Sunday, 5 March 2017

Bowled over ...........again!

How strange life is .... 6 years ago I fell over coming home FROM  a bowling awards night and bashed myself up good and proper, I also broke my left wrist rather badly. Now, well ten days ago (24 February), I have done it again by falling down our outside staircase on my way TO bowls at 8.30 in the morning.

This I time fractured my right wrist, which had to be pinned, and sustained a couple of facial fractures. As well as cuts and bruises of course. Spent 3 nights in hospital and am now coming right quietly at home. Under various specialists and have found them all very thorough and caring so far. 

The worst of it all is not being able to bowl, and missing out on various championships and events that I was involved in. But hey! It could have been far, far worse.


descending her eyesight deceived her
she tumbled downstairs and it peeved her
having got such a clout
that she knocked herself out
a medical service retrieved her

the ambulance men did some things here -

their injury gear almost sings here
but she cried - 'don't go quick
cos i'm feeling quite sick,
you sure that this motor has springs here? '

the Casualty staff got her sorted
from the dire disaster she'd courted
after all sorts of bods
did enumerable prods
all lesions were clearly reported

then came stitches and plaster and more
and admission to Surgical floor
she praised all staff involved
for the problems they'd solved
and advice she'd no longer ignore


Monday, 19 December 2016

And the good news.....?

I had my annual review yesterday and saw the neurologist who I met for the first time last year. It is just over 7 years since diagnosis of these two skull base M's, one of which was zapped with fractionated stereotactic radiation.
My main symptoms have remained the same since treatment and for the past few months I have been feeling pretty rough. Yesterday the N said that that I am showing the beginnings of Parkinson's Disease ... some muscle rigidity in right arm and leg, and balance difficulties, which probably explains the several falls I have had in the past year or so. There is also the double vision but we didn't get to discuss the possible cause of that.

I asked if it could be caused by the M's and/or the radiation treatment and he said NO.

I asked him about my memory issues - difficulties with words, lost memory of past events, etc,, and he told me that he is involved with an ongoing study covering the effects to memory of Parkinson's disease. He asked if I would be interested in taking part and I said that I would.
My annual MRI is due in the New Year. It is a pity that this appointment with the neurologist hadn't been scheduled for AFTER the MRI.  We would at least have known if there had been any changes since January last year.

Feeling a bit down over all this but they say whatever doesn't kill you makes you stronger. 
I just hope that's true!

Sunday, 23 October 2016

The Way Things Are - another poem

The way things are

There comes a time
This much I know
When a mind feels like resting
And I ain't suggesting
That this is wrong
- just my way of protesting
The way things are

Things don't last long
This much I know
And my mind keeps on saying
Stop your crying and praying
Don't make no sound
- just my way of delaying
The way things are

There is a way
This much I know
Be it standing and staring
Be it doing and daring
You'll take my hand
- you'll be smiling and sharing
The way things are

Thursday, 1 September 2016

Spring is just round the corner

Yesterday was officially the first day of spring and I notice that we were only just tipping into winter when I last posted. Shame on me!

We had a great four weeks away on Australia's Sunshine Coast while the weather was at its coldest here at home, mid-June to mid-July ....and it was nice to not need a coat! We played quite a bit of bowls and made some new friends. Hopefully we will go back and visit there again one day soon.

Well there isn't, and hasn't been, much else to post about on the Meningioma side of things. Everything is still the same old, same old. But the jerky movements in my legs are now a thing of the past since I have stopped the regular doses of Carbamazepine (Tegretol). I still take the occasional dose if the dreaded Trigeminal Neuralgia starts twanging away though!

I managed a couple of paintings over the winter months and surprised myself. I need a bomb behind me to get going though! I am really pissed off with feeling tired and not sleeping properly. Its very draining. From what I read on the meningioma and brain tumour forums and websites it is quite common for people to wake up about 3am with headache and nausea!! And the majority report that, like mine, their doctors tell them it is nothing to do with the tumour, or that they have no explanation for it. But we can't all be imagining it! Doctors really don't seem to get it.

It is amazing how similar a lot of our symptoms and issues are whether waiting for treatment, post-surgery or post-radiation.... and there is some comfort to be had in that. And it is wonderful that the Internet enables people to exchange experiences and information, and  offer support to each other.

Worry Beads
Constant tinnitus, headache/nausea, tachycardia in the middle of the night, double vision, poor memory. But pains on the left side of face are fairly well controlled with Amitriptyline taken before bed so that's something. I do worry whether or not one of the little buggers is growing ........

Wednesday, 25 May 2016

Just don't know what to do with myself!

Here in New Zealand we are tipping into winter, and the weather has been markedly colder and wetter this past week. But the countryside and gardens are all the better for it, having been parched dry by a very warm, and long, dry spell. So like all things any run of bad or good conditions comes to an end eventually.

I used to believe that about my symptoms but have yet to be proved correct. After 7 years they still keep rolling along, just like Ole Man River! The double vision occurs dozens of times a day now and takes anything up to 2 minutes to resolve. I can drive ok when it happens but have to close my right eye otherwise I can see two separate roads ahead which is somewhat scarey to say the least!

Seems that I am also duller and more sleepy these days ... my head is just too achy and tired to bother with much of anything. Even reading, which has always been almost an addiction, is slowly losing its appeal ... I just can't be bothered. Likewise this blog. And my art. All too much trouble.

What to do about it? If it wasn't for friends and family ..........

Still at least I am looking OK ... or so everyone keeps telling me, LOL !! But then, they can't see my brain being squeezed, can they?

Thursday, 25 February 2016

Mine's a double!

Visited doctor on Monday ... tested my eye movements and confirmed binocular double vision, most likely caused by the smaller meningioma (Fuss) which is sitting centrally, on or near the Crista Galli, close to the oculomotor branch of the optic nerve.

For now it's wait and see time. These episodes of double vision occur after I have looked to the right or left horizontally and then return my gaze to look straight ahead. If they get worse it may be necessary to consider surgery or radiation (not a comforting thought).