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, 17 February 2013

Pandora

Panadol proved to be no substitute for the Panadeine Forte that ran out last night. I'm blessed with a kind radiation oncologist who wrote me a script for some more Endone, and some Oxycontin slow release, to keep the pain at bay. I expressed my frustration at how long it was taking to heal, and he gave me a very helpful analogy: if you put a tomato plant in the garden, you don't expect it to bear fruit in one day, or even one week. Recovering from surgery takes time, just like growing things in the garden.

Of course, my impatient mind wants my body to hurry up and defy the laws of nature in its healing capacity, but my heart is in sympathy with my body and is telling my mind to stop being so bossy. My mind worries about that, because in being bossy and busy, it keeps all the troublesome emotions locked in Pandora's box. My mind doesn't like it when they seep out like vapors, bringing tears to my eyes, it makes my mind fear a loss of control. But I know that I need to let the feelings out, that crying isn't a sign of weakness, that I won't lose control, that people won't think less of me. Dad's death last year taught me that I can be strong and keep functioning even when my heart is breaking, and that I needed to allow myself to grieve for all that we lost with his illness, the wonderful grandfather that my boys never truly knew. I also learnt that I need to nurture myself through difficult times, or I am not much good to the people I love.

This week has felt like a lull in the juggernaut that swept me up when I was first told about the lump on January 18th. I've made it through surgery, I've recovered quite well, and the adrenaline surge that kept me going has gone. It feels a bit like bodysurfing a long, turbulent wave, getting dumped, but rising to the surface full of exhilaration at the ride, the unreality of being tossed and pummeled at the bottom, and the joy of still being alive. Now I'm just waiting for the next wave to come. I'd prefer to be out of the water, but I know I need to catch these waves of treatment and make it to the surface each time, even though my body may ache and I will get very tired. People have gone through far worse things and survived, I will make too.

My rad. onc. also gave me helpful and non-scary info on the proposed chemo regime - 3 to 4 treatments with FEC, then 3-4 with Taxotere, followed by radiotherapy to the chest wall and above or below the collarbone. He says the plan is to over-treat, rather than under-treat me. I'm game. I want to be one of the 3/4 stage 2B breast cancer patients who is still alive in five years. Not one of the 25% who is gone.

I'll be meeting my medical oncologist at 9 on Tuesday. Chemo will start next week, and we'll see how I respond to it. I hope to buy a new 700l side-by-side fridge so that I can have room for frozen meals, in case I don't feel up to cooking. It feels a little like I'm preparing for a siege, only I don't have any enemies, and visitors will be permitted and welcome.

Time to meditate and peek in Pandora's box before I go to sleep. According to wiki, Elpis, the spirit of hope, was left at the bottom of the box that Pandora opened. That's a spirit I want to nurture.

Sweet dreams, dear people, and love.

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