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.


Friday, 20 September 2013

Day two, craniotomy 2


1am
I'm mobilizing ok, legs felt strong, but wobbly last night - a little like the Wrong trousers in the Wallace and Grommit animation. I never thought I'd get a chance to experience neurological dysfunction first hand, the things some people do for science!
My nurse walked beside me, worried that I might fall, but apart from seeming slightly pneumatic, my gait was fine. I put myself to bed to assuage her anxiety about fall-related paperwork 

530
Wide awake

730
Ravenously hungry. When will breakfast come?

8am
Feeling tired, Need to sleep.

9am

Having a quadrantanopia is rather disconcerting, I keep getting vertigo, which is forcing me to stay in bed, like I should be! 
I needed some ondansetron  and maxalon for motion sickness. Then I lay in bed and rested with my eyes closed, pretending I was in a sublimely comfortable first class seat on the way to a tropical paradise.

A dear friend came and visited, with the most beautiful-smelling flowers from her garden. It was a joy to hear her recent stories, and to be treated to a hand and foot massage (mmmm)

1230
Lunch
Still feeling ravenous. Devoured everything off the hummus wrap. Had a shower.Tried to sleep, lay in bed, room spinning, heart pounding. Stemetil and Valium helped, until Ben and then boys came after 3.

4 
Nice long visit from my cousin Stephanie, great to hear about her recent trip away. Even better to be hearing about other people's stories again. Far more entertaining than mine!

730-830
Visit from cousin Chris. I could see both her eyes when I looked at her!
All day, I'd been unable to see people's left eyes. Now I can even see mine in the mirror! So the field change is resolving quickly! I'm not sure that i can see my right hand as I type this, but it's Betterr than it was.

11pm
Time to sleep 

355am
Faces look good, lower right quadrant looks like someone has partially peeled off d grey sticky screen saver. very strange, 
I'm ravenous again!

While the diagnosis and pathology are a shock, I'm feeling remarkably well, and lucky that I had superficial, operable tumours. Ben and I are now researching all that we can about GBMs, and possible treatments that may help in addition to the standradical combined chemo and radiotherapy. I plan to be a long-survivor of this condition, which doesn't have rapidly fatal consequences for every single sufferer.




Tall ships in Hobart
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