Under the sea ♫♫

Went with Kikki to the musical The Little Mermaid

♫ The seaweed is always greener ♫
In somebody else's lake
♫ You dream about going up there
But that is a big mistake ♫
Just look at the world around you
Right here on the ocean floor
Such wonderful things surround you
♫ What more is you lookin' for? ♫

Chilling in Bakkum

I'm at Bakkum with Mees and a friend. 

I take it easy! On a sunbed under the trees. Boys have fun!

No news about new meds. My tumors are not mutated. That means I will not enter the trials they had planned for me. Now I will have to wait till my meeting with head of trials, Prof. Schellens. 

He will tell me (hopefully before Italie) what will be waiting for me when I get back. 

Another trial or a weekly infuse?

Lavender

Nothing much to tell.

My oncologist called today but no results yet.

We will have another try on wednesday afternoon

I will go away for a few days with Mees and a friend of him.

Kik is going elsewhere with Madelief.

In the meanwhile I make another lavender pie

Cake of the day

Sticky blueberry lavender pie.

I'm not feeling so blue as the last weeks. 

Talking to my oncologist Dr. Linn helped getting things in perspective.

I will hear next week if I'm compatible with one of the trial medicines. 

The doctors will not put me on new medicine before our vacation.

So the next 6 weeks will be fairly quiet except for the pains I have.

But I got some xtra drugs. For the first time in my live I'm an addict :-)

Girls just wanna have fun

Because the moms just wanna have fun

"Tye Dye project"

Make your own Isabel Marant jeans :-)

The look of love ♫♫

I Am(sterdam) not any further

Yesterday at the 'I Amsterdam'-logo in Westerpark with Kikki, Mees and Madelief.

Today I visited the hospital to learn more about the kind of tumor I have. 

The doctors are trying to find out how the tumor mutates. 

And when the results are in, dr Linn wants to see if she can get me in an experimental programme for a very new medicine that sort of stops this wrong mutation. 

The big question now is: Is my tumor 'suited' for this new kind of medicine?

Today we went in to hear the results. Unfortunately the results are late. Shit happens. 

Had I only known. I would have slept a lot better. 

I had a nervous and aching stomach all weekend.

But my visit to Dr. Linn wasn't a complete waste of time. 

Doreen and I asked a lot of questions and got answers. 

So I'm a little more relaxed now. 

I will have another meeting with my doctor before I go to Italy 

so I will know what the plan after the vacation will be. 

No new meds before 'Airole'

I bake cakes

This one is goooooood!!!

Lemon Ginger Cake!

The black colour is not burned but a Hipstamatic photo filter.

Auwch

Be happy that I didn't made a picture from the Biopsy they took from me this afternoon. 

Fuck fuck fuck fucker the fuck that hurts!

Love Hope Faith

Irena wanted to buy Elderflower Syrup from me. 

But for the people who I love and help me it's not for sale. 

They get it for free. 

 But this time we traded it, syrup for art on a kitchen towel.

it's called; love hope faith

Will I use it as a kitchen towel. I don't know yet.

It's too beautiful

Again surfing, surfing

End of season party of Mees his soccer team. Kik went along with a friend. 

They are going to be a pro surf dude and girl in the meanwhile.

For me. I had a nice weekend. Bought a new bike.

A nice sunday on the beach.

Only the pain is annoying. Especially of the so called solar plexus or also known as the 3rd chakra. 

I'm not a believer of this stuff but it is possible that all my stress joins at that place. It gives an annoying pain.

Tomorrow I have a session with my fysiotherapist.

Dog Days of Summer

In my next life I want to be a dog

Mind the gap

The one who always locks her bike everywhere!!!

For the first time in my life they stole my bike!!!

Life sucked big time this morning when I found out. 

It was the well known "De druppel die de emmer doet overlopen"

Kikki saw it from the bright side: "Mom, be happy that nothing happened with one of us"

And later on her bike on the way to school: "Dad, actually mom should be happy!" 

"Now she can buy a new bike wich is not so ugly as the one just been stolen."

A Different Turn

A friend made a movie for us. Simone (see link) portrayed us beautifully

It was filmed in winter 2011

Thank you Simone

LIFE is a BITCH

Yesterday evening, Rudi's Madness act with friend

(My head is full of madness right know)

The one moment you are standing in a wonderful garden celebrating someone's 50th birthday

the next moment you are in the hospital "kijken hoe de vlag erbij hangt"

Not good

Xeloda is also not doing what it's supposed to do

Again hope vanished too quickly

I WANT GOOD NEWS FOR ONCE

I want hope

I want something what will work for years

Not important but makes life a little better:

These uggs 

They should be paid by the health insurance.

The solution for my Hand-Foot Syndrome

But with stopping the Xeloda the syndrome and the blisters will stop as well

Time will tell

Another day at the office

Ruud and me went to the three weekly session with our psychotherapist.

It helps us!

