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.


Friday, 6 September 2013

update #2


Surgery went well. Gave me a sore head, but OxyContin and digesic have fixed that. 
This morning, I had lots of leads and tubes attached. For those of you who couldn't open the Facebook link, I wrote "it's a Beautiful morning and life is good. Thank for ll your love and support, I heroism you all...
" I need to doze again.im going to call myself Noddy this weekend"

My fingers and farrah starting to puff up from the dexamethasone, and I get  very tired as when sitting up and talking. They put me onto sodium valproate (epilum) to prevent seizures, and they've taken my catheter out. 

I was keen to get out of bed and go for  a walk thiafternoon, but got dizzy and felt weak when the physio and nurse got me to do a sit to stand at the bedside. Anyone would think I'd has a craniotomy ;)


My left hand is making a lot of typing mistakes, and is  a little clumsy still (eg I thought I was pulling spoon out of s clear plastic bag this morning. I looked down and saw the spoon, looked up, and my hand came away empty. Power is a little weak , and sensAtion is changed in my left theumb, index, and middl finger.

The lesion was removed las night. It wasn't an abscess,  and wasn't a breast met, which is excellent. We won't know ex actly what it was until earlynext week. I never thought I'd be happy to have a gloomy, but I've known of people' with good survivals after gliomas.

Justtwhen we thought my treatment was over, there's a whole new kettle of fish to deal with! 
I'm hoping the symptom I'm experiencing will be transitory.when Ben and the boys came this evening, I recognised them more by their  clothes than by their faces. 

To give an example of whow my touch- typing has been affected, I will retype the previous paragraph,without correcting it. And then I'm going to sleep.

Just when we thought my trrrment was per, there's a whole new kettle of fish to deal with,I'm hoping the symptoms I'm experiencing will be transitory. When Ben Nd the. Our ane this e end, I recognised them more. By their clothes than by their faces.

Auto correct isnt entirely helpful, but I'm also missing some errors when I think Ive looked carefully. Fatigue isn't helping much.













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