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.


Sunday, 10 November 2013

Something poignant found while cleaning up my Facebook profile

a good day with mum and dad.

29 January 2011 at 23:20
I had a lovely few hours at home today, uploading songs for mum while dad sat in his wheelchair, while I played some of his favourites for him ('night and day', 'unforgettable', and 'jeepers creepers' being a few of them. I love them too). He seemed a lot calmer than usual, and seemed to just enjoy sitting silently, watching me work at the computer. The thing that melted my heart, though, was him telling me I had beautiful hair - the first compliment I can remember him giving in a very long time. Compliments didn't come easily to him, though I always knew he loved me, that was one thing he told me regularly.

Make sure you compliment your children regularly, and tell them how proud you are of every good thing that they do, and express your delight in the simple joy of their existence. Probably wouldn't hurt to try to be similarly appreciative to your significant others as well....

Found this nice photo of mum and dad from 2006, 2 years after he was diagnosed with normal pressure hydrocephalus. I'm so glad we had him treated, it gave us 6 extra years of having him at home. And although it's hard to see him declining, I'm so glad he's still around to love and cherish.

HDB and NLB on their 40th wedding anniversary, 2006
HDB and NLB on their 40th wedding anniversary, 2006
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