And It’s Surely To Their Credit

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The West Wing – And It’s Surely To Their Credit

Because of you I am a good nurse. 

My favourite preceptor never introduced me as his student nurse to the surgeons, I was always his sidekick. The first time I played scrub nurse it was for the morning orthopaedic list with the upper limb surgeon. After I carefully scrubbed in his presence, managed to slip on both sets of sterile gloves without ripping them, and didn’t contaminate myself all the way to the operating table, I went to introduce myself to the surgeon. I was terrified that he’d refuse to have a student nurse on her first day in theatre scrub for him. He had every right to feel that way too – I had absolutely no idea what I was doing. My preceptor slid in beside me, freshly gowned himself, before I could even speak .

“This is Dannielle, my sidekick, she’s gonna scrub for you,” he said, and even behind the mask I could tell he was grinning.

“Well, goody,” the surgeon said in his polite British accent. “Skin knife and artery forceps to start please sister.”

“Yes, right away,” I’d said, smiling widely even though he couldn’t see that part of my face.

I spun around and turned to my preceptor in a panic. Which one was the skin knife? I had learnt 10 and 15 blade. What in God’s name were artery forceps? He laughed at my expression and called to the surgeon.

“Ya know Matt normal people say 10 blade and a haemostat, give the poor girl a chance, she doesn’t speak British.”

The surgeon laughed and rolled his eyes, and I handed him the instruments, feeling stupid. My preceptor didn’t allow me to feel stupid for long. He let me scrub for countless procedures, taught me how to be a circulating nurse, and annoyed other scrub nurses until they let me observe their surgeries – a kidney transplant, a liver transplant, an aortic valve repair, and a coronary artery bypass graft (CABG). Having a preceptor who teaches with the same passion with which you want to learn undoubtedly shapes one’s career as a nurse, they help make you into the kind of nurse you want to be.

During training, other nurses overwhelmingly influence what sort of nurse you will become when you graduate. More often than not they guide and teach you, showing you how to be a competent nurse, but one can learn just as much from poor experiences, learning about the kind of nurse you don’t want to be, the behaviour you want to improve and learn from. I carry all of these experiences with me as a graduate nurse, because now I am the nurses that taught me, patients are my responsibility, and I have students of my own to teach from time to time. However nurses are not the only ones who influence us in our path to become RNs, there are many reasons we even come to nursing, and so many people who shape those ideas. For my first year as a qualified registered nurse, I would like to pay respect to those individuals and thank them for the nurse that I have become. 

The Teacher

I am fifteen years old, in year eleven, hell bent on going to medical school. I sometimes wish I had a curtain to hide myself behind, because the voice in my mind makes it hard to see anything good about me, only problems to be fixed. Control is the only drug I need, and it’s an addictive one, one that leads me to the bathroom lunch time early in September. I have chemistry in fourth period, but my mind is thinking of other things. The ritual is terribly familiar by now. I choose the farthest cubicle, checking to see that there is no one around, and attend to the cutthroat business that is making myself sick. Then I go about the other business – hiding it. I rinse my mouth with mouthwash to kill the smell and get the acid off my teeth. I place a cotton pad soaked in icy water around my eyes to stop the redness and stinging, so I do not draw suspicion by looking like I’ve been crying. I smooth my clothes and follow the command from my mind to act normal. I make it to chemistry class, my facade holding, I make it all the way through class too, even though I feel a panic attack coming on, because a familiar feeling is beginning in my lower abdomen. Pain. When the bell for end of class rings I walk along one of the upper levels of classrooms, away from the rush of people who might notice that my mask is cracking, because my heart is racing, my stomach churning – from anxiety or as a side effect from vomiting it is unclear, but it hardly matters. I see my biology teacher, my heart races faster – I am bad at maintaining this face around him, he sees right through it so often, he is too nice and I feel guilty for lying. But this is a secret that burns everyone who touches it, so I always try. Today something is different though, I don’t know what, perhaps I have managed to wrestle back control from “her”, if only for a moment, because when I smile and wave at him, strolling past quickly, he turns back. When he asks me if I am okay, I say no – against better judgement, against her screaming voice, even though I know it may mean the end of my secret. 

I learnt the first thing about being a good nurse before the thought of becoming one even occurred to me. From my high school biology teacher I learnt what it meant to do more than the confines of your job description, because when you care for other people duty calls you someplace higher. To have the privilege to care for, teach, or mentor others as part of your job is to understand that people are more than the task in front of you, they are more than a policy, and more than what you can ever be taught in university. When I told my teacher that I didn’t just spend my lunch times not eating, I spent them throwing up too, I expected him to panic. I figured it wasn’t part of teaching curriculum to know how to deal with teenage bulimics, you just passed them on to people whose job it was to fix them. I expected that maybe he would say that he was sorry, but he had to drag me kicking and screaming to our school’s guidance counsellor – who I was not a fan of. I even expected that maybe he would be sad, and ask me why, why did I do this? How could I like throwing up, perhaps he would ask – like the school’s deputy principal would ask two months later when he found out. He didn’t do any of those things, there was no panic, there was no passing me on, no dragging, For many weeks and months after that day he listened to me, helped me figure out what I wanted to do, and let me realise on my own that I wanted to stop, and was there for me when the time eventually came to tell my parents, he even called my mother when I was too nervous to go home and face her. During this time he never let me forget that I was enough – smart enough, good enough, capable enough, and soon I started to believe it too. He wasn’t obligated to do any of this in his role as my teacher, but he did anyway, because it was what I needed. He realised that what I told him was the hardest thing I have ever told anyone, and respected the kind of honour associated with that. I trusted him enough to tell him my darkest secret, and he never let me down.

My teacher taught me what it meant to be empathetic, and not just do a job, but be genuinely passionate about what you do – enough to go the extra mile without missing a beat. When I admit a patient for surgery, or care for someone on a ward, or attend to an emergency patient, I have a list of requirements that I must fulfil. I must abide by policy, professional frameworks, refer to my knowledge and assessment skills. If by the end of a shift my patient has had their prescribed interventions, I have helped them with activities of daily living, prevented harm, and reported deterioration to doctors – my job is done, legally and professionally. I am busy in a shift, and sometimes there is not time to hold hands or give reassurance – but I do it anyway. My patients are more than a list of tasks to complete, and my job is not just to carry out such a list. I make time to listen to these conversations, because it’s an honour to be chosen to hear them. If a patient trusts me enough to tell me they are scared, I must give them the respect of my attention and my comfort. This comfort isn’t an extra, it is part of being a nurse, and why I became one.

Thank you for teaching me the power of empathy to help and empower another person, because of you I am a good nurse.

The Doctors 

Frank

To become a nurse, or any health professional, is to learn a new language – a plethora of jargon and acronyms that become part of your everyday vocabulary. You don’t go to the toilet – pt PUIT. No more do you eat three meals a day, one “tolerates diet and fluid”. To enter an environment where people freely use this language is akin to travelling to a foreign country. This is how a patient feels when they enter a hospital. As well as this new language, one learns a new set of social rules and skills. In real life, we learn our social skills through experience and develop schemas, we observe and put into practice that which we have observed. In nursing world, we have to learn this all over again with interesting new observations. No one ever taught me the appropriate conversation to have with a patient when they’re half naked, or when you’re violating their personal space, or how to ease the awkward silence that exists as you stare at someone’s chest to count their respiration rate. However there is a doctor that stands out who taught me that all of these things can be done, and done well, and his name is Frank.

Frank and I met in my first semester of nursing school and three months after my laparoscopy. I was sent for a scan as a follow up after surgery and to ensure my IUD hadn’t attempted any sort of breakout from my uterus, because perforation of any organ is absolutely no one’s friend. Those endo sisters among you will know said scan as the delightful process where one lies with an ultrasound between one’s legs for twenty or so minutes and tries to focus on something other than the fact that this is the least fun you can have without your skirt on, ever. Frank was uniquely gifted at conversations you can have without pants on. Within five minutes we had covered our shared university alma mater, how he thought nurses were the greatest thing to happen to the world, and several jokes about the absurdity of a former premier’s head. I laughed, I felt comfortable, and yet I still wanted to throw up, and my endometriosis flared up which made things fifty shades of shit. He managed to seamlessly swing from laughter and manner that could only be described as ‘jolly’, to quietly asking me if I was alright and reassuring me that everything would be okay. I am one of those people who cries stupidly when people are nice to me, so naturally I went right on cue. This doctor did not make me feel stupid for feeling this way, he didn’t tell me not to cry or that there was nothing to worry about – because clearly for me there was. He just patiently waited while I let the anxiety out, offering a helpful hand on a shoulder, or sympathetic nod. Then when I was ready he went right back to his jokes.

Sometimes the only way is through. In nursing I cannot dance around the fact that something will be awkward, or that it will hurt, but if I act like I am asking them if they’ve seen any good movies lately, rather than whatever organ system I am focused on at the moment, things go alright. Patients can read you like a book, make no mistake. If you act like what you’re doing is a big deal, or makes you nervous, they will mirror those feelings. Frank taught me the importance of treating the awkward as routine, while still acknowledging the foreign environment the patient finds themselves in. You must be as prepared to make small talk as you are to hold hands, and treat both as a completely normal part of the process. I am still not as adept at these situations as Frank, but I have a standard to aspire to.

