Blogging sometimes feels like a coward's way of sharing my news.
I can write in the comfort of my room, taking breaks when I need to, formulating my thoughts, confessing to some emotions, suppressing others, and publish the post without knowing exactly how it's going to affect you, the reader. My family, friends, acquaintances.
You've chosen to be here, to read this, and I appreciate it, and admire your courage in reading what sometimes seems to be like watching a train-wreck in slow motion. The heroine of the movie keeps flying around and rescuing people, but the train keeps falling apart. Can she pull it together, put it back on the rails? Will it still be a train at all?
I don't know. I just keep going, trying to be as patient, compassionate, appreciative, non-reactive (non-irritable) and kind as I can be, trying to enjoy every day that is given to me because if they hadn't found the tumour when they did last September, I would very likely be dead. Every day since then has been a gift. I just have to remember to look at it that way. And I do need to remember, rather than looking down at the rocky road I travel. I need to keep looking to the sun, to the light of hope, to the clear beauty of the infinite amount of love that exists in the universe, love which creates and sustains every living thing. Everything is fundamentally perfect and good, and I need to keep remembering that, seeing that, and trying to manifest it in my life, to help make life better for every living thing.
It seems vain and foolish to have such lofty goals - but if I focus only on relieving my own suffering, which is created if I immerse myself in fear of the future, or guilt about the past - then I am being selfish and missing a chance to do greater good. If I focus on generating love and healing energy for myself and all other beings, then I am sharing it with others, and not keeping it for myself. It would be selfish to ask others to pray for me, or think of me, if I didn't return the favour.
It's good and bad that my hair is growing back - good because it makes Ben and the boys, and Mum, happy, good because it's warmer, but bad because I quite enjoyed being bald, and it saves me time that could better be spent meditating.
I hope and pray that I will live a long life, so that I can be a good mother to my boys, a good wife, sister, daughter, aunt, friend, and an advocate for all those who have experienced brain disorders and serious illnesses.
I hope to spend more time writing, as my endurance increases and my need for sleep decreases.
Wishing you all peace, love, joy, and good health.
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.
