Dear friends of Aislinn

Hi Friends,

In case you didn’t know our beautiful aislinn passed away peacefully at 11.25 am Perth time on Tuesday the 6th of October.
We had a short, succient, service on Thursday with a Buddhist monk who Ais had meditated with and some simple short speeches then we released some doves. There was a lot of emotion in the room but the monk calmed everyone down and made all feel at ease. I know a lot of people would have liked to have been there but Aislinn really wanted Ajahn Brahm presided over the event leaving less than 48 hours to finalise the funeral arrangements. We know that those that couldn’t make will all be thinking of Aislinn where ever they are and hopefully getting support from those around them.
As you might know. a group of us had organised a event named “Fundraislinn” for Aislinn on the night of her passing in Melbourne. This event went ahead and people were told on the night as you could imagine there was a lot of tears but people were at least together in the same room when told and had each other to hold onto. It is times like this when we need some of Aislinns strength. The event ended up raising close to $30,000 and is testament to the amazing people that were drawn to her character and wanted to help ease a little of her burden. Funds raised will be used to pay off some medical/funeral expenses, find a way to best utilise the research that Aislinn had made into cancer treatments and towards the Cancer Support Network of WA.
Please keep checking this blog as we will be discussing Aislinns legacy and how we can use her research and funds that have been raised.
With Love, Matt

Plumbing

I found myself in hospital for no other reason than constipation. It all started a month ago; indigestion pain, reduced appetite, no appetite, no thirst, psyllium husks, aloe vera, castor oil, enema, I tried them all, But after nine days of being stuck, straight to emergency for me.

In emergency, I was diagnosed with solid bowel blockages under my rib cage, which could only be removed with saline drips and MOVICOL. My calcium was very high, nearly 6, compared to the healthy level of under 2.65. A week later it returned to 2.48. High calcium can also cause constipation.

My liver function tests were all over the shop. Because it was enlarged, it was putting pressure on the stomach, bile ducts and intestinal organs. Again, the calcium levels dropping helped this improve. I took some electrolytes and other meds, some quite unpleasant – but if you put one over ice with a little fruit juice, give it a stir – it almost passed for a martini.

Got jabbed a fair bit with needles for daily calcium tests, blood sugar tests, saline drips, and also rose stems. But all in all, I’m not feeling too bad now. Eating three meals, something I couldn’t do weeks ago. There have been other high points too.

So many wonderful comments on my blog. Lots of gorgeous contributions to FundrAislinn – creative, PR and keen bidders. Heaps of beautiful parcels and cards in the mail from WA, ADL, VIC, Vietnam, Japan, and USA.  Countless gifts in hospital too – flowers, oil burning, videos, fruit, a doll and more – plus the lovely visitors who brought them. Thank you, one and all.

Yes it’s been a tough week. But with the help pf the Silver Chain nurses, I am home now and getting stronger. The aim is to eat, shower and pass bowels regularly.  I’m rolling again, and I want to stay rolling.

Tortoise Wisdom

A friend asked me what animal I identified with, and I replied with “Tortoise”. She wanted inspiration for her creative contribution to FundrAislinn (see previous post), however it really got me thinking. By nature, I am slow and methodical in writing, researching and doing chores. Exercise-wise, I keep a slow and steady pace. Being quite introverted, I live in my shell. I also have a long skinny neck. It seems I don’t just identify with the tortoise, I AM a tortoise. And by pretending to be a hare, I have got myself into a right mess, medically speaking.

I have raced to and from social engagements ever since I got my driver’s license. I moved out of home, age 21, as fast as I could. I worked in the advertising for 10 years, renowned for its fast pace and ridiculously-short deadlines. I rushed into getting a nose-stud, giving it only minutes of thought, not that I regretted it. I rushed the moved to Melbourne, with a still-swollen rolled ankle.When I was working, I continued to socialise like crazy on the east coast. I rushed into living with my boyfriend, not that I regret it, but we lived together within a month of going out. This was only temporary however. I rushed from rental to rental, moving every year from 2002 to 2006. Always at the mercy of our landlords desires to sell, move back in, etc. I rushed from contract to contract when full-time offers were not forthcoming, flying to sydney several times, as well as all over Melbourne. I rushed into orthodox medicine when first diagnosed – the quick fix option. Naturally it didn’t work. I rushed around Melbourne seeing doctors about alternative, when diagnosed the second time. Luckily I didn’t rush my research of Stage 4 treatments over the last two months.

The good thing about being a tortoise, once you realise you’re a tortoise, is that you’re never too old to learn new tricks. The turtle, once reaching 150 years of age, is not so flexible. So, lessons I’ve recently learned:

- Slow down: I pushed myself to get to decision phase faster than I was physically up to. Now I’m paying for it with back spasms and stomach cramps and indigestion. Liquids only for me.

- Pee in a jar: Permanently tense stomach muscles meant I could no longer get to the toilet fast enough, having weak legs from little food. Now I have a jar by my bed. Something I’ve become quite good at, although the irony of 29-year-old incontinence when living with continent 80+ grandparents is not lost on me.

