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, 13 August 2013

No regrets

The rain set early in tonight
The sullen wind was soon awake...

It's a very wintry night here in Launceston, and the lashings of rain on the roof and windows keep summoning  Robert Browning's words to me, though the sad delusions of Porphyria's lover were forgotten until I read the poem again just now.

Ben and the boys are asleep. David had a fever earlier, and still has a hacking cough, which has lingered for over two weeks. I'm enjoying the silence of the house, the music of the rain, a slow and constant pattering with accelerandos of intensity, and diminuendos that change to sudden crescendos, like a overly dramatic orchestra summoning a swirling, dancing, frenzied mood.

I'm feeling very still and centered lately, as if all extraneous material has been swept away from my life, and I can now see the most important things with exquisite clarity. I feel, in a way, as if I am truly alive and aware for the first time, though this feeling is coupled with a strange affinity for moss growing on a damp log - time seems to pass very slowly. I still get upset and frustrated (for example, when Nathaniel refused to go to school today, saying in his baby voice that he just wanted to be with mama), but I can let go of it more easily than ever before, and things that would have had me distressed in the past seem to flow like water off the proverbial duck's back.

I can see how I previously avoided conflict and distressing feelings by keeping busy, and it seems to me that I have been sleep-walking for much of my life - particularly with my children. This may have been partly due to the chronic sleep deprivation of the past nine years, but I'm also aware that I spent far too much time being distracted by emails and reading endless interesting things on the net, rather than truly being present with my kids. Reducing, or almost eliminating, access to electronic playthings has helped improve connectedness in our household, though I still sometimes rely on them to give me the peace I need for an afternoon rest.

I feel sad for time that was not spent as well as it could have been, but it was all part of the path to being here, now, thankful for our many blessings, determined to make the most of every moment, and to cherish watching my boys grow up into fine young men. Non, je ne regret rein.