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, 27 August 2013

Side effects continue

Merde! Ben has noticed that food tends collect on my left lower lip. I'm not aware of it until he points it out. Its been happening for the last week.Also, he noticed this morning that my  mouth is a little  asymmetrical when I speak or smile (less movement on the left). He said to call my rad onc. , who said he'll see me this morning.

Great way to worry a neuropsych! I tried to capture it with a selfie, it's not pretty. Even my grimace is lopsided. 

I'm not great on the cranial nerves, but if my face is affected, maybe my tongue is weaker on one side too, contributing to problems swallowing the excess saliva, and the feeling that my voice is slurring.

I'll hold off on publishing this, as it scares me, and I don't want to worry anyone unnecessarily.

Back from seeing my rad onc, who says he "spent a significant amount of time as a neurology registrar." He says it's probably a post-chemo peripheral neuropathy involving the facial and trigeminal nerves, causing a subtle asymmetry of the mouth and reduced sensation on the side of the mouth (hence my unawareness of food there). He wants to see me each week, or if something changes, but is confident that I don't need any additions tests or to see a neurologist at this stage.

I'm feeling shaken. Slightly relieved, but still worried. I thought of peripheral neuropathy as being  something thAt affects hands, fingers, feet, and toes. Not the face. Google reassures me that it can happen http://chemocare.com/chemotherapy/side-effects/numbness-tingling.aspx#.Uh1JUmQayc0

I'm so grateful for the Internet! We're getting the NBN connected today, so I'm looking forward to even faster downloads to satisfy my insatiable hunger for knowledge.

I'm going to take a video of my face doing the contortions I had to so for the neurological exam this morning, so I'll have something for comparison over time. Ben says I should go to Melbourne  to see one of my neurology colleagues and get an MRI if it will reduce my anxiety, but I think it would increase it, and would also make the boys worry. It would be incredibly bad luck to have cerebral metasteses so soon after finishing chemo, especially when I was clear of mets when I was diagnosed. 
I guess this is the anxiety about recurrence hay people go through after treatment for cancer. I'll work on being alert, but not alarmed. And get started on B- group vitamins and folate.
I'm so glad spring is coming.
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