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.


Wednesday, 3 December 2014

Life after the conference, a summary of dietary tips, and reflections on looking back

I think my presentation went well, and I hope I managed to cover the key points that I wanted to make. It was such a rush to trying to convey something meaningful in 30 minutes, even though I used the "less is more" approach in doing my sides.  They had to bring extra chairs into the room, and people were standing at the back. The audience gave an enthusiastic round of applause, and a number of people said very kind and reassuring things afterwards.

I felt exhilarated for the first day or so, but then was hit by a bad case of post-presentation doubt. Even though I tried to stay on topic, and didn't include many details of my treatment, I felt like I'd exposed myself and done a metaphorical naked lap of the quadrangle back at Uni, with friends, colleagues, and strangers looking on. 

I felt so compelled to give the talk and share the insights I'd gained as a clinician-turned-patient, that I didn't anticipate how I'd feel afterwards. I was simply focussing on getting through it, and not what would happen next. A bit like having treatment for cancer, really. 

Looking back has made me realise that I was very ill last year. I was talking to a friend who is a GP yesterday, and she winced when I said I had pancytopenia at the end of last year. Her expression made me wonder exactly how ill I was. I'm not going to do any reading about pancytopenia (when all of your blood counts, including red blood cells, are low), but I guess that my need for four or more blood transfusions, a three-week hospital admission, insertion of a new infusaport for administration of all the blood, fluid, antibiotics, magnesium, potassium, and whatever, suggests that I was pretty unwell. I was a little worried when they did a bone marrow biopsy to exclude nasty haematological disorders like leukemia, but I didn't have the energy to research things, or even to worry very long. It seems that the Temodal, used for my brain cancer chemotherapy, caused a prolonged and severe pancytopenia, probably because my bone marrow had already been weakened by the six cycles of breast cancer chemo beforehand. 

Don't take your immune systems for granted, gentle readers. I didn't nurture mine enough before or after my first diagnosis, I kept thinking that cancer wouldn't happen to me. It happens to one in three men and one in four Australian women. Pretty rotten odds of getting cancer sometime.

Educate yourselves about what you can do to reduce the risk, and don't be overwhelmed by the amount of information out there. The basic facts seem to be that cancer thrives in an acidic, oxygen-depleted, glucose-laden environment. Many sources recommend steps to make your body more alkaline (less dairy food, apart from fermented dairy products; lemon juice or apple cider vinegar in water each day), plenty of water and regular exercise to maintain hydration, remove toxins, and have a well-oxygenated body; and go for a LCHF (low carb, healthy fat, ketogenic diet). Eating lots of green vegetables, beetroot, cruciferos vegetable (broccoli, cauliflower, Brussels sprouts) and limited fruit (fructose becomes glucose in the blood). 
I'm not an expert in this, and not qualified to recommend specific strategies to reduce cancer risk, but these are suggestions that appear repeatedly in the reading I've been doing. Such dietary changes are difficult to achieve for many people, but they are worth it if they help keep you healthy.

This link, from Brain Tumour Alliance Australia, includes an unofficial summary of a recent brain tumour conference. The notes on life after brain tumours and rehabilitation were particularly interesting to me. 

Yet again, I realise how fragile life is, and how lucky I am to be relatively fit and well and free of major cognitive or physical impairments. I'm not going to allow myself time to look back on what happened and what could have happened. I need to focus on enjoying the present and setting some new goals for the future. It doesn't help to think about what happened, or to wonder exactly how sick I was. That time of daily injections to boost my bone marrow function, and twice weekly blood tests, is over. I'm getting healthier and stronger each day. I'm going to be here for my boys for as long as I can.

I must sleep now, I'm tired after getting the groceries with mum, and the boys will be home from school soon.
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