-Delegate: I can’t do everything myself, but thanks to my parents, grandparents, brother and US es-pat friend, I’ve made a lot of progress on my Bill Henderson homework. Bought the supplements, ordered The Emotion Code, bought a stick blender, got an appointment with a holistic dentist, even spoke to Bill Henderson. Thanks guys for your help on this.

-Go back in the shell more: My meditation practice had really lapsed and after watching an Ian Gawler special on Compass, Sunday 31 August 10.10pm, downloaded from the abc.net.au, he reminded me to nurture the mind and spirit also, instead of just focusing on the body.

-Prioritise: My list of things to do is long. When I get close to clearing my In Tray, more forms arrive from Centrelink, my Super Fund, more homework gets given, etc. It’s overwhelming at times but if I can do one or maybe two things each day, then that is enough.

Tortoises are clever creatures. They know that slow and steady wins the race. If I can just stop being so fearful, and fear clouds the mind, I won’t rush into things because I’m scared. Enter meditation and prayer. Mind, body, spirit, take care of them all. Just do it the tortoise way, that’s my motto.

FundrAislinn

Well, it’s a month to my birthday, and it looked like it’d be a fairly quiet affair. I hadn’t celebrated it with my family for seven years, or my THai ex-pat friends for years, so it’d be special in that way. But considering it’d be my 30th, it wasn’t anything to get too excited about.

Then I found out my wonderful Melbourne friends were organising an event, the night before my birthday, called FundrAislinn. It’d be a silent art auction, complete with MC, birthday cake and possibly live music, and all funds raised would go towards my treatment costs.

If anyone was leaving their twenties with a bang, it’d be me. Over 50 contributions have been received to FundrAislinn – verbally at this stage – including some quite famous names. All my Melbourne friends would be attending, and all my friends in various states would be contributing – either with art, by bidding, or spreading the word to art collector friends.

It looked to be a pretty fun night. Better still, I wouldn’t have to feel guilty about not attending. I’m pretty weak these days, and just not up to leaving the house at night. Nor would I feel jealous of the cake eating – something in which I could not partake . My diet is too strict!

Life is precious, and a birthday celebration marks its importance. Not only is my birthday being celebrated in style, Fundraislinn will help fund the costs of buying more time. To everyone involved in this event – the organisers, the gallery venue, the PR people, the artistic contributers and the bidders – I thank you from the bottom of my heart. This is going to be the BEST birthday present ever!

I also hope this event inspires other cancer patients with lateral ways to raise money. In these economic times, all charities are facing a hard slog. For more information on how I did it, or rather, how my friends did it for me, see FundrAislinn.com

Decisions Decisions

Relief at last! I was thoroughly over treatment research, constant packing and moving and traveling constantly to doctors’ appointments. So last week I made some big decisions. As a result, I can now chill out a bit more – mentally, physically and emotionally speaking.

I am now living permanently with my dad and grandparents, Monday to Sunday. I used to pack half a day Friday and half a day Sunday. It was very draining and gave me less time to focus on treatments. Also, mum gets the break she needs to regain her strength, so everybody wins!

I’ve cut back on my doctors’ appointments, keeping just the essential ones. This reduces my stress and means less car travel which I also find draining. It also gives me more time to concentrate on my new treatment. Speaking of which, I’ve finally decided on a course of action; the Bill Henderson Protocol.

The pros are many:

•    Fast working

•    Gentle and non-invasive

•    Won’t cause much tumour swelling

•    Feeds the healthy cells as well as killing the cancer cells

•    It comes with the best expert on this treatment in the world – phone and email support from Bill Henderson himself (based in the U.S.)

•    It’s recommended by the Cancer Support Association of WA

•    It comes with many positive testimonials

•    It’s not going to cost the earth (compared to the 50K we spent on sodium bicarb therapy)

•    It’s not pharmaceutical-based

•    It’s based on an age-old, tried and true, proven cancer cure called The Budwig Diet

•    The Budwig Diet, with other supplements, is the No. 1 recommended treatment for liver cancer (on cancertutor.com)

•    The same diet with supplements is the No. 2 recommended treatment for breast cancer (on cancertutor.com)

•    The Budwig Diet part replaces two meals a day (thank goodness, the Ayurvedic Diet I’m on is hard work)

•    It comes with its own testing method that doesn’t expose me to unnecessary radiation

•    Bill Henderson reckons I should see results in 3 months and that I have a 90-95% chance of success, provided I do everything in the Protocol and also deal with the three main causes of the cancer – diet (98% there), unresolved emotional issues (yet to address this), and dental problems i.e. wisdom teeth extraction infections, mercury almalgam fillings, root canals etc (yet to address this)

•    It won’t require me to drive to a clinic as I can do it myself at home

The cons are few:

•    There’s no guarantee that it’ll work, but even chemo doesn’t come with  guarantees

•    I have to digest a lot of cottage cheese and flaxseed oil mixed together

•    I have to digest a lot of supplements

•    Some side effects, but these are small and indicate the treatment’s working
So, have I started yet? Unfortunately not. I have a little bit more homework to do:

•    Buy the supplements

•    Buy some emotional cleansing books and test kits

•    Look up oil/cheese wholesalers

•    Buy stick blender to mix oil/cheese

•    Look up shrinks/Journey Practitioners/German New Medicine practitioners

•    Talk to Bill Henderson for initial consult

We’ve finally got the wireless internet up and running at my grandparents’ house. Big relief. Previously, three of us were sharing my grandma’s computer with one-port modem. (Thank you grandma and grandad, for letting us monopolise your computer, and your car, to get to all the doctor’s appointments.)

