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.


Sunday, 4 January 2015

Sleeplessness

Having trouble sleeping tonight. Wednesday seems so far away, yet time is passing quickly. Had a good long talk with a friend in Sydney yesterday, and with a school mum. Feeling blessed to have such supportive family and friends. All will be well, whatever happens. 
If this cancer gets me in the end, I don't want to be described primarily as someone who battled cancer. There's been much more to my story than that. 
I'm going to start writing more for my boys, so that they'll have something to cherish if I get defeated by probabilitiesdown the tracks,  and so we'll have something to share when I don't. 

It might be a little confronting to ask this, but it would be great if friends and family could share their favourite memory/memories of me so I can collate them into a resource for myself in the days ahead, and for the boys to read when I'm old and grey and this is just a distant memory. Please write them to me, not about me. I'm planning to be here for the long haul and don't particularly fancy reading things that sound like an obituary.  (Crap, that sounds awful). If we don't know each other personally, even some words on how my blog has affected you, and a little about yourself, would be lovely.
I hope you're all slumbering peacefully in your beds, unless you're on the other side of the world, where I hope you're having a great day.
Love, blessings, and appreciation to all of you.
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