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Dear friends, it has been a little time since I put thoughts to virtual pen & paper. There has been a lot of activity within this time which I will tell you about, but firstly a picture of right now.
As I lie in bed exhaustion pervades my body and a feeling of great calm after the storm. I’ve just finished my first cycle of a new chemo. My doctor has told me that from a medical point of view there are no more treatment options and this will only extend my life by a matter of around twelve months.. I have taken this option as the tumors in my liver have been growing ever closer to essential veins and arteries and the chemo may keep them from growing or hopefully shrink them. Needs Must eh!? Regardless I feel like everything is going to turn out as it should. I am learning to let go, trust, and allow my story to unfold. I may die but I may not.. life is unpredictable and surprising. I have hope.
I find that as long as I am making positive steps towards health in a practical sense, that I can keep myself from becoming overwhelmed by my situation. I am eating a plant based diet, using key supplements and I have a schedule which includes lots of ‘grounding’. I regularly partake in incredible bush walks, putting my feet in the wet sand at the beach, making pizzas with my three year old niece, philosophical conversations with my dad and all the best entertainment Sydney has to offer with my partner and friends. I have bought an infrared sauna and trampoline & use resistance bands regularly to maintain strength and fitness. Soon I will be doing yoga again!
From a medical point of view, I have sent tumor samples to a lab in Germany. The lab is called NextGen and they are at the cutting edge of cell analysis. They work in tandem with a clinic in Vienna called Kleef clinic who I am in consultation with and this will hopefully allow me to receive a more targeted treatment. The Kleef Clinic also specialise in hyperthermia which I believe works along the same lines as infrared, heating up and cooling down the cells from their core.
I am also in consultation with MoST trials at The Garvan Institute here in Sydney who undertake clinical trials. They perform molecular screening of cells using a person’s tumor samples and offer targeted therapies that correspond to a persons gene mutations.
Either could present a lifeline to me or open up my knowledge to explore further areas of treatment. I wish I had access to these options a year ago before all of the surgery that did not go according to plan… speaking of which..
I had some more surgery last June. Around the time I found my abdomen becoming more and more swollen over the course of two months until finally I went to the emergency department at the hospital. The doctors ordered a CT scan and discovered a tumor on my left ovary the size of a large grapefruit. It was 13 cm in length and had ruptured. I was told that I was very lucky to have survived the rupture and could have bled to death. Emergency surgery was scheduled at which my surgeon removed both ovaries including the tumor and drained fifteen litres of fluid from my abdomen. I cant tell you how uncomfortable it was to go from my normal body shape, to looking like a nine month pregnant woman in the course of two months! The surgery went very well and I am grateful for having had access to it so quickly! Thank you to my surgical team and the Australian health care system! Apparently this type of tumor is rare and only occurs from the primary tumor in the bowel.
Ok, enough medical stuff! To be honest I am so sick of talking about cancer that I refuse to engage in any conversation about it. I have made a blanket rule amongst family and friends. ‘Don’t ask me because I wont answer you’. Life is waaaaaay too short to spend my time endlessly explaining.. bla bla
Music!! My sweet friend music 😀
My website has received a pimp & I’m so pleased with its style and elegance! Many thanks to Jo’ Paul Mamuyac for all your work. Have a sneaky peak here:
I am spending my time making plans for my new, as yet unreleased album called ‘Middle Child’.
We have settled on the design for the cover and this week I am getting it mastered in Tasmania by Grammy Award Winning mastering engineer William Bowden.
Thank you to everybody that keeps sending me the good vibes and well wishes. I feel so blessed to have such a crew as you, from across the world all gunning for my return to health and supporting my strength, happiness and of course music. We will get there soon enough..
Until then, enjoy the party 😀
All my love Eliza
How could the soul not take flight
When from the glorious Presence
A soft call flows sweet as honey,
And whispers, “Rise up now, come away.”
How could the fish not jump
Immediately from dry land into water,
When the sound of water from the ocean
Of fresh waves springs to his ear?
How could the hawk not fly away,
Back, back, to the wrist of the kind
As soon as he hears the drum
The kings baton hits again and again,
Drumming out the signal of return?
How could the Sufi not start to dance,
Turning on himself, like the atom in the sun of eternity,
So he can leap free of this dying world?
Fly away, fly away, bird, to your native home.
You have leaped free of the cage,
Your wings are flung back in the wind of God.
Leave behind the stagnant and marshy waters,
Hurry, hurry, hurry, O bird, to the source of life!
– Jalal-ud-Din Rumi
Woohoo, these last two months have been great!
I’ve managed to fit in some amazing experiences considering my current chemo schedule of one week on & one week off.
