After yesterday's post about feeling grateful, today I am feeling less so. I saw my neurologist today for my regular checkup but I went in armed with lots of questions. After the last few months of bouncing around on the dex, to say that I am feeling frustrated is an understatement.
The great thing about my neurologist is that he understands this. And I'm sure he wants me to feel as good as I can, but I guess there is only so much we can do.
Obviously, nausea (and fatigue) are still my main problems. He remarked that it is no wonder I am nauseous as "your tumour is tickling your cerebellum and it doesn't like that". I actually laughed out loud at that, and yes now, all I can see is "Tickle-me-Elmo" inside my head, laughing away. We discussed whether there were any other medications I can take. He listed a few but doesn't want to put me on them due to side effects. Plus they are really just managing the symptoms. James had found a recent research article that discussed another drug - Emend - and it's effects on brain tumours (in that they help them shrink). However my neuro hadn't heard of it and a quick look at MIMS shows why - at $130 for 10 tablets it puts it out of the reach of most people. Plus it is usually only used in a chemotherapy cocktail. Nevertheless, he said that he would talk to my oncologist about it and whether there was any trials or samples or something.
There is also a progesterone blocking drug we could try, but he seemed a bit reluctant to try that as we don't know what type of receptors are on the tumour (oestrogen or progesterone). He did agree that I should talk further with a gynaecologist about it though. He was happy to refer me to my old OB (and in a strange coincidence, he mentioned that she lectured him at uni, and was really tough. Tee hee I can imagine my OB being like that).
We discussed driving - he thinks I am fine to drive although not long distances. And working - he thinks that perhaps I shouldn't try until the new year. Which is a bummer, and a relief. Especially since I can't find one at the moment, although a job ad has just popped up that would be perfect so I may well still apply for that one and see what happens. If I don't get that, I will just stop worrying about it, but it does mean I may have to talk to centrelink about what I might be entitled to.
Otherwise I am to stay on the dex until January at a dose of 1mg. I had a bit of a nystagmus today which is a bit of a worry and obviously why he wants me to take it all a bit slower. He said it may take up to 6 months to get off it, and then my brain could take 6 months to adapt. He also didn't have all my test results from the hypertension specialist.
So definitely feeling very frustrated. And perhaps a little more like this......than a happy ticklish version.