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.


Sunday, 21 June 2015

update after a wonderful weekend and before Avastin #6

It's been a lovely weekend, I'm feeling happy and satisfied. We took the boys for a drive up Mt Barrow yesterday, and it was beautiful. I remember Dad taking us up there when I was in primary school, the views are incredible, and it's a pity the road isn't sealed, because it's more beautiful than Mt Wellington in some ways. An unsealed muddy road  up a mountain, plus the potholes and hairpin bends was not pleasant. It would be a great scenic attraction for Launceston. the boys had fun trying to crack the ice on a pond, which was frozen solid, and they didn't work out that the collections of soft ice on the vegetation at the side of the road would have made good snowballs. Maybe next time.

Today has also been great. I caught up with four girls I knew from school, one of whom has only come back to Launceston in the past year or so, and I haven't seen her before now. It was 30 years since we last saw each other, and our breakfast after 10 turned into a long catch up for nearly all of us. I'm feeling overjoyed, and hoping to see them again before we move to Melbourne. I'd appreciate it if anyone who reads this blog contacts me, rather than telephoning Ben, if they have any opinions about our move to Melbourne. I'm not writing this blog to create tension between Ben and myself. It doesn't help for people to call him about it. He won't tell me who you are, he just says that lots of people read my blog. I will have to set password access for it if this happens again.

In terms of my health and wellbeing, I have an appointment for my sixth treatment with Avastin at 9 or 930 tomorrow morning. It was meant to be last week, but my platelets were a bit low (80 the week before, 85 on the day). I suppose an anti-angiogenic drug could result in reduced platelet counts, especially if I've been having diarrhoea and bleeding from an old fissure, so I'm hoping it will all be okay tomorrow. I'd been incredibly and increasingly tired over the past week or so, but not this weekend, when I've slept well and deeply, possibly because of taking Melatonin (it's supposed to be helpful with cancer, in addition to helping with sleep), and because I haven't slept much during the day. Ben discovered that Avastin (the anti- angiogenic agent that I've been getting via IV infusions every second week) has fatigue as one of its many side effects. I'm hoping it's done what its meant to be doing, namely stopping any new tumours from growing, because my left eye has been feeling funny nearly all afternoon, and my tongue has started tingling on the left tonight as well. There doesn't seem to be any sensory loss elsewhere on my body, though there may be some on the left side of my mouth. I'll try to see my medical oncologist tomorrow, and I have another MRI scan booked for Tuesday. I've been doing my utmost best to avoid sugar and other carbohydrates, to boost my immune function by having pineapple, apple, carrot, celery, beetroot, and baby spinach juice in the mornings, and I've started taking Percy's powder again as it's meant to be good in fighting cancer. 

I have been in remission for so long. It's a blasted nuisance to feel changes on the left side of my tongue and mouth tonight. I've had 4 lots of brain surgery already. I'd rather not have any more. I don't want anything  new growing in my brain. I have so much to live for, so many things left to finish or to start. So many friends, family, and other people to see. I'm going to do everything I can to do all that I want to do. 

I'm meditating and praying every day, and doing other practices that people have recommended for my health and well-being. I must do some of those things tonight, before I fall asleep. 

Dammit, there seems to be some new form of tingling on my left hand, and foot, just now as I write to you. And now in my right forearm. It's time to turn in and hope the MRI is clear on Tuesday afternoon.

Sending my kindest regards to all of you, family, friends, and others who I may not have met yet. 

Your thoughts, prayers, and messages are appreciated, and I hope to see many of you again soon, or to one day meet those of you I haven't yet  met.

Time to turn in. Wishing you all sound sleep, happy days, and healing from anything that ails you.
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