It’s also nice to feel settled. I’ve made the all-important decisions, now I just have to run with them. If I drank anything stronger than San Pellegrino, I’d proprose a toast. Cheers – to everyone who helped me get this far. You know who you are. Couldn’t have done it without you!

Not-So-Terrible Twos

Everyone in the family is pretty healthy again now. Except for two people; my brother (got a cold) and my mum (still run down after two months’ caring for me full-time months while working six days a week). Luckily, the burden on mum has eased somewhat.  After a bit of moving last week, I now have two homes, two backyards, two wardrobes, two home offices, two organic larders, two primary carers, and two families with which to eat family dinners. I added a second cancer-specialist GP to my medical team. I also started unpacking suitcases for the second time since arriving in Perth; the removalists delivered all my stuff from Melbourne (packed and organised by Matt, thank you).

Now that I live with my Dad and grandparents during the week, and my Mum on weekends and during school holidays, I feel less guilty knowing that the burden of looking after me is being shared. I feel more appreciative of my two homes, their similarities and their differences. When you live in the same home, day-in, day-out, never leaving to go to work, you start taking it for granted. It’s also nice to have a change of scenery, as between the doctors and my study desk, I don’t really get out too much.

I love having two carers also. If Dad or Mum were suddenly to get sick, the other can fill in. It’s funny, my folks divorced 12 years ago, but the ’custody arrangements’ are just starting to happen now.

Unpacking for the second time is fun. I’ve got more jeans finally, so I don’t have to live in trackies all the time. My parents don’t have to do my laundry so religiously either, as I only flew over with a week’s worth of underwear. And now that spring is just around the corner, I’ve got more suitable attire. Winter woollens on sunny days don’t exactly go hand-in-hand.

My second GP seems to be right on the money. He’s really into diet, supplements, exercise and reducing stress. He ordered a really thorough blood test and nutritionally speaking, I’m in pretty good shape. So that’s good news. He’s also started giving me intravenous Vitamin C therapy once a week. My first shot was at 5pm and I had so much energy, I couldn’t sleep til 1am! He also gave me a lot of homework to do. Because of that, I didn’t have much of a weekend, what with that and unpacking.

It seems every health practitioner I see gives me homework; the chiro, the physio, the OT, the Ayurvedic practitioner, the doctors – TCM and otherwise – and others. It’s great because I learn new things. However, it’s also frustrating in that it sidetracks me from doing my own research on Stage 4 cancer treatments.

It’s been two months now since I got that six-months-to-live diagnosis, and I am moving a lot more slowly on choosing a treatment than I had hoped. Still, what I’ve learned in the meantime has stopped me from rushing into anything foolish. I’m also much more informed and in a better place to make the right decision.

This week is my last week of meeting new doctors and getting yet more advice and more homework. Not only am I over the homework, it’s also getting to the point where too many cooks spoil the broth. So, next week I hope to DO something about those fast-growing liver tumours. Last CT measured the largest at 5cm (compared to 4cm the month before) and that was two months ago. Still, my leg hair grows faster than that. So things can’t be too bad!

Family of Sickos

Two weeks ago everyone in the family was struck down with various ailments and afflictions. No time to sit around feeling sorry for myself. Everyone else was in a much worse state! Sore heads, sore livers, sore lungs, sore shoulders, you name it. Still, at least we were in sync. We were all quarantined in our respective homes at the same time, so at least it was ‘convenient’. For me at least, less so for others.

First up, Dad was hospitalised with a migraine. It was so bad, he couldn’t stop throwing up for five hours straight. After a night in ER, he came home and stayed in bed for three days. At the same time, my grandparents’ bronchial coughs returned, meaning it was too risky for me to see them in my immuno-compromised state.

Needless to say, this delayed my scheduled move-in with my dad and my grandparents by about a week. But, they weren’t the only ones who were crook. The on-and-off pain in my right-side amped up quite considerably. A combination of strained-muscles overcompensating for my weak left-side, PMS cramps, stress of moving, indigestion, constipation and possible liver-tumour pain. This, along with my sore left shoulder, meant I was in no position to pack up and move.

Unfortunately, this put more strain on mum. I was now completely incapable of doing anything. However, Mum’s shoulder was also hurting; an old weak spot that always flared up during times of stress. It had gone from hurting on-and-off for the last two months, to being in constant pain. My brother wasn’t around to ease the burden either; he had his own troubles working 12-hour days, seven days a week, on site in Queensland.

