952 am on Saturday - I didn't sleep well last night, too hot between two boys who fell asleep in my bed while we watched Gravity on the laptop, too cold from the window we'd opened to make it less stuffy in the room overnight. I'm feeling sleepy and very hungry, and want to get to the weekly harvest market in Launceston to pick up some fresh berries and almond croissants (for David) before they sell out. I can always sleep later. The market is lovely on a day like this, and we always seem to bump into a few people we know, which is a lovely way to start the day.
I spoke to my neurosurgeon yesterday - he said I'lll need to have a CT scan in before flying anywhere - he said that airlines are increasingly requiring CT scans for his patients before flying, to exclude the possibility of air in the skull. I guess the pressure changes during flight could cause one hell of a headache, or maybe other things, which I don't want to know about. So I won't be able to book a last minute trip to visit Caroline and her family in Queensland for the last week of the school holidays (School resumes on February 2nd), well, not until I've got that CT scan. Ben's grumbling about not wanting to expose my brain to any more radiation than necessary, but I thought the radiation from a CT scan was minimal, and similar to that experienced during air travel anyway. Besides, I need to go to Melbourne to see the neuro-oncologist in February, so I'll need the scans for that trip anyway. Yes, we could take the ferry from Devonport to Melbourne, but I'd rather fly there in 1 hour than go through the tedium of the ferry journey (1.5 hours driving, up to 2 hours queuing before a 12-hour journey, then up to 2 hours to disembark, often after an awful sleepless night being tossed around in narrow bunk beds on one of the world's roughest stretches of water).
Ok. Ben's out of the shower, I'm going to follow him through, get dressed, and get us all out of the house before it gets any later. Time to grab an opportunity for a normal morning. I'm going to act as if I won't need to be back in bed again today before this evening, and see where the day takes me.
Looking forward to pretending that this is a normal day, that my life is normal, and that it always has been. I've been taking a careful approach for a bit too long now. I feel like being a little reckless again (wicked chuckle)
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.
