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.


Friday, 31 May 2013

Cycle 5, day 4 (2:57am)

I'm leaning up against my pillows in bed, wishing the Zantac would kick in, wishing even more for sleep.

I woke over an hour ago with grumbling pains in my shoulders and knees. Last night I barely slept from  230-630 due to hot flushes, and two juvenile mummy-cuddlers who crept into my bed and promptly hemmed me in for what should have been pleasant snuggly warmth. I'd prefer hot flushes to pain. At least I slept from 11-2 during the day yesterday.

After realising I should take some pain relief about an hour ago, I took some panadeine forte. Then started to get that horrible acidic feeling in my gut that is like heartburn, only it allows me to feel my oesophagus, stomach, and beyond. So I tiptoed downstairs to take some yoghurt. Ginny was happy, being deprived of her overnight water after she peed on the carpet yesterday morning. I gave her some water, let her out, read some news online, enticed her back in with a treat, realised my gut might need something stronger than yoghurt, took some Zantac, went to the loo, and decided it was time to start on Movicol again. The joys of being on chemo!!!

Sadly, I'm down to my last Endone (haven't needed any for about 2 weeks), and I don't have a script for a repeat. I might be able to manage on the panadeine forte, but they didn't do much good on their own last time. There's still some slow-release OxyContin left from after my mastectomy, but it made me such a zombie, I'm not keen to use them again.

I'm starting to feel sleepy again now, with a touch of femur ache for spice. 

While I know I'm lucky that my diagnosis and circumstances could have been much worse, I'm also starting to feel unlucky - this is not something I would wish on anyone, the treatment is exhausting, even the nurses tell me I'm getting more side-effects than a lot of other patients. 

One good thing is that I'm getting better at staying calm in the face of things that used to stress me out. it's much better than losing my temper - that makes me feel so impotent and out of control. It feels good to be able to move to a calm place emotionally and cope with the daily stressors, like children who don't want to go to bed when I'm exhausted, or family worries. I'd rather not have these stressors, but maybe they'll change if I change they way I deal with them. Fingers crossed. 

Now, sleep.
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