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.


Saturday, 14 September 2013

Happy Sunday text- for those of you not in my phone

Good morning! 
I'm feeling fantastic today, and so happy, I want to call everyone and talk with them. But I need to pace myself, I'm a little dehydrated, and feeling a bit woosey. I guess brain surgery will have some effects!
So I'm sending this SMS to every special person in my address book to let you know that I'm feeling great. Good pain control, resolving sensory symptoms, and an encompassing sense of euphoria. I've just dodged being struck down by a freight train, and am so overjoyed to be alive, and to have the love and support of so many dear people. I'll have to surgery in Wednesday to remove a much smaller tumour, which may not leave me with any ill effects. Then they will work out the optimal radiotherapy procedure, which may be able to be done in launceston. There will be six weeks of combined RT and chemo, then doses of the chemo every three weeks. And MRI scans every couple of months to check for recurrence. 

So even though my tumour grade was terrible, I have a great chance for survival and enjoying many, many years life with family and friends.
So thanks, each and every one of you, for your love and support, and for being part of my life so far. With you all behind me, I'm going to make it through. I feel like I've just caught a great wave and am body-surfing through to the shore right now.
Wishing you all light, joy, and love, from the infinite realms of my heart
Fiona
Xxxx
(Yeah, okay, I probably sound a bit manic, but indulge me, ok?)






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