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, 25 June 2013

Laughing at pain

Wednesday 26 June, 3pm
I've just had my infusaport removed - and have been allowed to keep it. I think the kids will find it interesting - it looks like something you'd see hovering over alien surfaces on Doctor Who. This little bit of titanium has been attached under my skin for the last six months, making it uncomfortable to lie on my right side.  The tail was inserted in my subclavian vein, allowing toxic chemicals, IV fluids, and antibiotics to go in, and blood to come out. At some stage a bacillus decided to infect it, and since my chemo is over now, I don't need it any more. There has been a steady procession of nurses wanting to look at it. I'm told they can stay in for five years, just needing to be flushed every 6 weeks. If I get cancer again, god forbid, they can put a second one in, but not a third one. So I better not get cancer again!

it was removed under local anaesthetic (which should be called effing stinging anaesthetic out of honesty). Conjuring up my happy place didn't help reduce the sting, but wriggling my toes, flexing my legs (which were following a primal urge to flee), saying ouch, and squeezing the nurses hand did help. A bit. It was not quite as painful as childbirth, severe constipation, or a perianal fissure, but it did hurt. The only way I coped with it was through knowing it would stop me feeling my scar being spliced open. And the local was over quickly (unlike a certain fissure which is being very annoying indeed).



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