What a difference a wig makes!

Thank you all so much for your encouraging comments after my heart to heart on the last post here. Did me lots of good to share all that, and even more to know it had hit a nerve with one or two others too. Suffice it to say you're an excellent therapy group :) and now at last my wig referral's come through, and I LOVE IT!! so much better than my little hats. just don't stand too close to the oven door apparently, or you might melt.

In this post I also want to look at another feature that's brought big changes to my life over the last year, and that's the issue of communication.A year ago, what took me off to A&E was primarily that my speech was getting very muddled - so much so that I  thought I  might be having a stroke. I remember the last straw was an inability to say  "Mushhhhhhhhhhhy peas!"  I could hear what I wanted to say but was unable to form the word. I was also suffering numbness in my right arm and hand. They popped me in a scanner, and sadly the results were worse than we feared - 2 brain tumours, in the left side of my brain. The swelling round them was pressing on the relevant bits of my circuitry - especially on the 'speech and language centre' in the brain right side. Steroids reduced the swelling and within days my speech was back to normal. A year on, however, and it is now much worse than it ever was, both in terms of written and spoken speech. It varies hugely of course. At good times I'm not too bad at all.  But occasionally I cannot get  thoughts and sounds to coordinate at all. Especially if I've just woken up.

Yet again,it was a wonderful nurse from the Day Hospice who had the time to say 'I don't know if you mind thinking about this, in which case just ignore it, but it would  be useful for me to find out what helps and what doesn't if someone's having to work hard at communicating. Is is helpful, say, if we try and finished off your sentence?

Good to be made to think  about that. I seemed to conclude that really I didn't mind either way if my listener tried to help me finish (sounding a bit like a 2 Ronnies sketch!) or let me struggle to find things if I could. What I did mind, though, was pretending that they'd had heard and understood when they hadn't, or clearly pretending  not to hear, maybe because they were embarrassed to have to ask. And that one has been back to rebuke me, because I've done it to a friend. I'm afraid I couldn't face returning her phone calls, so I just didn't do it. One reason I won't attempt to speak on the phone now.

What frustrates me most about the state of my speech? I'd never have realised this, but it was obvious when it came to me. I can't tell a joke any more! To tell a joke you need speed and timing, neither of which I have now. Learning that I can just shut up, and not be the  centre humming along in every conversation, is hard. When a few of us are talking, too, learning that I can just sit back and listen rather than have to get my thoughts in is new. And I often have to make a conscious decision that my pearls of wisdom are not really necessary on everything.


I find myself thinking a great deal about Stephen Hawking these days. Apparently, his ability to use his voice is down to one muscle in his cheek which still responds to him. One muscle! So what happens when that one muscle finally goes? I can't see  him lasting the week to be honest. Because it seems to me that what has kept him going for so many year is his ability to communicate. That goes, what has he left? No reason at all to stay alive.

Compared to Stephen my ability to communicate seems so easy and fluid. My ability to type is still here, although it takes me a long time now. What happens is I get everything down pretty quickly, but when I look at what's on the page it's gobbledy gook. I can still decipher it but only just. So I go  back painstakingly through each paragraph and correct. Pride makes me cross when mistakes get through! On my newly gifted iMac though, its so much easier to see and to read, it gives me joy every single day. So long as I have a  way to communicate, that what gets me up and determined. And technology has made that possible. So - thank you Blogger; thank you Facebook; thank you beautiful new iMac. With a bit of well planned effort I can still speak, Or put another way, I speak, and therefore I am.