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.


Monday, 9 September 2013

A bigger neuroboob than expected (

8/9/13
Can't sleep. 
Went to sleep about 10, woke at 1230,  dosed again around 230, but now I'm wide awake and need to write. I'm not using my fourth and fifth fingers on the left when typing, which is making it faster and more accurate, in case you were wondering. 

I called this blog 'neuroboob' because I was a neuropsych with breast cancer, lost a boob, and felt like one too. As I wryly commented on Facebook, it's lucky I didn't add any other body parts to the title, or I might get cancer there too. (ha ha. Graveyard shift humour)

At least I have an unique angle for publishing this blog as a book, if I want to. There are heaps of books about breast cancer, and although I'm touched at how kindly and warmly many of you have received this blog, I don't know that it is worthy of publication as a book. But now that I have a new diagnosis, and one intimately acquainted with the profession I have loved for the last 23 years, maybe now I have something worth publishing, a chance to create a legacy for my field, something that will help patients and clinicians and laypeople alike.

While I still wait for the frigging diagnosis, and hope that it's a low grade oligodrendroglioma, I'm not going to make any big plans for publication. The focus has to be on getting as well as possible, and enjoying life as much as posssible with my family and friends. But maybe there will be time for writing, It has been therapeutic. And maybe writing will help me feel like I've accomplished something with my life, apart from reading Harry Potter and HP fanfic too many times, getting obsessed with Doctor Who, computer games, Phyrne Fishe, the Internet, endless renovation plans...

Talking about Harry Potter, I found myself calling my parietal tumour by the name aunt Petunia just before. The occipital tumour can be Vernon Dursley. Though the names could be switched to reflect the relative size. I hope they both disappear from my life, just like they did from the books.

So, if I'm going to write a book, what do I call it?
-the day my brain fell apart. ?
- facing crap with humour. ?
- reflections of a neuropsychologist on clinical judgement and the unwanted interface of career and health?
- facing brain disease with compassion and humour?

maybe this will give me the chance to write up all of the interesting cases I've seen over the years...

But first, get treatment, stay well, plan for the future. Live in the moment. Get someone to help put all our digital photos together into a record the boys can access. Print the bloody things out so that we can sit and look at them, and rejoice in all the wonderful memories.

I'll write when I can, when I feel the need to. Who knows what will come of it.

I hope the fact that I've loved others and tried to share my knowledge and passion and ideas generously will count for something. I wanted to do something wonderful with my life. I'm not ready to stop yet.



Posted by at