Tag: family

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!

Song of the Week #4

I’m trying to birth a poem at the moment, and I need to get away from words. Last week, I had so much going on with my addiction post that I didn’t post Song of the Week number four. So, I’ve made it a goodie – ‘Samson’ by Russian singer Regina Spektor. Seriously, how did she get that song so perfect? How anyone can protest that this is one of the most beautiful songs on her 2002 album ‘Begin to Hope’ is beyond my comprehension.

My youngest nephew is a Sam. Not a Samson, but he may as well be because that’s what I often call him. Either that or ‘Sam-YOU-elle!’ Sammy was born a few weeks early, but that was enough to make him very sick. He had failure to thrive and had my sister not been a carrier of the CF gene, we would have suspected that he had Cystic Fibrosis. I’m sure my mum was transported back to when I was a baby where I struggled to put on weight, had constant chest infections and hospitalisations. When he was eight months old, baby Sam stopped eating and was losing weight quite rapidly. The only choice my sister was given was to feed him via a naso-gastic tube – a horrible thing for any parent to go through. I say parent, because thankfully he doesn’t remember having tubes forced up his nose when he’d rip them out as any baby would do. It’s certainly what I did. With a temerity and mother cub instinct, my sister managed to get through that and while that was really only the beginning of Sam’s health problems, on my sister’s birthday he suddenly began eating – the first thing he munched on being her birthday cake!

When he was three, Sam had been in a private hospital for his asthma for just short of a week and we he just wasn’t getting any better. The next thing, he’s literally dying in my sister’s arms. Sam was in acute respiratory arrest – a frightening shade of blue, his little chest sporting a huge cleave and he had to be brought back to life. I cannot imagine how terrifying that would have been for my sister. Not less than ten doctors worked on him for at least an hour and then he was transferred to the city’s best children’s hospital by the hospital’s head intensivist himself. Sam was placed in the Intensive Care Unit and I arrived to find him not intubated, which was a massive relief. For the next couple of days, he was under the watchful eye of ICU doctors and on bi-pap, a machine often used for CF’ers to force oxygen into the lungs. It’s essentially non-invasive intubation.

Sam eventually got better, but he still has terrifying asthmatic episodes. One day he can be running around like a maniac and the next, he’s in the back of an ambulance with sirens blaring, my sister terrified about the outcome. Now, because he’s awfully cute (all of my nephews are – coincidence they’re related to me? I think not), Sam has been don’t a lot of media – billboards in shopping centres, in ads, on radio and TV for the Royal Children’s Hospital Foundation (do you think I can find ANY of it?)

And so, this song always reminds me of Sam. The words ‘You are my sweetest downfall; I loved you first, I loved you first’, are words I’ve always associated with my nephew. We share a bond where both of us have been to the edge of life and back and we share an amazing spiritual connection. That’s all I’ll say.

The delicacy of this song is so exquisite and it’s just occurred to me that I’ve been selecting songs that are delicate, so I promise to mix it up with something with a little more robust next week. Maybe even something daggy, because I’m a bit of a dork. For me, ‘Samson’ has this ethereal quality with its piano trills and Spektor’s voice. This ballad is so striking in its simplicity and its shut up beauty and originality. It is the sweetest song on the album and for me, I think Spektor really found her form with this song.

A few years ago, I was lucky enough to see Regina Spektor live, and when I heard the first refrain from her piano, I cried with joy. Such an affecting song. And so I give you ‘Samson’.

Sammy and I even wardrobe coordinate …

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Sam and I a couple of years ago. We look a lot alike and I’ve been asked if he’s mine progeny, to which I say ‘he’s my nephew and I hold no responsibility as to what he may or may not do in your shop’ 😉

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Trying to breathe when you are drowning

Ever had a newborn baby put into your arms and breathed them in? Like really breathed them in as though it were your last breath? I’ve been thinking of experiences that trump being high, and this is the most powerful that comes to mind. I have four nephews and was lucky enough to be present (and I mean really fucking present) for two of their births. Aside from when I was dying, I’ve never experienced life in such an intense and all-consuming way that would change me, and even alter the course of what I thought I knew.

