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, 23 May 2015

Waiting to fly home 630pm Saturday

6pm Sitting in the waiting lounge for our flight home to launceston in an hour. I napped most of the afternoon, and felt a bit confused about  recent events most of today. We flew over on wednesday evening, and i had my treatment mask checked on Thursday, and I had a blast of stereotactic radiotherapy to  my left anterior temporal pole yesterday. Ben thinks that's why I'm feeling confused. 

I'm worried that the area they zapped, identified on MRI nearly 2 weeks ago, which is thought to be an extension of something that had looked like a menongioma in the left temporal lobe prior to my last surgery in March, I'm worried that area is a tumour that has grown and may need surgery, even though it was zapped with gamma radiation in this last round of treatment. I was happy that this radiosurgery was available, because removing the front part of my left temporal lobe could result in language and memory changes. But leaving a tumour untreated could result in other things.
I'll be asking for another MRI when i can at home next week. I'm feeling quite shaky emotionally, feeling that something isn't right, but determined to stay calm and not give in to fear. 
I've had such a wonderful life, blessed with many beautiful, inspiring, and loving experiences. I'm sure it's going to continue and that I'll be able to continue to give much to my family, friends, and community. 

Time for one of those clonazepam hiding in my handbag. They're intended for seizure prevention, (I'm not sensing an aura right now), but they can also help with anxiety management. 

Tonight, I'm feeling very afraid, possibly more afraid than I've ever felt, and I don't know why. I just want to get away from the noisy tv in the airport waiting lounge, and to be surrounded by peace at home. And have another mri this week. I have a feeling that something's not right. 

I must get off my iphone where I'm composing this thing. We'll be boarding soon, and I need to take that clonazepam. Love, thanks, and blessings to all of you.
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