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