Graham 

The first time I left Graham’s office, I cried for a long time; it wasn’t because I was sad, not really, despite much talk of surgery and endometriosis. The only thing I was sad for was the knowledge that before this I had accepted less than being taken at my word. I cried with an unusual mix of relief and something unidentifiable, because I had never felt so understood in all my life. I’ve written plenty in the past about how I have been so fortunate to have a great specialist, but it cannot be understated how greatly this treatment has impacted on how I treat my own patients. It’s not only how his kindness, patience, and consideration made me feel better, it’s how it empowered me to trust myself and become my own advocate – because not every medical professional will understand or even try to understand endometriosis, sometimes you have to be the one to push.

No matter how many times I find myself sitting in the same spot in his office, usually three months too late, to tell him that things have not been so good, he acts like it’s the first time I’ve even bothered to ask. There may be some theatrical sighing and a head shake as he tells me that for a nurse I am a terrible patient, but every word I say is taken seriously. If it matters to me, it matters to him. If there is a story that goes with it, he listens. It’s not so hard to figure out what patients want on a basic level, they want to be heard, to feel like what they say matters, that the person they are telling cares. A few times during an appointment he has answered a call from one of his children or another patient, always apologetically. Some people shake their heads when I tell them this, saying that he could have waited for me to leave, but I see it in a different light. The people who call know he is a doctor, and a busy one, so for someone to call and expect to be answered, it must be important. I know from my own experiences that knowing someone needs you and not knowing why can be twice as distracting as just simply answering and figuring out what you can do later, and reassuring that person that they are heard. To me that shows genuine care, and if he treats his family, and his other patients with this respect, then surely I too am in good hands. In nursing it is so often that our care goes unnoticed because it is out of sight – the phone call to a doctor at 2am to demand they come and review a deteriorating patient, the care I take to have a medication checked before administering it – but  I am okay with that, because I do not care to be acknowledged, I do it for the patient.

I find myself each day on the ward using some classic “Grahamisms” – a joke he’s made to make me feel better, emulating a reassuring expression, or simply trying to think what he would say if this were me, or one of his patients.  All of them have helped me with my own patients. More holistically, his attitude of listening to the patient narrative and allowing it to be one of the major tools for assessment is something that influences my practice. It is the reason I listen with interest as someone tells me the story about their grandchildren, because sometimes it’s important, and give a clue to something we may have missed – depression, decline in mobility, cognitive problems. Patient stories matter, and part of providing true patient centred care is seeing the patient in their world, rather than the artificial and controlled world we create in hospital. Graham taught me that health professionals can make differences in people’s lives, big ones, and though our names might be forgotten, and our faces may fade away in their minds – patients will never forget the care we provided or the safe and reassuring place we created for them.

Thank you for teaching me the real life meaning of patient-centred care, and how empowering it is as a patient to be heard, and understood. Because of you both I am a good nurse.

The Matriarch 

My Nanna was 77 years old when she died, which seems far too young in an age where life expectancy for women is over 80. The disease was metastatic breast cancer, the cause liver failure, the complication urosepsis. Nanna always wanted to be a nurse, she once told me, a theatre nurse, just like me, so that she could watch surgery all day. Nanna never turned away from blood and gore, she loved it, even when she claimed she didn’t. I was in my first year of nursing school when she received treatment for a relapse of her primary cancer, and was taking my final exams the week she passed away. The day she found out that she wasn’t going to make it, and that mere days remained, she was braver than I thought possible. She held things together after an initial outpour of emotion, she began charging me with the responsibility of making sure each granddaughter would have something of hers, and what of granddad’s would be left to her grandson. She and I attempted on that first afternoon to cram what should have been another twenty or so years of love and life into a short space of time, knowing that each word came from a stolen moment and borrowed time.

On the third day the ward’s nurse unit manager came and told me that she heard Nanna wanted to see her dog one last time, and told us that if we could sneak her in, she would let us. Nanna was already on a NIKI pump, filled with medications to ease pain and keep her sedated enough not to feel any distress, but when Chloe came to sit on her bed, I swear I saw her smile one last time. The nurses sat at the door, trying to catch a glimpse of this sweet moment and smiling. This was a simple gesture, but it no doubt meant everything to Nanna to see Chloe one last time. She saw her three sons, two of her granddaughters, her best friend and her dog – she could go now. She didn’t wake up again after that day and died two days later. The nurses in oncology talked to her as though she were still answering, they did turns and care as though preventing pressure areas at this point really mattered, because my Nanna, no matter how close to the end, was still a person who deserved comfort and care. Those nurses were exactly what I wanted to be, but it was Nanna who taught me what it was like to be the one dying. She taught me that there is no textbook way that things go when you hear that the end is coming, and that it is possible to be brave even when inside you are not. Nanna lived a life for others, and that was how her life ended too – she was strong for us, even when it was us who wanted to be strong for her. At her funeral my father described her with a line from Bruce Springsteen – courage you can’t understand. That has been true for so many patients I have cared for. I look at them and wonder how they don’t just cry all the time, how they manage to make jokes and compliment my hair or my colleague’s tie. They find something, some place inside them, and keep going despite their circumstances. My patients have been the best teachers of all. They help me understand what it is like to be vulnerable or scared, or confused, and that these emotions matter. They are more than their disease. I have been the patient myself, and for so long I didn’t think much of myself, and for that reason I accepted it when people dismissed my pain or didn’t take me seriously. Once I found a doctor who helped me realise that I matter, I knew I never wanted any patient to feel the same way. My patients are the reason for my job, and they teach me something new every day. I see Nanna in them each day, and for her, and them, I do my very best.

Thank you for teaching me what it is to be a patient, how we as humans can handle even death with grace and dignity, and that loss changes families forever; and how I help families deal with that can also change them forever. Because of you, I am a good nurse.

On my final day of theatre placement I scrubbed for the same surgeon as on the first day. Before he even turned to ask me I handed him a yellow sharps tray and held in my other hand a haemostat.

“Skin knife and artery forceps,” I said.

“Thank you sister,” he replied.

“You know I’m not a nurse right? You don’t have to call me sister, I’m a student,” I told him.

“I think I’ll call you sister,” he said. “You’ve earned it.”

My preceptor stood to the side, supervising but letting me do the case alone; I could see his eyes smiling behind his mask.

“Thank you,” I whispered.

To every preceptor, every patient, every doctor, and friend…to every family member, every other student nurse who made it through with me: thank you for making me more than just a good nurse, but a great nurse, a nurse in progress who humbly presents herself each shift to patients and other colleagues to ask – what can I learn today?

To every nurse and midwife reading, Happy International Nurses Day sisters!

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Better Than Anaesthetic

The Realities of Being A Nurse With Endometriosis

Drain the pressure from the swelling
The sensation’s overwhelming
Give me a long kiss goodnight and everything will be alright
Tell me that I won’t feel a thing
So give me Novacaine. 

Give Me Novacaine, Green Day.

The pain has been ebbing and building for two hours when it changes to constant, and stabbing. The feeling of nausea is subtle, but it too grows, as does a hazy feeling inside my head that is the precursor to dizziness. I am sitting at a table, where it’s easy enough to hide these things, and I occupy myself with the lists and tickets in front of me, I smile at people as they walk in – no one knows except the person beside me, because I have attached a blister sheet of paracetamol to my clipboard. We all laughed at first, about how nothing would stop me being at this event, not pain, not anything, and so I have meds on hand, naturally. When the first wave of intense nausea comes my hand rushes to my mouth. My colleague tenses and hands me a bin, but I have no desire to vomit in a bin in front of everyone, especially as I see my doctor seated in the back row in front of me – I pray he doesn’t turn around and see me. When I return from the bathroom I sit on the floor at the back, feeling as though I may pass out. I recognise a pre-syncopal episode when I see one, and now I am feeling it. As I sit I look at the back of my doctor’s head, willing it to stay turned away from me. I can feel the eyes of my friends on me, worried, wondering what they should do. I sit filled with guilt that they are worrying about me, instead diverting their full attention to enjoying the fruits of their labour. Don’t look back, I think to myself, watching his head; don’t look back and see me.

I can already hear your question, reader, why didn’t I want him to see? What luck, I hear you say, to be feeling horribly sick with an endometriosis flare up and be sitting in an event surrounded by nothing but other women with endo and your doctor. The thing is, the very last thing I ever want is to show other people how sick I am. I wonder if it’s because I want to hide it, because I don’t want pity, or if it’s denial. If no one notices, it can’t be that bad, right? It’s learned behaviour from my days as a teenage bulimic – showing symptoms was synonymous with showing my secret and I avoided it as much as possible.

