Tag: cancer

The birth of my fourth decade

I’ve been thinking about my thirties. About how they started, and how they’re about to end. Ten years ago at my thirtieth birthday party, I was bloated from massive doses of steroids I’d had to have earlier in the year due to a serious respiratory virus. I was puffy faced and swollen, and going into my third decade, I was fat (for me, anyway. Or at least my face looked like a puffer fish).

For what it’s worth, I haven’t exactly loved my thirties. They started off on a bad note when I had to be treated for the early stages of vulvar cancer. My oncology team and I tried  to keep the cancer at bay with a topical chemotherapy, which would leave my vagina looking like I’d sat on a cheese grater and ridden it like a champ. I know – so glam.

In November 2007, I underwent surgery so the cancer didn’t travel into my lymph nodes and metastasise, which would have afforded me protracted suffering and death, and while the surgery saved my life, it left me teetering on the brink of death. I had a poo bag and a broken vagina pieced together with skin grafts, and I honestly don’t know how I got through three months of non-stop shit explosions and blistered skin from a stoma that refused to stick, but I did (thanks for all the late night laundry, Mum).

When I was 31, I got myself into a destructive relationship, and my boundaries with men were still pretty woeful when in my mid-thirties, a person I was seeing got into a fight and called me for help. I cleaned and dressed his wounds, after which he pissed in my bed. The next morning, he helped me move the mattress out onto my balcony, but left before I had to bring it in myself. I was on home IV’s at the time, and nearly popped my CV line out of my jugular.

My response was an almost ethereal calm, simply because not much fazes me. I thought, ‘hey, that’s ok – mattresses can be replaced.’ WHAT THE FUCKING FUCK, CARLY?! My response now would be entirely different, and for all intents and purposes, he should have bought me a new mattress (he didn’t). Now, I’d kick him to the kerb without a second thought, block his number, and never connect with him again. It was only then that a close friend began to teach me about boundaries, self-worth and self-respect. This friend has also helped me plug in to my intuition – something I’d struggled to get in tune with before. There was other stuff. My sister’s divorce and its ongoing aftermath has been confounding in its cruelty and acrimony.

All in all, I’ve learned my most powerful and empowering lessons in my third decade. Yes, my thirties saw its share of death, but through this came unexpected gifts. I discovered my true purpose and passion with wanting to care and advocate for the dying. I went to my first Spiritual Care Australia conference which opened up the world of hospital chaplaincy (I call it spiritual care), and in 2015, I graduated from my first unit of Clinical Pastoral Education. My CPE training was one of the most rewarding learning experiences of my life, and I’m now working at the city’s biggest trauma centre as their only non-religious spiritual carer – such a privilege and so incredibly humbling (if you ever want a lesson in humility, go and sit with people at the bedside, and listen). In 2016, I was asked to be on the organising committee for the 2017 Spiritual Care Australia conference, and I’ve been made to feel welcome by all faith groups.

In 2014, I was invited to speak at TEDx Brisbane where I  shared my story and my hopes for how we can do death differently and how we must do death differently. After seventeen years, I discovered who my donor is/was after realising that I needed to know about her, even though I’ve had information about her since just after my transplant.

I have been lucky enough to work and learn with the best people in the death care industry, I did my first Vipassana, let go of my survivors guilt, and got clean. I’ve been clean for three years, and honestly can’t think of anything worse than taking opiates again. In fact, you’d have to render me unconscious to get any narcotic into my system.

On Christmas Eve, I was accepted into the Karuna Hospice Palliative Care Support Volunteer training program – an intensive I’ve been dreaming of doing for many years. It’s as though the world is opening up for me, and for that I sit in a space of deep gratitude. Transplanniversaries came and went, but never without much introspection and indebtedness.

I discovered what I needed to keep and what I needed to let go. I realised that just because I have a history with a person, that it doesn’t mean I have a present or a future with them. I know what ingredients help make me my best self, and I’m clear in my purpose. I’m settled, happy, and in love with giving zero fucks about what anyone may or may not think of me.

So why is that? It’s because I’m done with not being and living as my authentic, no-bullshit self. I was done with that a time ago, but as 2016 and this decade comes to a close, having lived with so much uncertainty, I am certain of one thing – life is beautiful, and all that matters in the end is the love you share and the love you get.

