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, 15 August 2013

Four zaps to go!!!

And then ten years of tamoxifen...

It's a glorious sunny day in Launceston, I'm sitting in the sun, letting the wind ruffle the fuzz on my head,and the 15 eyelashes that David counted last night (7 on the right, 8 left). My eyebrows are still missing in action, but my salivary glands are making up for lost time by producing lots of thin saliva (did you know there are two kinds of saliva? Me neither!). So I still feel like a perpetual Pavlov's dog, and apparently sound like I'm drunk (thanks cuzzy).

On the up side, I'm now finding sudoku puzzles easy, I used to struggle a but with the easy ones, now even the hard ones aren't too bad- unless I was doing an easy batch! If I've lost any cerebral white matter volume during chemo, maybe it's been a useful pruning...

Monday 19th August 
It was sunny on Friday, then it rained furiously over the weekend. Reminded me of the wettest Tasmanian winters of my childhood. Good weather to stay indoors, and rearrange furniture!

I had my fourth-last radiotherapy session today, Ben and I are going to have lunch at Stillwater on Friday to celebrate the end of it. My skin is holding up okay, though it probably helps that I still have no sensation over my mastectomy site. The flesh around the scar has developed little  spots that look like blackheads, but my rad onc says it's just increased pigmentation. The area under my arm is quite red, as is the bit on my collarbone, but they don't hurt. I've been given some steroidal cream to use twice a day. 

Apparently, the 'new' radiotherapy doesn't burn people as badly as the old radiotherapy, where skin used to peel off in sheets. I'm glad I haven't heard any of those horror stories, it's bad enough to lie on my back each day, arms above my head, knowing I'm being blasted with gamma rays in a lead-lined room with a lead-lined door. I try to forget about Marie Curie getting cancer after experimenting with uranium,and the increased risk of cancer with exposure to radiation. I've put my trust in my oncologist, who convinced Ben that I would be well-cared for over here, when Ben wanted me to have my surgery and possibly treatment in Melbourne. That would have made things so much harder.

I'm trying to improve my diet- getting rid of fructose is the first thing. It feels slightly hypocritical to consume sugar after going through all this treatment, given that cancer cells need sugar to survive. But without another cook in the house, it's easy to succumb to sweet comforts. 

I'm feeling rather tired, not as bad as at the end of chemo, but I still don't have the stamina I had before. I'm also starting to feel a little set adrift now that the bulk of my treatment is over. I'm getting small flahes of awareness of the stress I've been under, and I suspect I'll be having a good cry when it's all over. It's hard to balance my body's need for recuperation with my life-long compulsion to stay busy. I know this need to slow down and recover is important, but part of me is fighting it, so much of my identity ha been tied up in my career, it's challenging to imagine who I am if I don't work, if I'm not striving for something.

Wednesday -sitting in a cafe with the boys, before seeing the physio. Feeling a bit tearful this afternoon. this morning, i tried to ask my rad onc about what happens next, he spoke about regular reviews, calling him if I have any concerns... I tried to argue for MRI rather than any more mammograms if I need repeat scans, but the evidence base isn't there yet, apparently. MR spectroscopy is supposed to be sensitive, but isn't available here yet. What I really wanted to ask was what do I do now? How do I cope now that the structure of chemo  and radiation is over? How do I get my life back together? Will I ever have the energy or inclination to do the things  I used to be passionate about? 

I didn't ask because it was hard to break through his jocular exterior, there were two medical students there, and I'm a coward when it comes to asking for advice about things that scare me. I can write it down here, but to vocalise it would bring tears to my eyes. After all I've been through, I still don't like to cry in front of others. Don't want to make myself vulnerable.
People are funny things.



Posted by at