better. I felt so useless and confused.

The question continued - what do I do next? After some thought I realised what I needed to do. Keep fighting. I did more research on my Cowden's , talked to people who might understand and developed a new plan with my conditions in mind. A new plan, new doctors, new hope. What I realised is that despite setbacks and "no" from certain people, I'm still my greatest advocate and to never give up.

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I would like to thank Michelle, Georgia, Egbertine, Robert, Adrian, Tanya and Sarah for sharing their experiences with everybody. Together we will continue spreading the word and beating Cowden's.

Till next time...xxx
ST

WE STRUGGLE BUT WE DON'T QUIT - GUEST POST 5

Tanya, me and Roxanne 2014

 This is the fifth instalment in the series " We struggle but we don't quit". In this post I am handing over the reigns to a Mum called Tanya. Tanya does not have Cowden's syndrome but her daughter does. She inherited the condition from her father.

I first met Tanya in an online Cowden's support group soon after I was diagnosed. It somehow helped to find a fellow Aussie in that international group and I was very touched by her words of wisdom and caring manner. Later Tanya, another friend Roxanne and I would start Cowden Syndrome - Australia, the first support group for those with CS in Australia.

Welcome to Tanya's story which begins with HOPE.

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I’m going to write a bit about my experience caring for a child with a rare condition whilst battling my own physical and emotional health challenges.14 years ago I was blessed with a beautiful little girl whom I named Hope because she was my little miracle and my vision for a new and better life. Yes, my life up until this point had been extremely difficult and full of much sadness and pain so when I had my daughter I called her Hope. I never had any idea what the future held for her nor did I know how much her name would end up meaning.

The next 14 years for us were extremely difficult filled with much physical and emotional health challenges as well as many close family traumas. During these years I battled for answers to Hope's various health and physiological anomalies. Then when Hope was 8 years old after a great deal of searching she was diagnosed with PTEN HAMARTOMA TUMOUR syndrome or COWDEN'S SYNDROME (depending on which specialist you talk to).

I won't go into this condition as I’m sure you have read quite a bit about CS on this blog. What I will tell you is how it feels when you receive a diagnosis like this and how you can climb your way back to your new level of normality.

How would I explain rare disease?

Imagine you are taken and suddenly thrown into a foreign country alone. You don't know this country and you don’t speak the language. Everything you have known is gone and your life is altered dramatically .You feel lost, confused, scared,misunderstood, sad, alone and angry that this has happened. You try to talk to people and explain what has happened but no one understands you and you can’t find anyone like you. Even the people in charge 
who should be able to speak your language are unable to help you and really don’t 
understand.

From my perspective this was exactly how I felt when Hope was diagnosed and for many years after. Today I still have days where I feel alone and misunderstood, especially where doctors are concerned, but not to the degree I did in the beginning.

How did we find our way back and how do we cope???

Firstly, I searched for SUPPORT and eventually after much looking met some amazing people who understood what we were going through, helped us stay strong and understood our new life. I worked really hard to STRENGTHEN my health and Hope's. I overhauled our life by changing our diet and exercise. I also searched for ways to deal with the anxiety and depression we both deal with. Some were helpful, some not and yes these things made us very poor but it was all worth it.

We learned to use HUMOUR to deal with some challenging aspects of our lives. One particular way Hope would cope with all of her doctors and specialists was to give them 
nicknames. We have had the Dark Lord (yes Voldemort from Harry Potter) . That nickname 
was definitely well earned! We also have Mr Boring History Lesson guy and many more. Hope even jokes that she will call her first autobiography "101 ways to moon Dr Salmon" (the owner of the Dark Lord nickname). My motto is never to underestimate the power of HUMOUR but just remember at some really sad times, the humour won't be helpful. So know when to use it and when not too.

 EXERCISE is a big one for us both and we have learned that a strong body means a stronger mind and for us it helps many symptoms of anxiety and depression. Hope has come so far in this regard. For a child who walked late and always fell over and had all kinds of coordination and joint and health issues, she is doing much better in this regard due to hard work and persistence. We go to a gym together now and I must say kick some fierce butt in body combat class. We love the empowerment it gives us even on our bad days. In past years we did some fundraisers and runs like the mother’s day classic. These

Mother's Day Classic

weren’t easy physically but we did it and NEVER GAVE UP!! Hope also last year found a huge love for dance and she now does tap, hip-hop and jazz. Does this hurt her body at times? Absolutely it does but the benefits far out weigh the negatives and it makes her feel happy and alive. She has found her passion and the effect of that is very powerful!

