A pronounced change

speech marksIt feels strangely validating to have started showing outward signs of my brain tumour when previously it had all been, well, in my head.

Until the last couple of months the only indication of my tumour’s presence would be the seizures I have that only I can feel. Unless you were looking out for it, you probably wouldn’t notice I was having one.

But more recently, as my seizures and tiredness have increased – we hope just a temporary low in the ever oscillating ebb and flow of my condition – I have started to experience speech problems too. Particularly when I’m tired or under pressure to say something quickly.

I’ve started jumbling up my syllables, stripping up over toonerisms and runningafewwordstogether so it sounds like I’m drunk.

Most pronounced is when I can’t quite find the word I want.

It’s not that I’ve forgotten it. And it’s not that the word is on the tip of my tongue. It’s more like – in the dictionary of my brain – the space where that word belongs is simply empty.

Like watching an internet video with a slow connection, my mind buffers until the word eventually fits back into its rightful place.

It means I trail off at the end of sentences, unable to finish. Or I end up saying things like: “Can you pass me the, the, the, you know, the… milk?” Or I repeat words just to make sure I’ve said them.

I’ve sometimes lost track of what I’m saying completely and have had to slow down, and force myself to start again.

“Hold on, let me just get my thoughts straight for a second,” I said yesterday while making a tup of key.

The development doesn’t come as a surprise. From day one, I’ve had speech difficulties while having deeper seizures (see this video). My tumour is right up against the part of my brain responsible for processing language and turning it into speech.

Many brain tumour patients experience similar dysphasia. I don’t doubt that when the tumour starts to grow aggressively, my language will be one of the first things to go.

But with any luck, we’re nowhere near that yet. The language problems will go away as soon as my good health returns. I don’t feel my confidence is dented, and I don’t have that many opportunities to speak in front of a crowd anymore.

But it does beg the question: When my language really does start to falter, will I mind when the person I’m talking to helps me along?

I met a solicitor once who’s stutter was so bad it was almost impossible not to offer up the word we both knew she was trying to say. She must have been used to it but – however sympathetic and patient I tried to be – I found it absolutely maddening. If I just said the word, I thought, we could move a lot quicker, couldn’t we?

My wife already does throw in the odd word (but I think couples do that to each other anyway). A few others have started to do the same. So far, I don’t mind.

But now, even my kids have started doing it during bedtime stories.

Just like I used to when she was first learning to read, my five-year-old will gently nudge me towards the sound I’m stuttering over. Or she’ll complete the word if I simply can’t get it.

She often hugs me tighter when she does it, as if to reassure me. My son asks kindly if I’m having a ‘dizzy’, whether I need to take my medicine.

The swapping of our roles is heartbreakingly sweet and painful in equal measure.

4 Responses to “A pronounced change”

Read below or add a comment...

  1. Ben Brown says:

    You can’t be worse than the bloke who asked me some questions about my bike as I was leaving the pub last night. He said he was from Yorkshire but I’ve been there and I could understand most people.

    Ah, having a dizzy, bless him.

    Let’s hope it’s temporary and some cycling knocks it back into line.

  2. Cathy says:

    Gideon, I’m no doctor but I am the wife of a BT survivor with the same area of brain affected. Have you seen your consultant recently? They may be able to help.

    If you are interested in 2 other bloggers see
    http://www.jimbo63.com and onefootingrave.blogspot.co.uk

    Keep strong and laugh as much as you can, Jim started to confuse the word Left for French ‘my french knee hurts’! It still makes me smile :)

  3. Neil says:

    Hi Gideon,

    I know where you are, I was having absences 2 years ago which seem to resemble the symptoms you are describing, felt like a head rush and my team of GP’s put it down to all sorts of things over the few months till I insisted on a neurologist referral and an MRI. I have piles of books on panic attacks and stress problems which I was assured that I had and then a popular internet phenomenon of “adrenal fatigue” seemed to pop up, which just seems to be scams. ( I used to work in your neck of the woods and my docs did not tell me at any time not to drive 350 miles home)

    I was advised after my surgery that a lot of people find relief by cutting sugar out of their diets which with exercise I found a relief, lots of material on ketogenic dieting out there, but I do suffer from terrible sugar cravings. That and mct oil which just seems to be coconut oil concentrate.

    Its hard waking in the morning and wondering what the day will bring but it sounds like you have a great family and a lot of support hold them close, I have been told umpteen times to live each day like its your last, but these days I seem to be recovering quite nicely even though work have written me off, which really hurt. Should get my licence back in a couple of months!

    Dont really do the emotional thing very well, which is something this has highlighted but you have inspired me to get back out and train. Still get fatigue though and the ability to push through that to get things done seems to be getting easier.

    I still havent been able to erase bob the builder from the emergency mental soundtrack, even though I now have a tv and stereo in front of my turbo trainer.

    Look after yourself!

    Neil

  4. rachel says:

    Dear Gideon,

    Saddened me to read your position. I had the same experience with my low grade glioma brain tumour. I suffered 7 seizures a day & nightfor 8 months. I cried everyday cause i didnt feel right. Dr kept blaming anxiety until I paid privately at Colchester for neurologist. MRI showed golf ball sized tumour in my left temporal lobe. Started to affect my speech & balance as well. I was sent to NHS Romford neurosurgeon & he told me to leave tumour where it was & monitor me every 3 months. Just get on with my life. Ludicrous!! I then paid privately in London & they said why would you leave it. It won’t get any smaller. Here I am 1 year later after brain surgery through London NHS with most of my tumour removed. I am blessed but lost any faith in Romford with their answers. I couldn’t live my life as I was, I wasn’t me anymore. Please email me if you would like any help or advice as I want to help people in such an awful position I was in 1 year ago.

Leave A Comment...

*