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.


Thursday, 7 November 2013

The fascinating effects of cranial irradiation on hair growth, and ofsteroids on faces.

Post-chemo hair getting long between first and second craniotomies. Pose inspired by having had my right jugular vein accessed twice, once for each surgery, as if I'd been bitten by a vampire. The anesthetist said it was too early for Halloween (6 & 18 September 2013) 


Hair starting to grow back after meeting the #1 clippers in the first week or two after craniotomies




Dex face developing
Post-RT golf-ball face (caused by dex face under RT mask, 14/10/13)
Sorbolene protects skin and makes interesting curls..


Could almost get used to this hairstyle, if it would stay put.


Starting to thin (25/10/13)

Getting weird



Getting weirder

Smooth as a baby's bottom. Not sure about the sideburn.
Nathaniel's 9th birthday - 7 November.

22 out of 34 RTs down, 12 to go. I'm not wearing this look out in public - too cold,  my hair blows away, and I'm not allowed to let the sun on it. It's also probably a bit too radical for Launceston ;)

I've been feeling extremely tired, and find I need to nap up to 4 times a day. Short naps (30-60 minutes are best). My body feels like a rag doll, very weak and wobbly, and I need to be careful when moving from sitting to standing (nearly rammed my head into a toilet door on the weekend). It feels great to walk on level ground. I tried walking without my fore-arm crutch the other day, but felt like I was wobbling like a drunkard. Using the crutch gives me something to lean on when I'm tired, which is better than leaning against a wall, and also causes people to give me a bit of space when I'm walking, though I get funny looks, possibly because of my age, lack of obvious gait disturbance, or general amusing appearance.
almost looks deliberate.

My radiation oncologist may be a frustrated artist. 
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