YOU HAVE BEEN WARNED

I'm watching an old movie where a man ( Mel Gibson) develops the ability to hear what women are saying " in their thoughts". It drives him insane and makes sitting in a meeting full of women impossibly confusing! He hears what women think. He reads their minds and sometimes what he reads is not what he wants to hear . The psychologist he goes to visit tells him he has a gift and may just be the luckiest guy in the world. It's hilarious. Imagine if men could read womens' thoughts, both good and bad. How much trouble could that get you in! For example, this could have been my week:

1. Monday night on Qantas, flying to Perth, the guy in front of me might have "heard" this - " do you really need to recline your seat on a one hour flight loser. I can't eat my dinner because the tray is all wonky, thanks to your seat being reclined, you inconsiderate, *#%^*^ ".
2. Tuesday at a hospital visit, the guy who eyeballed me in the car park would have got " steal my parking space and I will haunt you for the rest of your life" and
3. Today - "pull your pants up, I don't want to see your jocks" and later " I wanted coffee so I wouldn't hit anyone. You made it so hot I can't drink it...you're in danger, mate!
   

Jokes apart, what would be the benefit of men reading women's minds and how could anyone consider that a gift? If my mind is typical of most womens' minds, then the gift would drive someone crazy, loopy and straight into an asylum. Reason - too many things are on my mind at one time. (Only another woman would get this).

See if you can follow:

Topic arrives in my head - Mother's Day. This then fires off many mini topics and links, so confusing and guaranteed to confuse any mind reading, male " listener ":

It's Mothers Day Sunday.

What shall I get my Mum?

Hope my sister's kids remember.

Must ask her about that dress I bought her.

Hope my red dress for party looks good.

Must work on menu.

Must go food shopping. We're out of fruit.

Fruit - full of sugar or healthy ?

Must make doctors appointment next week.

When are those results coming through? 

Feeling a bit anxious.

Don't think about being anxious. You will ruin Mothers Day

Time from topic arriving to final link - one minute maximum.

Here's another :

Topic - What's for dinner?                              

Hungry

Cook dinner

Must go Woolworths.

Saw Liz last time shopped there.

Wonder how her mother is now.

Must ask Liz about shoes.

God my feet ache.

On my feet all day.

Teaching so tiring.

If that kid does that again, I'm going to scream.

That would be funny.

I wonder if " Big Bang" on tonight?

Must ask Mum.

Must ring Mum.

I'll make her stew for dinner. ( 30 seconds all up)

No folks, the ability to read these female conversations would not be a gift. It would drive males to an early grave as they tried to decipher the chain of thoughts and the oestrogen fuelled logic. In fact ( as a Public Health Service) you are hereby warned to refrain from analysing a woman's mind if you are a man. Do not attempt to cultivate this skill. Stay well away for your own health and well-being.

Don't say I didn't warn you!
Till next time...xxx
ST

MY 10 TIPS FOR SUCCESSFULLY RETURNING TO THE WORKFORCE

Making a decision to return to the workforce can be surprisingly easy, but actually returning to the

workforce and surviving...well that's another story altogether. This year, after an extended absence from paid work due to health issues, I returned to teaching. Here are my top tips for how I managed to do this successfully. 

1. Make a decision by weighing up the pros and cons. If like me you are getting tired of your own company and your bank balance is on a permanently critical level, this won't be too hard a decision to make. Once you decide one way or another, move on. Don't drive your friends and family mad with " should I" and " should I not".
2. Once your decision is made treat yourself to some new clothes. I bought a few new items that I could mix and match to make a number of outfits. There was an obvious monetary expenditure involved, but it was worth it to feel professional and ready for action. I also bought some bright coloured items because they keep my mood uplifted and I've always believed students react positively to teachers wearing bright clothes.
3. If you can afford it, treat yourself to a hairdresser. Have a colour, a trim or whatever you need that fits in with your budget. It's another way of being professional and ready for action.
4. Get organised. My first few days I was diving into my bag for a pen or highlighter. It's too hard really to function like this in a classroom, so I bought a pencil case and got organised and now things are much better. I also bought a big tote bag to carry everything in from classroom to classroom. This is much better than trying to carry heaps in your hands.
5. If like me you will be on your feet for most of the day, invest in the most comfortable shoes you can afford. Trust me on this. (OK, the boots I bought were not strictly speaking necessary, but my husband did ask me if I wanted something for Mother's day. That counts right?)

   

   Tired feet - get it?

6. Prepare your food for the day at home in order to save money. If you must walk into work with coffee, use a travel mug and fill it up at home. You've gone back to work to make money so be careful of squandering it on little things you can do without. Same with lunches. I've started putting a small serve of the previous night's dinner away for lunch the following day. Again if you take food with you to work, you are less likely to head for the work cafeteria or nearby café for your  food. Just one thing I learnt the hard way this week; put your lunch in a fridge at work. Quiche was not really safe to eat once it had sat in my tote bag all day!
7. If you've been out of work for a while, things may have changed. In my case I have moved from a head of department position to a relief ( substitute) teacher position. That's a big difference. Accept the change and move on. There were good reasons for you being out of the workplace, and you may need to build yourself up to where you were before.
   