My wish for you, going into 2017, is that you embrace the simple things, because these too have been my greatest lessons. Go and hug trees, howl at the moon naked, walk in the rain (naked again), take less and give more, love yourself, treat others with kindness and suspend your judgment. Own your shit, be accountable, tread lightly upon the earth, and as my dear friend Andy who died last month waiting for a transplant would say, ‘don’t be a cunt’. Life is short – paint it your shade of spectacular.

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Eight years in remission – viva la vulva!

I never thought I would see another eight years. Really, I didn’t. After my cancer surgery in 2007, my oncologist was certain that more cancer would grow, that the surgery I had wouldn’t hold, and that I’d die. Thankfully that hasn’t happened, and today marks eight years since I underwent the surgery to save my life. The icing on the proverbial cake is that I’ve had no more cancer in my vulva (there’s that word again!). Viva la vulva, I say.

I find it quite incredible that in my immuno-compromised body, that I am still alive. And you know what? After what I went through with that surgery, I can hold my head high and say that I deserve it. If I never have to have life saving surgery ever again, it won’t be too soon.

Below are a couple of photos – the first being just before I started throwing massive seizures and went into a coma. Now, don’t I look fucking miserable here? Well, of course I was. I had a broken vagina which is enough to sink any woman. As well as my broken bits, I had skin grafts that possibly wouldn’t take, and a poo bag that had the tendency to explode several times a day. I clearly have a bowel obstruction in this photo – something that wasn’t picked up until too late – and by the next day, my family didn’t know if I was going to die or live out the rest of my days in a nursing home.

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As always, my sister was with me. Here she is standing over me in ICU, and just like when I had my transplant, my family played my favourite music, but even on the suggestion of my friend Kate, not even Axl Rose could rouse me out of this fix. Music seemed to be the only thing that would soothe me after both surgeries, especially during the long nights where everything seemed to go wrong. Think collapsed lungs, bleeding, broken beds (and not in a fun way), and uncontrollable pain. I am so grateful for the kindness of the nurses on the broken vagina ward.

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So what am I going to do to celebrate today? I’m going to embrace the ordinariness of life and start my Christmas baking. I did two practice runs last weekend with my very first fruitcakes and they were a hit. I ate the last slice last night with a cup of sweet, milky tea, but to tell you the truth, I gave most of it away to my folks. My old man is quite the human garbage disposal, and that’s where I get my deadly sweet tooth from. Today I’ll get all of my dried and glacé fruit and soak it in rum for the next month, then I’ll bake the cakes and ‘feed’ them with rum until my family can enjoy a slice or three on Christmas day with the requisite custard.

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I’ve never been much of a baker or decorator, so I was thrilled with how these turned out.

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And so that is how I will celebrate today. Eight years of so many experiences that have shaped me – and I suppose ‘baked’ me to a degree. And that’s ok, otherwise I wouldn’t be at this point in my life. I can honestly say that the view from here is fucking spectacular, thanks to my family, friends, doctors and of course, the choices I’ve made to get me here. Viva la vulva!

I am an addict

I posted a rant on my chasing away salt water page earlier today, much of which I’ve included in this piece. It involves the Cystic Fibrosis community – my community, if you will – and my burning question was this: when will people start taking responsibility for their lives? Why are there GoFundMe pages being created to ask for money so that CF’ers can reap the rewards for doing nothing? You are NOT a special fucking snowflake as the late, great Stella Young would say. You can listen to her fuck off amazing TEDx talk here. Her inspiration porn and snowflake theory applies to the entire illness and disability community. No one is exempt #sorrynotsorry.

I see CF’ers who are diabetic with failing kidneys poisoning their bodies by drinking Coke and eating crap for breakfast, lunch and dinner; pumping themselves full of insulin because they’re ‘addicted to sugar’. Trust me – there are worse things to be addicted to and this is where I share my ultimate shame story for the very first time.

MY NAME IS CARLY-JAY AND I AM AN ADDICT.

As some of you may know, I’ve been addicted to opiates over the years due to the pitfalls of CF, transplant and cancer – morphine, pethidine, oxycontin and more. I mentioned my on/off struggle with being addicted to drugs in my TEDx talk, but when I gave that talk, I had been keeping a far deeper secret I’ve not had the courage to write about until now because of the deep shame that feels like burning kindling in my marrow. Seriously – that’s how it feels. 

