it's 854 am and I was woken by my beautiful boys about an hour ago. I would like to sleep some more because I'm still feeling tired. It's not like I didn't sleep well, but my sleep was a little disturbed, and I would like to have another try at getting some restorative sleep out of the way. My left eye has been feeling a bit funny every so often over the last few weeks. It feels a little dry, and if I sit here with both eyes open, I guess I must be experiencing double vision. Things are okay if I put a hand over either eye, or if I close my right eyelid (I seem to be able to hold it down by myself, no hands), but if I open my right eye, everything becomes a mess. I've never experienced double vision before. I thought it meant seeing more than one thing, but when I open both eyes, I'm not seeing more than one laptop. I'm just seeing lots of text on the screen, and it's very hard to read each individual line.
I'm glad I'm booked to see the medical oncologist at 1130 this morning. That gives me 2.5 hours to sleep a little more, have a shower, get dressed, make some juice (celery, pineapple, spinach, apple, and beetroot), and prepare to embark on the day. Ben just found my prescription sunglassess that haven't made much difference. I can read this very clearly with my left eye on its own. It takes a little effort with my right eye alone, but it takes lots of effort with both eyes together.
Back to eyes shut mode and all the prayers, mantras, and visualisations I can think of to get through this thing.
There are still so many things I want to do with this life, and I don't want to miss out on seeing all my family and friends again, or on taking the boys to holidays in wonderful locations. I'm going to keep doing my best to stay healthy and to get through this.
(Dammit! why did the council have to send a roadworks truck to our street this morning? an unpleasantly noisy accompaniment to the start of the day)
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.