Hope's favourite dance quote

One more thing I’ve learned is that it's very important to learn to accept the bad days. Things in our life are certainly not easy and some days it's ok to feel sad or angry or just over it all. The important thing is to be able to get up the next day and keep going and try to move forward. If you have noticed I often refer to things we do as "us" not "I"or Hope. It’s because we are a TEAM. It may be small just being the two of us but we are very powerful if we work together. Our relationship is very important. Yes, we struggle terribly at times, we argue, bicker, yell, get angry and cry. But we are incredibly close, we have a very special relationship forged out of much heartache, persistence and hard work.

How do I see this new world now?

This new world I live in has become my new reality. I have learned to navigate my way around. I am increasing in confidence and I have become a great advocate for my daughter. Whilst I may not accept the suffering my daughter goes through at times, I am learning to cope with it and learning how to help Hope to cope also. The world of special needs and complicated medical needs is extremely tough at times but I’m learning the lingo. I’m understanding the language better and I’m learning where to go for help.

And most of all compared to my first years in this new world, I’m seeing flowers instead of weeds and sun instead of rain. Of course this is not a world I would have chosen. The pain of what we have been through and go through daily is still raw and difficult and seeing your child suffer is something no parent would choose, but I try to see the positive and if I look hard there is much positive to be found, even if some days the positive is the ability to enjoy 
a nice strong cup of coffee

Being forced to become a single parent carer for a child with a rare condition and many other battles has completely changed my life. It forced me to face head the serious depression and anxiety that I’ve battled my whole life, as well as all my past demons. I had to fight hard to get myself well so I could fight even harder to get my child well and help her grow and cope with the problems she faces. I’m damn proud of how far I’ve come and it’s not often that I give myself credit. I’m certainly not perfect, I still struggle and still have bad and really sad days or days I want to hide away. But I don’t. I get up every day and keep fighting.

                                             
People say, you’ve done so well with Hope or Hope is lucky to have you. Well I can honestly say that I am extremely lucky to have Hope. She has taught me so much. I am incredibly proud and humbled that this kind, brave, funny, smart and truly beautiful soul is my daughter. This is the beauty of special needs parenting of any kind. We work as parents and carers to help our kids in every way possible, but in the process they help us. And in my case she saved my life and showed me the true beauty of life, what’s really important and I learned the healing power of unconditional love!!!!

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Not much more I can add except,
Till next time...xxx
ST

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

HAPPY 21st TO MY F.E.D

Twenty one years ago I gave birth to a beautiful baby girl. She gave me quite a shock because she arrived five weeks and one day too early on a very humid night. When I woke her father at 11 pm to tell him my waters had broken, he didn't believe me at first. But he had no choice really and soon we were flying out the door to the hospital. We were so young and so naive and so inexperienced that we forgot to take a bag of anything with us. You know what I mean - clothes, toiletries, baby stuff! We had nothing with us. Looking back now it was hilarious!

That night a new midwife was doing her first shift in a new country hospital. She was told to expect a quiet night for her first night and within two hours she got an emergency. I remember her ringing the doctor who was not too pleased to be woken up. Apparently she made the huge mistake of ringing the doctor before examining me herself. The poor woman got yelled at but there was no doubt my baby was on its way, so she managed to squirrel out of any more doctor tongue lashings.

Like her sister two and a bit years later, she was too early to be delivered in a country town hospital and the Royal Flying Doctor plane had to come up from Perth to get me. Ashton was born the following day at 2.59 pm in between calls to my closest girlfriends.I have never seen such a look of delight on my husband's face as I saw that day.

The feeling of holding your first baby in your arms is quite inexplicable. The sudden rush of love
Iand wonder when you look down and finally meet your child can be compared to nothing else. You love all your children equally but the wonder of the first birth is just so special. It was so interesting to read another blogger #Lysa Wilds from #Welcome to My Circus describe exactly the same feelings in her recent post about her son, who coincidentally has a birthday this week too.