In fact, the reason I had to use a lectern during my TEDx talk was because my brain hadn’t recovered from the damage done from the previous two years of drug (ab)use and as such, I felt like an abject failure. I could not learn my eighteen minute speech in the three weeks I had been allotted, and for me this was mortifying. But once I walked out on that stage, I was fine; nerves a distant memory. I owe everlasting gratitude to the very empathetic Lisa Watts from TEDx Brisbane after crying my way through a conversation as to why my brain wouldn’t suck my speech up like the sponge it had once been.

I am well aware that I have paid my donor and her family the ultimate disrespect by getting addicted to drugs. And not just any drugs – schedule 8 controlled drugs as they’re called in Australia. I thought that because I was on prescription drugs and I wasn’t drug seeking on the streets that I was safe; that I wasn’t a drug addict. Except I was.

In fact, I remember my first hit of Omnopon in 1994 after I’d had surgery for endometriosis. It just so happens that the first love of my life was the one who injected me (in a hospital setting, of course), and that’s when the first flush of addiction bloomed. I unknowingly had sent myself to sea in a sinking ship. Marcello said I’d feel a little giddy, but the accompanying rush of ecstasy that washed over me as I sunk into my bed, yet rising into the air at the same time in one beautiful, sweeping motion is something I’ve never forgotten. In 1996, I became addicted to IV pethidine after complications with surgery, needing more and more every day until my doctors brought down my dose enough for me to get home. Funnily enough, I didn’t miss it and got on with life.

It was following my transplant when the seeds of addiction really came alive. My bones were honeycombed from osteoporosis and as such would not heal. My sternum refused to knit back together, and every time I rolled over in bed my chest bones would concertina and I would hear and feel them pop. Up until I had my cancer surgery in 2007, I had never experienced such pain as when my epidural was removed on day five post-transplant. It was as though someone had poured fuel all over my chest and set it alight. When I was discharged, I’d drink my morphine straight out of the bottle like an alcoholic would with whiskey.

After six months, my transplant doctor Scott Bell and my surgeon, Robert Tam sat me down and told me I was addicted to morphine. The first thing I felt was relief, and my first thought was, ‘no shit, Sherlock’. After agreeing to their suggested two week inpatient detox, I went home, poured my morphine down the sink and went cold turkey. I pissed the bed (and the rest), vomited, sweated like a beast in Hades, and felt like I’d been thrown from my skin. When you’re coming down, you get to a point where you feel like you’re climbing out of your own skin and so you actually try. And then, when you’re back in the world of the living, you emerge like a calf being born. Replete with an inevitably messy start, you find your feet, feeling fragile and a little lost. But as the days go on, you get stronger and a little more fearless. On day four, I began to feel human, and for now at least, the ride was over. I had my life back.

My addiction was most out of control when I wasn’t living with my parents. When you have nobody to be accountable to, you can just shoot up and flake out. The second you see that flash of blood in the syringe, you know you’re about to enter heaven, yet you go nowhere. It is like taking the deepest of breaths. That flash of red, so ironically the same colour as the flower it comes from. You feel totally dissociated and disconnected from everything and everyone, but when you’re high you’re hyper-sensitive to other people’s emotions. You laugh and you cry with people and then suddenly, the high has gone and you’re not sure where to go or what to do apart from wanting another hit, although for a few years I went without pain killers altogether. Why? Because I can.

But then 2003 came reeling into me, and sometimes restless rivers run deep. By 2004 I was back in the throes of addiction and I did ridiculous things like inject pethidine and morphine directly into my port-a-cath. That shit was going straight to my heart. Colour me surprised, but I’m lucky that I didn’t stop breathing. Because I’d built up such a tolerance to these kinds of drugs over the years, I reason that that is the only way I’ve survived such reckless behaviour. I have punished myself enough now knowing that I risked my life every day.

2004 came and went and I stayed clean until I was diagnosed with my pre-cancer on my vulva. Yes, my vulva. In order to get the pre-cancer under control, I had to use a drug called Efudix – a topical chemotherapy ointment which is supposed to burn the cancer away. I was on a potent mix of narcotics, but for good reason. My gynaecological oncologist (broken cunt doctor) couldn’t quite believe the doses I could tolerate, but when you have strips of skin hanging off and peeling away from your vulva, you need ALL THE DRUGS.

