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.


Wednesday, 22 January 2014

Up in the ward

Feeling much better today after 2 nights in DEM on IV fluids and antibiotics. I'm very fond of the plaster room now. The door can be closed, permitting a little more sleep, but I've also developed strategies that help- covering my head to keep the light out, not opening my eyes until I'm spoken to, and snatching sleep whenever I can.
I had some rather amusing dreams as a result- tiny animals having Christmas dinner in Eakins Hall at Queens College, where I spent my first 3 years at Uni. More cute animals on surfboards... Nothing deep and meaningful, just sweet fancies from my subconscious, perhaps a reward for giving my body the sleep it needed. 

Tonight I'm in a 4-bed ward on 5D (oncology). The neighbours seem quiet so far, the poor man next door is about to have a cannula put in his hand- the sounds of the tourniquet clip, the nurse tapping his hand, now repositioning him because she couldn't find a vein- I didn't realise how anxious I've become about the needle thing. He's not complaining though, and I've put the tv speaker by my ear. 
Mum just called, wanted to chat about gas hot water- I'm totally pooped now. Frustrating how I can transition from feeling alert to exhausted in a matter of moments. But every day is getting better. Rest now, more later
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