Not that we don't talk at home 

but the therapist gets stuff on the table what otherwise is too difficult to talk about.

On our way back we biked through the park and drank a cup of coffee at "Het Blauwe Theehuis"

Nice moments with my hubby

ieuwk

My hand-Foot syndrome consisted of a numb feeling in fingers and feet, for the past 1,5 years.

Now I get BLISTERS under my feet when I walk on my favourite flip flops (or any other kind of shoes)

My uggs (which are ready for the trash can) are much too hot for the summer.

Is above picture the only solution?

HELP!

Sky High

The kids are back from school camp

They had a wonderful time and Ruud and me too

For those of you who remember how Kikki's square feet garden looked like in the beginning.

Now it is an eatable jungle

We have to eat Paksoi or lettuce every evening

after that vennel and beetroot

Doreen and me went to AVL today for a meeting with the genetic department 

We want to know if my cancer has an inherited genetic defect

Not nice information to have but important info for my sister and the kids

In october we will know the outcome

Wat voor weer zal t zijn in .....

...Neck

Went out for dinner at Italian restaurant Mario in the nice village Neck

awesome food, wine and Italian owners

Italie - Germany 2 - 1

Doreen - Claudia 10 - 0

My sister payed the check online without our knowledge

Thank you big sis!

The Heroic Weather

Kids to school camp

3 days together with my wonderful hubby

today the movies

Moonrise Kingdom

Sweet and funny

In the beautiful Eye

And days like this are sweet

Spent a couple of days in Llafranc, Spain with friends

We spent our days in the sun, on the boat, in the sea, playing, eating

Especially the moments on the boat were sweet

That is special to me

Put a smile upon our face

Eviva España

Me and the kids for a short break in Spain

                          

                                          

Looking for Tapiovaara

I saw this stool in a window of a second hand store a couple of weeks a go, just before our vacation.

The stool stayed in my mind and I decided to buy it as soon as I came back.

It appeared to be a design boutique, not a second hand store.

The stool wasn't 45 euro's what I thought it was worth but 320 euro's!!!

 Now my search has begun for an 'accidental' discovery of this design classic.

So if your grandma has one in her barn or attic, I can trade it for bottles of elderflower syrup :-)

Projects

I have compulsive behaviours :-)

Normally my work and other activities keep it under control but now it's gone wrong.

I have already bottled 60 liters of elderflower syrup. Still 30 liters to go and then I will call it a day.

Also it keeps me from too much thinking. 

Today a bad day.

Stopped with one of my painkillers. 

Maybe gone cold turkey or was Tramadol an upper?

Tea Garden

We organized a Tea Garden for one day.

In Marieke's beautiful "hide away" in the Jordaan.

During the 'open garden sunday'.

We had the best help we could find. Kikki, Liza and Zorana

It was fun!

Everybody's gone surfin'♫♫

A bushy bushy blonde hairdo

Surfin' USA ♫♫

We're waxin' down our surfboards

Tell the teacher we're surfin'

Surfin' USA ♫♫

"Ik en Kik"

Most chill childrens party ever!

Kik relaxing after surfing

♫♫ Surfin' USA - Beach Boys

Little Star...

"Little" things that make a big difference in your day

 Marichelle (see link) made me a star

The wonderful smell and looks of a pile of freshly plucked rose petals

Waterfight

On a lazy sunny afternoon

Mees and his friends against Kik and her friends

Survival of the fittest....

I wanted to know where my limits are...

Now I know!

It is 60 km of biking.... in one day.

But we had a lot of fun.

From Amsterdam to Krommenie and back. Pfew.

And I am a material girl... ♫♫

What can I tell....

I can tell the medical side...

Still 4 kinds of chemo's on the treatment list.

First two are Taxol and Xeloda

I can choose Taxol (1 day a week through an infuse, again boldness, ill etc)

Or Xeloda ( 6 pills a day, keeping my hair, less side effects)

I choose Xeloda for now!

And if it doesn't work or stops working in half a year, 8 months or 2 years.... We go on to the next chemo....

My physical side.....

The information gives me peace of mind

But I will always have hope for health and happiness

Happy! Today with the two bracelets I got from my big sister & family.

Who ever said that things doesn't make you happy...

Stick 'n' Poke...

Yesterday the liver echo and today the bone scan.

Again somebody sticking needles in my body. This time a nucleair injection.

I don't want anymore needles poking in me!!!!!!

Tomorrow the results and a plan for treatment...

I was on this train before? Wasn't I?

pfff....

Just back from hockey: selection training for Kik.

And did square feet gardening with Kikki afterwards.

On an afternoon that I heard that the tumors are back.

I had so much pain monday morning that I went to the hospital. 

They did a scan right away and we heard the news at the end of the morning. 

The one tumor grew again and I have two new tumors.

So Olaparib stopped doing what it was supposed to do.

Disappointment!

Today and tomorrow some more tests.

Thursday the results and the news from Dr. Linn what kind of treatment I will get.

Again chemo...