My week on chemo looks something like this:
Two days of fasting, which means only drinking water, whereby I slowly descend into my cave with growing fatigue. On the 3rd day of fasting I drag myself up to the hospital. The nurses access the port on my chest to administer pre-meds including anti-nausea medication and steroids. My mouth feels dry and I start to feel sick then the chemo is hung and slowly dripped into my body for around three hours. I stretch out on my reclining chair, cover myself with my blanket and cover my face with my floppy hat. I doze and avoid communication as the steroids make me feel really weird. I then have a pump attached to my port which will administer more chemo into my body at home. My dad picks me up and takes me home where I go straight to bed and lie there In a vegetative state, like slowly waving sea grass, until the pump starts beeping 24 hours later. This is my signal to start drinking juice. My mum juices fruit for me and, with the sugar waking up my cells and system, I quickly ascend out of my vegetative state, ready to face the world and rejoin the human race. I quickly feel stronger I am taken back to the hospital whereby the pump is removed and I am free! It takes another two to three days of juicing, eating fruit and salad before I can eat normally and then, over the next week, I get stronger and I am able to enjoy my life. My week off chemo allows me to do all the things I enjoy, as well as my chores, only to descend into my chemo cave again the following week. It surely is a gruelling schedule..
This is where I got the inspiration for my combined fasting and chemo method from: https://news.usc.edu/63669/fasting-triggers-stem-cell-regeneration-of-damaged-old-immune-system/
This month on my week off I flew to Melbourne where I met up with dear old friends and saw the one and only Iggy Pop! He has been an icon for me since I was a teen and the concert hall reverberated with explosive excitement as he cavorted around the stage like a 20 year old. What a legend! Here are some snaps and footage from the weekend.
This month has also seen me getting together with a wonderful photographer https://www.jasondeplater.com/ in order to take photos for my new album campaign. We had a great time making use of locations in and around my parents house in the south of Sydney. The new album is a very personal work with much of the inspiration stemming from experiences in childhood, so we thought the locations should reflect that – and, of course, I have had immense inspiration from living in my van.
I continue to amplify my healing using meditation and enjoyed another weekend retreat with the Brahma Kumari in The Blue Mountains north of Sydney. I can’t express my gratitude at the opportunity to unwind in such a beautiful location and spend time with wise and generous people.
I was recently asked to give a talk at a fasting seminar by Greg and Dawn Fitzgerald at http://www.healthforlife.com.au Greg asked me to explain to his audience about my experiences in combining chemo and fasting. The audience of around 100 people cheered as I announced that my most recent CT results showed no sign of the rectal tumour. It seems to have vanished!! Woo hoo!! I GOT THE POWER!!
And of course no blog post would be accomplished without a trip to the hospital.. I’ve had a further infection in my liver from the operation so here I am making use of my time by writing to you all.
love and warmth from the bottom of my ♥️. Chat soon.
Hello & welcome back 🙂
This is the lookout where I go running near to my parents house in Sydney. I’ve been coming here all my life. My infant school is only 10 minutes walk from here through the bush. Isn’t it lush.. ❤ ❤
I hope you are all well and enjoying our beautiful and complicated world. I have been feeling much better over the last couple of months. It has taken me a few chemo cycles to get on top of things but, as you can see, I’m back on track!
I have continued fasting with my chemo & am feeling some good results. The nerve pain from the rectal tumour has almost completely subsided and I am no longer on pain killers and, on my week off chemo, I am bushwalking and running in the National Park. I have started back on my yoga and resistance training and continue with daily meditation. I went to a meditation retreat in the Blue Mountains last weekend. Here are some snaps:
And LOOK! NO DRAINS!!
Unfortunately, as I explained in my last post, I have 4 new tumours in my liver which are inoperable. My surgeon explained that because of my strange liver anatomy due to the surgery there’s no way he can know where the bile ducts are and so would not feel confident in being able to avoid them during surgery. My best option at the moment is to remain on chemo and continue to support my health with good food, relaxation, rest and exercise and of course love & hugs ❤
Buying veggies at the local organic market:
In hospital getting hooked up to chemo today:
I am currently making plans to release my new record. Keep your eyes out for the next post with more exciting details!
Massive love Eliza xx
Hello dear friends,
I am receiving lots of correspondence from you guys asking about how I’m doing so I thought I’d give you a pre Xmas update. Its wonderful to feel so loved ♥️ thanks for all the best wishes, prayers, support and contributions to my fundraiser.
Sometimes the amount of correspondence can be overwhelming as I rest and recover from my op & multiple procedures & manage my current treatment plan. My sister Anna has stepped in to be my PA recently & field questions. Please understand if I can’t reply personally. I am practicing surrendering my anxiety and trusting that everything is as it should be. I hope you guys feel you can do the same.