My daughter woke up in hospital on her 21 st birthday. She had surgery the day before which did not achieve what it set out to do, so it could have been a downer. But with the help of the nurses, doctors and friends and family we still made the best of the day. Eventually Ashton got discharged and home we went for flowers, cake and visits from family.

The health sagas are not over. We had hoped for the best of 21st presents. We had hoped to be de-fistulised. However, it wasn't to be this time.Once again I thank God for a doctor who knew when to stop rather than take risks.

So now its time to concentrate on a 21st party and on life. She will be reviewed by the doctors in a few months and a new plan of action will be made.We hold our collective breaths but till then life goes on.

Happy birthday to my favourite eldest daughter. 

Till next time...xxx

FESTIVAL OF ASHTON

So it's Sunday afternoon and I am having a lazy time. Last night a group of us went to see Ciara in her production called "A little rain must fall". It was lots of fun but with a message to take away about risks and consequences . I loved the colour, the activity, the loudness and the general storyline. The production is part of the "Perth Fringe Festival"and because there are so many acts going on, Ashton and I are going back tonight to see another production. We're actually going to see a comedian because I think before this week starts we  need a good belly laugh.


So let me catch you up on this family's sagas. This week as I've mentioned already is Ashton's  21st birthday. Her birthday is on Thursday and her party is next Saturday. We have approximately 90 to 100 people coming and it is going to be a fantastic night.

Only one thing stands between today and the rest of the week. No, it's not the fact that the uni year starts tomorrow. No, it's not the fact that some people still have no idea what to wear to the party. It's all about the fact that on Wednesday her surgery has been brought forward. What the hell!

You might remember that she still needs another operation. There is still some fistula in her jugular vein and the doctor (please bow) wanted to get her back into theatre as soon as possible to finish the procedure. The original date scheduled was March 20 and though it was a bit of a distance, we sort of got used to the idea.

Which is why we're all a little in shock that the procedure has been moved to Wednesday 25th February. She was given the option of saying yes I'll have it on the new date or no keep March 20. Rather hard call to make isn't it? Whichever decision you make it is full of negatives and positives. We all eventually decided health must come first, so she has opted to have the surgery on Wednesday 25th and will therefore be waking up in hospital on her 21st birthday. Never in my wildest dreams did I see my child waking up in a high dependency unit on her 21st birthday after her 15th major procedure. She has told the doctors that she expects flowers and cake. The bets are on as to whether they will follow through.

Just to see a smile on her face, Mark and I have already given her our birthday present. If you are not on my Facebook list you will not have seen these photos so I will include them because they have made made a lot of people smile and a couple cry. It's just so nice to see her happy.

We are so hopeful that this procedure will be the last BUT all we can do is hope that this will be true. This June it will have been two years since her diagnosis. That's a huge chunk out of her life and out of ours.

See you in the hospital.

Till next time… Xxx

NOT A POET AND I KNOW IT

I want to scream

I want to shout

I want to let frustration out.

I want to cry
I want to yell
I WANT MY DAUGHTER TO BE WELL

I want some things to go our way

I want to have a peaceful day

I want to find a lucky clover 

I want this nightmare to be OVER! 

Ok. No need to tell me I'm not a poet. I know! But it's the first thing that came out when I put finger to ipad. I am frustrated beyond belief because I had such hopes for Ashton returning to theatre this Friday. I had high hopes for a little bit of finality, a little bit of closure. But if was not to be. There are not enough beds available and no room on the lists for the procedure to happen this Friday.

So, there will be more waiting and more hoping and more praying that her current good health stays with us. We will distract ourselves with thoughts of her 21st party which is scheduled for the end of this month. And I will distract myself with menus, balloons, gifts, cake and an increasing guest list. This is going to be a great party, not just for the birthday girl but for all of us. Everyone on both sides of the family needs a good party.

Waiting is not something I'm accustomed to when it comes to health issues. Luckily I have always had private health cover and been able to choose my own specialist and be seen quickly. But Ashton's treatments have been in the public system because for her condition that's the best place to be. And so we are constrained by lists and budgets and beds and availability of staff etc. It's not fair is it? It's bad enough having any medical condition, without having all that put on you as well. I wonder if people who allocate budgets have ever had to wait for medical treatment before. Bad enough if it was for me...hell that it's for my child. And double hell if that's the only system you can afford to be seen under.

