I’m going to France

Marcus and I are going on holiday to France (Nord-Pas-de-Calais) to a city called Boulogne-sur-Mer (only for two nights). We booked hotel de la Matelote. It’s a try out because I’m not sure at all if I can stay awake that long and have energy enough. It’s also to give my wife some time off. She’s taking care of me 24×7. She needs also a break. On our way back we’re visiting a city called Leuven (in Belgium, just above the capital Brussels). We’ll also stay two nights in Hotel Begijnhof (Congres) Hotel. I also need a break from keeping this up to date. I’ll be back next week (Tuesday the 28th of July) with hopefully a great report about our holiday.

Hendrik & Magda

Left2Right: Hendrik, Magda, Monling and me

Hendrik and Magda came to visit us today as planned long ago. They are from a city called “St. Pieters Leeuw” (near Brussels, the capital of Belgium) so despite there was no traffic jam they spend over two hours in traffic. They brought so many gifts, among them was a black cylindrical box (like the kind used for hats). This box was filled up to the brim by delicious chocolate by the famous Pierre Marcolini. We quickly made a cup of espresso for them (and me) as chocolate goes down best with strong coffee. The chocolate was really delicious!

Chocolate by Pierre Marcolini

Then we took them to the centre of Amsterdam to a Chinese restaurant called “Oriental City” to eat Dim Sum (we had lunch there before with Bas and our Czech friends). We went by taxi because it is a maze that part of Amsterdam (there are so many on-way streets and no parking can be found there!). We went up to the second floor to sit down at a table next to a window. Monling ordered many dishes (about ten) (you can see the many dishes with special food on the table on the first picture).

We talked about the years that I worked for TEC Belgium together with Hendrik (pls. refer to my post about “Louis & Sylvia”). Suddenly the headache (that was slowly growing all morning) was accompanied by nauseousness so we had to go home. Unfortunately I have less strength in my right arm and hand so I have to walk on the left side of the spiral stairs (no worries, I didn’t get another seizure!).

Thanks you two for the delicious chocolate and other precious gifts!
We’re looking forward to seeing you again!

Intake by Roy (physiotherapist)

Today we met with Roy, physiotherapist from the Sloterparkbad, for the actual intake. He asked me to lie down and to perform all kinds of exercises. Then I had to stand up to do the same exercises.  This was followed by measuring my length, weight, BMI (Body Mass Index) and BFP (Body Fat Percentage). Finally we went upstairs (to the fitness room). I had to sit on big blue ball, to perform a leg press and to row 2000m. At the end his conclusion was that my condition was fine. Hydrotherapy would be possible only after the summer holidays (because in a full swimming pool he can’t pay enough attention to me). This gave me so much confidence in Roy that we decided to go ahead and so we made an appointment for the 20th of July with him.

Bye Rosalien

Rosalien (my ex-Physiotherapist)

Today I said goodbye to Rosalien. Perhaps we’ll still meet eachother at Hydrotherapy but I can’t be sure. Rosalien was my favorite therapist in the RCA. She was the one that went “Nordic Walking” with me when I couldn’t lift my right arm, went cycling with me when I couldn’t cycle (I forgot to put my right foot down) and played badminton with me to make me run and jump without me noticing the pain.

She applied all kinds of techniques (e.g. massage) if my right arm, shoulder, hip, calf, leg and foot were hurting. But above all she considered me “her” patient. That felt so good, that personal touch. Thanks Rosalien for your listening to all my boring problems, for helping with the ‘politics’ in the RCA and thanks for being my favorite physiotherapist!

Hendrik de Hond

A French Bulldog called "Hendrik de Hond"

Frits and Regine invited me for dinner the other night. They offered to pick me up before dinner and drop me off at our home afterwards. Frits lives in Leiden and has Peugot cabrio and, because it was a beautiful day, we drove with the roof open. Luckily for me Monling had suggested to bring a scarf because the wind was cold.

They invited me for a typical Italian dish: Risotto. I asked Frits on the way over whether or not he had bought all the ingredients for risotto and he answered “Not yet but I have most of them”. Ever since my speech at their wedding in which I compared Frits’ character with the stages in the recipe for risotto am I called “Mr. Risotto” I knew what to buy.

First we went to their home.Upon arrival I went straight in to admire their (young) dog: the French Bulldog you can see in the picture above. He’s called “Hendrik the dog”. They keep him in pens outside, inside or in their bedroom. He is so lovely. They bought lots of toys for him but “Hendrik de dog” is most interested in a toy called “Gumba” or something like that. He is so lovely (or did I say that already?).

