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, 13 August 2014

Ophthalmology exam

Some of you might be interested in the results of my recent ophthalmology exam. 
They said my eyes were healthy, which is reassuring, but the reason I had it was to see how bad my visual field defect was, and if it would prevent me from driving. 

The results were as I expected - testing of each eye alone showed a pretty complete loss of vision for the lower right visual field (also known as a lower right quadrantanopia). This test was pretty demoralising. I had to put my chin on a chin-rest and fix my gaze on a central light in a white array, where white lights of varying brightness and size would flash. My job was to press a button whenever I saw a light. There was a small sound before every light that I saw, and also before lots of lights that I didn't see. I resisted the temptation to press the button anyway, because I knew these machines keep track of false positive responses. After testing the individual eyes, they got me to do it again with both eyes, which was more encouraging. The results showed that I could see reasonably well in the periphery of the lower right quadrant with binocular vision, and that there was only a small area of loss in the centre. The ophthalmologist said that this should continue to improve over a number of years, and that the current results would not prevent me from driving, though I will need to do an OT driving exam first. He recommended repeating the assessment in 4 to 6 months, and doing the driving exam after that. The OT driving assessment involves a brief cognitive screen, driving simulation tests, and if I pass, an on-road assessment with a driving instructor in a dual-control vehicle.

I've become used to the field loss - I don't get the scintillating scotoma as much as I used to, and the field loss is like an itch in my eye, particularly my right one, as if something is missing. This doesn't make sense to me while I write it, but I suppose that not being able to see things reliably in that area manifests as a sense of something being missing, unless I move my eyes from side to side, or move my head. It doesn't affect me dramatically in daily life. I have a tendency to bump into things in that area, or knock over small things on benches, but this happens rarely, and I don't like the kids standing behind me and to the right when I'm sitting down. It doesn't bother me when they stand to my left, but standing on the right gives me the sense that someone is creeping up behind me.

I used to find it more comfortable to read things on the small screen of my iPhone, as I could keep the text in the left visual field, but I've become more comfortable with larger screens over recent months. I used to also feel more comfortable watching TV or movies with my head tilted to the right, so that everything was in the left visual field, but I don't need to do that anymore.

All in all, I feel very blessed to be alive and free of tumour recurrence 11 months after they were discovered. I hope to continue doing well for many years to come.
Both eyes: Test of peripheral vision - all ok for driving. The blackest dots show a <20% loss of vision in that area


Left eye: dark area in lower left quadrant represents normal blind spot


Right eye: Showing lower right quadrantanopia, which includes the area where my blind spot would normally be for that eye
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