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, 26 May 2015

wednesday 17th May, 218pm


I've just arrived home after spending the morning out. It's been a strange morning - I didn't sleep well last night thanks to the nasal sprays that were meant to deal with the sinusitis that had been bothering me the past few nights, but they only worsened the postnasal drip for most of the night and I wish I'd only taken Sudafed or another decongestant instead. I went through nearly a dozen tissues overnight, and Ben told me to stop blowing my nose so much in case it started bleeding. Not a good thing when Avastin has antiangiogenic properties.

Anyway, today has been weird, not just because it is cold and grey as winter approaches, but because my mobile phone lost power after Ben dropped Nathaniel and me at the little guy's school. It was strange to be walking around without a mobile phone - I didn't realise how much we've got used to having them with us. It was good to remember that I got my first mobile in 2000, just before I sang Mahler's 8th symphony with the Melbourne Chorale at the opening of the Sydney Olympic Arts Festival, and how before that, I had travelled up the east coast of Malaysia by myself over a 3 week period, and had lived for 6 months in Boston while doing my postdoctoral research fellowship (Hi Barbara! I still treasure memories of working with you in Marlene's lab at the Boston VA on Jamaica Plain, and of the kindness you and Jonathan showed me in letting me live in your spare room until I found that rental in Marion St down near Coolidge Corner). No mobile phones for me in those days - I would call friends and family from public phones or where ever I was staying, and I managed to see quite a bit of the world. Not having it working today was quite disconcerting. Largely, I think, because I worried that Ben might be worried about where I was.

After Ben dropped me off with Nathaniel at school, I walked to a local cafe where I had muesli and a weak flat white for breakfast, and I hoped I'd see one of the other school mums there, like I often do, thinking they might be able to give me a lift home. That wasn't to be, so I walked up the (steep) hill and down to the CBD, where I treated myself to a traditional chinese massage at a place called Tai Chi in St John St (2 hours covered neck, back, shoulders, arms, and reflexology massage of the feet). I figure it couldn't do me any harm, and may even be beneficial to my health. I walked up to the hospital where Ben was doing job interviews all day, and managed to snatch a light lunch with him and a couple of his colleagues, and to see a few of my own colleagues, though not for long enough.  

It was good to get a decent walk in, even though it was cold out today, and I'm glad I had the massage. I still feel like I need a good sleep, so I'll try to fit one in in the hour or so before the kids are due back from school. 

The house is a bit of a mess. The boys aren't yet on top of putting their own clothes away (I don't believe they've really tried to do it for themselves yet), and I'm sick of the piles of clothes on their bedroom floor and the dressing table in their room. I'll have another go at it once they get home, possibly, though I need to work out what I'm making for dinner, and I'd like to help them with their homework, as they seem to enjoy it when I do that. 

Sorry about the boring post. I'm still feeling tired from last night, but I'll wind up now and snatch that nap I mentioned. It could be scrambled eggs for dinner again tonight.