The husband has returned to Geraldton to replenish the bank account. It's hard being separated like this but Ashton can't drive herself at the moment and so I stay. Ciara starts university next week! Sound the trumpets and blow the horns. It's going to be another big year for my budding actress as she undertakes a certificate 4 in musical theatre at WAAPA - the west australian academy of performing arts based at Edith Cowan university.

Till next time...xxx

ST

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

IT'S OK TO GET HELP

I'm going to write about depression and I know that certain people will view this as confronting. I just don't get the stigma still attached by some people to depression. If your leg or your heart or your skin has a problem, that's socially acceptable. But mention your brain having a problem and it still upsets some people!

I have suffered from depression all my life and I don't care less about stigmas. I talk about my depression and discuss feelings, medication and treatments I've tried quite openly. To not do that would be to play along with labelling others impose.

I could feel an attack building up a couple of days ago. Its hard to explain other than I was getting emotionally lower and lower as the week progressed. Also, all I wanted to do was sleep and I just couldn't. Its quite debilitating because while trying to keep a strong front, your inside strength crumbles slowly. You try to have conversations with people and maintain a "normal" facade,  but its physically and emotionally exhausting.

Eventually something really trivial triggers the final crumbling and ensures the tears and withdrawal start. In my case it was a joke by one of my doctors. He said that we needed to test something because I was weird. Normally I would have laughed and joked back, but this week it was a bit of a trigger for tears and anxiety.

 I decided to go home from the city,to my house, my bed and my husband. I can manage better in my own surroundings.

I spent a whole day alternating between bed and household chores. Everything I did tired me out and when I get like this, I know I need to rest and look after myself. This is what I used to do wrong. I used to just keep going because I had to. I had kids who relied on me. Who had time to stop and self care?

These days my tune has changed. I look after myself, so I can help those who rely on me better. I do

nice stuff - write on my blog, sit in a coffee shop and drink nice coffee, cook a treat. Above all I sleep.

And it works. Today after a five day downward spiral my mood is lifting and I feel a lot better, which is great because today the cousin is making the trek up to my town for a visit. He is presently on a five hour bus trip to get here. In Maltese terms, he has probably gone around the island a thousand times so far.

I really hope he sees a kangaroo cos he really wants to see a kangaroo.

But back to depression and why I wanted to write about it. I have started getting messages from people who follow my blog... and for the record I love it when people leave me comments/messages. A couple of messages lately have been from people suffering from depression and going through terrible ordeals, especially with their own health.

Now I'm no doctor but I am a professional patient. I don't know why I get depression, but the fact is I do. When you look at all the " crap" I've had to go through in the last 30 years, people always say:
 " No wonder. Poor thing"! And yes they're right. But, if you're waiting to have a life that is as rotten as mine before you seek help, then you have rocks in your head.

Depression is real. If you have depression do what it takes - see a doctor, take medications, exercise, write blogs...Do whatever you need to feel better ,because everything's so much better when your head clears. And don't worry about what other people may or may not think. You only get one life and you can't enjoy it with a grey cloud residing in your head.

Till next time...xxx

ONE TOUGH CHICK.

There is nothing more emotionally excruciating than doctors telling you how serious your daughters condition is. Even at my lowest point (the day I was diagnosed with breast cancer), I now realise I was higher, much higher than I have been this week.

When last I wrote we were in hospital awaiting surgery Friday. Our poor girl fasted for 17 hours before her surgery was cancelled. We needed patience, lots of it. Someone else's life needed to be saved. It could easily have been us so we had to be patient.

Then it was weekend. One very sick young woman. Two very worried parents and three days to wait. Three days which seemed to go for an eternity.

Monday surgery finally arrived and she was in theatre for five hours. I counted every minute of the five hours and was physically and mentally exhausted at the end. The husband and I have our little spot we wait in. Its like our own house in the hospital with TV, toilet, water fountain and electricity to charge phones. All we need.

Then came Tuesday and a mammoth nine hours in surgery, with three doctors working on her and only her all day. I thank God for such expertise, such skill and such wisdom. I thank God we live in this country were these services and people can be accessed.

We spent the day pacing the hospital. We drank coffee, we ate hospital burgers (again) and we talked, prayed, begged and waited and waited and waited. I spent time in the hospital chapel where I petitioned every saint Ive ever heard of to intercede for us with God. I even tried bargaining with St Anthony. He is so good at finding stuff that I suggested he branch out and try something new. I want to lose something and I want to lose it permanently from my daughters brain. I want to lose her fistula.

