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, 16 June 2013

Cycle 5, day 12. On the home stretch

Sunday the 16th of June

I've had a good weekend, though it's been miserably cold, with an icy wind from the south east that has chilled me to the bone. I get particularly cold between the shoulder blades and on top of my head. We're lucky to have a well-heated house, but some drafts still get in and make things unpleasant.

I had lunch with an assortment of old school friends yesterday, it was great to see them again, including one who I hadn't seen for 30 years, a wonderful woman who was a few years ahead of me at school, and who has been a marvelous support through this trying year. One of my boarding-house room-mates came and stayed with us last night, it was fantastic to meet her grown-up daughter and to have breakfast with her this morning. There's something so comforting about reconnecting with old school friends, there's a level of acceptance and affection that heart-warming, and I feel so glad to see them again. 

I have my last dose of chemo in Wednesday, so tomorrow will be spent having a routine pre-chemo blood test, seeing the medical oncologist, and going to get set up for my radiation, including getting four tattoos which act as markers for the radiation treatment,

 I've been reading up on Taxotere and G-CSF again, wondering if there is anything that we can do to prevent another episode of neutropenia, like having the G-CSF the day before chemo. I found an article in Australian Prescriber that recommended against giving chemo and G-CSF on the same day, as "some combinations may increase myelosuppression" - i.e., make matters worse for my white blood cells. Dammit. I'll just have to pack a bag and do my best to protect my immune system for the next week. If I end up in hospital with a fever again, I'll be ready to rest and recover. I'm so glad there's only one more round left, it's been an awful endurance event, and I feel like I'm barely limping at times.

I have to remember to ask about my vision, it's been getting worse over the last few months. I thought it was just because I haven't been using my new multifocals when reading, and that I've been spending too much time trying to read small print on my phone, but visual changes can result from chemo too. Something called cystoid macular oedema, or a build-up of fluid in little cysts on the macular, because Taxotere can cause fluid retention. Fantastic! I'm hoping I don't have it. It's bad enough to have gained 5 kg in the last 6 months. I'm now the heaviest I've ever been, even more than when I was pregnant. At least my jeans still fit, and I'll be walking every day in an effort to fight fatigue and to recondition my poor body. 

Not long to go. Time for sleep.
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