No Green Neuro-Oncology Chairs Today.

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.

Hospital waiting room with TV black and white

The ‘bloods’ room, adjacent to 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.

Sar x

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2 Comments

  1. Barbara Renel
    April 11, 2018 / 7:49 pm

    Thank you for sharing x

    • SarahGaffney
      Author
      April 12, 2018 / 12:11 pm

      Thank you for reading Barbara xx

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