Perhaps it’s because my job involves caring for other people, and when taking care of others we instinctively hide our own distractions so that this person knows we are focused on their needs. This relationship won’t work nearly as well if the other person thinks they need to take care of us. I can still remember a shift as a student nurse where I had no choice but to go home sick because I couldn’t push aside how ill I felt anymore, I had pushed too far and nearly blacked out in the middle of a blood sugar check. The patient in question looked up at me and asked “You right nurse?”. I nodded and smiled, telling him that he needn’t worry about me, I was making sure he was okay. I finished – just. As soon as I wrote down that value I walked quickly to the bathroom where I felt my legs give way and I sat on the floor until things became clearer. Even then I knew that I couldn’t let my patients see my pain, ever, because I was not in the business of patients worrying about me when it’s my job to take care of them.

Nurses make the worst patients, don’t they?

When I started nursing school I saw patients with the same problem, the kind that told me they were fine and wanted to go home, and then nearly passed out walking to the shower. Patients who didn’t want to bother me by asking for pain medication and only relented when they were wracked with pain and I held their hand as my colleagues administered strong pain medicines. If I hadn’t already appreciated the danger of denying symptoms before then, nursing school certainly reiterated it. But it didn’t seem to be enough, I still reverted to my standard defence mechanism. Final semester of nursing school, September, my pain which had been well controlled for close to eighteen months, began to act much like an unruly child. Since my surgery and IUD insertion, and a few months of hellish pain, my overall pain was reduced 90% of the time. Once or twice a month I may have gotten pain bad enough to effect my functioning, and a few times a month some pain in response to stress or too much sugar when my best friends and I tried a spree of new dessert places. It was more than manageable. I was doing so well that I joined QENDO as a support worker, flew through my accelerated nursing course, and dreamed lots of dreams that seemed out of reach before – I hadn’t thought I could stand for hours in an operating theatre as a scrub nurse in pain, but now the pain was gone. I fell crazy in love with theatre nursing, and thought the feeling of joy would never go away.

In my final placement everything went completely and categorically to shit. The pain was back most days each week, some mild, some moderate, and some straight from the fiery depths of hell. Those days, combined with the stress of a placement that made me more anxious each shift, made lunch breaks no longer for lunch, but for finding a bathroom to cry or have a panic attack in where no one would see. I hadn’t experienced pain so horrific since before I was diagnosed. I blamed it on my placement – anxiety is fuel for a flare sometimes, surely it’s because of that, I thought. Placement was over, and still the pain stayed. I blamed it on job hunting – that was stressful too. By February I had secured a graduate job for March, my first real nursing job, and yet the pain did not go away until there I was sitting on the floor of a lecture room at UQ trying not to pass out. There was nothing left to blame – I loved my new job, my new role in QENDO, I finally had my own place. There was one question now – what the hell was happening to me?

The task of tackling nursing and endometriosis is a challenging one. At times I feel like I know too much because of my nursing background, and only sometimes is it an asset instead of a liability. It is great to know exactly what doctors are saying to me, or to be able to advocate for myself because I do it all the time for patients, but sometimes I don’t want to know – knowledge can be both a blessing and a curse. The greater issue is one I get asked about a lot – how can you work in so much pain?

The truth is that nursing is the best thing that ever happened to me for coping with pain. When I am in my uniform, or my scrubs, on a ward or in an OR, I am someone different. My endometriosis doesn’t exist for eight hours. I feel it tug and pull, like a child on its mother’s skirt, but I do not look down. By some feat of strength I can push the pain into the background, as long as I keep moving and keep working – and a shift at my hospital leaves little time to be idle. My work is what helps me survive. Being a nurse makes me feel in control because when something happens I can intervene. Pain? Have some PRNs. Nauseas? Have some antiemetics. Strange, new symptoms? Let me page the resident for you and reassure you that everything will be okay. When I feel any of these things myself, I feel powerless, sometimes there is nothing I can do. The pain of endometriosis is such that often no painkillers touch it, you feel violently nauseous, pale and dizzy, and the weight of it crushes you. The feeling of stasis makes me uncomfortable, anxious even, and so when my endometriosis flares up I feel out of control, it slips through my fingers. If I didn’t have my work, I’m afraid of what I would do to get that control back. Nursing is better than any pain killer, better than anaesthesia – for just eight hours.

And there in lies the problem, it’s temporary. As soon as I get home and there are no more buzzers to answer, or IVs to change, or people to take care of I have to take care of myself – and I am really bad at it. If I treated patients the way I do myself, if I ignored their symptoms, denied them pain killers, or just let them feel sick, I would be a terrible nurse. So why do I do it to myself? From talking to a lot of other endo sisters, I know I am not alone in this problem. Part of me wonders if it’s because we have been doubted, pushed aside or dismissed for so long that we cannot indulge ourselves, because we feel guilt about being selfish, or worried that people will think we’re “sick again” and tire of us. If we pretend everything is fine and act normal, no one can hurt us with a lack of understanding. Perhaps it is a strong desire to just be normal, after being sick for so long. There is an element of denial. I recognise that in myself – I didn’t want to believe that the pain was “back”, it was just a little flare up, something I did, something I needed to fix. If the pain wasn’t back then no one needed to know, and I could keep pretending.

As carers we need to remember to engage in self care. We must refute the notion once and for all that self care is selfish, or indulgent, or some kind of privilege we must earn. It is none of these things, it is a necessity. How can we as nurses, or health professionals, or counsellors, or parents expect to care for our charges if we have not taken the time to care for ourselves? It isn’t easy, as part of our role we are often conditioned to put others before ourselves, and that attitude doesn’t leave us at the door as we leave work. It can be an ongoing challenge to change this attitude, to learn to say no and take a minute to ourselves, to stop denying. I have no easy answers for you on how to achieve this, it is my own project at the moment, I am learning these things for myself. It has been helpful to ask myself – if I were my patient, would I accept this treatment?

I encourage you to create your own self care toolbox, whether you’re a nurse, you have endo, or you’re a special hybrid nurse-endo sister like me. For endometriosis, every professional I have had the pleasure of talking to has recommended creating such a tool box. Who are your people? What can you do for pain relief, both pharmacological and non-pharmacological? What are your coping strategies? Who are your endo team, the health professionals you can access to manage pain and stress? Most importantly, be kind to yourself – if you live with endo and you generally exist and function, even just a little, you are doing so incredibly well. It is not an easy burden to bear, but I have seen so many of us bear it with grace and optimism.

And so it is with my own advice in hand I once again embark on the task of controlling my pain; I venture into the medical world not as RN, but as patient, to once more find a new GP, despite it being my least favourite task, because pain is no one’s friend. I lived in pain before my diagnosis for so long, so I owe it to myself not to live that way again. I owe it to myself not to pretend that there is nothing wrong, no matter how easy it is to slip back into that habit.

It’s okay for him to turn around now.

My Love Will Not Let You Down

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Smash, crack, bushwhacked.

“Oh God…oh no,” I whisper. “Open your eyes for me? Come on, wake up.” My stomach twists with the realisation no nurse wants to overcome her.

It’s two a.m, three hours into an eight hour night duty on a medical ward. My room so far has been a bustle of high strung activity with three out of four patients agitated for a number of different reasons. I am overwhelmed, but things show signs of calming down and I whisper to myself ‘you can do this, you are made of stronger stuff’.

When I arrived on the ward at 11pm, one patient was flanked by security guards, apparently spitting at the nurses who tried to tend to him. Half a risperidone later, he was calmer, and we asked the security guards to release him, he settled into his chair with a grumpy sigh. Another patient, confused about where he was, bellowed at me to come to him when he speaks to me, after all this is his house, he’s the boss. I attend one of the other patients who is restless in bed, positioned poorly, and making gurgling noises from a build up of respiratory secretions. I try to provide some comfort, and he rolled his eyes at his loud roommate. I took my loud friend to the toilet, where he finally conceded that he’s in hospital and told me, ‘you’re the boss’. That’s right, I confirmed, hoping that he would sleep. As I took him back to bed, the first man decided he wanted to go home – now, and I rushed to stop him falling. The man with the secretions began to put his legs over the side of the bed, and I hold my hand up to tell him to  wait,  he has to stay in bed and I told him so. Then there was the man in bed 2, all of his faculties intact, who just wanted to get some sleep and was finding it impossible. Welcome to hell, I recall thinking. I wouldn’t have thought any patient were destined for trouble, big trouble, by the end of the night; and if I did, I would have thought someone different to whom was chosen.

At 2am my agitated gentlemen have settled for the most part, I am glad that they are getting sleep, are comfortable, and have all their basic needs catered for. As a nurse, nothing makes me more satisfied than a room full of well-positioned, comfortable patients. I find great contentment in the act of performing a good turn, placing a pillow under a side or under legs, knowing that I am helping prevent uncomfortable pressure areas. My patient with the secretions is not contented, despite a visit from the physiotherapist to help clear the secretions, he doesn’t like suctioning and swats my hand away after mere seconds as I take to his mouth with a yankeur. I clean his mouth gently with a sponge on a stick, hoping to at least relieve the discomfort of dry mouth and the sticky sensation of sputum settling in a film across the tongue. He complains of being hot, and I mop his head with a cool towel. At midnight when I took vital signs, I was pleasantly surprised that he was saturating well despite the gurgling in his chest. He has now gotten himself into a twisted mess, and I long to make him comfortable, but I cannot do it alone. I call for porters who help me get him up the bed, sitting up to open his airway, and am careful not to leave him flat for too long – aspiration is a risk. I suction his mouth again after he is sitting up, clearing the thick secretions. I sit in the room, keeping an eye on him, he remains fidgety and restless as ever, but at least now he is positioned optimally. His discomfort is something I cannot change and I hate it, there are no more medications to give, he refuses the nebuliser mask I attach to his face, and I content myself with having at least helped him into a better position.

