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, 25 April 2015

Facebook update and comments from 11/2/15

A status update and deidentified facebook comments from February 11th this year, showing how Facebook can be a wonderful way of sharing information and getting support from friends and family.

Leaving Melbourne, 8846 steps and 6.4km of walking in one day (thanks to Fitbit Xmas present from myself). Feeling uncomfortable after seeing neurooncologist. He was candid without being condescending, but isn't sure if I should have radiotherapy again, and he recommends Avastin as the next line of treatment. He was highly skeptical of the value of the CT that showed residual enhancement in the right temporal lobe. Said I should be able to have Avastin in Launceston, but it's administered IV every couple of weeks, which will limit our ability to take the long holiday I'd been planning to have this year. We'll have to settle for multiple short holidays instead, I hope the school terms line up for us. I want to take the kids around Australia this year. Would have preferred Singapore, Malaysia, Thailand (NOT PHUKET), Burma, Ladakh, and Europe, but we'll have to wait for that. I should be back in Melbourne for a meeting in a couple of weeks.


Some deidentified comments:

 A cousin
Ok. Well we knew radiation mau be off the cards; and being ay home will keep the boys as settled as possible. What are the pros and cons of Avastin? I'm glad he was candid. Candor may be just the thing sweetie. Hard but honest and not throwing in the towel.....just the thing. Love you to infinity darling heart. Always xoxoxoxox
Ps. Awesome effort on the walking! You legend you xox

An old school friend and now oncology nurse
Avastin is given in outies.
Take care hon; damn great approach to disease and its treatment. Thinking of you; walking beside you. X

An old workmate
Was great to see you and give you a hug! Thanks for the insight and thinking of us to share it. Take care! 

School friend #2:
Some short holidays could be great fun too! I'm sure you will find plenty of local places to enjoy Fi. And we can come to you as well - We are coming to Devonport later in the year and hope to catch up with you

Another psychologist
Take care Fi, and stuff the school terms. Make them fit around you!

 My cousin again
What he said! Stuff it. Go and make memories

School friend #3
Agree life is remembered by experiences not dates of the school term.

Medical friend
Avastin is easy to take. Minimal side effects. Works very well sometimes.

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