By the weekend, Mum admitted she was about to have a nervous breakdown. It was written all over her face. Luckily, my stress/PMS/liver cramps had eased enough for me to pack. And my dad and grandparents were well enough to come pick up my suitcase, home office, research files and organic food boxes. They then unpacked everything for me and I was able to slide into my second home the following week.

Of course, I’d be lying if I said that week was full of lows. There were a good many highs also. I received some lovely packages and postcards in the mail from the U.S., Melbourne, Europe and Adelaide, as well as a surprise visit from interstate friends. I read some wonderful spiritual books  which filled me with strength and peace. I also read about another cancer treatment called Phenergam – a pharmaceutical approach that I’m not totally into – but it’s always nice to know you’ve got options.

Everyone always says ‘sleepy ole Perth’, but in my neck of the woods, there’s never a dull moment. If there’s anything I’ve learnt from a week of sickies, you just have to roll with the punches. You can’t control everything, and if you try to, you’ll only get angry, stressed and frustrated. (It’s these negative emotions which are stored in the liver.) So, I’m going to try and practice a little equanimity. The good, the bad, the ugly, whatever life throws my way, I’m open to it.

Many ways to say thanks

Since last week’s ‘hunger strike’, the process of recovering my strength has been a slow one, but it’s given me a lot of time for reflection. Sure, to some my situation looks dire, but things could be a lot worse. I could have been given days or weeks to live, instead of six months. The cancer could have also spread to the bone – a chronically painful condition – but it did not. In fact, I am very lucky to be pain-free. My only complaint, apart from ongoing fatigue, is a sore left shoulder. This has actually been the root of my recent back problems, as a result of the operation in Italy six months ago. But I am seeing a physio for that, and it is already much improved.

While I rest and nurse my shoulder, as I cannot start treatment until I am stronger, I realise how lucky I am to have so many friends, family members and even complete strangers helping me. To date, there has been a lot of ego in my writing, and it’s all been very ‘me, me, me’. But it would be dishonest of me to say I’ve been going this cancer journey alone. So, for a change, I’m going to try a little humility. This week’s blog is dedicated to all the wonderful people in my life who have helped me. Without you, I would not be where I am today.

Merci Matt (thank you in French)

First of all, I’d like to thank Matt, my partner for six years; four of which you were also my carer. A cancer diagnosis when you’re single is hard, but you made things so much easier. The physical, emotional, mental and financial support you gave me was absolutely amazing. I could not have made it through the last four years without you, especially as I had no immediate family around me in Melbourne at the time. You looked after me during chemo, radio, after the operation in Milan, and after the treatment in Rome and Perth. You paid for all my expensive organic food for the last year, all our household bills, all our dinner and movie dates, all the petrol for our beach trips and camping trips, as well as some of the hefty Rome and Perth costs. You carried me up our apartment stairs when I was too tired to walk and drove me to endless appointments. You helped me see Europe, Tasmania, Adelaide, Vietnam and Vanuatu, none of which I could have done alone. You bought me beautiful gifts which I still use daily. You proposed to me, and showered me with love. You taught me to snorkel, snowboard and bodyboard better, you introduced me to great music, recipes, film directors and Meredith Music Festival. You taught me to plan something fun every day. You cooked me many yummy vegan dinners. You were my I.T. go-to man. You did all the chores. You did all the fruit and veg shopping. You single-handedly moved my possessions from Cecil Street to Rose Street, and packed everything again for me in recent weeks. You supported me so much and made me laugh often. A paid nurse could not have a done a better job than you. I can never repay you for all the help you’ve given me over the last four years, and ordinary words of gratitude seem inadequate. So, to use primary school parlance, thank you to the power of infinity plus one. I couldn’t have made it this far without you.

Arigato to my immediate family (thank you in Japanese)

Mum, you have been absolutely amazing. Every day I thank my lucky stars that you know so much about yoga, meditation, diet and health, as all your knowledge has helped me greatly. You flew over to Melbourne to look after me after my mastectomy, despite being an unconfident traveller. You helped find the sodium bicarbonate therapy for me and saved me from further chemo. You drove me to treatment and looked after me as I recovered, on top of working six days a week in a very physically demanding job. This superhuman effort has seen you come close to a physical and nervous breakdown, yet still you push on. You paid for so much of my treatment, supplements, clothes, organic food, plus numerous other things, and put yourself into debt many times because of me. For all of this, and more, I thank you from the bottom of my heart. Without you, I would have been lost.

Dad, you have been my rock. Your absolute faith in my ability to recover is something I have come to depend on. Naturally, there have been times when I doubted if I would ever get well, but after a phone call from you, my faith and confidence would be restored. You flew to Melbourne many times to visit me and look after me, when I couldn’t fly to you. You have made the ultimate sacrifice in giving up work for 12 months in Sydney to be my carer in Perth. I have never needed you more and you have certainly delivered in my hour of need. This can’t be easy for you after losing your late wife to the same illness that afflicts me. But still, you are there for me. Thank you.

