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, 27 September 2013

Second postop MRI, spring cleaning, prayer flags

I had my staples removed this morning, a little fiddly for some to come out, but not uncomfortable. I was allowed to keep the staple-removing scissors. David promptly discovered they are good for clipping the leads off pencils...not the most constructive use, but creative. My MRI was scheduled for 3pm, it took about 40 minutes, with lots of noisy clanking and pulsing and a gadolinium contrast. I dozed off on the trolley waiting for the scan, and then dozed off again during the scan, head comfortably rested on a foam pillow, headphones trying to pipe classical music over the machie noise (Vivialdi's Spring put up a particularly valiant fight), headphones clipped into a head brace that stops the head from moving. Motion artefact makes scans hard to read, and I wanted mine to be pristine, as today's MRIs will be used in planning the radiotherapy approaches to my two tumour sites. So I hope I didn't entirely sleep - I startled myself by snoring once or twice, and think I moved my hands, but my head was comfortable and securely fixed in place.

They gave me a CD with the scans to bring home, but we can't open it on any of our devices. No matter, really, we know I have a brain, and it's safe in its cranial vault.

My rad onc will be working on the planning phase over the next few days, and I'm not sure when I'll start the CT/RT combo, but that's okay. Recovering from brain surgery is tiring, and having a delay before treatment starts means that I'm getting lots of rest, rehydration, and nutrition. And delightful interactions with other people! It's so wonderful to hear other people's stories. Nice, simple, everyday tales, or dramas or love strories. or work intrigues. There are so many fascinating stories in people's lives.

A lot was achieved in our house today. Removalists came to take Hannah's things to Canberra, where she will be living with Ben's brothers Solomon and Jacob. One wheelchair, one bath board, one over toilet seat, three cartons, and one very carefully packed mantle clock. I had packed her things a few weeks ago, feeling slightly guilty for not having the time and energy to sort through all the bills and papers that elderly people accumulate, but knowing that it was the careful packing of sarees and plates and various knicknacks that would matter the most (I hope they are safe!), and I trust that my in-laws will forgive me for not sorting through the papers.

While on site, I had the removalists move some furniture within the house. The old wardrobe that I found and stripped back while living in Carlton in the early 1990s is now in the small bedroom upstairs, and the window that it blocked in my walk-in-robe is in desparate need of a gauzy blind. The treadmill is now in the rumpus area upstairs, fitting perfectly under the slope of the roof until I'm able to start using it again. The little cupboard that Mum's father made is upstairs too, full of sumptious fabrics I collected in SE Asia two decades ago, and items suitable for gifting for others.

The large flokati rug that has never lived under our bed will be finally assuming its correct position tomorrow. Little Popo, our departed Tibetan Spaniel, was a compulsive marker, so it's been kept unused for over 10 years. Now that he's gone, it will spread sumptiously out from under our bed. Bliss!

The old sofa set from Eltham is off to be reupholstered - turquoise, I think, to match a mosaic mirror frame in our family room. And then the dreary brown sofa set currently in the family room will go upstairs to the rumpus.

A few bags of hoarded clothes and jackets have been donated to charity.

It feels great to have moved  things around, the energy in the house is feeling better, and Lord knows we need it.

I was horrified to find a bundle of Tibetan prayer flags in a dining-room drawer the other day. They belong tied up in the air, so that the wind can take the prayers and float them across the universe. I don't know why I'd neglected to put them up when we moved in 2010 - maybe I couldn't find a place? The first place I found was perfect, running across the back of the house, from the kitchen window to the back door.

I feel the desire to buy many more prayer flags and fly them in our garden. It will look like a hippy place on the hill, but I want to fill the sky with prayers for compassion and health and joy and forgiveness and joy and unconditional, endless love for all sentient beings.

(a child of the 70s finallly entering her latent hippy phase.)

All you need is love.

Love is all you need.


My kind removalists

New mantlepiece arrangement. Feeling right, at last :)



Left occipital with staples

staple-removing scissors

Staples

 All gone