Tuesday was full of emotions. We had a moment of laughter when I told the chaplain about my plan for St Anthony. At one stage I even had a bit of a shock when I realised that sitting at an adjacent table was an old boyfriend from 24 years ago. Is it normal to still feel such dislike after all this time?...but I digress.

And now its Wednesday. Its today.

I'm scared of what we will find after 14 hours in surgery. But I forget whom I'm dealing with. She is sitting up in bed with good colour and a smile on her face. She is awake, not sleeping and this in itself  is a huge improvement. This is one tough chick. How can someone look this good and still have such a serious condition?

Her resilience is unbelievable. I miss her doctor's visit but she tells me he high fived her. He would be pleased today. But there will still be more surgery Friday. Looks are deceiving and scans tell the full story.

We are exhausted beyond belief. Thank you for the ongoing support and love.

Till next time xxx

GET OVER IT AND GET ON WITH IT

Today I started reading a new blog I discovered called "State of Kind". (When you have a minute it can be found at 366randomacts.org ). It is quite simply one of the most inspiring things I have read in a while and it's made me think about a few things that have been going on lately in a different manner. The author wanted to make the world a better place for his young daughter, so he committed himself to doing 366 random acts of kindness. That's one per day and one into the new year. He simply wanted to show his daughter that there is good in this world ( not just bad) and we can all help spread this goodness by our actions.

Amidst all this is a parallel story of the author's other child diagnosed with a rare genetic disorder and the struggles this family and child go through. Familiar territory here and in fact the main reason I initially started reading the blog. It's not fair. Good people (like this family obviously are) should not have to struggle. In fact nobody should have to struggle like this, including me and my family. But as I say often, it is what it is, and we deal with it all one day and sometimes one hour at a time. This family appears no different in how they cope, heartbreaking though their situation is.

Another blogger and someone who has become a very good friend ( beatingcowdens.com) talks this week of what she can't control in her life and what she can choose to do. It seems to be the mantra of people who need a framework to cope. When my daughter asks " why me? " I've tried to teach her we have two choices. We can either sit and ponder and feel sorry for ourselves OR we can just get on with it! For those of you who read my last blog and laughed at the doctors names, that is one way we have devised of getting on with it. It's hard not to have a smile on your face when talking to someone you've secretly named Dr Sexy Pants!!!

Next week it's my turn to just get on with it. Yet another review date looms and a hot date with an MRI scanner. No sexy pants here just noise I'm afraid! I actually hate MRI because I'm claustrophobic but my Cowdens condition just doesn't give two hoots about that . It's a real case of get over it AND get on with it. I'm planning something nice after it's over though...a little reward for getting on with it.

I actually used to have that saying up in my classroom when I was teaching. The kids ( with a bit of steering from me) came up with it. They used to come up with every excuse under the sun to be disengaged or off task. Some were quite sad reasons, but we all agreed that at school we had to try and focus and get on with it, if we were to break out of the rut many of them already found themselves in at such a young age.      

Maybe the other reason the random acts blog touched me is because I have always taught my students and my daughters the benefit of doing something good for others when you feel life has been too hard on you. Over the years my students (with sometimes horrific family backgrounds), have joined together to run fundraisers or other events and for a moment the sheer act of being busy, doing something for others, takes their mind off their own problems. I will never forget the joy on a group of sixteen year olds faces when they produced a number of hampers for mothers in the community, who for various reasons needed a treat. Each one of these girls could have done with a treat herself, yet here they were  performing random acts of kindness and forgetting for a minute about their own situation...and loving it!

So really I've had a big reminder that sometimes I just have to get on with life because its so easy to get bogged down, especially when going through medical trauma. As of now I am starting my own private random acts of kindness mission to help me get on with it ie get on with life. If I

can't wave my magic wand and cure Cowdens or my daughters brain I can at least do some good while waiting for others to do it for me. As always I also have the greatest trust that it's all in God's most capable hands.

Till next time xxx

PS- Please share this with anyone you feel may need a lift ( or a kick up the bum ) and also do read the blogs I have mentioned. Amazing people!

PS2 - Do let me know what you think  xxx