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.


Sunday, 8 December 2013

Blood, Pollyanna, and Harry Potter

I've had red carpet treatment at Launceston pathology the last few times I've been there. I will try to see this as a good thing, not as a sign that I'm becoming a 'frequent flyer'. The receptionists are starting to recognise me, ask if I want a 'senior collector', and direct me to a special waiting area. 

The nurse uses a small gauge needle, and gets it done very quickly and almost painlessly. Have to protect those two veins in my right arm, at least until the twice-weekly blood tests are over. One of the veins was starting to retreat from their needles last week, and I can't give blood on my left, thanks to the lymphedema. 

It's not too bad, thankfully, and wearing a pressure garment on one arm isn't that uncomfortable.. It would be far worse to have to wear pressure stockings for leg lymphedema

Gee, I'm so glad I read Pollyanna as a kid, and have had so much practice in looking for the good in everything,  the silver lining to every cloud. It's a habit that keeps me from falling into self-pity, even though it reminds me of the Secret Seven and the Famous Five- children keeping  on against the odds, without adult  help, beating the bad guys. I wish I could say I had amore sophisticated coping  strategy, but it works, so I won't knock it. 

My situation is a little more complex than Pollanna or Enid Blyton, and not quite on the scale of Harry Potter, but I sometimes feel as if I'm under a Dementor attack, and that I need to cast the Patronus Charm to stop them from sucking the happiness out of me.

It's  amazing how powerful happy memories can be, and the feeling of being loved by others. JKR captured some true magic in the Patronus Charm (and I find the thought of being saved by Remus Lupin, or Surius Black, quite pleasant ;) After the Dementors have gone away, I'd just like a nice stay in sick bay, until I'm all better again. Then let me fly a Hippogriff!

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