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, 9 January 2015

Funny dreams and not so funny pathology

254am Saturday
New body art and hairstyle, taken while fantasising that they'd removed a small cauliflower from my brain. Sadly, that wasn't to be the case, the pathology report was the same as before. 
I've been repeatedly woken by dreams in which I'm trying to cheer myself and other people up about the new GBM, and in which my surgeon keeps running away when I ask about the possible left temporal neningioma, the one that he thought was nothing to worry about. 
I'm going to pester him about it tomorrow. I'm sure his job is difficult, and that brain conditions like mine are very depressing, but I don't want to hold onto something that could be benign without him taking a little biopsy to be sure. 
It's kind of nice that he said he thinks I'm brave, not that I feel brave, I'm just doing the best I can and trying not to get overwhelmed by fear or probabilities. Staying strong and determined to fight this thing is the best I can do in the circumstances. 
Despite the admirable persistence of my dreaming mind in keeping positive and pursuing answers to my questions, I need more sleep so I can do it when I see him tomorrow. Trying to sleep again now, with instructions to self to relax and trust that all is well. It's tiring to have to create a standup comedy routine in my dreams every night. But it also makes me laugh when I wake up and realise what I've been doing. Some of my dream comedy is totally surreal and bizarre, and I never knew my dream self was so agile and graceful, or that I coiid dance better than Michael Jackson! Very amusing to remember. Thanks mind of mine, you're doing a greet job. Hugs and love to everyone I've ever met, even the ones who were jerks at school and Uni, you made me stronger than you'll ever know


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