My fathers eightieth birthday!

Today was again a busy day. We were visited by my sister and brother-in-law and reached an agreement over the present for our father who has his eightieth birthday on Thurday the 26th of March. A milestone that must be celebrated! But my dad doesn’t want to celebrate his birthday because, so I believe, he’s not in the mood. And who can blame him for that? A dying son and nothing or nobody can change that. My parents are trying to not show any emotion. And they have become great actors, I almost can’t see that from time to time they are crying. Me too, I also have to cry from time to time.

But I also have to laugh a lot. E.g. about a silly programme on the TV or if our cats look like they are innocent (not!). And I can be very happy because Monling takes good care of me and we love eachother so much. And I can e.g. enjoy receiving so many cards, especially from Caroline Mesman and my sister. They use every opportunity to write. And I’m happy that my family and closest friends pay me a visit that often that I must “hit the brakes” sometimes (for sure while I’m undergoing chemo therapy). Last but least this Blog gives me so much fun and through it I made so many new friends (. 

In short: I’m enjoying myself, it is almost ;-) the best time of my life! But how to tell that to my family. Well, I’m hoping that they read this post again sometime when I’m no longer there. And then I hope that they remember, just like when we were told the prognosis last year, me stating that I had a great life. I hope that they believe me. Because it’s the truth.

Birthday of my sister

Marjolijn

We celebrated the birthday of my sister in a restaurant on the other side of the Sloterplas (a lake located opposite from our house). I don’t feel safe to travel alone so my brother-in-law and my sister came to pick me up.

I felt quite uneasy. Not because of my brother-in-law’s driving (he sticks to the maximum speed, doesn’t “drink-’n-drive” and looks out for any lunatics that you’ll find in traffic). No, I’m feeling uneasy when I’m forced to face a situation where I’m not in control. Actually: I hate it when have to depend on others for performing tasks that I used to be able to do myself.

Anyway <sigh>: the food (lunch) was delicious though (my dearest sister spend her money on a three course lunch). Thanks Marjolijn!

My Father’s Birthday

To celebrate his 79th birthday my father invited us (most members of the family, including my aunt) for dinner in a restaurant in ‘s Graveland called ‘t Swaentje (The Little Swan). Wonderful food, friendly service and a relaxed atmosphere. I was afraid of ‘emotional’ situations but nothing happened. We has a very pleasant evening. I was glad to be home though and went straight to bed. 

It was especially nice since my aunt was there as well. We (my aunt and I) hardly ever meet each-other. We (my wife and I) have been travelling a lot abroad over the years and we’re clumsy with birthdays (forget them, don’t know when to go, too tired ..). She presented me a with a cookbook by Nicola Graimes “Whole Foods” that gives more than 100 vegetarian recipes for “Health and Healing”. I have several cookery books, including ones about vegetarian cooking but this one is the best. If I had had the right ingredients this weekend I would have cooked something already. Thanks aunt Yvonne!

In his blog Mark Miller (Markmillermusic) has put a few documents on diets and gliomas in his library. Apparently (I’m actually surprised it surprises me) there is this relation but I have no clue what to eat and what to avoid to improve my chances. At the moment I drink no alcohol (for obvious reasons) and try to eat less. It is a good start but I can do more. I’ll keep you posted.

D-day Surgery: 24 April 2008

It is my father’s birthday today so when the hospital called with a date for my craniotomy I took that as a sign of good fortune. Surgery is planned for the 24th of April 2008! It is not really as fast as I had hoped for (I expected a date in the next two weeks) but this will have to do. There is no time for alternative plans anyway.

My wife watched an episode of a TV programme about brain surgery (recommended by the “Super Nurse”) and when my wife dared to watch it I did too. It was actually not as confronting as I thought and very informative. The case of the main character (a young woman) is so similar to mine. You can find it here, unfortunately it is completely in Dutch.

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).

Birthday of Monling

My wife had her birthday today. She got her presents (enough cosmetics to start a small drugstore) last week already so I just got up at 9:00am this morning, went to the bakery, bought fresh bread, ‘butter cookies’ and some pastries for breakfast.  We had a pretty easy going day and went to Haarlem (less than 30 minutes by train from our home) for dinner in a restaurant called “ML” (http://www.restaurant-ml.nl/).

We had a splendid evening while savouring the many courses that one after another were taken to our table: 2 amuses, 3 first courses, a main course, a collection of deserts and a kind of spoom. Wonderful food cooked to perfection with a grand dose  of creativity. It took us more than three and a half hours to finish it and we loved every minute.