There is a moment where everything is calm, and I relax, thinking to myself that it’s not so bad in here after all, I’m doing fine. Then bed one perks up, suddenly adamant that he go to the door to see if someone will take him home; he is palpably disappointed at finding me beside him, since I haven’t helped him escape yet. He is an extreme falls risk, and my heart races as I hold his shoulders, terrified that his swaying will turn into a swift tumble to the hard floor. My mind flashes with the possibilities, head injury, neck of femur fracture, bruises and skin tears; what will I do? How will I handle this? Miraculously he thinks better of escaping and goes back to his chair, telling me that he will wait for someone who will actually take him home, and promptly dozes off.  I shake my head and smile, hopefully everyone will get some sleep now. That’s when I look over to my patient with the secretions, because for once he isn’t trying to climb out of bed or move around, I think with relief that he is finally getting some sleep. Then I notice sputum coming from his mouth and go to clean him up, using the yankeur to suction the unsightly glob. I expect a fight, there is none.

The room is filled with the melodic snoring of three men, and so at first it isn’t a surprise that I cannot hear the gurgling. But something doesn’t feel right. I look at his chest, it doesn’t look like it’s moving, I put my hand there to try and feel if they’re shallow breaths, and feel nothing. I am only a graduate nurse, and part of me wonders if I’m not doing it right, if I’m overreacting, but part of my mind screams; this part of me squeezes the patient’s trap muscle in the neck and calls his name. “Oh God…oh no,” I whisper. “Open your eyes for me? Come on, wake up.” I look into the hallway and see no one. Another nurse in the medication room sees me, we went to university together, and she sees me looking panicked. I motion to her to come, and we know what we have to do. We call a code.

In a cascade of activity we put the bed down, turn on the lights and check for any orders forbidding us from resuscitation, finding none, our team leader jumps on the bed and begins to pound the chest, another nurse gets the bag valve mask and provides airway support. We pull the trolley into the room and put the defibrillator pads on, just as we have been taught mere weeks ago in BLS training. As we come to the end of a first round of CPR there is a tension in the room – where is the code team? Where are the doctors and ICU nurses? We analyse the rhythm – no shock is advised, asystole. My stomach turns; asystole means there is a likelihood that he is already gone. I line up to do compressions and the med reg, ICU juniors, surgical ward call doctor and ALS nurses arrive; order is established and the med reg takes the lead, pleased that we have sorted ourselves into airway, breathing, and circulation already. Someone calls the patient’s wife. He analyses the rhythm again and commands us to continue CPR. The team leader runs to the next ward and recruits more nurses to rotate through CPR. The nurse in front of me begins to tire, I can see her exhaustion. I tell her to tag out at the end of this round. She nods gratefully.

“28, 29, 30,” she pants.

I wait for the rhythm check, my hands poised above the chest, trying not to shake. I have never done CPR on anything other than a training mannequin, where you can stop if you get tired, start again if you’re not going fast enough, and someone helpfully critiques your technique. The doctor calls asystole, continue CPR. I start pumping the chest, counting in my head, trying to go hard and fast as I have been taught. The ICU junior is on the airway, and she tells me calmly to slow my pace slightly, she hums “Stayin Alive” to mirror the rhythm. My arms begin to ache quickly, my breath fast, my heart racing, proper CPR is exhausting, because it has to be. I watch the vitals machine beside the bed, the oxygen saturation are startlingly low, possibly because the peripheral blood flow is shutting down, and now an accurate reading isn’t possible. My eye falls on the pulse though, it is above 100 bpm, which is the goal for good compressions. I am doing okay. After two rounds I let the nurse behind me take over, and stand in line to go again, my lungs aching and arms burning. I cannot feel it fully though, my eyes never leave the body of my patient, praying that our efforts will not be wasted, that we can save him.

More access is established, an IO port drilled into a leg bone, another large bore cannula. The blood gas comes back – the pH is 6.7, he’s acidotic, another poor sign. Still we continue, because we do not give up until there is nothing left to do. The med reg calls for an ET tube and a laryngoscope, it is time to intubate. I do two more rounds of CPR and watch as we continue to pump adrenaline and check the rhythm. Suddenly, a flicker of hope. Pulseless electrical activity or PEA, registers, a change in asystole, it isn’t shockable, but the med reg tells us if it continues we can try atropine to stimulate the ventricles. It has been over half an hour and we begin to look at each other, wondering when we can do no more. Another two rounds, back to asystole. It is my turn again and the med reg tells me to keep going. As I pump the chest I can hear noises coming from my patient, they sound almost like gagging and for a second I am hopeful that there has been a return of circulation, maybe he is gagging on the ET tube because we have not used rapid induction drugs, but his face does not change – it is merely the sounds of air and gas as I throttle his thoracic cavity. As I do my compressions my brain is a jumble of thoughts. I am attempting to count my compressions, thirty in each set, I am singing Stayin Alive to keep my rhythm accurate, and in between I am praying, but in the activity my brain struggles to recall the words.

Hail Mary, full of grace…hail Mary, hail Mary. 

My mind pants it out with the same frequency of my compressions and though the words are lost, the intent is the same…please, save his soul, give me strength to keep going until there is nothing more to do.

One of the other nurses is in the middle of a round when we check the rhythm again, this time when the med reg calls asystole, he doesn’t tell us to continue.

“Stop CPR,” he says.

The room is silent, we watch the defib monitor, waiting for our miracle – we do not get one. We all look towards our watches, because someone will need to note the time. The doctors and ALS nurses look to each other for agreement.

“Time of death 0340,” he says. “Rest in peace.”

My mind finally remembers the rest of the words, and they fill my head involuntarily.

Pray for us sinners now and at the hour of our death, amen. 

There is not a face in the room that doesn’t look solemn and respectful. The doctor looks around at us and nods.

“Well done everyone, everybody did well. Peripheries were warm the whole time, good CPR, quick response. We did everything we could.”

People begin to file out of the room to document the event, to call his wife back with the news; others draw the curtains to prepare him for when she arrives. One of the other nurses walks past me and touches my shoulder and says “well done”. I am frozen, I stare at the bed, realising that this is it. He was my patient, my responsibility, and now he is dead. I can feel tears escaping my eyes. He’s dead. It sinks in slowly, like sugar slowly dissolving through the foam on a coffee, slow, then one final drop into the sea of beverage below. One of the other nurses tells me to go sit down.

“I can’t,” I say. “I have to special the other guys, I can’t leave them. They might fall, they might be confused.”

She tells me that someone is there, another nurse from my graduate rotation, who will take care of things. The ICU nurses begin to organise a debrief and one of the nurses tells them that graduate support is coming. They look confused and ask which one of us is a graduate nurse. They point to me, “the one who found him”, and mention that two other grads were involved in CPR too. The ICU nurses come over to me.

“You did good, I wouldn’t have picked you for a grad, you were competent, fast, great compressions. You did everything you could to give him a chance,” one says to me.

I nod, but I cannot escape the questions in my head. Why didn’t I see it sooner? How did he aspirate so fast and so silently? What if I had found him as soon as it happened? Was it the way I positioned him? The other nurses review the situation with me and tell me that I did everything right, and that had I not been paying such close attention he may have slipped away unnoticed – not to be found until morning. There is nothing I could have done differently unless I had known the outcome, I provided the standard of care and maybe even a bit more. But my mind still wanders to this inevitable questions, because someone in my care who was alive and talking twenty minutes before I called a code, is now gone. I have never lost a patient before, I have never been present in a cardiac arrest. Suddenly the responsibility of RN weighs heavily on me, too heavy. I think about what would have happened if an AIN had been specialing the room, as intended. They may not have noticed, would not have suctioned because it is out of their scope, and may not have known what to do.

I watch the sun rise from the window around 5:30 am, it’s Anzac Day and the Ode fills my mind; it seems fitting.

They shall not grow old, as we that are left grow old. Age shall not weary them, nor the years condemn. At the going down of the sun, and in the morning, we will remember them – lest we forget. 

I look at the closed curtains around the bed, I have not seen him since we stopped compressions. I decide I will gather his things for when his wife comes in, so that she can focus on saying goodbye. I think about all the things the nurses did for me when my Nanna died, and tell myself I will do those. I do not face him until I am done. I stand by the bed, curtains pulled, and look at him. I cry for him, and I tell him that I am sorry. Not because I did something wrong, or because I think his death was my fault, but because despite doing everything right he still died. I tell him I am sorry that it wasn’t enough to save him. I cross myself and quietly pray, muttering psalm 23, straining to remember the words. Peter Benton from ER flashes in my mind, a scene where he prays over a young child and is startled to realise he cannot remember the words, feeling responsible for the child’s deterioration. I try my best, I may not be the most devoted theologian, and I do not know the religious persuasion, if any, of my patient, but I do not deny him this final respect. If nothing else, I am paying my respects, religion has little to do with it. He deserves a place in my thoughts.

