412pm and I'm back in bed, needing some more sleep after sleeping in until after midday. My face is feeling a little numb and tingly, and I was bothered by a feeling of intermittent nausea throughout the morning. It seems to have passed now, thankfully. I've been having strange cartoon-like dreams in which things don't seem real, or the characters argue or complain that things aren't real. I suppose my existence is a little like that right now.
I saw the medical oncologist yesterday, and he was happy for me to start the Avastin tomorrow morning, but then the neurosurgeon told him to wait until next week, which will be 4 weeks after surgery. The neurosurgeon also said he's looking for a radiation oncologist who can give me stereotactic radiotherapy (radiotherapy guided by brain imaging), so it looks like we might be moving back to Melbourne. If anyone over there would like to recommend suburbs with good state primary and secondary schools, please let me know by email. Moving house is one of my least favourite activities, but I'm willing to consider it if it helps defeat this nasty form of cancer. Ben and the boys had a lovely time when we were over there for the surgery, and I also enjoyed seeing several of the friends I'd made in the 24 years I spent studying, working, and teaching over there.
Thanks to those of you who have written to me recently (Elizabeth, Caroline, Areti, Barbara), it's nice to be in your thoughts, and I hope we can be in contact again soon.
David loved his first go at rowing on Saturday morning, and will have another session after school today. Nathaniel is off at year 4 camp (at Camp Clayton, near Ulverstone), so we're hoping he returns tomorrow with many happy memories of diverse experiences.
Time for me to snatch a little more sleep and hopefully dream that things are real, not like some bizarre extract from SpongeBob SquarePants, or Adventure time.
A blog started in 2013 to inform family and friends about my treatment and progress for early breast cancer. Then I went and got two brain tumours,,both GBMs, completely unrelated to the breast cancer, so the blog continues.
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.