I remember a life-altering experience with my first nephew when he was a week young. I was laying down on my sisters couch with his little furled up body on my chest. It was just us and I could feel his tiny heart beating the most beautiful tune I’d ever heard. For about an hour our hearts melded together. That seemingly golden hour – as well as feeding him (with a bottle of course), and sharing a bath with him as he discovered his feet could magically splash water from floor to ceiling, replete with squeals of delight – was as close as I would ever get to feeling like a mother.

It was all kinds of wonderful and gave me the slightest glimpse into the all-encompassing blazing, bonding love and emotion a mother must feel for her child. That fierce sense of protection so they are safe from everything and everyone is something I’ve felt time and time again over the years with these boys, and I maintain that I’m lucky to be alive to be here to see their safe arrival and help shepherd their passage through life. That baby is now thirteen – the other three not far behind – and we share an unbreakable bond. Better than any drug, if you ask me.

After publishing my little essay on addiction, I’ve heard from people the world over who have fought and slayed their own demons. I have also been written by people who are still struggling and who asked for advice. While I’m not a doctor, I’ve found the most important thing is to be supported, whether that’s by your family, friends or a health professional. I’ve been fortunate enough to have been supported by the afore mentioned triumvirate, but now it seems I’ve entered strangers into the mix. Over the last few days I’ve laughed and cried along with every emotion in between, as people have regaled me with their stories – some of desperation and others marked with a stark and ironic hilarity that only a fellow addict can appreciate (think intense constipation and exploding bowels, a la Trainspotting).

A close friend of mine called me in tears saying that she wished she could have helped me; that she had suspected I was on drugs, but she never wanted to say anything in case she was wrong, and that she felt guilty because she could have helped. The thing is – and I told my friend this – no one could help me until I wanted to help myself. 

You need to be ready, and in my case, I wasn’t ready until I’d reached my lowest ebb. I reason that sometimes a flash flood is better than a steady storm. Floods get deep into the pain where you didn’t think it could even exist, and flooded rivers are often a ruse. Smooth and placid on the surface, but venture below the waterline and it’s that surge taking everything with it that will kill you. Trying to get your head above water once you’re under is close to impossible. Your best chance of survival is if a lifeline is thrown your way, but that so rarely happens. Sometimes if your body lands the right way up, you can take a breath – and another and another and another – then you can look around and swim towards the shore. My advice is to swim as hard as you can and don’t stop until you’ve reached dry land.

Lifeline – 13 11 14

Beyond Blue – 1300 22 46 36.

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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The night I lived again: part three

There is beauty in the ordinary. Waking up, making coffee, washing my hair, going to the post office. All ordinary things made extra-ordinary because I am here to do them. I woke early to watch the moon sink and the sun rise. The east screamed tangerine and the sun pierced the thin veil of sky with a restless yearning – as if it needed to be seen by humans so it had proof of life. ‘I am here!’ it bellowed through the clouds.

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Not surprisingly, I was much the same when I woke up after my transplant. I was still intubated (on life support), and my first physical response was to try and pull out the hose tube that was down my throat. I remember Dad finding me a notebook and giving me a pen so that I could write, but all I could manage was scrawl and for a few seconds, I thought I was brain-damaged. But was I even alive? I could see Mum, Dad, my sister Nikki, my boyfriend Lachie and one of my best friends, Laura. Someone then found Dad an alphabet board, so I could point to the letters. The first letters I pointed at were –

‘A M  I  A L I V E’

Everyone laughed and nodded their heads, saying ‘yes, you’re here – you’ve made it.’ Then I pointed out the letters ‘I  L O V E  Y O U’ and I couldn’t tell if everyone was laughing or crying or both. All I wanted to know was if I was alive, so when I knew for certain, I started thrashing around on the bed because the tube down my throat was choking me. At least that was how it felt.

For the next three days, whenever the sedation wore off, I would thump around like a frightened yearling and try to pull the tube out. That was until a nurse rushed at me and pushed more sedation through the I.V in my neck. What surprised the doctors, was that I needed about five times more sedation than the average patient of my age and size. They worked out it was a combination of stubborn and a high tolerance for not only sedatives, but barbiturates, general anaesthesia. Here’s Mum watching over me. It saddens me to see the distress etched along her cheekbones and forehead. I often wonder how much this experience both eroded and strengthened her.