The Lord is my shepherd; I shall not want. He maketh me to lie down in green pastures; He leadeth me beside the still waters. He restoreth my soul; He leadeth me in the paths of righteousness for His name’s sake. Though I walk through the valley of the shadow of death, I will fear no evil; for Thou art with me…

For the purposes of confidentiality I will not tell you his name, dear reader, but know that I will never forget it. He is part of me now, and my journey as a nurse, and I will carry him with me always. He will be with me in the eyes of every patient at the end of their life, in every code, in every deteriorating patient reminding me that there is no room for complacency in nursing. One can never get too comfortable. He reminds me that even when constantly vigilant, sometimes people still slip away, and that there are some people we cannot save.

I have watched so many theatrical codes on Greys AnatomyHouse, and ER, and it’s easy to think that one knows what to expect from the real thing when it comes along. Despite some glaring factual oversights in some episodes – shocking an unshockable rhythm like asystole, patients that have been down for over an hour waking up with zero evidence of hypoxic injury, or compressions that wouldn’t resuscitate anyone – the thing these shows fail to capture is the brutality of what we do. Bringing someone back from a cardiac arrest is barbaric – we pound the chest, force endotracheal tubes into the airway to get air to the lungs, we drill holes in bones to get access – all for the remote chance that we will get someone back. Early defibrillation can save lives, but for those who slip into asystole and cannot be defibrillated, the chances of survival are much less. We do everything we can, even when it is often futile. Greys Anatomy doesn’t prepare you for the sound of ribs cracking beneath your hands as you do CPR – better a broken rib than dead. ER can’t capture the sounds that gas and air make as you do your interventions, that often sound like pain or gagging, making the situation even more confronting. House doesn’t highlight the overwhelming sensation that is having to bury your grief, because you still have three more patients to care for, and three hours left until end of shift.

I have studied hard, practiced on mannequins and patients under supervision, spent hours as a student nurse rehearsing for the moment when a patient’s life lies in my hands, but nothing can prepare you for the weight of this responsibility. Some days when you do endless showers or toileting, you don’t feel like there is life in your hands, you’re just doing your job, getting through the day. But all of these small things we do are part of a greater picture it is often hard to see. Every line we prime free of bubbles, every pressure area prevented, deterioration picked up on, or aseptic technique adhered to keeps our patient safe.

For patients and families alike, know this. I love what I do, nursing is a passion and a calling, even outside of my preferred specialty. This love is what I give to my patients. Love is present in every textbook I read, every senior nurse I watch, every doctor I harass, every physio I beg, and every care I perform. No matter who you are, or how much you abuse me or praise me, I will give everything to care for you. My love will not let you down. My care will not let you down. I will be with you until the very end. Your loved one will never leave this Earth alone when I am with them. You may not see it, but I cry for them, pray for them, worry about them even after I leave the ward. My promise to you as a nurse is that I will always give my all, even when that is a lot to give because I am tired, or sick, or emotional. I push those things aside where I can, because you come first, you are the reason for my job.

To my first code, and first death – I will never forget you, and never forget the lessons I learned trying to save your life. May you rest in peace.

The “Big Endo” Problem

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Image Credit: Emma Plunkett  https://www.missplunkett.tv 

Something evil is happening to my stomach. That’s the only word for it. It has turned in upon itself like an animal beaten for so many years. Sheets soaked, cramps all the way up to my neck. The pain is bright and hot and numbing, fomenting in the centre of my womb. The blood flows out of me like waves of loose ribbons.

GiselleSkinny by Ibi Kaslik

This passage was the first time I had ever laid eyes on anything about endometriosis. I was fourteen and purchased the paperback from a bookshop in Adelaide on my holiday. The novel, as the name suggests, tells the story of 22 year old medical student Giselle who is afflicted by an eating disorder. As the story progresses Giselle is diagnosed with endometriosis after her period returns for the first time as she gains weight back. A period that is marked by horrendous pain, haemorrhage level bleeding, and weakness for Giselle.  If that wasn’t some strangely autobiographical foreshadowing of how my adolescence would turn out, I don’t know what is. At fourteen I had cramps, but they were borderline normal – they only lasted a few days and rarely incapacitated me, and I forgot about them as soon as the week was over, but they were there, and they hurt. I had no need for control, no feelings of anxiety, no dark place I went to when these feelings eventuated, not yet. It was just a story, a compelling and exceedingly well written piece of prose, I had no idea that Giselle and I would turn out to share so many personality traits. We picked different poisons, but the intentions were the same.

It was over a year later until the subject would cross my mind again, sitting on the library floor, leaning against a window for warmth while my two best friends played a card game beside me. It was the last day of second term and our biology teacher had let us loose in the library because we had finished the term’s work and didn’t have the texts to start next term’s work yet. I was having a not so delightful episode of cramps, episodes which were becoming more frequent, but at this point I hadn’t quite grasped their seriousness. My ever watchful teacher came to see what was wrong, seemingly disappointed that I was suffering again.

“You know, you might have endometriosis,” he said. “My flat mate has it, that’s why I think you might. She often looks a lot like you do now. You know, the pain face and the sitting on floors.”

Giselle and her catastrophic periods flashed in my mind. I thought of the chapters where she lies in her bed, incapacitated by her pain, the voice of her disease taunting her, the passage where her sister Holly uncovers the flood of blood in her bed and she is rushed to hospital, the description of the disease ravaging her organs – it was everywhere. I shook my head, that wasn’t me, this wasn’t that bad. I told him not to be silly, and that I was fine, despite his obvious skepticism. Despite the fact that in the back of my mind was a slow growing feeling that this whole business was not okay.

The depictions of our experiences in media matter, especially when we’re young. Giselle and her unfortunate tale, with all the makings of a Shakespearean tragedian, was my first glimpse of endometriosis – one that would allow me to recognise the name when a gynaecologist suggested it four years after the fact. Giselle’s endo is what I have heard Dr Susan Evans refer to as “big endo” – the stuff that on laparoscopy looks like a catastrophic mess, dark lesions, adhesions, organs stuck together. This is also often the story when celebrities share their endometriosis stories. Endo awareness is absolutely essential and celebrities, along with everyday women, sharing stories of their experiences helps to move the topic of endometriosis into public thought. However I too share the notion alluded to by Susan Evans, that by focusing on these stories of “big endo” we may be forgetting that essential fact – that amount of disease is not correlated with pain. That one doesn’t have to have “big endo” to have their pain be acknowledged.

Perhaps mainstream media outlets, like women’s magazines, are drawn to these depictions of big endo. They lend themselves to those lovely, sensationalist headlines that draw your gaze while scrolling, they seem shocking enough to evoke consideration from even the most apathetic of us. But for every story of someone with endometriosis so severe that organs are fused together and the reproductive and peritoneal anatomy is stained with the lesions of the disease, there is a story about a woman with mild to moderate endometriosis – the kind that often takes expert eyes to see – who is also in pain. The phrases mild and moderate don’t seem nearly as dramatic though, and so perhaps they often go unnoticed. I have heard women with mild or moderate disease, and I myself too, say “I’m lucky to only have mild disease, it could be a lot worse”. It’s said as though we need to apologise for not having insides that have slowly imploded over the years, apologise for our clean ovaries, our invisible scars. Why is this the case when most of us with endo, and a good specialist, know that pain and amount of disease aren’t as simple as more is more?

I have seen Susan Evans show a presentation with vision of a laparoscopy a number of times, where she shows us a normal reproductive tract, then a severe case of endo, and a more moderate case. She points out the the lovely ovaries – “beautiful even, mine certainly don’t look like that” she always quips – the recognisable anatomical landmarks, then she shows us what we may not have even seen; the tiny bubbles dotting themselves over the landscape of the peritoneal cavity. She goes on to explain that these tiny, clear bubbles may even be more painful than the dark lesions that we can see, as the dark ones have been there for longer. These fresh, seemingly insignificant lesions are often extremely painful. Susan always asks the audience she’s presenting to if we can pick who has more pain. The answer is that we can’t know. The woman with extensive endo could be in agony, or she may not have even realised her disease until she had problems falling pregnant. The woman with mild endometriosis might be doubled over in pain frequently, taking extensive time off of work or school, or she may feel very little. She often comments that the more extensive endo is a better predictor of trouble with fertility, but again, not always. Laparoscopy is not the whole story when it comes to pain.

