Going down

It feels like the last few weeks have been pretty tough. We saw my neurologist a week and a half ago to get the MRI result. I was really nervous about this. I wasn't expecting a bad result, but there was a part of me that was hoping to see a big change in blobby.

The good news is that the swelling has decreased significantly, although there is still some oedema present and it is still compressing some structures such as the cerebellar peduncle (don't you just love that word - "pe-duncle". Makes me giggle everytime I say it). Blobby is about the same. I expressed surprise at this but my neurologist said that he didn't expect the tumour to shrink too much. But he was happy with how much the swelling has decreased. He did think that the thumb tremor I had was due to the ongoing swelling. And he also reminded me (yet again) that the fatigue and nausea are due to the radiation and may persist for a few more months.

The next step is to go back to my oncologist for a review, and to get off the dex. The neuro said that he wants to take this slowly "given how rough a time I've had". Which I guess is doctor talk for "we don't want to screw you up again". The main problem with the dex is that it mimics the bodies production of cortisol. So if you stop taking it suddenly, your body doesn't produce enough cortisol and you can can get very sick. You can actually drop the doses down fairly quickly, until you get to 1mg, as this is the level that the body naturally produces. I am now taking 2mg, every second day, so effectively 1mg daily. And boy has it been tough. The first day when I didn't take my tablet was ok. The next day was a nightmare. I was fatigued, nauseous, I couldn't concentrate, I was emotional, and I just felt wrong. I have been up and down since then. Obviously the day I take the tablet I start to feel better, then cycle back down. Today was the first day where I've actually felt good again. Hopefully now I can stabilise before I have to drop down a dose again.

So all up I felt a bit disappointed after the last review. I was hoping that more of the swelling would have gone down. I was hoping that I could be off the dex a bit sooner (I go back in another 4 weeks to see my neuro). However I know that everything is going down, and that is a good thing.