Neil, my ‘little brother’, who I lean on so much you act more like my older brother. Thank you for the many thousands you have spent on my treatment. Your ability to buy a house has now been severely reduced. This sacrifice has not gone unnoticed. I also thank you for the many days you took off work to look after me in both Perth and Melbourne, for driving me to treatment, for cooking me dinner when Mum was working nights, and for helping put me to bed when I needed it. Your advice and help in reading through the reams of information out there on alternative treatments is much appreciated. You question things that I don’t, but should. Indeed, you are my second brain when mine stops working from sheer tiredness.

Gracias to my grandparents (thank you in Spanish)

To my paternal grandparents, Sheila and Bill, a massive thank you. You have cooked me many delicious vegan meals, paid many thousands towards my treatment and also made me feel so welcome at your house by providing a spare room for me to sleep and meditate in, and live in with you and Dad. Thank you for driving me to treatment, for the phone and email support, and for your company on days when I needed it. Your pace of life is the same as mine, and in some ways it is easier to hang out with you than with people my own age.

To my maternal grandparents, Eng Guan and Wil Mee, thank you for the thousands you have paid towards my treatment. I have loved seeing you during your annual trips to Australia from Singapore. Grandad, I love being able to talk about our respective treatments. And I love our ‘competitions’ to see who weighs more, considering we are both underweight from treatment. We both used to be 45kg, but now that I am 43kg, I think you’re winning. Grandma, you always made me feel so welcome in your house, and have cooked me many beautiful Singaporean delicacies. Thank you also for giving me my first succulent, which started my love affair with all things cacti. I thank the pair of you for your long distance support via phone calls and letters from Singapore.

Tank ‘em very much to my extended family (Pigdin English for thanks as spoken in Vanuatu)

To my great Aunty Edith and great uncle David, thank you for your donation of thousands towards my treatment, the beautiful gifts, the lovely cards, emails and the surprise visit to me in hospital in Melbourne. That really was the highlight of my week-long hospital stay.

To my great Aunty Connie and great uncle Bill, thank you for the many delicious home cooked meals, both at your house and the frozen ones I took away during chemo; for the bags of organic fruit and vegies from your garden; for the Scrabble games, phone calls, emails and more.

To my Aunty Kathryn, Uncle Jerome and family, thank you for arranging to get a second opinion, for accompanying me to the doctor, for visiting me in hospital and offering your support. You treated me to many delicious meals, you gave me many bags of fruit to take home, you invited me to many birthdays and Chinese New Year dinners, introduced me to durien cake and sweet red bean soup desserts and more. All this made me feel part of your family when I had none in Melbourne.

To my Aunty Fran and Uncle John, thank you for setting up the spare room at my grandparents’ house for me. The bedspread, the underlay, the gloves, and the anti-cancer diet book you picked up, they have all helped tremendously.

To my other uncles, aunties, cousins and first cousins once removed, I have loved receiving cards, emails and phone calls from you all. Your lovely words of support and feelings of goodwill en masse, have left me feeling like I have no choice but to get well, with so much collective willpower behind me.

Danke to Matt’s family (thank you in German)

Pauline, Colin, Aimie and Katie, you’ve all been, and continue to be, wonderful to me. Thank you for the many gifts, cards, letters, newspaper articles, dinners, thoughtful emails, help with the foundation, and for making the effort to fly over to Melbourne to see me when I was too weak to travel for pleasure (on top of travelling for treatment). Thank you also to Matt’s English relatives, who accommodated us so well in rural France. And Matt’s extended Adelaide family who shared their delicious Christmas dinner with us.

Terima kasih to my friends (thank you in Malay)

Dear friends, you were like my second family in Melbourne. I could write a paragraph thanking each one of you, but for purely selfish reasons – a sore left shoulder which makes typing uncomfortable, and a lack of energy – I won’t. Ewa and Jonathon, Trish, Ellie, Brooke and Scott, Annika and Shane, Simon and Kirsty, Evita and Mario, Donna and Paul M., Ross B. and Anna, Pip, Paul G. and Jemma, Em and Grant, Liesl and Ant, Diana, John, Jeremy, Helen, Yow and Tamika, Mel T., Fabian, Emma and Michael, Mish W., Mich B., Subha, Jess, Sabina and Steve, Claire and Tom, Tim, Darren and Irish Dave, Adam, Anton, Gabe, Cecila and Geoff, Beatrice and Ostian, Ewan, Pauline and Rob, thank you all. For the lovely gifts, clothes, postcards, camping trips, surf trips, soccer games in the park, New Year’s Eve memories, book recommendations, house-sitting favours, plants, gardening advice, journalism advice, home-made crepes, company in the pool, vegies and herbs from your garden, art work and home made cards, tailoring, massage gift vouchers, blog, website, computer and internet help, international phone calls and emails, freelance work, the Epilady, music CDs, DVDs, for introducing me to meditation groups, the meditation discussions, the classical concerts, plays, dance performances, comedy shows and films, the lunches, the parties – costumed, warehouse, AFL Grand Final themed and otherwise, the crazy nights on the dance-floor at Meccanoid, the dinners, picnics, Frisbee games, cups of tea, for the snowboarding trips, for coming with me to hospital, for the painkiller advice, for the cancer articles, for accommodating me in Molloy Island, Melbourne, Yallingup, Venus Bay, London, Singapore, Hobart, Aire River and the Tasman Peninsula, for the shared experiences on growing up Aussie with Asian heritage, the folio help, your presence at my end-of-chemo, end-of-radio, and end-of-treatment celebratory drinks and more.