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My friend Sharon, who introduced me to Alicia (they were studying the same course at the Queensland College of Art), and my Mum are smiling here because they can see that my fingers are pink after having been cyanotic (blue) from the lack of oxygen in my blood for so long. The fact that Sharon would cry and faint at the sight of a needle and/or blood (I remember her screaming when we had to have our TB immunisation at school), she did incredibly well with all of the needles, tubes and machines. Sharon has since had three babies and can now deal with blood. I’m very proud of her evolution.

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This is what an end stage Cystic Fibrosis lung looks like. I always liken it to a dead bat.

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When I initially went on the transplant list, I was told that I would more than likely have a long wait because my lungs were so small, which meant that I might need the lungs of a child. This never sat well with me. It was like a stone in my belly. Knowing that I was essentially waiting for someone to die so that I may live was an already heavy burden, let alone knowing I may end up with the lungs of a child inside me who had not lived a long enough life, often made me feel physically ill.

Transplant can be is a mental and moral minefield. A girl I had grown up with could never reconcile the fact that she had another persons lungs inside of her, and she died a couple of years after her transplant full of that terror. During a transplant assessment to determine if you’re medically viable for transplant, among the barrage of tests is a psychiatric evaluation in order to ascertain if you’re stable enough to endure the possible mental rigours that go hand in hand with having such life-altering surgery. The transplant team has to know if you’re going to be compliant. Are you going to take your medication every day and at the right time? Are you going to look after yourself when you leave hospital? Do you have adequate familial and emotional support to cope post-surgery? If the patient has emphysema, will they start smoking again? Unfortunately the answer to the last question can be ‘yes’. I’ve known patients who have taken up smoking post-transplant, and I can only imagine how this makes the doctors and other medical professionals feel. Personally, I want to give them a high-five. In the face. With a SHOVEL. I want to repossess their lungs and give them to someone who deserves and respects them.

For me, having a transplant is a shared responsibility between my donor and I. It’s a shared duty of care. They’re not my lungs – they’re ours. I’ll say ‘my lungs’, but what I really mean is ‘mine and hers’.

And so, I was extubated (taken off life support and breathing on my own) after three days and I didn’t stop talking. For days.

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Mum, Dad, Laura, Lachie and Nikki were never far away.

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And neither was Sharon, my Blood/Sharps Princess Warrior 🙂

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Lachie would often leave me writhing in pain because he made me laugh so much. He was incredible.

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My first walk. I call this ‘The walk of life’.

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One of my favourite ICU nurses, Allan. He did a superb job of extubating me and he thought my post-transplant boobs were magnificent, so I love him extra hard for that.

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But like any journey worth writing about, it wasn’t all sunshine and rainbows. In the second week, I began to wheeze and it became steadily worse over a weekend. I was home on day pass and I bounded up the stairs where I did a Rocky victory jig (except that no one was watching). I let everyone know that I’d made it to the top of the stairs without dying, and I noticed I was wheezing.

‘I must have got an asthmatics lungs,’ I said, and everyone applauded my efforts and laughed at what I had said about my wheezy lungs.

Scott Bell, my lung transplant consultant, was sick that weekend, so another doctor – a heart transplant consultant (hearts –> chalk/lungs –> cheese) assumed that it was asthma and so prescribed me nebulised ventolin. The problem was that it wasn’t asthma and by Monday morning, I was critically ill with the worst rejection Scott had seen up until that point. I had essentially been misdiagnosed. Scott was not happy. You don’t get Scott unhappy.

I had bronchoscopy after bronchoscopy, was moved back into acute ICU for a day for observation and my morphine dose was increased about ten fold. Rejection was the worst pain I had been in since the epidural had been removed a week earlier. When the epidural was pulled, it was as though someone had poured fuel over my chest and set it alight. I’d never suffered – really suffered – with pain so fierce and searing before, and I’ve been unfortunate enough to have experienced it a couple of times since (once was after my cancer surgery in 2007). In my ‘Transplant Diary’, where Mum and Nikki wrote everything down every single day, Mum writes on the 31st August, ‘Carly is in extreme pain, like someone is sitting on her chest. She is having morphine.’

