Chicken or egg?

imagesWith precision perfect arrival, I’m back in Seizureville just in time to start worrying about my next neurologist appointment.

It may be the worry about the results day itself that is to blame.

Does my awareness that in a couple of weeks that I’ll have an MRI scan, and then a couple of weeks after that I’ll be told whether my brain tumour has increased in size or blood uptake, somehow cause my seizures to intensify?

The brain is a wonderful organ, even when it’s not working properly. So, who knows how this stuff breaks down?

In the weeks running up to Christmas, I was experiencing relatively minor epileptic seizures. Just fleeting fuzziness really. But, for the first time, my language in those weeks would frequently get confused.

Words would come out wrong or I’d be reaching for a phrase I couldn’t quite get. Most often it happened when I tried to say a phrases we all say most days of our lives (‘doing the school run’, ‘get round to it’, ‘give it some thought’) but the words would come out jumbled.

I guess I had to take more effort to say things that for most of us normally roll off the tongue unconsciously. And perhaps that conscious thought – as I was saying it – is what caused them to come out jumbled.

The speech difficulties gradually faded away before New Year, and now only return after a particularly bad seizure or when I’m pretty tired. For the last couple of weeks, I’ve had just passing seizures. They haven’t really got in the way, nor have they kept me off them bike.

(I’m not going to mention the rain. We all know about the rain).

But just as soon as my next MRI and neurologist appointment goes into the diary, the seizures have returned in frequency and depth.

I’ve got used to the pattern now. First, one deep and intense seizure a day, then two. Little doubt that in a week or two, I’ll be having a handful or more a day: a mix of light, medium and intense.

Today, like yesterday, like tomorrow, I feel seizure-y – like I’m on the cusp of one most of the time. One could break through anytime.

And I’ve notice a funny little trick of the mind.

Sometimes I’ll start to think about having a seizure, and then about 30 seconds later the early stages of one will set in, then it will come on full. Which often leaves me wondering: did my very thinking about the seizure make it happen?

Or does it really work the other way around? The seizure has already started, very light and (metaphorically at least) deep in the recesses of the brain, and it is that made me think about a seizure before it properly broke through?

I suspect it’s the latter. After all, I’m thinking about seizures and writing about seizures right now. And all I feel is the same dull ache in my left temple that I always have. Or at least, the dull ache I only have when I’m thinking about it. (Ooops, there it is.)

But none of it’s helpful as my results appointment approaches.

I want to leap into my doctor’s office and shout: fine, I feel just fine! No change since I last saw you. Next to nothing. Why am I even here? Move along, there’s a skinny Americano with my name on it at Costa on Southampton Row.

But instead I have my little list of peaks and troughs to report. And this time there’s the new symptom of language difficulties. And that – as it always has so far – offers up the worry that this one, this time, my results meeting might be the one that changes everything.

3 Responses to “Chicken or egg?”

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  1. Ben Brown says:

    It’s very hard to know how to respond to such a delicate time, but as a dedicated follower, I just wish you the best and you should know we’re all thinking about you and once again the sharing helps.

  2. Neil says:

    Its hard to explain the impact of negative thoughts or even a poor nights sleep, I have a six month review coming up and even though I have my Oncologist’s review date my scans are usually rushed in a day or two before. I try to take myself by surprise as the wait can be excrutiating and the waiting room of an oncologist’s surgery must be one of the most depressing places on earth with the “Mr XXXXX for treatment” reminding you of the time you spent in there!

    I have been noticing some speech glitches, but my family assure me that they cannot make them out. My daughter has always had the bad habit of trying to finish my sentences off with her own wishes, it has become a bit of an unwelcome game with me offering up her least favourite endings, it keeps me on my toes but the verbal sparring seems to be getting more frequent and I wonder if she sees something or whether it is just her age.

    You didnt want to mention the rain but its a fact and if you have been out in it with the howling gales then my hat goes off to you (I have had mine blown off a couple of times)

    Best wishes and keep up with the good work

  3. Penny says:

    As you say the brain is an astonishing organ & it is impossible to know how the anxiety of your next appointment is affecting you & the seizures.
    All I know is that you are doing a brilliant job, living the day to day life & writing an inspirational & witty record of your feelings.
    Get on that bike when you can & spin those wheels.
    Lots of love coming your way to you & all the family x x
    ps I’m expecting to test out the NHNN for an operation on my back in a few months. Quite like the coffee shop in outpatients.

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