The neuro-oncology clinic (at The Christie) takes place every Wednesday, with patients usually attending every four weeks. I realised – on looking at my diary yesterday, that this morning would have been my usual slot. I won’t miss it, except maybe for the chance to chat with my mates on the green chairs.
It has already been two weeks since I received my MRI scan results.
Where does the time go? Like, seriously!
It is refreshing to be ‘out of treatment’ – but I’m not dancing on the ceiling just yet.
In the middle of last week, I stopped taking steroids (as planned). And since then, I’ve had a period of feeling generally unwell as my body adjusts. Thankfully, I seem to be over the worst of it.
More changes are afoot, namely to my current anti-seizure medication/regime.
At my last (neuro-oncology) review in March, we discussed the pattern of my seizures. And, as a result, agreed that it is now time for me to stop taking Clobazam each night (I have been doing so since May 2017). We are changing tact, and I will start taking it on an as-and-when-needed basis. More of a “rescue remedy” that I’ll keep in my purse to be taken if/when a seizure strikes.
It sounds quite exciting but probably isn’t. In preparation, I’ve been increasing one of my other drugs (Lamotrigine) to compensate. And Keppra, the mainstay of my anti-seizure meds is remaining unchanged.
It feels a bit bittersweet. Clobazam (combined with Lamotrigine) has been effective in stopping my more prolonged seizures – where I was losing the use of my (left) arm and hand for up to 45 minutes a time. And yet, being a sedative – I often wake up with a Clobazam induced hangover!
On the one hand, I’m looking forward to being as energetic as someone in a Berocca advert. And on the other, can’t help worrying about potential flare-ups.
Only time will tell, and I am of course willing to give it a go.
I promise to be back soon with more updates.