Tack to myself and Matt’s mutual friends (thank you in Swedish)

Anita and Ben S., Micah and Sal, Max, Ross A. and Renée, Adrian and Kym, James and Lacy, Jo and Germaine, Ben B. and Merryn, Lachie and Min, Adam and Mandy, Vikki and Scott M., Therese and Tobias, Linda and Brian, Bec and Shannon, Danielle and Anthony, Adelaide Gus, Melbourne Gus, Troy, thank you all. For the wonderful gifts, the crazy-big Easter egg, the beautiful Rittenhouse clothes, for accommodating me in Medina, Jan Juc, Wye River, Vanuatu, Red Hill and more, for the wedding invites, for the party invites, for the dinners, for the lunches, for the BBQs, for the Stockholm tours, for the music CDs, for the gigs, for the home-made wood-fired pizza, for the interpretative dance, the good times and more.

Xie xie to my parents’ friends (thank you in Mandarin)

To the friends of my mum – Michael, Bernice, Cae-lee, Jennifer and others – thank you for your pharmaceutical advice, supplement help, wound-dressing advice and your moxy, the videos, the nose-stud removal advice, the Triumph help, the toxicology research, the organic food contacts, financial contributions to my treatment, cooking offers, kind words, emails and support for both me and my mum. I am not related to you by blood, yet you have often treated me like your own daughter.

To my dad’s friends, some of whom I’ve met (Joy, Rod, Judy, Shauna) and others who I haven’t; thank you for your support. I’ve never had thousands of people praying for me simultaneously before, and with so many people putting in a good word for me with the man upstairs, it will certainly make a difference.

To my grandparents’ friends and church colleagues, thank you for your prayers also. I feel very lucky to have people praying for me in Anglican churches in Singapore and Perth, on top of the Pentecostal support from Dad’s friends at Hillsong in Sydney.

Cám ơn to the complete strangers (thank you in Vietnamese)

Even people I have never met are pitching in. To my mum’s farmer contact, thank you for providing me with beautifully fresh organic fruit and veg at cost price. Organic prices in Perth are ridiculous (much higher than Melbourne) and you have saved us from much financial stress. To the 91-year-old mother of one of my mum’s yoga students, who hand-knitted me a woollen rug, wow, thank you. To the people at the Ticket Infringement Office who waived my tram fines when I was doing chemo, thank you. To the people at Telstra who fixed our home phone in 24 hours when I was doing chemo, thank you. To the people at Centrelink who helped me get the Disability Support Pension, thank you. To the strangers on the street who tap my shoulder to tell me I’ve dropped something, which happens more and more as I tire easily, thank you. Forgive the reference to the over-used quote, but like Blanche Duboir in A Street Car Named Desire, kindness – from strangers, friends and family alike – is something I’ve come to rely on more and more during my ill health.

Shukriya to my teachers (thank you in Hindi)

Thank you to my yoga, meditation and Feldenkrais teachers. You taught me about asanas, pranayama, yoga nidra, and the deeper meaning of yoga, about transcendental meditation, the mindfulness of breathing and loving-kindness meditation, about the Eight Fold Noble Path and five hindrances, about awareness through movement and always being open to the present moment. You imparted your knowledge onto me, so that I might gain a little more.

Go raibh maith agaibh to my medical team (thank you in Irish Gaelic)

To the doctors and other staff at St Vincent’s Hospital in Melbourne, the Peter MacCallum Cancer Centre in Melbourne, The Cancer Support Association of WA, my sodium bicarb therapy doctors in Australia and Europe, my CT, ultrasound and MRI scanners, your help made my cancer experiences much better than they could have been. To my GPs, naturopaths, Traditional Chinese Medicine doctors, Ayurvedic practitioner, chiropractors, osteopath, physiotherapist and others in the allied health sector, thank you all so much. Seeing you for appointments felt more like catch-ups with old friends.

Dziekuje to all the people that encouraged me to write (thank you in Polish)

My high school history teacher, my first creative director at JWT, the people who published my work – Alan, Louise and Paul M. – and the people who didn’t, The Cancer Council Victoria Arts Awards ‘Short Story’ judges, the CLEO editors who responded to my letters as a child, my dad for helping me write, edit and print my own newspaper – The Western Express – in primary school, Neil and Matt for your editorial and proof-reading help, Amanda, Annika and Sabina for your encouragement as fellow writers, all my art directors who proof-read my work, my journalism lecturers at RMIT, the makers of Moleskin journals, and all my other friends and family who egged me on.