When I was about 16 years old, we also used to have dog. A black Labrador called “Kevin of the Keep”. But once I married with Monling she transformed me into cat lover. She managed to even transform my dad into a cat lover even though he used to throw all kinds of things to cats. So much influence my dear wife has :-).

After a while we went to the supermarket and bought there everything we needed: a yellow and green paprika (pepper), some mushrooms (champions), a green zucchini, butter, etc. When we finally got home Frits carried a big bag of shopping into the house.

He put a chair (with pillows) in their kitchen and started to do what I was saying: put the “broth cube” (I really don’t know how to say “bouillon blokje” or is it “vegetable beef-tea cube”?), add the finely chopped garlic and onions, add rice (real risotto rice) and so on. When we were finished 25-30 minutes later we could enjoy a perfectly cooked vegetarian risotto with yellow peppers and zucchini.

Afterwards we had some truffle cheeses that Bas and Marcus had brought me from Italy. A truffle cheese called “Crutin with Black Truffle” from Beppino Occelli and a truffle cheese from “Caseificio facchini Walter” Sigillo Loc (Parco del monte cucco in Umbrie). The first cheese is still on the menu of the restaurant “Cantina della Vetra” in Milano. They were both delicious.

Thanks to Marcus and Bas for the cheeses, thanks to Frits and Regine for the invitation to see your “Hendrik” and have dinner with you!

New born baby

Juwan (8th July 2009) and his proud mother

We received a card from Danielle and Nio announcing the birth of their son “Juwan”. We went to a shop selling baby clothes and I couldn’t believe my eyes: so many “happy coloured” clothes for babies and young children. Not a mother herself, Monling decided to buy clothes for when Juwan was one or two years old.

Today was the day that we went to see the new born baby ourselves. He looked so cute! So lovely! Monling had made a great decision by buying clothes for Juwan when Juwan would be one or two years. We also gave Danielle a package from my parents with two more t-shirts. My parents know Danielle because she was our contact within Acision (my employer) and my mother was the contact for us.

Beschuit met muisjes

We got the traditional “Beschuit met muisjes”. This is a a kind of twice baked biscuit with anise seeds (covered by white and light blue sugar).

We wish you a prosperous life Juwan!

Angeligue

Angelique is the 2nd person from the left

Last night Angelique came to visit us. I know her from the time that we both worked for Certec (a scale and cash register manufacturer). I worked for more than 5 years for Certec (until March 1996) and I still have many friends from that period.

Angelique was one of the initiators of the sailing trip across the “Waddenzee” (a sea in the North of Holland) in a large sailing boat called “Vertrouwen”. We left for a trip of three days to Terschelling (the 3rd island of Holland). The Waddenzee does twice per day become “dry” when it is low tide. To prevent the ship from sitting on the keel and then gradually tilting, the “Vertrouwen” had no keel but instead a lee-board on either side.

So during low tide we could actually walk on the bottom of the sea and walk around this now huge sailing ship (we had to use a ladder to climb on board again). You can see on the picture the many seals that benefited from the low tide. It was a great trip with so many friends. Thanks for inviting me too Angeligue!

Marjolijn & Gilbert

My dear sister and brother-in-law came back from their holiday. They had been to the South of France to a city called Mouzens (near Tarn). They brought us a bottle of balsamic vinegar from a city called Albi. Because just that week we ran out of balsamic vinegar, it was a very welcome gift. They put their (digital) pictures on an USB-memory stick so that we could see their pictures together. They were so beautiful! Lots of sunflower fields, canals with house boats and old buildings.

We went for lunch to Club/restaurant Opium/. When we entered the restaurant a waitress came to me. She said “Please remove your hat” (“petje” in Dutch). When she noticed that there was another “hat” (my blue helmet) underneath she looked surprised but I didn’t have to remove it.

Later, when she came over to our table to ask what we wanted to drink, she was very friendly. She asked me what had happened to me and I told her my story (the brief version). My sister was surprised about the frankness of the waitress. I told her that it had happened two or three times before and that I preferred that people ask instead of point and/or laugh (that happens 10 times more).

Finally the food came, I had goat cheese salad (grilled!) and it was delicious. I hope I don’t get the Q-fever because I read in “Het Parool” (a newspaper most citizens from Amsterdam are reading) that Q-fever is very contagious (also for humans) and can only be transferred by GOATS! Can you imagine that I die from Q-fever instead of from my 4th-grade brain tumor. What a laugh!

Exit RCA

Rosalien (my physiotherapist) asked me a few weeks ago what she could do to help me further along. You must know that at this moment I feel quite stable. I’ve the occasional epileptic seizure, headaches and my muscles and joints hurt almost continuously. To relieve those pains I’m assisted by a large team of therapists.