While the message of these shared stories, the cautionary tale – do not become this, press for change, press for an answer and a referral to a knowledgeable specialist- is well taken, and so important for awareness; it is the increasingly homogenous figure of “woman with endometriosis” in mainstream media that is not. Within our endometriosis community, we hear a great variety of stories, with disease of various severity and vastly different co-morbidities, because it is a space where we have firmly established our right to exist as women with endo. Within mainstream media and society as a whole, we are still trying to break through strongly engrained notions that govern discussing “women’s business”, and it’s as though it takes something spectacular to be given permission to enter the conversation. Mild endo? Well that doesn’t sound too bad, does it? Not compared to “stage IV”, “extensive and severe disease”, or “organs adhered together”. While it seems fairly harmless to focus on these depictions of big endo in mainstream media, because at least mainstream media has sat up and listened, it matters to those women with milder disease who also experience a great deal of pain. Even more importantly, it matters to those girls and women who have not yet been diagnosed, who will look to these depictions to shape their story of what is happening to them. Like the anguished heroine in my novel at fourteen, from whom I shaped my ideas of endo because there was nothing else on offer, stories of celebrities with severe endometriosis, of hysterectomies and rounds of IVF, will be the Giselles of the next generation. It is our duty in raising awareness to present the many faces of endometriosis, because there are indeed many.

It is our duty to ensure that girls and women understand the fundamentals of this business we call menstruation, because understanding what is normal is the first step in figuring out that something is abnormal. Furthermore, we must present the stories of women with endometriosis of all severities, of different symptoms, and different outcomes. When I was fifteen I thought that endometriosis meant pain so severe that you could barely do anything, that to have it you had to miss weeks of school, or not want to get out of bed – I didn’t do any of that, so I clearly didn’t have it, right? One of the most important and powerful questions my gynaecologist asked me during my first visit wasn’t “did you miss a lot of school?”, because I of course said no. It was when he asked me, “did you want to?” that something in me switched. I thought of all the times where I had forced myself to go to school, scared of falling behind or being seen as weak, the uni classes I had sat through, praying that I wouldn’t pass out. “Yes” I had whispered. I hadn’t realised that I could still be in pain and functioning.

Awareness to me is more than mere knowledge that endometriosis is out there, in some distant, removed void from where you live your life. I want people to realise that every day they live and breathe this disease without knowing it, that is how common it is. On a crowded train as you travel to work each morning, statistically you are likely to be surrounded by more than one woman who has endometriosis. Friends, friends of friends, family, cousins, sisters, aunts, and daughters close to you have endometriosis and may not even know it. I want people to realise that there is no way to depict what endometriosis looks like, because it looks so different on all of us. Laparoscopy is not the whole story, it is not a competition over whose internal organs are the most invaded, or how many body parts we need to resect – endometriosis is a problem no matter what form it comes in. Better detection, diagnosis and treatment is for the benefit of all women with endometriosis, and in the best interests of all of us – some are not more deserving that others. All of us matter. Pain is one of the most personal and subjective experiences we can ever have, and the marks it leaves are not always easy to see; therefore it is important that we respect these experiences and an individual’s right to speak about them if and when they choose, in whichever way they choose.

It is heartening to see the conversation about endometriosis grow, for myths to disappear and more evidence-based, consistent information take its place in the public sphere. But my goals and dreams are big (thank QENDO), and I want awareness to be more than this, to be inclusive and understanding, to listen to all voices and explore all stories. So that girls and women may recognise themselves in these stories, and seek help earlier, reducing complications and improving outcomes.

Now getting doctors to do better, that’s a whole other blog.

 

 

Code of Silence

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There’s a code of silence that we don’t dare speak
There’s a wall between and the river’s deep
We keep pretending that there’s nothing wrong
But there’s a code of silence and it can’t go on

Is the truth so elusive, so elusive you see
That it ain’t enough baby
To bridge the distance between you and me
There’s a list of grievances 100 miles long
There’s a code of silence and it can’t go on

Bruce Springsteen, “Code of Silence” 

Nursing demands of one a different set of social rules, a set which can only be learned through, sometimes regrettably awkward, experience. As nurses we cross lines, break down walls, and defy boundaries in the name of health and healing. We must shun revulsion, embrace the happy face, and put aside our own problems in service to our patients. There is a talent to being able to make small talk while putting in a catheter or making someone feel comforted, and not weirded out, while showering them. There is just as much talent in smiling at an elderly patient when they turn the shower head on you, soaking you from head to toe, instead of crying “Mildred, we talked about this, if you can’t handle to hose, hand it back”. When I don my uniform I wear many faces, use many different voices, and pretend that body fluids do not smell. I am nurse, sister, hey you, whatever I need to be; I shake away my identity and take on a new one where for eight hours my problems don’t exist. I have such a talent for these skills because I have had years of practice, thanks to endometriosis.

It was a Monday morning in my second term of year eleven, the season had finally changed and the air had lost its suffocating humidity; I loved this time of year. I was fifteen years old. I have delivered newspapers to the office building, picked up a draft of my English paper from the humanities staff room, and checked the time to see how long I have before form class. It was during this mundane moment I was overcome by a pain that I had never felt before. It was like my uterus was turning itself inside out, slowly but surely, while simultaneously someone was stabbing me with a superheated knife throughout my abdomen. It was jarring, and it knocked the breath from me. I’d been having cramps for a few days, and they weren’t exactly subtle, but this was a new feeling and it took me by surprise. Walking suddenly felt impossible, but I couldn’t just plonk myself in the corridor where anyone would see. I looked at my watch again, form class was in twenty minutes or so, I could sit outside the classroom and not be bothered.  I took a dose of ibuprofen out of my bag and swallowed it hastily, praying it would bring some kind of relief. I made it to the classroom, the pain overwhelming, and I sat with my knees tucked under my chin. At this point I was used to pain, I had started getting cramps around fourteen and they hurt, but I didn’t think much of them. I reasoned that everyone had period pain and so I didn’t worry. But in all of my self scrutiny, I suddenly began to look at everyone else and wonder if other girls in my class even got their period. They didn’t look like they had pain, or if they did it wasn’t bad, all of them seemed so perfectly fine all of the time. Surely not everyone was pretending? I started to wonder, on occasion, what my problem was. It was telling that the first thing that came to mind was that my problem was not being able to handle the pain, not the aetiology of it. I decided that it had to be me, and I had to hide it. The message that subliminally floated around was that, as women, we weren’t really supposed to talk about these things outside of hushed circles, and that was where I surely had to keep this.  

The ibuprofen was having zero effect, in fact I was sure the pain was getting worse. I wasn’t sure what else I could do, I had taken painkillers and sat down, yet the feeling remained. I tried not to panic, taking deep breaths. My form teacher, also my biology teacher, was now making his way up the stairs to the classroom, early, unanticipated. When he saw me he was understandably concerned, because I imagine I looked awful, and I was mortified. This was the worse case scenario here, a teacher, a male teacher, asking questions that would quickly take them in the direction of my period. He was unfazed though. I asked him how long ibuprofen took to work, and cursed under my breath when his answer wasn’t what I was hoping for. His concern only heightened, and even though a small part of me wanted to break down and beg for answers, ask why this was happening to me, because he was nice and I was confident he’d say something reassuring; even in spite of this I felt myself straighten, erase the pained expression from my face and reassure him that I was fine. I did not escape the concerned gaze of my teacher for time, and with good reason, and as a result I began to wear a mask of sorts, one that hid what I was really feeling. I stopped talking about it to anyone, I never mentioned my pain. At times this was made easy by the remission of symptoms between each month, in this time I would forget how bad the pain was and assure myself that there was nothing wrong. When it came back the next month, I would scream on the inside and smile on the outside. My teacher knew all about endometriosis, before I did, and he encouraged me for many months to tell someone. He had proven to me already his genuine kindness and care, offering reassurances the few times he found me in so much pain I didn’t dare move,  He never lost his patience when, curled on the floor of the stairwell, I protested that I was fine and he needn’t call anyone to help, and I told him there was nothing wrong with me. He became my friend once high school was over, and he was the first person I called when I saw a specialist for the first time. 

Pain can be suffocating, both physically and emotionally, and at fifteen I was nowhere near equipped to deal with it, and yet I did because I thought there was no other choice. I pretended that there was nothing wrong for five years before I was diagnosed, and talked to only a few people about my pain, maintaining its benignity beyond a reasonable doubt. I recall at twenty years old the anaesthetist asked me about what medications I took before surgery, and he was visibly confounded when I said none. He asked me after the procedure how I had managed it considering the outcome. I shrugged. I hadn’t realised I had a choice. 

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The above collection of photos are examples of a number of times where I have been in significant amounts of pain, but said nothing about it to anyone. I wager that when one looks at these, they wouldn’t pick that later that day I would be lying in bed clutching my stomach, or sitting in a bathroom crying where no one could see me, or on one occasion passed out on the floor of my high school physics lab. Endometriosis cuts into moments of your life that you want to enjoy, it is with you in the best and worst moments of your life whether you like it or not. I graduated from university the first time two weeks after surgery, filled up to my eyes with painkillers, worried I’d fall flat on my face as I walked across stage. My first day of my perioperative placement, I made it to four o’clock before I had to sit on the floor of the locker room because I was in so much pain I felt dizzy. After my best friend’s 21st birthday party I lay on a mattress on her floor, my other friends asleep beside me, trying not to scream and trying to strike a bargain with God, thinking of all the things I’d give up just to be able to sleep pain free. Naturally, many of you may ask why I didn’t say anything about my pain, if it was so bad. It’s a fair question.

