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, 21 June 2013

Taxotere, last cycle, day 3

641pm
I'm lying in bed, feeling puffed and wrung out, which is one step worse than worn out.

I rested today, but didn't get to have the nap that I needed, and I'm suffering for it.
My plan is to try and avoid hospital through adequate rest, hydration, and nutrition. I've drunk nearly 2litres of water today, plus four milk milos, pear juice, and a chamomile tea. Despite all that, I haven't been running to the loo very much, this drug seems to cause fluid retention, so my face is puffing up a bit.
I was feeling dizzy earlier, lying down helps. I still have a problem with resisting rest, I need to calm my mind.

The new breast cancer nurse gave me some info on breast protheses and reconstruction on Wednesday. I read it today and threw it across the room. I'm not ready to think about the options just now. I'm quite happy to be lopsided, and I'm not aware of any greater discomfort on my right side from the weight of my remaining breast. I can hide my asymmetry under scarves and cardigans, but I frankly don't give a damn if I offend anyone by my lack of symmetry. Although I admire the aesthetic and function  of breasts, I hate the traitorous bastards and sometimes wish I had never had them.

There are a range of external protheses available, but they're not recommended until 4-6 weeks after radiotherapy, which will finish for me in mid August. The thought of going to be fitted for a prosthesis and a bra to accommodate it doesn't appeal to me at all. Nor does the thought of breast reconstruction. More surgery, more pain, more recovery, more potential complications.

I suppose I might change my mind over time, at the moment it's too much information, too soon. I don't need to make a decision for ages, I just need to get through this round without sinking as low as I did last time.

One step, one moment, one thought at a time. That's how I'll get through. Time to meditate.
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