I'm feeling guilty now, after last night's self-pitying post. I've had a number of lovely messages that have made me feel connected, and less like I am writing to a void - I was not trying to make anyone feel guilty - I'm as much to blame for not calling or contacting you. There are so many people I think about who I don't contact regularly. We all have busy lives with family, work, and other commitments, and I don't harbour any resentment against anyone who hasn't been in contact.
It is great to know that there are some people out there, still reading - thanks so much for making contact. I don't get out much these days, and I feel a little like I'm performing an improvised solo act on a stage with the lights too bright to see how many people are in the theatre - I don't like doing solos, especially improvised ones, and I'm not sure when the performance will end and I can return to normal life. Taking part in an unscripted and unwanted drama is not my idea of fun, probably not anyone's. I just have to make the best of it.
It would be much nicer to be part of the MSO Chorus again, singing a well-rehearsed and magnificent piece like Bach's Singet Dem Herrn (which we did at the Melbourne Recital Centre and Sydney's Angel Place in 2009), under the direction of an inspiring conductor like Jonathan Grieves-Smith. It was so uplifting to sing, I always wanted to start it over when we finished. There are lots of versions on youTube- make sure you listen to all three parts. The first is sweet and cheerful , the second is a delightful fugue, and the Allelulia was so much fun, I never wanted it to end. I hope JS Bach knows how much joy he has brought to the world.
So tonight I prepare for sleep, my face feeling stretched from the Cushingoid effects of dexamethasone, which will be weaned off when I finish my RT in just two weeks. Hooray! I've looked up the effect of Dex, and I seem to be experiencing nearly every one, apart from osteoporosis and shortness of breath. At least it's only temporary, and if I get cataracts, it's a simple operation. I have to laugh about it all, or I'd be bloody depressed. I am so glad to be alive, to have the care and support of everyone who is treating, seeing, or even thinking of me, and I hope that I'll be able to use this whole experience for the greater good - achieving my lifelong desire to help people better understand brain disorders, but not in the way I imagined.
Wishing you sweet dreams and love, wherever you are.
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.