When Efudix was off the menu as a treatment, I underwent a radical vulvectomy which very nearly killed me. For pain relief, I had an epidural and was on ketamine and morphine, yet the pain team still could not get my pain under control. As I speak about in my TEDx talk, my Dad arrived at the hospital one morning to find me drooling like a vegetable and essentially non-responsive. Not long after I began have tonic clonic (grand mal) seizures and was rushed to ICU. If it were not for my father calling my lung transplant consultant Peter Hopkins, I’d be dead.

Pete told the doctors to rip me off all of the pain medication, which they did. As a result, I went into acute narcotic withdrawal where my body would thrash around the bed – and despite being in a coma – my system was fighting that sudden absence of opiates. To cut a long story short, I survived, had to learn to walk, talk, feed myself and had to deal with a poo bag. I was drug free and wasn’t even taking paracetamol, despite having a few ‘oxies’ left over from before my surgery which I made quick work of in 2008 when I was in the relationship from hell. The ex in question also happened to have a penchant for drugs and ran me dry, which was fine. I didn’t want to be on anything and was happily clean.

In 2013, I’d been back on narcotics for maybe two years. I was going nowhere fast and like any addict, I was always needing more. I would take drugs when I was happy, I would take them when I was sad and I would take them when I was indifferent. I doctor shopped, lied, and had no one else to blame except myself.

There were times when I was using where I had taken far too much because I hadn’t hit that high fast enough. My breathing would become laboured and just to get some perspective, after my cancer surgery I recall having such massive quantities of ketamine, morphine and other drugs that I would often get down to four to six breaths a minute. I remember waking up with a group of doctors and nurses surrounding my bed saying that I’d had ‘a little trouble with my breathing’. They had in fact pulled me back from the brink with a drug called Narcan which is what you see paramedics using on television with people who have needles stuck in their arms (or in Pulp Fiction. That big breath that Uma takes once she’s stabbed through the chest? Bullshit. Sorry to ruin the illusion).

In 2013, I was shaking the hand of death far too often, yet I still persevered with taking as many drugs as I could. I was in Barcaldine when I realised I was in trouble. I was in the middle of nowhere and only had a minute supply of drugs left for the duration of my stay, so I did what any self-serving addict would do and began rationing them out in the hope that my restless legs, vomiting and night sweats would settle down long enough for me to get back to Brisbane to replenish my supply . One of my closest friends and her husband spent some time at my friend’s cattle station with me and while I knew that Nic knew, I said nothing because I wasn’t ready to get clean and as is typical, I refused to ask for help. Nic said later she knew I was in the throes of addiction, but there was nothing she could do until I was ready. I had to be ready, but I needed help like it was yesterday.

A few weeks after I returned to Brisbane, I was having a very casual conversation with my Mum and for some reason I broke down. She asked what was wrong and while she was in the spices section of Coles, I told her that I was addicted again. She lovingly said that she would get me help and that we would get through it. Why we? Because my family and I are a formidable team – my Mum, my Dad, and my sister always offer me a soft place to land.

This confessional does not make me brave. I am not inspiring. I am not that snowflake that so many people wish to be or use as as excuse to be an asshole. I am human and humans are not infallible. I had to earn back the trust and respect of my family which is what hurt the most. My Dad could not believe that I had gambled so thoughtlessly with my life. He said he was disappointed – possibly the most most biting thing anyone has ever said to me. He wasn’t upset, he was disappointed. I cried, said I was sorry, but that wasn’t enough. I am still so, so sorry and am in tears as I write this. You should never have to earn back the trust of your family, but that was something I was so resolute about doing. My sister was incredibly supportive as were the literal handful of friends I told. They let me get on with my recovery, but were there to back me and I can’t thank them enough.

I’ve been clean for two years and while I’ve always maintained I’ve been compliant with my treatment (taking medication, regular check ups, eating well, exercise) I did the unthinkable – I gambled with my life that I’ve nearly lost so many times through no fault of my own, yet here I was throwing it away with every pill I swallowed and every (clean, single use) needle I was shoving into my skin. I only ever took drugs when I was alone.

In regards to the illness and disability community, I see people who are non-compliant with treatment and medication after transplant and other life preserving procedures. Over the years, I’ve seen transplant recipients start smoking again after their lives have been saved and hundreds of thousands of dollars have been spent to keep them alive. Just like my drug addiction, how disrespectful is that to your donor, their family and your medical team? The thing is, I got help because I asked for it. I went to an addiction specialist who put me on opiate antagonist treatment and I’m happy to say that I’m going to be off it for good before Christmas. I saw a great therapist, but after about three sessions my psychologist said I was too well adjusted to keep seeing him. We both believed that I was in a safe space and would not use again. And I haven’t. The only narcotics I’ve had have been when I’ve needed a central line placed in my jugular for IV antibiotics (they can sting and bruise a little like a motherfucker).