There is psychotherapy (René ter Horst and I can get along very well) and speech therapy. Speech therapy was discontinued (Laurien and dr. Koppe thought it no longer necessary) but last week (to my surprise)  it suddenly re-appeared in my schedule. This week Thursday there is an appointment with Laurien and on Friday there is a full hour appointment with René ter Horst and Laurien van Zeist. Strange! My guess is that Laurien is responsable for this appointment with the psychotherapist and me. What topic(s) we will discuss I don’t know.

In the RCA I also attend also sports therapy (table tennis), I attend hydrotherapy (which is quite exhaustive but I like it very much) and then there is physiotherapy and fitness. Rosalien is of the opinion that I must move on. In the end there are other patients that could benefit from the open place that I leave behind (I fully understand this). So she asked me if knew a sports-centre/swimming pool in Amsterdam-West that I wanted to go to. I mentioned the Sloterparkbad annex Fitness Center to her. We agreed that she would make a letter and ask around and (if suitable) then we (Monling and I) would make an appointment. This all happened two weeks ago.

Monling drove us to the fitness-center on the day and time of the appointment with Roy but when we inquired there was no appointment with Roy (or an alterative physiotherapist) to be found in the appointment book. Some calling around finally produced an appointment: we were in the ‘old’ place whereas we must be in the ‘new’ place. A new appointment had to be made.

Today we went to the new appointment. Roy was still busy with another ‘patient’. He appeared 45 minutes later(too late) and apologised for that fact. We were ushered into a room without windows but with an impressive (read: massive) treatment annex massage table. Roy read the report that Rosalien had prepared for him and decided that I must fill out many forms. Apparently the physiotherapists, the fitness-centre and the swimming pool were, although all in the same building, separate entities. 

I pointed out that our sole purpose of this visit was to find out whether I could get the treatments fitness, hydrotherapy (swimming one-on-one) and physiotherapy in the Sloterparkbad annex fitness center annex physiotherapy centre or not. We make another appointment for that to allow Roy to measure my performance and endurance and other key parameters. He will the next time also report back on the result of his discussion with his boss about the hydrotherapy (I really need somebody who keeps an eye on me because when I get a seizure in the water I will surely drown).  

This appointment is planned for the 17th of July with Roy. They decided that we had to fill out the forms anyway. He followed us upstairs to communicate to the receptionist which forms were required. That confused the receptionist so finally we left without filling and signing any forms. Ahrgg! To be continued.

Evaluation of my 6th chemo

During the 5th evaluation (Evaluation of my 5th chemo) we received some very confusing news. Today we heard why there was so much confusion between all parties: the International Standard for grading tumors has changed. The spectrum of grading tumors has shifted towards lower grade tumors: what used to be called a grade three tumor may now be called a grade four tumor (if it is a ‘bad’ grade three). If you’re confused I have probably explained it the wrong way. Just let me know (send an e-mail to Cranius). 

Dr. Büter (Neuro-Oncologist)

In fact the neuro-oncologist explained that it also depends on where you perform the biopsies. If you perform a biopsy in one part of the tumor you may see a very different grade tumor than if you perform the same biopsy in the same tumor but only a few millimetres away. Very reassuring of course. Not!

They asked how I was doing and I told them that the headaches (in the left side of my brain) are regularly quite severe and that the skin covering the hole where the boneflap used to be formed a bubble (instead of the normal slight hollow formed by a much softer skin).

I had a (minor) seizure on the 24th of June. Then I felt the seizure start at my right hand to slowly ‘invade’ my right arm, my right leg and the right side of my face (subsequently) until my right side was completely paralized. I even couldn’t speak. The previous time I had a (minor) seizure was on the 27th of February (2009). That (low) frequency they thought was good news.

We are left with many questions, mainly because of the discrepancy between various bits of information: they just don’t match. We can’t believe that they are telling us porkies so that our only conclusion can be that they don’t know. We can only rely on ourselves and on filtered medical information (by the medical staff or ourselves). Such as the results of my MRI scans. Now that sad conclusion brings us onto a happy topic.

My blood values (bone marrow: good, kidneys: good and my liver: good), no fever, insignificant high blood pressure (max 150/99) together with my good condition (I still visit the RCA twice per week) guarantee optimal conditions for a longer life. The neuro-oncologist and neurologist compared three MRI scan results for us:

• just before the first chemo (MRI 09JAN2009, evaluation 14JAN2009)
• after the third month (MRI 27MAR2009, evaluation 08APR2009)
• after the sixth month (MRI 28JUN2009, evaluation 01JUL2009)

The bright white tumor tissue on the MRI scan has not only not grown but has also slightly reduced in size!! So we can’t predict how much longer I will live but for sure it’s longer than what we thought before.