Gum xia to everyone else (thank you in Hokkien/Singaporean)

My other teachers, my breast cancer support support groups TYO, YAOBC, BreaCan and BCNA, fellow cancer patients Jo (R.I.P.), Brian, Eng Guan, Jan, Noel, Mel W. and others, my organic food suppliers, my supplement suppliers, every shop assistant that has ever served me, my friends’ friends, my brother’s friends, my brother’s girlfriend and his family, friends I have since lost contact with, my canine friends P.K., Billy (R.I.P.) and Molly, my feline friends Tiny, Bud, Moxy and your bro (R.I.P), my pint-sized friends Leila, Clarke, ‘Small Engine’, Amy and others, my stuffed friends Cinnamon Junior and Spud (both teddybears), all my employers, all my work colleagues, authors of all the books, magazine, newspaper and online pieces I have read – fiction and non-fiction alike, and more.

Makasih for reading this far (thank you in Indonesian)

After 10 years of experience as an advertising copywriter, where words were the tools of my trade, I still cannot express my gratitude adequately. So I’ll evoke an old jingle for Cadbury’s Roses instead. Sure, it’s cheesy, but the underlying message still holds true. Thank you to everyone, for the big gestures and the small ones. Your help, support, words spoken and unspoken, well wishes, and random acts of kindness have made my last 29 years on this planet all the more enjoyable. You gave freely, without expecting anything in return. For that, I am deeply indebted, and eternally grateful. I figure the least I can do is say thanks, cheers, hankyay ouyay etc.

Setbacks

Wow. What a shocker of a week. I put my back out, got a fever, and got stomach cramps so bad I couldn’t eat. I found out I’m losing my brother (also my night-time carer) for a little while. And I also found out that alkaline water is a farce.

It all started last week when mum needed the kitchen table and her study to do her books. This left me with no computer desk, so I worked at a cupboard instead. Two days of a bad posture pinched a nerve. Sleeping on it, stretching it, seeing the chiro, none of these seemed to fix it.

Then a fever hit, leaving me bedridden for three days. Couldn’t eat, couldn’t read, couldn’t watch TV, couldn’t handle bright light, couldn’t meditate, couldn’t walk, couldn’t do anything.

After the fever was gone, my hunger pangs returned. But the pinched nerve in my back, had gotten worse during my feverish spell, and the tentacles of tension had spread to my digestive organs. Whenever I ate anything, my stomach seized up. It was as if someone had made a voodoo doll of me and they were going nuts on my stomach with an icepick.

So I had juices and vegetable broth instead. Amazingly, I didn’t lose any more weight, but I was still constantly hungry – and very grumpy because of it. Also couldn’t concentrate on cancer research as food was all I could think about it. Slowly I progressed to ‘baby food’, that is, stuff I didn’t have to chew. And slowly I regained my strength so that I could even walk a few laps of the backyard.  With my belly full, I was able to concentrate on research again.

All I managed to do is read a few photocopied handouts, but one of those was very interesting. It was an article on alkaline water, saying that it’s not the panacea we’ve been lead to believe. Artificially-alkalised water, that is, water that’s been through an electrolysis process, and has a very unnaturally high pH of say 9, is not good for you. However, water that is only slightly alkaline, and made so because of the alkaline minerals contained in it, is good for you. Not because of the pH, 7.5 is not much different from 7. It’s good for you because the minerals in it are good for you, minerals like magnesium and calcium.

I was panicking for a bit before I read the article, thinking the Prill Beads I bought were a waste of time. Now I realise they’re still okay. Being magnesium oxide beads, they are contain magnesium minerals. So the water that the beads will sit in, will be naturally alkaline and naturally higher in minerals. Phew.

Then I found out my brother is leaving the state for a few weeks for his work. I’ve been relying on his help nearly every night to get me dinner, fill up my thermos and hot water bottle, and get me to bed. Without him, things would be harder. Then, as luck would have it, my dad is now coming for 12 months as of Monday. He’s arranged 12 months leave-without-pay from his job in Sydney, to help me out here in Perth. The timing simply couldn’t have been better. I’m simply swapping one family member for another. Gotta love having a big family to fall back on.

Sure I’ve had some rotten luck this week on the health front. But apparently a fever is a good sign. It means you’re detoxing and you’re healthy, as chronically ill people aren’t supposed to be able to get fevers. The tense back/stomach is just a sign that I need to slow down. So now I’m winding back down to first gear. As for the contradictions on alkaline water, that’s just one of many that I’ve come across in my research. Certainly keeps you on your toes this stuff. Slowly but surely, I’m learning – from books, the internet, and other cancer experts, but mostly from my own mistakes. I’m never using a cupboard for a computer desk ever again.

