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Bits and bobs

February 2, 2008

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).

3 comments

  1. I think I know how you feel with your family. When I was newly diagnosed with MS I didn’t want to talk about my MS with anybody from my family, either. I didn’t want to make them feel uncomfortable thinking about me and what was going on with me at that time– but in retrospect I think it was more self protection as I don’t have to think for a moment about my disease if they don’t talk to me about it.

    Over time I felt more confident in talking with people. The more I came to realize that I am doing better with the diagnosis myself than I felt having the strength to help the people around me.


  2. Thanks Brauchi, that is exactly how it is. Thanks for your comment!


  3. […] one of my previous posts (Bits and Bobs) I already explained the complex issue (for me) to keep my family properly informed. Their question […]



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