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.


Friday, 19 July 2013

What's important?

Five RTs done, 23 to go.

It's been very wet and wintry here the last few days, time is passing slowly, it feels strange - I almost feel like I can reach out and touch time, as if it was moving like rain, slow and steady. 

I'm getting surprisingly little done, despite having all this time. 

I sleep in until 830 or nine, have breakfast, shower, walk Ginny (stopping to pat Rosie and tell her hoe much I love her), and then it's 1130 before I know it. I make lunch and try to serve and eat it before I have to rush off for radiation, then I'm home again, rest for a while, and it's time to prepare dinner. I check the news online to see if decency and good behaviour have returned to Australian politics, but the Guardian and Independent Australia sites show me the futility of my fantasies of  politicians' ability to show compassion for others and the ability to stand up for what is right. 

I find myself feeling stripped bare of my former passions and follies. When I think of how much time and enthusiasm I put into my work and advocating for my profession and the brain-injured people we serve, I don't know if I can muster it again. The welfare of my children seems most important, and I feel  sadness for all the time i missed enjoying  of their early years because I was working, sleep-deprived, or stressed. My family and friends, and all the other wonderful people I've encountered, seem more important than anything else. They're what I would miss if I were to leave this life, and all the time I've wasted worrying about how things appear seems futile and vain. The focus of society on appearance seems frivolous from this strange vantage point, and infomercials touting the benefits of anti-ageing creams seem as useless as moving the deck chairs on the Titanic. I'm more away for the fragility of life than I've ever been, and  watching healthy people wasting time on superficial things feels like watching a slow motion catastrophe, a bit like the monumental surge of the massive Japanese tsunami. Strangely, this feeling reminds me of the sense of wonder I felt after my children were born, when I perceived every single person as having once been a baby, helpless and dependent on others - it gave  me a sense of how similar we all are, despite the divergent paths and personalities we take in our lives.

I once had an experience, on the cusp of sleep, of being a droplet in a huge waterfall, that fell through time and infinite space, and that every living creature was also a droplet in that waterfall. We merged together and separated, created rainbows in the mist, but were all fundamentally interconnected and interdependent. 

I wish politicians would read and embrace Julian Burnside's recent article on asylum seekers in the SMH (read it here), instead of moving towards Rudd's new policy of placing boat arrivals in PNG. I'm so sad that fear and vote-seeking is driving policy in this area. We're all interconnected, and need to be kind to one another, and the planet that supports us. Life is so fragile, and wonderful, because it allows us to love and be loved.

Peace and love to all of you, and to every person you know.
Posted by at