Firsts

In the last seven days, I’ve achieved many ‘firsts’. Because my diagnosis requires me to make some big life changes, I’ve learnt some new tricks  – online, in the kitchen, in meditation, and emotionally speaking.

I bought some things off eBay for the first time. Nothing very exciting by most people’s standards, but I’m quite excited about these new toys. When they arrive, my Prill Beads will alkalise, energise, cluster and anti-oxidise my filtered water for a fraction of the cost of most water-alkalising units. We’re talking $60 verses $2000+. Because cancer thrives in an acidic environment, I want to alkalise my body as much as possible. And what better way than by drinking three litres of anti-cancer water each day!

I launched my own blog for the first time, namely this site. Although, I must admit, I didn’t actually do anything. My wonderfully kind and talented friend John organised it all, I just wrote the words. I don’t have a FaceBook page, or a mobile, so the chances of me figuring it out on my own were pretty slim. Now I can write to my heart’s content, keep you all updated on my progress, and avoid cluttering up your inboxes (and mine, with 101 email replies).

I sprouted mung beans for the first time. This was pretty cool to watch as, when the thin white roots started to grow, it looked like the beans had worms. Don’t worry, they tasted better than they looked – really fresh and super nutritious. Sure beats paying supermarket prices too.

I abandoned my vegan ways for the first time in 18 months. I’ve been protein deficient and 10 kg underweight for awhile now, but couldn’t figure out where I was going wrong. Then I saw an Ayervedic practitioner, who said I wasn’t digesting legumes well. That explains it. I was eating bucketloads of dahl, but to no avail. So I’m back on organic eggs, wild ocean catch fish (not farmed), organic goat cheese and sheep yoghurt, but only in very small amounts. My diet is still 70% raw foods, with most of my protein coming from plant foods.

I made cream for the first time. Not from dairy, but from raw nuts and seeds. According to Ayurvedic medicine, the human stomach can’t absorb the nutrients from whole nuts and seeds, but if you dry-grind them and rehydrate them, then add enzymes in the form of raw honey, yoghurt and tamarind paste, then they are much easier to digest. I tried some carob-sesame seed cream and it was unbelievably good. Felt like I was eating chocolate icing straight out of the mixing bowl.

I made congee for the first time. This ‘first’ wasn’t as successful as the eBay and sprouting ventures, as we didn’t have all the right ingredients and tried to make-do. Plus we made double the recipe, which meant it took twice as long to cook – 12 hours instead of six, on low heat! Definitely not worth the wait. It was pretty tasteless. But once you added flavouring, it was quite good. Technically, cancer patients shouldn’t eat any grains at all, unless they are very weak, which I am. So I’m allowed a rice congee dinner a couple of times a week, to help me put on weight.

I tried walking meditation for the first time. According to Ayurvedic medicine, this helps dispel rebel chi, or energy. It’s also good for the lymphatic system if you’re too tired to go for a walk around the block – which I often am. There’s quite a few mudras – hand postures – to go with it too. I keep getting mixed up between the Prana, Tiger, Sword and Dragon mudras, but hopefully I’ll get the hang of it soon.

I took my nose stud out for the first (and last) time. This was a bit hair-raising as it took an hour, with two pairs of jewellery pliers. One was to hold the backing inside the nostril, the other was to unscrew the silver ball on the outside. After an hour of unscrewing, we lost patience and snapped the silver ball off. But then the backing wouldn’t slide out. It seems my nostril wall had thickened over seven years of piercing-induced irritation. Could we pull it out without drawing blood from the severed point on top? Initially, no. Then, one final twist and turn, pulled the darn thing, complete with boogers on the end. Hooray! After that ordeal, I’m never, ever, piercing anything again.

I also tried an emotional-cleansing technique for the first time. They say that cancer patients often have a ‘cancer personality’. That is, they are nice and extremely likeable, because they bottle up their emotions without expressing them. Basically, the technique I’m doing is a form of psychotherapy. Considering I’ve never seen a counsellor once during my four years of cancer treatment, it was about time. By practicing this technique three times daily, I aim to be emo-free. Because if emotional issues are contributing to my cancer, I’m going to have to express my feelings in ways other than writing.

I dropped to 42 kg for the first time. This isn’t a first I’m actually proud of. Now I’m 13 kg underweight! That what happens when you try and self-diagnose, diet-wise. Thankfully my Ayurvedic specialist has written me a diet plan to give me more protein, build my blood, balance out my hormones and give me more energy.

As you can see, it’s been a steep learning curve for me over the last couple of weeks. But I know there’ll be many more ‘firsts’ over the ensuing months. I’m just trying to crack the water, diet and juicing thing first. (I’m getting a new juicer that makes raw fruit and vegie soups). Then I can focus on supplements. Then I can focus on treatments. They say change is stressful, and that it’s best to adapt slowly. With my low energy levels, about 35% capacity, I couldn’t go any faster if I tried! Yep, the next six months are going to be challenging. But if it results in me being the first person I know (personally) to cure themselves of cancer, then it’ll have definitely paid off.