Maurizio and Katia

Katia and Maurizio

Today Katia and Maurizio Calderone came to visit us from Palermo. I used to work with Maurizio: he as manager of the Production Dpt of H3G Italia and me as a representative of Logica-CMG. I still remember that Eric-Jan Krupe introduced me to Maurizio (in the presence of a truckload of other technicians while he also didn’t know who Maurizio was). Now Maurizio (and Katia) are two of our best friends.

Brothers

We were invited to their wedding (3 years ago already, how time flies!) on Sicily.  We stayed for a few days in Palermo in one of the 5 or 6 condos of the Calderone family.  It’s nice to have been adopted by the entire family (Maurizio has besides lovely parents 6 brothers and 1 sister and most of them have children). We tried to setup a business together and we would have succeeded for sure if I had not developed a brain tumor.

Almost all brothers from the couple

Almost all children, grandchildren and great-grandchildren

Tora

We have three Persian cats. One is a tomcat. He has long white hair, most of the time a bad breath, his name is Tora and he sleeps in my bed. Some of my friends know, even a few guys in the office know and they are surprised or just feel it is plain disgusting. Which it probably is but please consider that he has only access to a very clean balcony and that we groom him well. In the evening he waits near the bed room door and takes his usual place: first under the blanket to warm up and then occupying an ever increasing part of my pillow. I love my tomcat.

I’m 47 years old and I have always loved to live and work in international environments: I met my Taiwanese princess in Japan, we married in Taiwan, I worked in countries like Belgium, Ireland, Poland and we did both (live and work) in e.g. Italy and the Czech Republic. During these journeys have we met a lot of people and in most cases have we kept in touch. Most of the members of my Czech Team are still good friends, tonight two friends from my Polish Team come to visit me and I get regular visits from colleagues, partners and customers (now all friends) from Italy and the Netherlands. I love my friends.

The strong and positive support from spouse, family (thanks Marjolijn for supporting our parents and me and being such a cool understanding person!!), friends and pets :-) is overwhelming. People from all walks of life each with characteristic behaviours, some are serious and some just make me laugh (especially Giuseppe and Simon) and so many suddenly reappear in my life, like they never have been away, like flowers in the dessert after rare rain. And for those that soon will leave: I’ll wait for your return: Godspeed to you Frits and Regine on your ambitious trip around the world and to you Anke (be careful in Iran). 

I probably will write about this again and again. Because it is such a special topic. Because I truly appreciate your efforts to make my situation easier for me.

Parents

I had not seen my parents for over a week so I decided to make the trip by train to the village where they live. My dad picked me up from the station and was obviously nervous as he was talking a lot. My parents had prepared a great lunch and while we were eating my mother asked if there was anything they, my parents, could do for me. She was referring to the period of surgery and recovery. I was not prepared for the question, I hadn’t given this any thought.

In one of my previous posts (Bits and Bobs) I already explained the complex issue (for me) to keep my family properly informed. Their question however was in which way they could be involved. I realized that until now I had always aligned my partner and family members (not that there was much to align apart from the annual Christmas and New Year hassle). It is just that my wife is not much of a party animal but my parents and sister enjoy the family festivities. I have always been the one to work out those differences with diplomacy.

However during the probably stressful day of my surgery and the a period of my recovery will I unable to focus on those around me. How will they cope and will they cope? Should I just not bother? Tuesday will I hear what the verdict is. I hope I will have the time to make some final adjustments to the master plan. I feel like in a canoe while it is speeding up towards the unavoidable rapids ..

Bits and bobs

A major headache and sleeplessness resulted in a rough night last night. A reaction on the stress of MEG, MRI and fMRI. Today my dear sister celebrated her birthday by inviting my parents and us for lunch. And a nice lunch it was. She gave me a CD (my parents gave me a book) for being brave enough to get through the fMRI. I feel kind of ambiguous about that. On one hand do I appreciate that they care. They must be about as concerned as we are about what is going on in my life at the moment. On the other hand do I prefer not to get any sympathy as I feel that I must be strong to face what is coming towards me. 

I am 47 years old but I know that I will always be a son and brother. I can’t ask my family to (pretend not to) care as I understand this but it forces me to either downplay my real feelings or discuss this ‘problem’ with them. I’m sure that they will perceive the latter as a rejection which is for sure not how we feel and what we want. Anybody out there with a view and/or experience on that? How to deal with the love of your family in situations like these? 

WordPress has created some powerful features like Blog Surfer and Tag Surfer that allow me to keep an eye out on interesting stuff related to my blog. Pharmawatchdog writes that most anti-epileptic drugs (like Keppra) seem to double the risk of suicidal behavior (up to 0.43%). Although it is not a huge increase is it interesting to read that a drug that reduces the risk of a seizure in fact increases the risk of suicide. What to do here. It have recently learned that my desire to control gives me the strength to deal with my brain tumor but what does control mean if your own ‘vision’ can’t be trusted.

I have decided some time ago that I want to have the freedom to decide (control), for myself and my family, when my life is not worth living anymore. I realize that this is quite a controversial topic for some and even for myself. The Awake Craniotomy comes closer and so does the deadline for making the arrangements for euthanasia. I’m positive that I don’t need it but it’s like an insurance: you take it for the small chance that … . And then it is better to have it properly arranged. On Monday I will have a meeting with my General Practitioner to discuss his involvement (which is required by Dutch law).

New Years Day

Today is the first day of 2008. Wow! I can’t help wondering whether or not I will be able to face and survive all medical challenges. And if so, whether I will be able to stay in control and in touch with reality. Perhaps my major concern at the moment is whether I still have the personality of before the ‘incident’. I believe that this is not the case.  It is at this moment unclear to me whether it is just me thinking so or whether my wife, family, friends and colleagues think or sense the same.  I make a mental note to monitor this and to regularly query those around me.

The first minutes of 2008 I spend with my wife. There were tears in her eyes, for many reasons. There is nothing I can say anymore that will soften the pain, frustration and worrying. We know that this is going to be a very difficult year but how difficult will difficult be? This afternoon we visited my parents with my sister and her partner for a New Years Day celebration. It was a well orchestrated and pleasant event with a lot of great food and great conversations. After two hours I felt very tired and we went home.