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.


Tuesday, 17 September 2013

Schnittke's choral concerto and cellular excitement

I've just skulled my Gliolan. 50 ml of salty, slightly metallic-tasting liquid, brought by a nurse with trembling hands ("what if I drop it? It's so expensive!!"). No unpleasant aftertaste. The liquid will be absorbed into the tumour cells, and Andrew will be able to do an excellent resection of the tumour.

While the tumour cells get unmasked, I've been stimulating my cortex in an entirely different way, by listening to the most complex choral work I've ever sung.  It's Alfred Schnittke's Choral Concerto, and I sang it with the Melbourne Chorale, under the inspired and delightful direction of Jonathan Grieves-Smith, at St Patrick's Cathedral in Melbourne in 2001, when David was growing in my womb.  I particularly love the third and fourth movements, which are available on YouTube. 

It won't be to everyone's taste, but for those of you who love choral music and enjoy the soulful, mysterious, polyphonies of orthodox music, it's a real treat.  I think I might have to download the score off the net and sing it at home when I return.

This morning, I've been lying in bed, feeling physically drained, but washed over and cleansed by this amazing music.  Not long now, and I'll be seeing Ben and the boys for the biggest cuddles I can muster, then taking my Valium and maxalon, then going to sleep, then waking up with a tumour-free head, ready to delight again in the joy of being alive and loved by so many dear, sweet people, including an old school mate who is going to drive Mum down from Launceston for a visit tomorrow. 

I'll be thinking of you all when I wake up.



 




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