Background and overview

I learnt more about the health system from being an inpatient than I had in 20 years of working as a neuropsychologist. I was unexpectedly diagnosed with two brain tumours on 4/9/13. They turned out to be grade IV Gliomas (glioblastoma multiforme (GBM)). After removal of the right parietal and left occipital tumours, I received the standard treatment under the Stupp protocol (combined Temozolamide (TMZ) and conformal radiotherapy 5 days/week for 6 weeks), but the TMZ had to be ceased after 5 weeks because I had started to develop pancytopenia, where more than one of my blood counts had begun to drop. By Christmas 2013, I had become anaemic and needed a couple of blood transfusions. I ended up in hospital for 3 weeks of the 2014 new year after experiencing my first seizure (suggestive of a right temporal lobe focus) on 31/12/13). They were so worried about my bone marrow, they did a biopsy. Luckily, it was all clear of any nasty disorders. It had just been suppressed by the TMZ My blood counts slowly returned to normal with daily injections of GCSF, which stimulate bone marrow function, for several months. For 17 months I was doing better each day, without any physical impairments or major cognitive problems A third brain tumour was found in the right temporal lobe on 2/1/15, and removed 6/1/15, only to reappear on 17/2/15 after I started to feel vague symptoms at the end of 2014. I had my 4th round of brain surgery on 1/3/15, followed by stereotaxic radio surgery of a residual, inoperable, tumour, on 17/4/15. I've been feeling like my old self again since that highly precise form of radiotherapy, and it feels fabulous.

My way of coping.
I choose to live in hope that everything will work out for the best. I've learnt that even though things are sometimes unpleasant, life and love go on forever. I put my faith in the life force that created and unites us all in love, across all time, space, and dimensions. I refuse to succumb to fear, which is an invention of our imaginations. There are an infinite number of things to fear, both in this world an in our imaginations, and most of them never eventuate. I choose not to dwell on them, and to focus instead on counting my many blessings, current and past, and to have faith and hope that if I look after the present moment, the future will look after itself.

If you're reading, and haven't been in touch, please don't be shy, send me a brief private message using the contact form on the right. It's nice to know who's out there. Blogging can leave me feeling a little isolated at times (I used to have recurrent dreams of being out on a limb over a canyon, or of starting to strip off in a crowded waiting room). Your emails are appreciated, although I can't necessarily answer all of them.


Thursday, 19 September 2013

Visual field changes and wobbly legs

Nice clear info on visual changes here.

https://www.guidedogsvictoria.com.au/our-services/acquired-brain-injury/

Mine seem to be fluctuating, which is good. I'm learning to move text into the left side of space
 (funny how that takes a little adjusting.
,
It seems natural to line things up in the midljne, but then I have trouble reading things in the lower right quadrant

 The loss isn't complete, so I can still see things in the bottom of the right quadrant. 
I hope that means I won't be stubbing my feet more than usual.

Typing with my left right hand was strange yesterday, because I can't see the keys or my fingers typing.  
But I
Can see from the words coming on the screen that my right hand is still accurate at touch-typing.

I went for a stroll along the ward at midnight. My legs felt strong, but strangely uncoordinated. 
My nurse was Worried that I might fall, but I was careful, walked slowly, and got back into bed safely.
 It was good to get the
Catheter out, and to toilet normally. They took out the central line in my jugular vein, only to discover an hour 
Later  that my peripheral line, connects to the PCA  pump, had tissuesd. 
My forearm had swollen like Popeye's, so no PCA overnight. Endone has worked though..

Andrew said the Gliolan  allowed him to remove 1/3 more of fluorescent tissue that he would have done without it, so that's money we'll-spent.

Pity we didn't use it for the first op, but if that one grows back, then w'l use it for the next resectioin. 

I hope  there will be no more resections or recurrences,

I want every one of you to have great hope for me. 

We are going to beat it.
PS sorry about the margins in this post, I don't know what has happened to blogger, it seems to know that my fields are wonky!
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