So what brought on this confession? This morning as I wrote about Cystic Fibrosis and suffering in general not being a competition, and about the ‘hierarchy of illness’ that has been created over the years, I sensed that I needed to own my shit because I was telling other people to do just that. You have a choice. It’s called being pro-active instead of being a victim. Whether you’ve had a hard life or not, there are many who have had it far tougher than you, but again – it’s not a competition of who is sicker than who, who is suffering more, or who is the most hard done by. If you can get out of your own head and ego, you’ll see that we are surrounded by suffering and we (you) have it relatively easy when it comes to illness. We live in a first world country, have world class medical services and welfare. For fuck’s sake, our transplants are FREE. In the United States, you have to basically crowd fund and hope for the best if your health takes a turn for the worse.

Having an illness or a disability doesn’t entitle you to have a Facebook or GoFundMe page where you’re essentially begging for money, ‘stuff’ and ‘experiences’ like hot laps and swimming with dolphins being given to you for just existing (and shame on you for going to Seaworld. Animals in captivity is cruel. Go and watch Blackfish).

So you – yeah you. Do you actually believe that the world owes you? Because it doesn’t. Life owes you nothing. But you owe life EVERYTHING, so stop being a self-entitled twat. Get a job, get your shit together, get an education or better your skills, get help if you need it like I did (all you have to do is ask), stop the victim blaming, lose the ego and get real. Be accountable and set a good example.

Drugs are a scourge and I know that I will never use again. But how can I be certain? The proof is in the pudding. I’ve achieved so much since being clean. I’ve found my purpose and I am bloody good at what I do. I’ve worked for the first time in years, spoken at TEDx and other events, my writing has been published widely, I’ve been churning out my memoir, poetry and I’m close to having a first draft of a novel I am thrilled with. I’ve made new and lasting friendships with my involvement in palliative care, my death midwifery and the death cafes I host, I started a Masters degree in Spiritual Care and have done my first unit of Clinical Pastoral Education so I could become a secular hospital chaplain. Maybe we’re all wounded healers to some degree.

So many opportunities have presented themselves and I’ve been in the right head space to take full advantage of that. Most importantly, I’ve had no cravings for drugs over the last two years because life is enough. I am enough. To be able to write and say that to people is something I’m proud of. Again, it is not so much that I am brave or inspiring. I’m just a human who wants to be a good person – to love and be there for my family and friends, to write like a motherfucker, to care for the sick and dying and to love and be loved. Life really can be that beautifully simple.


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Why I forgive Belle Gibson

Last night saw unprecedented measures of anger, disbelief and absolute exasperation surrounding the 60 Minutes interview with disgraced ‘wellness’ blogger and creator of The Whole Pantry empire, Belle Gibson. For once, I went against my better judgment and watched the interview and as a cancer survivor, I have a few things to say.

Firstly, I forgive you, Belle. I forgive your lies, your shameless attention seeking, your money-grubbing, your terrible attempts at plagiarism, the damage you have caused to countless cancer sufferers and survivors, and the rest.

Over the years, countless people have recoiled at my capacity to forgive, and I’m ok with that. That is their journey and this is mine. But trust me – I’ve had to dig deep within my soul to get to a place where I can give amnesty to a person who has hurt me or the people I love.

Forgiveness can be an acutely terrifying and seemingly impossible process, but I’ve found that it’s requisite to heal and move on. Forgiveness is about you, not the other person. It’s about recognising a person’s humanness. It’s about accepting that vulnerability is a package deal with being human. The only alternative to forgiveness is anger and resentment, and one must forgive in order to strengthen ones spirit. It’s taken some bloody hard work, but it’s been worth it. But there’s one very important aspect of forgiveness that people often consign to the back of their mind, so let me set the record straight: forgiveness does not mean that you have to forget, nor does it mean that you cannot maintain the rage.

As someone who has actually had cancer over a sustained period, just like Belle has claimed to have done, I came away from the interview feeling a little despondent. But after reading the litany of comments following the  dialogue, I peeled away with fury. When people paint Belle Gibson as being ‘mentally ill’, as a woman who has suffered with depression (I use the word ‘suffered’, because I truly did), I find the branding of Belle Gibson as being mentally ill really bloody insulting.