The other drug they increased was my prednisone (cortico-steroids). Massive doses of methyl-prednisolone pulsed through my body for three solid days, as well as other drugs you’d think would be better at stripping paint off the walls. My doctors were calling transplant units all over the world to try and save my life, and though we knew the rejection I had was serious, it wasn’t until six months later that Scott told me how close I came to dying. Even when I see Scott now around the hospital, he still shakes his head and says, ‘I’ll never forget that rejection. It really was an extraordinary time.’

There’s that word again. Extraordinary.

But I’m more than happy with ordinary. Ordinary means simple, and simple is beautiful in its truth and brevity. As I head out with my family today, I will look back to this ordinary day in all of its staggering and miraculous beauty and all of the blessings that come with that.

(dis)connection

Yesterday was all about disconnection. After having another high-ish white cell count and another blood result that can be indicative of infection, rejection (it’s not rejection) or inflammation, my IV antibiotics were ceased because I’ve pretty much had all my body can take. Because it’s been two weeks, my CV line also had to be pulled. After two weeks they’re a high infection risk and the last thing I need is an infection in my heart. As you will see in the photo below, the site was starting to look quite red and angry, so I’m more than happy that it’s laying somewhere in medical waste. Although I’m still quite tired, I’m fairly sure it’s been the antibiotics that have been making me so dreadfully ill so I’m hoping to be firing on all cylinders by next week. I’m half tempted to go to the Ekka – a place I haven’t been since before my transplant. I have this craving to be unnerved and shaken back into life by something that spins me upside down. I need to do something unnerving – and soon.

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Here’s the catheter that was inside my jug-jug-jugular for two weeks. See the gunk? Eww.

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And here is my neck after my transplant nurse Margaret cut the stitches free and pulled out the line. It’s a little tender, and today there’s some bruising with my neck looking as though I’ve come off second best in a tussle with Edward from Twatlight. 

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The first thing I did when I got home was have a long, hot shower. It was neck-gasmic. But ever since Sunday, I’ve been thinking about my friend Sean because Sunday marked a year since he died. I felt his presence all day – even before it registered that it was the anniversary of his death. I wrote about the sacred time I got to spend with Sean just before he died here.

As the Kurt Vonnegut refrain flies, ‘so it goes’ … It will be seventeen years since my transplant on the twenty-second of this month. August is a time that is always tinged with a soupy mix of gratitude, survivors guilt and reluctant celebration. The transplant experience is  confounding in its conflux of emotion, though my mind feels so indelibly clear right now. My motivations have this seemingly robust lucidity about them because there is so much essence of spirit that’s driving my lived experience. 

But strands of thoughts loop across to my donor who I know was and is, always will be a girl in her early twenties. I know her age and how she died. I am not supposed to know, but I do.

Because we were so close in age, I find myself mulling over what she may have been doing this time seventeen years ago. Was she studying? Was she working? Was she happy? Was she listening to Jeff Buckley over and over like I was? What book was she reading, if any at all? Was she in love? Was she in that good, hard, impenetrable love I was in all those years ago? Had she fought with anyone? Was this day – today – a good day for her?

I will always wonder. You cannot have another persons lungs inside you and not be wild with curiosity and a little restlessness. I read about cellular transference and memory, and meditate about her family who I know selflessly donated all of their daughter’s organs. I wonder about how many of us are still left walking around with a piece of this girl inside of us? I’ll always be grateful, but I’ll always feel the familiar pull of sadness. If I didn’t, I’d question my own humanity. There is a storm about to roll across the city, so here is a collection of words I wrote long ago about what it’s like to ‘get the call’.

The night before transplant is …

bittersweet, pallid, rainy, painful and skittish

fearful and scattered from misplaced thoughts and morphine

full of heavy hearts and high hopes

stung by drunk boys and crying girls

the irony of chain smoking friends/father/sister

being hugged so tight by Tammy it hurts

stern faces, etched with what may not come to pass

red lights that have been run in the rush to get to the hospital

hope

waiting

thinking about dying on the table

asking my parents and my sister about my donor and their family: who is it/is it a boy or a girl/ how old are they/what happened/why are they brain dead/will I ever know?

stained by paradox

never far from my mind

saying goodbye with the hope of saying ‘hello, I love you’

The week that was …

Last weekend saw me help shepherd my sister out of the shadows of a broken marriage and into freedom. Freedom from years and seasons of pain and sacrifice, and freedom born out of an indelible cost to her humanity and identity as a woman. A big group of people who love her ferried her out of her grief and into her new life on Saturday night where we celebrated into the night at a swanky bar in town. Having recognised the best thing about this ending is that there is now a new beginning that awaits her. That, and I have my sister back. Back to her maiden name and back to the person she was – not the broken, shackled woman she emerged as … there’s only so much I can share. We’re all little broken and our friends and families are the glue who build us back up to who we once were. That and love, of which she has in spades.