There is a code of silence, and there has been one for some time, among those of us with endometriosis and severe period pain. We frequently stay quiet about our pain, for any number of reasons. Perhaps because we’ve been raised in a world that tells us periods are something we don’t talk about outside of closed rooms in quiet tones. Perhaps because there was a time where we shared our pain – with a friend, a parent, or a doctor – and one or more of them told us it was normal, or worse, that it was all in our heads. It may be that we have been in pain for so long, that it becomes normal to us, that pain is just a background noise in the song of everyday life. We become afraid to share, sure that we are alone, despite the fact that 1 in 10 women suffers with endometriosis.

Even once we receive our diagnosis, women with endometriosis often face barriers in a number of areas. Just because we have a diagnosis does not guarantee that others will understand it, including medical professionals. Many women face ongoing battles with their general practitioners, with emergency room or hospital staff, and even with specialists. As we bring endometriosis into the spotlight through global awareness campaigns, women with this disease become better equipped to understand the range of treatments available to them and what they can do to manage pain, preserve fertility, and improve mental health. I recently attended ‘An Hour of Endo With QENDO’ with my colleagues from Endometriosis Queensland, and it was enlightening to see the number of women who left better equipped than when they arrived. We are resilient and strong, and we are tired of pretending that there is nothing wrong, pretending that we are fine, pretending that it’s okay that people think our disease is unimportant.

As endometriosis is thrust into public consciousness through tireless and brave campaigning by people affected by the disease, mythology is shattered and more people begin to understand the reality of living with pain for years on end. As more knowledge makes its way into the mainstream, critical thinking and discussion can occur to ensure that women are equipped with facts, and that we do not slip into the stasis of accepting rhetoric that is untrue because “that’s the way it’s always been”. There has been silence on this front for too long, silence from those of us that suffer, silence from politicians with a platform to encourage funding and public knowledge.

The tide has begun to turn, with the Australian government just last week announcing $2.5 million dollars towards researching better diagnosis and treatment of endometriosis, the result of work by the Australian Coalition for Endometriosis -a group made up of associations like QENDO, EndoActive, and Endometriosis Australia among others. Women are finding their voice and becoming their own advocates in light of education and support from these groups, both of which empower them to value and own their stories and convince medical professionals, family, and friends to take their condition seriously. There is still much work to do to break the code of silence that exists, which highlights the importance of Endometriosis Awareness Month happening now. Women across the globe are sharing their stories through hashtags like #theendophotochallenge2018 and #1in10, and we have a duty to sit up and listen to what they have to say. The wall between sufferers and non-sufferers must be broken down and knowledge of endometriosis must become as ubiquitous as our knowledge of diseases like breast cancer, diabetes and asthma – because they effect people on the same scale. Women’s health is more important than it’s given credit for. Endometriosis does not only effect the person, but the society around them. Pain influences partners, friends, and family; pain is responsible for loss of productivity in workplaces and has an economic impact on the wider state and country. Understanding the systemic effects of this disease is important moving forward.

It’s not just bad period pain, but so much more. We must walk with eyes open, our lips must not remain sealed, and we must above all commit to listening – to women, to their partners, and to medical professionals who have committed their practice to providing evidence based, patient centred care to endometriosis sufferers.

As I walk through the wards each day, caring for my patients, my nurse face on, I smile and my problems melt away. But when I go home, I must learn to admit when my pain is too much, to demand better for myself. I must learn to show my true face and speak up, not only for myself, but for the millions of other women around the globe who share the same fear of ostracism, of pain, of being told they are crazy. We don’t have to be afraid. If you want to go fast, go alone, if you want to go far, go together.

There is a code of silence, and it can’t go on.

A Letter To My Nanna On the Anniversary of Her Passing

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We’ll be riding the train without you tonight
The train that keeps on moving
Its black smoke scorching the evening sky
Millions of stars shining above us like every soul living and dead
It’s been gathered together by God
Sing a hymn over your bones

– -Bruce Springsteen, The Last Carnival 

Dear Nanna,

This time last year we said goodbye and I bid you a safe journey to the other side, hoping that your loving husband would be waiting for you. I often think about such a moment, imagining a dapper young Grandad in a sepia toned suit and you, young again, in your prettiest dress – replicas of the figures in old photographs. Somehow you are both her, young and elegant, and the fiery, funny older woman who is burned in the memory of all that knew her. You gave me some of the best advice I’ve ever heard, and minutes later would say some of the most inappropriate things I’ve ever heard – and all I could do was laugh anyway. You created a world where I couldn’t imagine you not in it, you fit too well and were written into the pages of too many people’s stories. This year was the first where I had to live in such a world, and I wanted to take a minute to tell you about it.

I discovered that Kellie was not nearly as enthused about surgery as you were when I told her all of my tales from the operating theatres. She tolerated my stories as far as “the floor was covered in blood” before she halted any further descriptions of the six hour femoral nail I scrubbed for during my elective nursing placement. Wimp. You not only would have loved my stories, you would have begged for more details before screwing up your face in morbid glee, perhaps remarking “Oh that’s disgusting Danni…keep going”. As each patient lay before me on the table I felt the weight of responsibility on my shoulders and wanted to do well, not only for them, but for you. You always wanted to be a scrub nurse and I wanted you to be able to watch me do it, to experience my wonder and intoxication every time I walked into an operating theatre. It killed me not to be able to sit down with you and tell you every detail and watch your laughter – no doubt while force feeding me bargain cake from Coles, because who else was going to eat ALL this food?

When my nursing duties weighed heavily on me and it seemed like I would never make it to the end of placement in one piece I thought of what you would say to me, of how proud you were of my profession. You were the angel on my shoulder making sure I didn’t chart any fake respiratory rates or forget to check the suction at beginning of shift. I saw you in the eyes of the patients I cared for at the end of their life alongside the nurses that taught me, knowing the pain that their families were experiencing. I took care of them in the hopes that their family would feel the same relief that I did knowing how well you your cared for in your final days. You taught me to walk through life with kindness and courage, even when you were afraid or tired – you just keep going. You are my indisputable proof that women are strong and capable of incredible things. There are times where I pray you are watching, and times where I hope you aren’t – when things get hard and I feel nothing like the image you always had of me. Knowing how proud you were keeps me going. I get up and last another eight hours on the ward, apply for one more job, dream one last impossible dream. You remind me that life is a gift and we don’t often have it for as long as we might think, and it’s more fragile than we care to treat it.

The love you gave to your friends and family unsparingly pushes me each day to be a loyal and caring friend. You were friend to so many, but those who were your closest friends still speak of you with laughter. The insane stories were endless, and you spoke to them with the same gentle savagery that often permeates my own friendship group. I’m certain you partied harder than my friends, drank more gin, and stayed up later – age was no barrier when one had the right companions. I look at my own group of beautiful friends and think, I want us to never change and still laugh exactly the same way as we do now when we’re sixty, or eighty.

Not a day goes by where I do not think of you, or Grandad, or Gran. But, as the esteemed Albus Dumbledore teaches us, the ones we love never really leave us. I hope you’re happy where you are now, dancing with Grandad, gossiping with old friends, watching this world go by. Your children and grandchildren, your legacy, spend their days making you proud and missing you dearly. There are so many things to tell you, jokes to make, politicians to laugh at, food to try, and love to give. As I eagerly await news of jobs and my graduation, I am only sad that you aren’t there in person to see it. Keep watching Nanna, things are about to get interesting.

Until We Meet Again,

Dannielle

P.S. Kellie has a dog, it’s cute and has its own instagram page – no, I’m not kidding, of course a dog of Kellie’s is destined for fame – there is no other way.

(Love you Kellie)

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The Crackpots and These Women

An Ode to Women with Endometriosis in Their Quest for the Holy Grail of Specialists.  

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I am eighteen years old when I step into the small waiting room of my specialist for the first time at the private hospital on the hill near the river. I admire the comfortable tub chair that I am seated in, much more inviting than the too-soft couch at my GP’s office that often threatens to make me look like an invalid falls risk as I stand to see the doctor. Eighteen year old me is much difference to me now. Her major is still English Literature, not nursing. Her firm belief is that her Masters degree will be in teaching. She is still worried about the physiology class she is missing to be at the appointment. Most differently, she doesn’t think that her pain is anything to worry about and her greatest fear is wasting the time of this doctor and that he will tell her to go home and try yoga or ibuprofen. Little does she know that by the time thirty minutes is up she will have a name for what she has been experiencing since fifteen and a surgical consent form to go and find it. 

