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 August 2014

activity scheduling and the importance of mobility, occupation and social engagement

I've been feeling progressively better over the last couple of weeks. The improving weather helps enormously. Compared to last week, when there were gale-force winds and cold nights, this week has felt like spring time - cool mornings, but lovely sunny days, and the sweet smell of daphne in the air. I did some very therapeutic pruning of the lavender and old hydrangeas on Tuesday, and walked at least half an hour every day from Sunday.

I've made a deliberate attempt to go for a walk each day, after realising that snuggling in bed when it's cold outside and you have no plans for the day could be a quick route to despondency. Appointments with the Outpatient Rehab dietitian and occupational therapist have inspired me to use my paper diary as a record of regular activities, including fluid intake, meals and snacks, exercise, rest, energy levels, mood, social activities (face to face or telephone), and bowel motions (don't want to get constipated ever again). It isn't something I've ever mapped out so explicitly for myself, but it's important at the moment, when my days are so unstructured and socially isolated. I have friends and friends acquaintances in Launceston, but I need to initiate contact with them as they all work and have busy lives. The benefits of having mobility, regular work and contact with people through that work has become increasingly apparent to me since September last year. Being unable to drive since then has removed my ability to have unplanned social interactions at school drop off and pickup, or through visiting the hospital and catching up with old workmates (though Ben doesn't like me going near the hospital because of the risk of infection - an irritating situation that causes friction between us. I know he thinks he's being careful and protective, but it feels controlling and restrictive to me. Besides, my neutrophils are staying around the 1.7 mark, which is high enough to not take the gcsf injections for the last two weeks)

It looks like I won't be able to return to driving until early next year. The OT who I saw yesterday also does the return to driving assessments, and she thinks the regulations have changed to require drivers to be seizure-free for one year before resuming driving. I don't want to spend $350 on the driving assessment (involving driving simulation plus on-road testing in a dual control car) until my vision has recovered further and until I'm likely to pass. I want to do it when I'm most likely to pass. It would be demoralising to sit it and fail. The OT agreed it's best to wait until I'm most likely to pass it. 


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