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.


Wednesday, 8 May 2013

Doxetaxal (Taxotere), Round 1, day 2

9 May 2013 I had my first dose of Taxotere yesterday, and am feeling surprisingly good today. I did collapse on the couch yesterday when I got home, the fatigue was pretty instant, but at least there wasn't any nausea. I slept well last night, and felt good enough to take the kids to school this morning. I'm still waiting on the pathology results from my stool sample - they should have something back today. If it's clostridium difficile, then that will mean a different course of antibiotics. I've had loose BMs for over a week now, and a loss of appetite as well - partly from fear of going to the loo, partly from a lack of hunger...I'm feeling a bit hungry now, but don't know what I feel like eating...I'll just have to look in the fridge - maybe an apple would work. I've just about finished paying some bills, then I'm taking Ginny for a quick walk, then off to see the surgeon for a FNA of a lump on my right side - it's probably a cyst that has become hard during the chemo, but I have an ultrasound booked for next week, just to be sure. The MRI on the right was normal in January, and it would be ridiculous if a new tumour had started to grow whilst I'm on chemo - the tissue feels less dense on that side, so it's probably just one of the cysts that has been there for a long time. I don't trust my breast tissue any more. Welcome to the hypervigilance described in breast cancer patients. Time to pay more bills and walk the dog. All will be well.
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