In my last blog post in September i explained about the liver operation and about how my bile duct had been damaged during surgery. Unfortunately, after five repeat procedures to fix the damage the specialists are still scratching their heads as to how. Apparently the damage is extensive & so plugging up the leaks is complicated. As I write this I am nil by mouth, in a hospital bed. I’ve been in hospital for a month. In fact I’ve been in and out of hospital since the liver op three months ago.
Despite this I feel confident with my team of physicians & the hospital facilities. The op was always going to be tricky due to the location of one of the tumours & I feel grateful that my surgeon agreed to do it.
The problem with my situation is that, in order to keep the cancer from growing & spreading, I should be on chemo. Unfortunately this has not been ideal because of the risk of infection associated with having an external drain for the bile leak from the liver complications. During these three months of repeat procedures and waiting the cancer has progressed & there are two new tumours in my liver. My rectal tumour has also grown & is causing neuropathic pain down the back of my legs. I can only walk for a couple of minutes before needing to sit down because of the nerve pain. I am actually looking forward to getting back on chemo as last time it shrunk the tumour & sorted out the nerve pain very quickly.
Great News! Finally!!
My doctor dropped by a couple of days ago & my wish has been granted! Chemo starts today. The bile leak has not been resolved but the specialists have reached a compromise whereby I can have a more gentle chemo whilst being monitored in hospital. I have fasted for the last two days, and will continue fasting for the duration of the chemo. Looks like Xmas is going to be spent fasting and in hospital this year.
Regardless, I am still in good spirits, surrounded by loving family and friends & I am looking forward to better times ahead.
I am excited to say that I have been offered a position to study a bachelor of music/composition next year at The Sydney Conservatorium of Music. The degree focuses on avant-garde classical music which I feel will expand my music practice wonderfully!
Here’s a selection of recent snaps:
Merry Xmas everybody! I wish you much joy, warmth & merriment. I’ll update you again soon.
I have no more tumours in my liver! Isn’t that amazing?!? I’m so happy!!
I arrived home last night after spending a few weeks in hospital. I have had several procedures, starting with a liver resection and ablation. My surgeon opened up my abdomen from my sternum down to my belly button and horizontally outwards to my right creating a neat incision. He was then able to lift out my liver and, using his scalpel, remove segment 1V containing a smallish but growing tumour located towards the centre close to blood vessels and the main bile duct. This tumour was removed as a matter of urgency as it grew ever closer to these arteries and bile ducts and became life threatening. After the ‘resection’ there were two other tumours burnt out using a technique called ablation. Ablation is performed by a radiologist who locates the tumours using ultrasound and inserts a burning hot probe into them, burning all visible cancer cells. I spoke to the radiologist afterwards and he said that both tumours had been ‘well ablated’. Good news! I awoke in the intensive care unit with a tube down my throat. I couldn’t breathe properly or speak. I pleaded with the doctors to remove the tube but they were concerned that I had sleep apnea and would not. The next 10 hours were the most unpleasant I’ve ever experienced as I struggled to breathe, my lungs filled up with fluid and they occasionally poked a tube down my throat to suck out the fluid, making me gag and causing excruciating pain at my operation sight. I wrote several pages pleading with them:
The staff arrived in the morning at 8am and removed the tube, shaking their heads at the unnecessary traumatic experience I’d had. They gave me a bed bath with lavender oil and I started to feel human again:
I returned home after a week in hospital but was taken back by ambulance with a high temperature. Subsequent tests showed that the main bile duct had been damaged during surgery and I had bile pooling inside my liver and an infection. I was put on IV antibiotics which cleared up the infection and the fever and a new drain was inserted through my abdomen into my liver (under local anaesthetic only and without pain killers) As the local anaesthetic wore off the pain became unbearable as I waited for the doctors to give me some pain relief. It has taken me another week to feel more comfortable with the drain and be able to breathe properly. I have since had another procedure whereby a camera was inserted down my throat and up through my small bowel inserting a stent into the damaged bile duct in the hope that it may patch the hole and provide an opportunity for it to heal. It seems to be working and the fluid output is going down slowly but surely. Lets cross fingers that it has resolved the issue! I need to repeat the procedure this coming Tuesday to remove a stent that they have placed in the pancreas.
Apart from these challenges I have had some lovely experiences in the hospital. I got some beautiful flowers, received friends and, on occasion, took a wheelchair into the sunshine and the fresh air. I have been so impressed with the professionalism of the nursing staff. Thank you everybody for your kindness and for looking after me so well.
The next step, when I have recovered more from the operation, is to embark on three months of chemo.
I am accepting contributions for my ongoing treatment costs on my fundraiser page. Massive thank you to everybody who has already contributed
In the mean time I am felling better every day. I’ll keep you posted..
Wishing you warmth and happiness.