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.


Monday, 30 September 2013

Factual and very technical update without all the wishy-washy emotional and domestic stuff

 I've pulled through the surgery really well, and am feeling great, emotionally at least. There's nothing like realising you narrowly avoided a collision with a freight train to make you appreciate life! 

The two craniotomies have left me with some mild sensory loss on the left (face and hand), a well-resolving defect in the right visual field, that started as a partial quadrantanopia but is more like a scotoma now - a wavery patch where the visual input is pixellated, but can be corrected by scanning. I'm a little uncoordinated with my right hand, and nearly dropped the baking dish that I pulled from the oven tonight, but I didn't burn myself. I think this must be visuoperceptually-based, as I have to really think about using uncommon punctuation marks when typing. I know what they should look like, I see them on the keyboard, but I have to think carefully to make sure that they match what they should be. My touch-typing allows me hypens, commas, full-stops, colons and semi-colons, () are ok, but the others just look a little wrong. A kind of alexia (inabilityt to read) symbols, but it's getting better. I also wonder if my proprioception (sense of where my body is in space) was mildly affected, accounting for the clumsiness of previously automatic coordinated hand movements.

The biggest issue has been the side effects of the dexamethasone used to reduce the cerebral oedema, but my postop scans from last week show that the oedema is almost fully resolved. So it's just a matter of slowly reducing  the dose of Dex, and resisting my natural inclination to take on tasks and finish them. I'm getting much better at writing to-do lists, and avoiding multi-tasking. 

I've referred myself  to the Outpatient Rehab Service at the LGH to help me get through the postoperative recovery period, and the 6 weeks of combined chemo and radiotherapy that will commence here in Launceston next week. It will be strange to be a client of my colleagues, starting tomorrow, but I know I'll be in great hands, and it will be interesting to be a patient undergoing rehab :)

I feel that I have a very good chance to be among one of the 1 in 5000 GBM patients who survive for decades. Why the hell not? I have absolutely everything to live for, and am determined to do so. It's only 44 years until I'll be due my 100th birthday greeting from King William (King Charles having died before his 100th birthday by then).  

The only thing going against me was the presence of two tumours, but the surgeon said there were not any flourescent tumour cells left under after he resected the second tumour. He said the Gliodan allowed him to remove 30% more than had been visible with the neuroimaging. 
With luck, he got all of the first, encapsulated, tumour out as well, and my forthcoming radiotherapy and chemotherapy will suppress any remaining GBM cells.  I'm also embarking on major changes in diet and lifestyle in order to optimise my recovery. And looking at existing medications that are bad for gliomas, like Dissulfuram, Cytomegalavirus therapy, an antihypertensive that increases the permeability of the blood-brain barrier, and immunotherapy trials.

If the tumour recurs, I suspect it will be in the right parietal region, where the resection was done without Gliodan. It was probably growing there since 1997, when I first started getting terrible headaches that were attributed to sinusitis. If it recurs, we'll have the Gliodan solution to help the surgeon maximise the resectable boundary. I think I could cope with a bit of hemiparesis, if it came to it. But that's not going to happen.

I enjoy beautiful or funny get well cards (particularly the funny ones), if you'd like to send me one (PO Box 93, Launceston TAS 7250). This event has brought great joy and positivity to my life, and maudlin "get well soon" cards are a bit of a downer :)

I'm also happy to get your emails, and phone calls from old friends would be most appreciated, I'm worried about a couple of you who haven't returned my calls. I have my phone off when I'm sleeping, and have become skilled at knowing when to stop talking.

wishing you all a great week and the very best of everything

Fiona
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