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.


Saturday, 5 October 2013

Food cravings


My breakfast bircher
I have been craving proteins so badly in the past week! Mostly fish and nuts and seeds and eggs. It started with a craving for almonds after surgery, but it's much greater now.

My recent reading about nutrition and cancer suggests that my protein needs are enormous, not that I felt the same need for protein during chemo for breast cancer. I didn't really have much of an appetite, but now I'm absolutely ravenous, and mostly for proteins. By ravenous, I mean that when we had lunch at Net 19 in Abbot St the other day, I ate one serve of crispy skin Atlantic salmon with a side salad, the divine Net 19 salad (containing almonds, feta, and other delights), and both serves of the marinated fish pieces that the kids eschewed in favour of their chips (the fish was trevalla, I think, and the boys were turned off by the black veins in the white flesh). I could have eaten another serve of fish. Or maybe two. I was soooooo hungry!

I wasn't interested in the chips. At all. I tried one, and it was like salty chewy stuff, not at all interesting. So the ravenous appetite can't just be the dexamethasone - or else I'd be wanting to pig out on the biscuits and rollups and other utterly rubbish food that is in the pantry as "treats" for the kids. There's a date loaf in the fridge, and some fresh dates, but I'm not interested (and I used to love both). I was craving bananas immediately after surgery, but not any more (I must have needed the potassium). There's a lot of fruit on the bench, but it's not calling to me. The only fruit I want to eat is blueberries and raspberries. I am in love with raspberries. Ambrosia! and cheaper to buy frozen. Inspired by my friend Mat, I  want to buy four  mature potted blueberry plants this weekend, so that we can harvest our own this summer. YUM!

I guess brain surgery is a little more taxing on the body and sets up different needs to  breast cancer. While dexamethasone does increase appetite and cause fluid retention (the puffy face look), I lost 3kg in hospital (and discovered this morning that a pair of cotton jeans, one singlet, and a light top weighs 1kg!!! So weighing oneself sans raiments, after morning ablutions, and before breakfast is probably the best way to get an accurate weight for the day). Excess weight is a risk factor for cancer, so while I'm not going to go on a weight-loss diet, I'm hoping that I will gradually shed some of my excess padding through a much healthier eating plan.

The first step is to eliminate all sugar, aka fructose - sugar derived from fruit. Cancer cells need sugar to survive. Take away sugar, they die. I didn't give up sugar while having breast cancer treatment, because I wasn't going to get cancer again. Or so I told myself. And I needed the calories.

The other step is to eliminate all sources of inflammation from my diet - refined carbohydrates cause insulin spikes and inflammation (there goes white flour, pasta, rice - wholemeal or brown are better), polyunsaturated oils (don't use them anyway), and I've also been advised to use saturated fats, like coconut oil and butter. This flies in the face of conventional dietary advice, but is consistent with material I've been reading on the web for the last few years. We're hurting our bodies by eating highly processed foods. I lost 14 kg over 8 months when I eliminated them, and I regained it all in 10 months when I started eating them, and I got breast cancer and two brain tumours.  I'm hopeful that by eliminating them again, I suppress further tumour growth. And by eliminating them from my children's diets, they will never have to be diagnosed with cancer.

My rad onc says that no fructose doesn't mean we shouldn't eat fruit, but that we should only eat one to two serves a day, and we should not juice it.  Honey also has fructose, so while it's tasty and is reported to have health benefits, no honey for me. Interestingly, propolis, a honey-related liquid, is reported to have antiproliferative effects in cancer, so I'll be getting some of that tomorrow.

Another local doctor advises to only eat the juice of one lemon a day - it gives you vitamin C, and has cancer-fighting properties. My pharmacist who has also trained as a herbalist advised me to drink a lemon infusion each morning - you peel the rind and pith off one lemon, put it in a teapot, add boiling water, and really enjoy the subtle lemon flavour. The remaining lemon juices easily into a cup with Aloe Vera juice and warm water (recipe from my cousin Christine, who has the clearest, healthiest looking skin I have ever seen).

Giving up sugar doesn't mean giving up making sweet desserts -you just need to buy Dextrose powder, divide the amount of sugar in a recipe by 0.7 to get the amount of dextrose. Baked products won't get the same lovely brown caramel colour, but does that really matter? I'll still be able to make cakes and desserts for my family. It's worth looking at David Gillespie's books, which you can order online:  Sweet Poison and the Sweet Poison Quit Plan- the latter has sugar-free recipes.

There is some controversy at our hospital about the sugar is poison idea. A few of the doctors are very anti-sugar, but the dieticians aren't convinced  that the evidence is there, even though it's in their own journals. I've been reading about it for the last few years, and while I haven't done a scholarly review, there seems to be mounting evidence behind it. And would it do any harm to eliminate fructose from your diet? Sugar cane can be used as biofuel, we don't need to eat the stuff. The biggest problem is the inconvenience - sugar is added to just about everything, so you have to only buy sugar-free products, or make your own from scratch.

My favourite breakfast and snack food for the last 5 years has been bircher muesli, which I always bought at work. Bircher museli is made by mixing rolled oats in plain yoghurt with some apple juice or grated apple, and leaving to set overnight. The one at St Vincent's in Melbourne was wicked, with chocolate chips - totally unnecessary, but indulgent.  I now make my own with Greek yoghurt (cheapest to make in the Easy Yo that you can by for about $20 at Kmart). I don't use grated apple in it - I find that just 2 minute oats and yoghurt makes a good basic mix, to which you can add other tasty things. Like frozen raspberries, or blueberries, or rhubarb and raspberry compote. Since arriving home last week, I've been adding quarter of a cup of each of the following to the 1litre of yoghurt: Pecans, cashews, walnuts, Brazil nuts, almond, pistachio, pine nuts, hazelnuts; flaxseeds, sesame, sunflower, pumpkin, and chia seeds. Soaking them in the yoghurt mix softens the nuts and seeds. but I realised it's a matter of luck as to how many of each I get. To ensure I get at least a few of everything, I've measured out a tablespoon of each of the seeds into some small plastic containers, plus a number of each of the nuts, depending on the size. When I eat them, I add cold-pressed flaxseed oil, which moistens the mixture and tastes fresh and delicious. I had three small bowls before bed last night, and it was good.

Breakfast is bircher museli, an omlette with fresh herbs, garlic and turmeric (both have anti-cancer properties), a cup of lemon infusion,  and a glass of lemon juice with warm water and aloe vera juice. Did you know that lemons are ridiculously easy to juice if you have peeled them first? Just think about what happens to a juicy orange or mandarine when you peel it...D'oh!

Now I just need to work on the other meals. I'm loving salads and fish at the moment. I cooked the best atlantic salmon ever last night - I fried some garlic in butter, then added the salmon (cut into portions because it was quicker), and served over a bed of baby cos and rocket. It tasted garliy and buttery and good, and I think I need to stop feeding the Dex and start feeding me - I've put the 3kg back on, but I suppose I'm not getting lots of exercise. The most important thing is to be eating in a way that wll prevent recurrence. If I can change the family die as well, then I will be protecting all of us.