8. If you've returned to your old workplace, you may find you are a novelty for a while. People ask questions; lots of them! Although in my case it's become a bit tedious, I grit my teeth and bear it. They are just being nice. Some are a bit nosy, but one thing I've learned in my time at home is that lack of company can do my head in. So even the nosy ones I smile at and talk to, because they're company. And here's hoping that I become yesterday's news real soon.
9. Don't be afraid to ask for help. I have started doing some relief work at a different school to what I was used to. They have a totally different computer system and it totally freaked me out the first day. But I asked for help and within one day I had mastered what I needed to know. Another thing was the brand new photocopier machines. I am totally scared of these at the best of times, but especially so when the darn thing jammed on me. Just as I was about to find someone to help, I worked it out. Phew!
10. Maybe it's because I have been through so much in my life, but at the end of each day I try and focus on something good that has happened each day, to give me the courage to go back another day.
    
    The something "bad" would be " you're not a real teacher because you don't work here all the time" or "what qualifications do you need to be a real teacher"? The something "good" occurred Friday after I complimented a sixteen year old boy on his work. He looked shocked, so much so the situation was almost awkward. Finally..." that's the first time ever that a teacher has told me my work is good'. Yes folks, that was my feel good moment for the day! Happy student. Happy teacher.

Hope you all have a great week and that if you're returning to work too, some of these tips help! Please feel free to add your tips in the comments.

Till next time...xxx

ST

DIARY OF AN INSOMNIAC REVISITED

Months ago I wrote about my challenges with sleeping. If you want to read that post, the link is http://lumpyone.blogspot.com.au/2015/08/diary-of-insomniac.html. Well, I'm devastated to report that nothing has changed since then...nothing...nothing...nothing.

# wishfulthinking #not me #wishitwas

Once upon a time in a  land long gone ( teenage land), I used to sleep and I used to sleep well. I can still remember my mother's threats as to what she would do to me if I didn't get my sorry butt out of bed ASAP. I didn't care. I had a serious love affair going with my pillow and as in all love stories it was worth taking a risk.

Fast forward to my "almost fifty year old" body and an accompanying state of chronic insomnia and chronic exasperation. Maybe I should have heeded my mother. Is it possible I used all my sleep allotment in my teenage years? Welcome to another night in my life.

9.30 pm - Getting sleepy. Start thinking sleepy thoughts and muttering positive affirmations that I AM going to sleep and I AM going to sleep well (some bs I picked up somewhere about changing my thinking).
10.00pm - Get into bed and kiss husband goodnight.
10.05pm - Husband is asleep and emitting level 1 snoring.
10.10pm - Get out of bed as forgot to take medication and need to use bathroom again.
10.15 pm - Back in bed.

10.30pm - Hear a creaking noise. Worry that we are being broken into. For only the millionth time wish Harry (our dog who passed away 2 years ago) was still around. Run through what Harry would have done to any intruder caught on our property. Run through every break in story I've heard of in the last ten years. Note to self - get quotes on more security screens.
11.00 pm - Get up to investigate creaking noise. Its just the pergola creaking. Note to self to ring and get a quote on replacing said pergola.
11.30pm - Level 2 snoring has started from person next to me. I try to relax but it's impossible.
11.35pm - Lying on my back I feel like I am being suffocated by my reconstructed breasts. I feel like I suddenly have two cannonballs strapped to my chest. So I turn to my right and try to relax. Anyone who thinks fake boobs are desirable should try sleeping with them first.
11.36pm - What's that noise? Bug zapper in the kitchen has caught something and the whole house now smells of dead, burnt bug. Note to self - ask husband to move it so I can see the clock behind it. I don't want to touch the dirty thing.
12.00am - Watch clock tick over to a new day.
12.05am - Muscles in my leg start to throb. Maybe I'm imagining it. Maybe I'm dreaming it. Now is not the time for an attack of sciatica.
12.30am - Apparently yes, it is. Weird convolutions in bed as I try to massage my lower back as the physiotherapist taught me. Note to self - make appointment to see him.
1.00am - Get out of bed and go hunting for pain killers. Move every box in the cupboard to reach box of Nurofen at the back. Grab ipad and glasses and retreat to spare room bed.
1.30am - Wide awake so read Facebook, update blog, talk to people in America, check out Instagram.
2.00am - Tablets starting to work and feeling sleepy. Put ipad away.
2.15am - Need to use bathroom.

2.30am - Wonder who else is awake. Consider ringing father who undoubtedly is also awake.
3.00am - Still awake but at least not in pain. Think boring things to try and trick myself into sleeping. Go through personal medical history.
3.15am - Get up to find a blanket. Can't risk closing the window as noise would wake husband on other side of house and we couldn't have that!
4..00am - I think I must have slept.
5.00am - Hear husband's alarm clock. I refuse to open my eyes.
5.15am - Birds are making a racket. It's ok for them. They have slept. Still refuse to open eyes but note to self - consider investing in a cat to scare the birds away.
6.30am - Ignore alarm.
7.00am - Ignore phone call.
7.30am - Ignore another phone call.
8.00am - Ignore texts.
9.00am - Get out of bed. Good morning. Give me coffee and nobody dies...not even the birds.

Till next time...xxx
ST

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.

                                                   ----------------------------------------

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.

-----------------------------------------------------------------------------------------

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!!!!

______________________________________________________________

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.

-----------------------------------------------------------------------------

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!!!
                                          -------------------

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