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.


Tuesday, 4 June 2013

Cycle 5, day 7

4:44am 
The problem with being in hospital is watching rubbish tv from a limited selection (abc1, seven, nine, and sbs), and then dreaming about it. I'm not sure what dream woke me, but I think it involved murder on a house renovation site where teams of people were manufacturing intrigue and alliances while refugees went homeless and were attacked by right-wing extremists. At least I never had Bob the Builder dreams when the kids were little! 

It looks like I could be in here for a number of days, so I'm taking it one day at a time, and trying to imagine that my room is in a luxury health retreat, with individualized attention and masseuses who are so good that they're booked out months in advance. Not that it matters, because I get to practice meditation several times each day, relax in the steam room, eat gourmet food, and take scenic walks along the corridor, with views over sun-drenched hills and a beautiful river valley.

If there was a massage school in Launceston, the students should come here to do hand and foot massages on the patients. It might help boost their recovery.

It is interesting to go through chemo and to discover how debilitating it can be. My current hypothesis is that chemo causes fatigue, which reduces working memory (WM) capacity (at my worst, if I'm making a cup of tea for someone, I need to concentrate on that task before I can do anything else, even answering a question). It's like I've gone back to a very old computer which crashes if more than one app is open at a time. It has everything on file, it's just very laggy, and would often prefer to be on standby than doing advanced calculations. Being fatigued and having insight into reduced WM, and a conflict between wanting to rest and wanting to be normal makes me irritable, which irritates my nearest and dearest, which makes me feel bad... Luckily I usually manage to switch into calm mode, though I also feel irritated that my needs aren't being understood, that I need to explain that I'm irritable, and irritated that they're irritated with my irritation!

Deep breathing is a wonderful thing.

I recently met someone who was in hospital for five months, having treatment for leukemia. So I really can't grumble about being here a week or two. And at least I'm giving the microbiologists something to wonder about - they've grown a gram-positive bacillus from my blood. Apparently gram-positive bacilli are rare, gram-positive cocci are more frequent. It could be from surface contamination, but they're giving me good old vancomycin to cover it. I just love four-hour infusions - I'm going to get good at walking the corridor with my infusion machine, and do my bit at challenging stereotypes of people on drips.

I'm going to start writing a list of things I want to do in the months and years after treatment finishes, so that I have something to look at when I'm feeling poorly, and something to add to over time. The one thing I'd really like to do is take the kids to Singapore, travel through Malaysia by train, visit the southern beaches of Thailand (Krabi provence especially), then go to Burma, before it gets ruined by tourism. Maybe towards the end of the year.

I'd better try to get back to sleep. I hope I don't dream of Angelina Jolie again, it's hard to keep up with her.
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