The last day not knowing

Playing in the sand dunes of the “Drunense Duinen”.

This morning I was called by the secretary of the neurology policlinic. Tomorrow at noon me and Adrienne have an appointment with my neurologist and the hematologist. During this meeting they will tell me the findings of the biopsy and the treatment plan. Of course, it is good knowing what is wrong and creating a plan to start treating it. But at the same time, it will also be the end of not knowing, of trying to ignore what is going on. Naturally, I have been wondering what made the pathological assessment of the biopsy samples so difficult. I do not know a lot about pathology, and certainly not about brain tumor pathology (through my work I know a bit about common breast and prostate cancer histology), so I don’t know what the difficulties to assess the samples could have been. I am happy that they have had a very thorough look together with their world-renowned MS pathologist involved, at the same time, I worry that something that is aparently that abnormal could turn out challenging to treat (hopefully the opposite turns out to be true).

Logically, the long wait has been a nervous one at times. Luckily apart from being tired and sleeping poorly (this could be a side effect of the dexamethasone -the steroids I am taking- probably amplified by the stressful situation), I am feeling relatively ok. Both my speech and coordination are worse than they were, but it is impossible to pinpoint the cause. It could very well be due to the mass in my cerebellum, but it could also be a result of the biopsy, my MS (speech and coordination problems are not new to me) or the lack of sleep. At this stage, I don’t know; it is most likely a combination of all of the above.
I filled my days with positive things, with the family. Hard times are surely coming, so I am trying to enjoy the good times as much as possible.

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