I can still remember everything about my first specialist appointment, what time of day it was, what I was wearing, and the class I had skipped to be there. In the grand scheme of things missing one lecture on cardiac muscle turned out to be harmless, especially after going to nursing school and knowing everything I could possibly want to know on the subject. The green blouse I was wearing has since been worn to death, like every item I clothing that I believe makes me look thinner. But I have since memorised every detail of that waiting room because I have been back there so many times. The man himself is a kindly, older gynaecologist with a speciality in endometriosis who is well known for being “one of the best”. I came to him by accident. My GP gave me the referral after she wasn’t satisfied that I had control over my cramps, an issue I’d raised in passing, more of a curiosity than a complaint, at the age of sixteen. I barely bothered her about the pain because I was convinced, with no evidence mind you, of its benign nature and that, like so many other women, it was mine to bear. However when she realised that I’d told her about it first when I was in year twelve and was now in second year university, she was firm in her recommendation that I have a specialist referral. “I know a guy”. Doctors always sound to me like Al Capone when they say this – like their referral list is actually a little black book of “professionals” who will “take care of things”. Whatever, I accepted her guy. I didn’t even realise how lucky I was to have been referred to an endometriosis specialist, a rare bird, who knew his stuff and would have the surgical expertise to diagnose and treat endometriosis when he found it. I didn’t know what I didn’t know. But I was comforted at eighteen by this considerate doctor, who listened to my story and helped me make sense of it, made me realise that behind the reassurances of my mind was a mild yet ever present panic that it wasn’t okay to sometimes wonder if your period would require a trip to emergency (even if every time I came close I talked myself out of it – “it’s fine” she says, even though moving or breathing too hard is really out of the question). This same guy took my hand through surgery, and delivered me my diagnosis on the other side. He reassured me when my pain persisted and sent me for scans so that I could see the proof. When he thought I needed more help with pain he gave me a referral. Her guy did good.

I am twenty years old when I sit in another waiting room at the private hospital on a completely different hill. I have the day off classes because in nursing school you can’t just skip them anymore – all are compulsory. I spend an hour with a knowledgable woman who explains the science of pain to me and gives me medication to help. This is on top of the three new medications I have received from my specialist – I’ve started writing them down to make sure each doctor I see knows the score. I have my diagnosis, I have my treatment – but I’ve never been in more pain. I just want to know why. But going back and asking all the time is an expensive undertaking. I am exhausted, and I wish it wasn’t so hard. I am comforted by my new colleagues who are understanding when I tell them that I have endometriosis, because inevitably it couldn’t be hidden forever. Twenty year old me doesn’t know it yet, but she’ll get through this and her pain will be the best controlled it’s ever been – but it happens by accident, a combination of forgetfulness, reading the nurses’ drug guide, and becoming her own advocate. 

The conversation I have most with other women with endometriosis is about the doctors and professionals we see, because everyone’s got a recommendation and a warning after so long fighting. My list is short and not filled with any horror stories, I love my guy and am just glad I haven’t had cause to bother him for more than twelve months. But others have war stories. Tales of GPs who never listen, of doctors who use “like giving birth” as context for a pain scale (um, rude), and specialists who are brilliant surgeons but don’t know much about what to do with you afterwards. There are also successes. The discovery of a specialist who just “gets you”. Finding a multidisciplinary practitioner like a physiotherapist who has a vast knowledge and experience with endo and wants to work with you to help with long term pain relief. But more often than not these wins are littered with stories of women who had to push on when they wanted to give up, of treatment that makes you cringe at best, cry at worst. Getting a primary health physician to take one seriously is half the battle, but often it doesn’t stop there. Patterns of referral suggest that most women who present to general practitioners with endometriosis symptoms, even multiple time, are not referred to gynaecologists. Management of endometriosis cannot be left to just any gynaecologist, otherwise they are liable to miss things or lack the requisite knowledge to provide women with the best outcomes. But even endometriosis specialists aren’t perfect. There is a great challenge in being a specialist physician, as evidence and recommendations are constantly changing and evolving and responding to this can feel like sandbagging a beach while the tidal wave bears down on you. Some doctors become set in a certain way of doing things, even though evidence may suggest this way is no longer optimal practice. The attitude that endometriosis can be cured via hysterectomy or pregnancy is one that prevails even among specialist doctors, and even more so among those without specialist training. The goal of surgeons is often focused, cut it out and stop the bleeding. Excision, as opposed to ablation, is certainly now the gold standard for helping reduce disease and prevent it growing back and it’s the first step – but it’s not the last. Overall a more holistic approach is required, because endometriosis effects multiple systems within a body.

Has anyone really found the perfect specialist? Do they exist? There is evidence with most chronic disease, endometriosis included, that a multidisciplinary approach is more likely to convey long term success, because no one can know everything there is to know. As a member of a multidisciplinary health team I tend to value this assessment – I can’t do my job in isolation, my patient wouldn’t get the best treatment otherwise. My experience after surgery also helped me realise this. There was a point where my specialist knew he needed to provide me with other resources, and that doctor further provided me with referrals to other allied health professionals based on what was effected. I also learnt a lot on my own, because I came to realise that I had to become my own advocate, armed with facts when I fronted to an appointment. The experience of of having symptoms dismissed or normalised both prior to and after diagnosis gives rise to what is known in literature as the expert patient. This is a story I’ve heard from many women, those who researched and stood up to specialists who dismissed them or told them not to worry. Those who presented doctors with their own research and actually had that doctor listen and respond to them. I had the benefit of learning this skill and gaining confidence as I went through nursing school, because I learnt how to communicate the needs of my patients to doctors and how to advocate for a patient. This was the advice to me of women who had been through so many doctors, learn to be your own advocate and do your own research. It is an unfortunate fact that endometriosis is not well known in the public sphere, despite improvement thanks to a number of organisations dedicated to the cause, and that knowledge about the disease is not consistent among doctors. Research papers are scattered with the stories of women who have felt betrayed by the medical profession, and the feeling of happiness and relief when someone finally understands.

But all of this is hard work, and having to research, pull together your own team of professionals, attend appointments, manage symptoms and still somehow manage to have a professional and social life can be draining. Dr Kate Seear calls this “the third shift” and accounts for another facet of unpaid work by women in addition to domestic duties. We shouldn’t have to work this hard, should we? Evidence points to a need for greater education of doctors to increase both their acknowledgement of symptoms and empathy for patients’ distress, it also highlights a need to respect the patients’ knowledge and recognise them as an expert in their care. This notion is in line with the concept of patient-centred care. Patient-centred care is drilled into nurses from day one of their degree, it’s an approach to health care that is grounded in mutually beneficial partnerships between health care providers and patients – where the patient’s goals and wishes are just as important as the practitioners. This approach recognises patients as capable of being experts in their own care. In the UK, an emerging role is that of the clinical nurse specialist in endometriosis – their role is set out by the Royal College of Nursing and includes postoperative followup, utilising “women-centred outcome measures”, organising referrals to the multidisciplinary team and being available to answer questions and provide psychosocial support to women with endometriosis. The role is not currently widespread and few health services take advantage of this nurse-led model, despite a wealth of evidence that nurse-led programs for various chronic diseases are associated with better outcomes. Perhaps what women need is not the Holy Grail of specialists, but an organiser, a mediator, an understanding ear. Surely we could outsource the third shift to an expert? Having a specialist nurse help one keep track of multiple professionals and act as an advocate when one is feeling lost or dissatisfied with the care they have received. Scope exists for this role currently, most likely in private practice (as with most things they tend to start here to prove their worth before the public system invests). Fertility nurses currently provide a similar role for those undergoing treatment for infertility – the fertility nurse is your go to, they provide you with information, perform tests, organise follow up and ensure you’re seeing the right professionals. They work alongside a specialist doctor, but one gets the benefit of continuity of care, as well as an organiser – a professional patient advocate!

As knowledge of endometriosis grows among the women who have it, it is undoubtable that they will begin to demand more of a system that has historically sidelined them, fobbed them off, and left them wondering if they’re actually insane. The unpaid work and emotional burden of a chronic disease with far less attention and research funding than others is significant and cannot be ignored. These women gather and share battles and victories, about the best, the crackpots, the men and women who changed their lives in the quest for answers. These women are strong and brave because they have to be, and having been both patient and practitioner I know the medical profession can do better. Patient centred care is not a marketing campaign or a company line, it’s in the everyday interactions we have with our patients that prove to them that we put them first above all else, and that when they talk we listen. At eighteen I didn’t know how to make myself heard, or that I even needed to be heard – but I had a doctor that knew my story was important and fought for me. Every patient deserves such a person, and it is my hope that through the hard work of organisations like EndoActive, QENDO, Endometriosis Australia, and Endometriosis UK (to name a mere few) that more people will realise the need for such courage, that the men and women of medicine will fight for their patients to receive their diagnosis and treatment.

More often than not the answer to basic questions in medicine are right in front of you, you just have to know how to listen.

I am twenty-two years old today. In November it will be two years since I had surgery to diagnose my endometriosis. In that time I have learnt so much about this disease and talked to so many women who have walked the same streets and felt how I have felt, they are inspiring and a blessing. I have become a support worker with an endometriosis organisation so that someone else has a sounding board and can become empowered to be their own advocate. Twenty-two year old me doesn’t know what will happen in the future, whether her endometriosis will grow back, whether she’ll have children, whether she can handle if either of those things happen. But she is hopeful, because she has a network of inspiring endo sisters that reach the farthest corners of the world and some who regularly meet just kilometres away, as well as a trusted specialist – the guy, I bet on the right one.