That people are throwing around a diagnosis of Münchausen syndrome (otherwise known as Factitious disorder) has riled me no end. It has rattled my cage of compassion because after hearing her trying (and she tried really hard) to rationalise her catalogue of lies, including her stories of having heart surgery, dying on the operating table (that one actually happened to me), having multiple strokes and an inventory of other self-perpetuated medical myths; lying about her age, telling Tara Brown she has two birth certificates and has had four name changes and other fictitious ammunition, there was a moment when I actually burst out laughing. If I hadn’t have laughed, I would have cried. As Brown said, that’s a hell of a lot of bad luck for such a young girl.

But then I thought about my own (real and lived) catalogue of illness, or as I call it, dis-ease. Cystic Fibrosis, double lung transplant recipient, diabetes, osteoporosis, depression, addiction, cancer, dozens of surgeries and more. Now considering I’m writing a book about my life, am I going to be offended should someone ask for direct proof in the form of my medical records? Well, thanks to the virtue of Belle Gibson and other charlatans selling their own brand of snake oil, I would expect a publisher or agent to ask for proof about my medical conditions. Is that right? No. Is it now necessary? Yes. Which appalls me.

Belle Gibson claims she had a traumatic childhood which her mother vehemently denied. Here’s the thing – people survive fucked up childhoods all the time. My own childhood was punctuated by dying and death where I lived in constant fear that my dis-ease would kill me. With C.F having killed over seventy of my friends, through the greatest of odds, I have survived. I’m a compassionate human being who wants to help others, and I’ve never felt a desire to embellish my own suffering, because the thought simply never occurred to me, and to be honest, my own suffering was enough.

People survive the unthinkable – genocide, rape, torture, violent relationships – and still, they grow into exceptional human beings with passion and purpose, determined to create change in the world. They don’t feel the need to weave a tapestry of corpulent mistruths for financial gain and communal pity. But Belle Gibson did. The thing is, I picked her as being a charlatan when a friend told me about her book and app last year. For me, her story just didn’t add up. I’ve known people with brain cancer and in most cases, they do not look the picture of health, whereas Belle always looked remarkably well and fresh faced. I also knew that it was next to impossible for brain cancer to spread to your liver, spleen, uterus and blood, and for a woman who suffered a forty minute seizure at her son’s birthday party, after which she did not go to hospital (instead going overseas not long after), my hackles went haywire. But who was I to question Australia’s wellness sweetheart? It was going to be a waiting game until Richard Gulliatt from The Australian cast serious doubts over her cancer claims after donations promised by Gibson to various charities hadn’t materialised.

Gibson manipulated the public with intent and great skill over a sustained period of time. She cultivated an empire that would ultimately be her undoing – one of lies and gross mistruths about her supposed battle with brain cancer and how she cured it by eating whole foods and engaging in alternate therapies such as coffee enemas. As she created this false empire, she made a great deal of money and inadvertently (or perhaps knowingly), lured people who actually had cancer away from evidence-based medicine, instead drawing them into her world of fantasy-based medicine and therefore death.

Perhaps she has complicity lead people to their deaths, just as Jess Ainscough did. We may never know. Ainscough touted herself as being the ‘wellness warrior’, also creating an  empire based on woo (fantasy-based medicine), and while I do not wish to speak ill of the dead, her belief in woo, such as Gerson therapy (which ultimately killed her mother who had a treatable form of breast cancer), ultimately cost Jess her life. Aincough’s fanbase will debate otherwise, but the truth is, this ‘medicine’ has no basis in reality or science. What’s just as disconcerting, is that Belle Gibson attended her funeral as a fellow ‘wellness warrior’. She mourned with Jess’s family. How must they feel?

Healthy eating and Gerson therapy was not going to cure my vulval cancer. Only surgery and the option of chemotherapy was going to save my life. Thankfully, I had world class surgeons who managed to remove all the cancer, so I didn’t need chemotherapy. By excising (cutting) all the skin away from my clitoris to my rectum, extensive skin grafting from my left thigh, as well as redirecting my bowel into an ileostomy (a poo bag), I survived. But only just. The aftermath of the surgery very nearly killed me and my family were told that I may end up in a vegetative state. That aside, I survived to see my 31st birthday. I am now 38, and had I not had the surgery, I would be long dead.

