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.


Thursday, 9 January 2014

Thursday January 9th

It's a beautiful sunny evening. Ben and the boys have just left, after being here nearly an hour. The kids are tired after another day with mum, and while nathaniel gave me lots of wonderful 9yo cuddles, David was upset because I'll be here for another 5 days- he demonstrated his distress by picking on nathaniel, pouting, and being generally surly while absorbing himself in games on my phone.
I'm very thankful that the results of my bone marrow biopsy haven't come back today. I'd rather sleep well tonight, not knowing the results. They can wait until tomorrow.

I decided today that patients need to be approached cautiously , as you'd approach a wounded animal, slowly, carefully, with a hand outstretched, until you know how they are feeling that day. The gleeful, efficient enthusiasm of many health practitioners can be irritating to the patient, making it hard for the patient to say exactly how they feel, to express their fears and concerns, to feel that it's okay to be uncertain or afraid. So-called behavioural problems in elderly, confused, or demented patients may simply be irritated responses to high-energy cheerfulness from staff, whiich can be over stimulating ,where smiles may see like smirks, and promote paranoia rather than a sense of being cared for.
It's been wonderful to see the way my former colleagues love their jobs, but it would be good if nursing and allied health staff could learn to be like seasoned medical consultants, whose demeanour is usually appropriately serious at first, but can lighten when appropriate.
I use humour as a defence, and engaging in verbal banter helps me pretend that these people are still my colleagues, that there's nothing wrong with me. My energy to maintain these defences is diminishing.
I hope to recharge my batteries with a good sleep tonight 

Love to you all
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