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, 20 January 2014

MET call

JThe dramas continued today. After working well for a potassium infusion last night, my infusaport stopped working this morning, and the nurse has trouble getting blood from it. He couldn't get enough blood for the required tests, which meant they had to try again.This time, they couldn't get any, so they asked for a nurse to come from the chemo clinic. While we were waiting for that, my BP dropped to 78/60 or something similarly low, which was enough to trigger a MET call- basically, a number of doctors came and asked me how I felt (dizzy and tired) and they spoke about giving me IV boluses of this and that... Only problem is, my port wasn't working and I didn't want to be cannulated on my right arm because it's been done too many times, too painfully, and I just want to protect the veins there for any blood tests. The left arm is still off limits because of the lymphoedema risk.
So this lovely ICU physician was gently feeling my arm, looking for veins, sensing my discomfort at the thought of being cannulated again- and then there was a code blue elsewhere in the hospital, and they all disappeared, leaving me to my nurse .
Another nurse from the chemo clinic came, tried to get the needle in my port to work, but it wouldn't accept the saline flush, or let any blood be drawn up. So the needle had to come out, and a new one went in. After some fiddling to
Get it in the right place (which luckily didn't require reneedling), I then had to try various positions (flat, sitting up, looking left, looking right, breathing deeply, raising my arm, lifting my chin) before the blood finally flowed. So much trouble to get transfusions, but better than having a cannula.

My haematologist came by today and said I'm to have gcsf shots every day, because even though my bloods rise rapidly afterwards, they also crash again very quickly, so they idea is to keep them up until they can stay up
Themselves.
So I'll have that ache in my thighs for company for a while.
I don't know if I'm in denial, or if there's something I'm not being told, but I don't feel too bad, and I feel like my brain tumours have succumbed to the treatment. It's just disconceeting to have a circle of doctors smiling at me with concerned looks on their faces. I don't really like it.
Must try and sleep now. Feeling very tired.

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