Gibson has fabricated her empire of lies for the sole purpose of gaining attention and garnering money to live an unsustainable lifestyle that she would not have enjoyed unless she had duped people into buying her ‘lifestyle’ app ‘The Whole Pantry’, followed by the publishing deal with Penguin and finally, her app appearing on the Apple watch. For me, this is unmitigated fraud masquerading as mental illness. Belle claims that she ‘cured’ her brain cancer with whole foods and alternative therapies, except that she didn’t. We all now know that she never had cancer, or any other of the medical conditions she lied about on skateboard forums and what not.

I have to ask – at what point are we not responsible for our actions? Many people would say when we no longer have the mental capacity to make safe decisions for ourselves. But does this absolve us of moral and ethical responsibility? It’s a very grey area. Belle has undoubtably harmed others by offering false promises and platitudes to the point where evidence-based therapies are called into question and oncologists are made to look like big Pharma pariahs for their trouble. The thing is, doctors take an oath when they begin practicing medicine, and we can only hope they honour it (primum non nocere, or ‘first, do no harm’). 

While Belle claims to have ‘lost everything’, I remember thinking the same thing after my cancer surgery, but I soon realised that I had come away with my life. If only Belle would come to the same realisation and tell the truth.

I do not know what will become of Belle Gibson. There is a part of me that understands the witch hunt, but I also feel an immense sense of compassion for her. Or perhaps my compassion is just misguided pity. Compassion and pity may be poles apart, but today both burn deep inside me. Does she deserve to be punished? I believe so. There are still so many unanswered questions, and after another soul rummage, I know that we may never know the truth, because Belle certainly doesn’t. Or does she? In a messy little corner of my mind, I can’t help but wonder how many people Belle has literally made sick. And what of the voiceless who can no longer speak their truth because they have died after believing her misguided and inexpert ‘advice’? People may be willing to forgive. Let us ensure they never forget.

Where was this when I needed it?

Today I found the most amazing resource for people – young people – who have ileostomies and stomas (poo bags). You can read about my experience with my poo bag HERE. Ever so glamorous, though it was really the most harrowing time of my life and I physically and spiritually felt a part of myself disappear. A part of my womanhood and a massive chunk of my dignity where I lost myself. I guess that happens when your vagina is peeled like a grape, you have to have your bowel redirected in the form of a poo bag and you nearly die.

There is a lovely and courageous young woman called Talya blogging over at Feeling Ostomistic, and here are her top ten things people don’t tell you when you have an ostomy. The only point of difference is that I still have a normal belly button – I just have a gnarly scar next to it.

If only this support was around when I had my ileostomy, then I really believe it would have made my whole experience a little easier to bear knowing there was another young woman out there who was struggling just as I was. Knowing I wasn’t alone. Because I truly felt it. Talya is beautiful, brave, boisterous and I hope she keeps blogging forever. The world needs her.

Topography

She sits by the windowsill –

window seat holding her shearing form.

Fingers of sunlight splay across her back

and she smells tuberose on the morning air

as her body is swallowed by the full throat of summer.

 

Shifting her form to a gentle lean,

she spies a framework of desire

where the language of hummingbirds between webs of light

moves faster than the bay of the moon.

 

She swings her face towards the floor,

unknotting her legs from unfeeling.

Solemn of face and swollen of neck,

she looks to her breast – just the one.

 

A cleave in her chest – a gift.

The skin on the other like corrugated tissue paper –

the markings like an embroidery of truth

where she tells herself that it is just topography

and that she is safe.

Being woken at the gates of heaven

Candy in a bag –

recollections of a need

when my mind was an unswept room,

my body a husk, full of holes so thick

I thought I would leak.


Needles in my bedside drawer,

ampoules ready to be

snapped off at the yellow line –

that crisp and thrilling pop.


No greater satisfaction,

nor ever surpassed.

Then the plunge of a needle

into flesh, digging down into muscle.


The other night, my body stockpiled opiates.

Nurses artfully depressed a syringe of Narcan

to bail me out of a deep unbreathing.

Two breaths a minute – my lazy lungs.

Nurses in a U shape around my bed –

‘you’re having some trouble breathing, love.’

Hell, I was between worlds dreaming about

tangerines and the biting aroma

of vodka, parcels and angels milk.

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