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.


Friday, 12 July 2013

3 weeks post-chemo

Friday 12th July
I saw my medical oncologist today, he said my liver functions are returning to normal, and that my weight gain (8kg in 6 months, most in the last few months) is to be expected. He gave me a script for Tamoxifen, but my radiation oncologist said not to take it until after my radiation is finished. So that gives me 6 weeks to get fitter and see if I can lose some of this excess weight before I start the medication that I will take daily for the next ten years, the medication that will launch me into early menopause, make me gain weight, and put me at risk of endometrial cancer, deep vein thrombosis, and pulmonary embolism. Oh, and it will reduce my risk of breast cancer recurrence as well. Yippee.

My new mantra is "it's better than dying of cancer". 

Helps put a positive spin on the side effects, experienced  or potential. 

My medical oncologist isn't a very cheerful person, he has an air of sad resignation when discussing most things, and was irritatingly pessimistic about my hopes of losing weight. While I don't want false optimism, it would be nice to be given a little encouragement. None of the famous breast cancer survivors seem to have gained that much weight.  I'm not going to accept that it's inevitable, and will work on getting as fit as I can, and eating a much healthier diet. Now that my energy is increasing, it should be easier to put more effort into cooking. I hate being the only cook in the house! 

I'm feeling better each day, though I still ache like I've walked 50km, I need the kids to pull me up off the sofa, and I struggle to stand if I squat down to get something. I'm hoping this will pass soon.

I'm going to buy three big boxes of chocolates and some thank you cards on the weekend, and take them to the chemo clinic, the emergency department, and the cancer ward. The staff there were fantastic, and I wish I could get never-ending boxes of chocolates for them. It makes such a difference to have kind and cheerful people looking after you when you feel revolting. At the moment, I'm not ready to return to a role as a healthcare professional, I'm still getting used to caring for myself, I don't think I'd be able to help anyone else. 

Someone said to me that I won't know myself in 6 months time, I'll be feeling so much better. I replyed that I don't know myself at the moment. I don't feel like myself, this lack of drive and energy is profoundly unlike me. But it's also a fascinating time, to have my life turned upside down, to watch time move by more slowly, to experience changes in how I function, and to see how that effects the people around me. A bit like watching a near miss in slow motion... 

28 cycles of radiotherapy (RT) to go. Onwards and upwards!
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