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But just when you think you’re getting on top of one thing, the wind changes and bowls you over. I noticed that my right nostril was a little sore when we were out, but didn’t think much of it until the next morning when I woke up a little swollen across the bridge of my nose. I hazarded a guess and thought I might have cellulitis – an infection in the skin – so I called my transplant consultant and he said to pack a bag and come to clinic the next day. It was a swift response once they saw me. After blood tests, I ended up having the worlds fastest sinus CT scan and was diagnosed with having septic sinuses. So yeah, a touch of septicaemia due to a slightly diabolical sinus infection (thanks Cystic Fibrosis – you just give, give, give …) I was taken up to ICU for a central venous (CV) line to be inserted into my jugular so powerful intravenous antibiotics could be started as soon as possible so the infection wouldn’t spread to my places like my eyes or my brain. Here was my view for the afternoon. Whoever invented the heated blanket box needs a Nobel prize.

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It was tough going. The doctor who performed the procedure was determined not to use a scalpel on my ‘soft and lovely’ skin, and because he had to push in 14cm of tubing through my skin and into my jugular vein, he pushed as though he was doing CPR on my collarbone. My chest was pushed into the bed so brutally and it really hurt me (there’s only so much local anaesthetic can do). While I was waiting for a bed on the ward, intravenous vancomycin and meropenem commenced. I’m also on oral ciprofloxacin because IV cipro totally incapacitates me and tears my gut to shreds.

I was in a lot of pain from my nose as well as having a tube shoved into my chest, so I was given some pain killers for the night. And it was one of those nights where I had a nurse who just should not have gone into nursing. On Tuesday, I woke up looking like I’d been in a cage fight and I now know what it feels like to have my nose broken. It’s really quite fucking excruciating and I have a newfound respect for boxers and other sportspeople who have their faces regularly rearranged. Here I am looking a little different to what I was on Saturday night …

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So I need sinus surgery and I need it soon. The last time I had surgery,  my ENT specialist said that they were scraping the base of my skull and that removing the actual infection (the snot) was like pulling out chewing gum.

And so the week went on. Yesterday was my graduation from my pastoral care training, but I was too ill to go. My beautiful group kept me updated with photos and videos which made me feel like I was with them. I was so disappointed not being with them as we officially became hospital chaplains, but when your body shuts down you have to listen (even if it is telling you to forget about your antibiotics, get in a taxi and go to your graduation).

The universe works in remarkable ways. I’ve always found that with pain comes great beauty. Thousands of words of poetry have poured out of me and I’ve come up with a humdinger of an idea for a poem that involves water. Of course.

After coming home today, and then having to return to hospital twice, the levy finally broke. Today was tough and I’m simply worn down from pain and the onslaught of infection in my body. My white cell count is up and the gravity of the week had me drowning. I think a little piece of me broke. I can’t even do a solid shit (and won’t for at least another ten days), I got my period yesterday, the skin where my CV line is is red and angry and my belly is bruised from clexane injections to prevent blood clots, so … I took a deep breath, put Xerxes, HWV 40: IV. Largo (Ombra mai fù) on repeat, had a long, restorative shower and redressed my CV line. This is how it looks sans adhesive dressing. The four stitches are to keep the line anchored so it doesn’t tear out of my jugular. Tears are optional.

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This week has left me feeling crestfallen. I got through the Harry Potter book where Dumbledore dies and the nurses looking after me thought I was howling in pain, but it was more existential – observational even. It’s odd because I’m so used to crying with joy – not immense sadness. Out of the mire of pain comes a stockpile of words – more than I even need, so after my blue moon ritual tonight I’ll hook myself up to my IV’s, put words down – both gently and ferociously – and feel safe in the knowledge that tomorrow is a new day.