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, 10 September 2013

Survivor tales

I slept better last night. Pain was under control, and I had a Temazepam around midnight, which helped me sleep for an hour or so, until I woke up feeling hot (in Hobart! In September!), I had some Endone, and then slept through to 630.

I've found a wonderful site with survival stories from people with different kinds of brain tumours. http://www.virtualtrials.com/survive.cfm

I haven't read all of them yet, but it's so great to see that people can survive for decades, even with the most aggressive tumour types.  Recurrence is always an issue, but if it happens, they just work on removing the tumour and moving on. I'm hoping that my relatively young age, good health (prior to the breast cancer), lack of seizures, resectability of the tumours, and determination to live as fully as possible will help me through. As one survivor wrote, it's not worth worrying about things we can't control. I also believe its not worth worrying about things that may, but haven't happened yet. Worrying takes time and energy that can be spent more productively on dealing with actual situations, and on enjoying life!!!

So I'm feeling much better this morning. The results will be what they are, we can always get another opinion on the pathology if necessary, and we can go to Peter Mac in Melbourne to get specialised radiotherapy to mop up around the tumour sites..

It's a darned nuisance that this has come just after finishing my treatment for breast cancer, but it's ok. I got though a torrid treatment regime with breast cancer (chemo was the worst), and now it's just part of my medical history. I think I'll have the other breast off as soon as is sensible, and live my life as a flat-chested woman. Being alive, feeling the air enter my lungs, breathing out, loving and appreciating people - these things bring me more wonder and joy than the satisfaction of having perky boobs, wearing makeup, and hair ever did. Though maybe I'll just keep a watchful eye on my remaining boob, and avoid further surgery unless its necessary. Too early to decide now.








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