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.


Saturday, 2 May 2015

update after seeing and talking to oncologists about recent symptoms

I called my radiation oncologist in Melbourne after my last post about the tingling symptoms, and he said they could be related to the tumour he zapped that was near my brainstem. He reminded me that sensory pathways cross over in the brainstem, a fact repeated by my oncologist here at home. They both said that an MRI so soon after I had the stereotactic radio surgery (on April 17th, so only 2 weeks ago) might show a "very messy" image, or words to that effect, and that I shouldn't be concerned about what the scans show in the region that was treated. I guess I can deal with that, with their advice, my concern was that something might be growing in my left parietal lobe or sensorimotor cortex, because I'd also had a couple of episodes of stumbling over my words. I haven't had any word finding difficulties or other symptoms that would suggest a left temporal lobe lesion, which is a relief. Then I found a copy of the text message I sent my oncologists which mentioned tingling on both sides of my body, which reassures me because it fits in with what they're saying about sensory pathways overlapping near the midbrain. I never learnt much about midbrain functions because I was mostly interested in the brain and behaviours like memory, mood, personality, and different aspects of cognition.
The Melbourne oncologist confirmed that he'd probably be able to treat any new tumour growth with his highly focussed form of radiotherapy, and within a couple of days of it being discovered, he would just need a copy of the MRI images to fuse with the CT images used for my first and last treatment over there.

This has proven to be one of the more difficult times to be a neuropsychologist with a brain tumour. I sense that something isn't right when I feel the tingling, and I don't want it to be a new tumour growing in my left hemisphere. One of the original ones in September 2013 was in my left occipital lobe, a pea-sized tumour at my occipital pole, in fact, and the removal of that small tumour resulted in a lower right quadrantanopia, just like the textbooks said it should. I'm not aware of the quadrantanopia now, and only vaguely remember what it was like to be aware of it when I was recovering from surgery, which is documented in this blog after my second surgery in  September 2013. I need to see the ophthalmologist again because I seem to have an upper quadrantanopia on formal testing by one of the oncologists, which the neurosurgeon said might happen after my right anterior temporal lobectomy. I haven't been aware of any symptoms, apart from getting startled easily if the kids flick their hands or other things near my face.

Oh, I mentioned the instances of poor memory for autobiographical events, and my local oncologist laughed that he's never had a patient complain of "autobiographical memory loss before." It's lovely to have such a good rapport with him, though it makes it difficult to share some of the dark thoughts I've been having. I haven't even shared them here, because I'm doing my best to dispel them and focus on good and positive thoughts instead. 

It's late now, 1:32 am, so I must go. We have visitors in the house tonight, and David's 13th birthday celebrations tomorrow. For regular readers, and anyone else here, I want you to know I've been feeling great, having lots of laughs, and was delighted to find some of my creative writing efforts from school in an old exercise book yesterday. I now have a better idea of why I've had such poor self-esteem since childhood. While my teacher gave me an A or two, her highest praise was "very good" for one effort, and "Good" for another. It's more than 30 years since I wrote in that book, my handwriting was beautiful (not like it became after 6 years of note-taking at university), and I couldn't believe I handwritten those pieces. I can't remember writing them, but I'll share them here for you. 

I'm beginning to wonder if I should have followed my talents in writing and painting, rather than the highly formalized  rigours of training to be a neuropsychologist, not that I regret doing it, I loved it, and felt that neuropsychology was my vocation. I was able to share my passion for understanding the brain and helping those affected by brain disorders, with many others: students, other psychologists, other health professionals, even members of the public. I guess it hasn't been a waste, though I could have painted many more beautiful pictures and written more beautiful stories.

Sleep well, wherever you are.

PS I've had a sense that I may be running out of time lately, so I'm hoping to share many more of the words, memories, and thoughts that have been running through my head. Sometimes I've felt so low that I've thought about calling the palliative care service for their support, or one of the cancer support phone lines. I haven't done either of those things, because I've found images and writings that remind me of some beautiful things the earlier me achieved, and I want to share them with my friends and family, and to keep creating beautiful things for many years to come.

Sweet dreams.
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