January 09, 2018

The recovery.

The first time I actually got a real glimpse of the intensive care unit was as I was leaving. Until then, I had seen nothing more than a revolving roster of nurses. The white walls and ceiling. Knowing nods from my doctors. Warm smiles from my beautiful family.

As the curtain was thrown back and my bed was nudged toward the exit, I realised I was leaving the ICU before I had actually even seen it. I only had a second to find enough pain tolerance to twist my head to the left and steal a quick look. It was more private than I had envisioned. I had anticipated a barn-like layout of beds, filled to capacity with the critically needy. But it was really a series of three-sided rooms, all opening onto a central nurses station, which was adorned with cards and flowers and posters outlining the hospital’s commitment to each of us. In the light of day, it was a perfectly pleasant place. Still, I couldn’t get out of there fast enough.

Before my surgery, when I had found out I was going to ICU after my operation, I was intrigued. Mildly enthused, even. The ICU seemed very ‘real hospital’. I had done plenty of nights on the hospital’s wards, and if I was to endure more quality time at Epworth Eastern, I deserved a cursory diversion to the ICU. Particularly as I was assured it was an opt-in decision. A routine elective precaution, according to my surgeon. More an exercise in risk management than life support. There were no major risks and my pain would be more-than-managed. This was about making sure I had one-to-one nursing care, should anything crop up. So that sounded like something I could handle.

 

I have attempted to approach each aspect of my cancer treatment with this degree of idle curiousity. If I am inquisitive, I am more likely to ask questions, more likely to get answers, and considerably less likely to subject myself to a torrent of internalised angst and anxiety. I guess some could view my enthusiasm as denial, or even naivety. But I am a person who thinks about things. No matter the situation, I tend more toward absorbed than apathetic. And generally, I do it with a smile. Of course I was going to be in pain. Of course I was going to feel revolting. But I have felt plenty of revolting pain this year, and at least I would be learning something while I was participating in this round.

And then, I woke up in the ICU.

There were two problems, really. The first: I had been given an epidural that had failed, spectacularly. An epidural is a pain management procedure that involves the injection of local anesthetic into the space around the spinal serves in the back. The anesthetic numbs, or blocks, the nerves, providing very effective pain relief with very limited side effects.

An epidural is a common procedure for managing a woman's pain in labour, but is also an option for surgical pain. I had discussed my pain management options with my anesthetist in the days leading up to my surgery. She had called me to make sure she understood my requirements and I understood the risks. I hadn’t had an epidural for labour with Joshua and really knew nothing about the procedure. Stretched out on the couch, watching the sun descend behind the trees in my backyard, I had listened as she explained how an epidural worked, and why it might be the appropriate choice for someone who was particularly sensitive to pain medication, yet required a bucket load of pain management. Someone like me. I felt comfortable and agreed and settled back into the couch, dozing off as the sky filled with vivid dusk colour.

When I woke from my surgery in the ICU, I was in an inordinate amount of pain. For some time, I wondered if I was supposed to feel this way. Perhaps this is just how bad it is? And if so, how the bloody hell would I be feeling without the epidural?

The nursing team test the block provided by an epidural by placing a bag of ice on the skin, and noting where it can and cannot be felt. When the nerve block is working effectively, the freezing touch of ice cannot be felt by the skin. This ice test is performed regularly, to make sure a patient’s pain is being effectively managed.

Starting at my shoulder, a nurse positioned the ice and asked “can you feel this?”.

“Yes”.

Then, she dropped a few centimetres down my chest: “And this?”.

“Yes”.

The answer should have been no by this point.

“Oh. Hmm. And this?”.

“Yes”.

It was freezing, and my tortured body hated it.

“And this?”.

“Yes”.

We proceeded this way until we reached my thigh, where I confirmed I couldn’t feel the ice, meaning the epidural had blocked the pain receptors in my left leg, running all the way down to my toes. The issue here, of course, is that the pain generated by the 35 centimetre-long incision to my chest and belly was not, as it turned out, assisted by a pain block to my left leg. I had woken up from six hours of surgery with essentially no pain relief at all.

Quite the pain predicament, all things considered. And yet, tolerable, compared to problem two.

Shoulder tip pain. I had experienced a version of shoulder tip pain when I was first diagnosed with metastatic colon cancer. The lesions that had spread to my liver were causing the organ to swell inside its capsule, which was pressing into my diaphragm and generally overcrowding my chest, causing nerve pain to radiate upwards and settle in the tip of my shoulder. It was irritating. Sometimes, sore. Occasionally, painful. I could handle it.

What I experienced upon waking in ICU, and for the four days that followed, was another thing entirely. Excruciating, agonising pain. The kind of pain that sends you out of your mind, clawing at the air and expelling deep, grotesque howls. Not everyone experiences shoulder tip pain following abdominal surgery - but those who do are members of an especially loathsome club.

My single worst encounter with shoulder tip pain came sometime during night two in ICU. I couldn’t put a sentence together. I was clearly in a bad place. It was time to address my pain relief.

I have a history of nasty reactions to drugs. They make me vomit, they make me light-headed, and they generally make me wish I had just tolerated the pain. Endone is a no-go for me. Even codeine is on my hospital allergy list. I had not researched my pain relief beyond my epidural, comfortable that I understood my pain management choice and its implications. And I have never been anywhere near a recreational drug.

Meaning, when I was told I was to have a bolus of ketamine, I really had no idea what I was in for. My husband had an idea. He has a family full of health professionals; and, as he likes to remind me, he is considerably more ‘street’ than me. His eyes met mine; he nodded. This was going to help.

My nurse worked quickly to hook me up to the drug. He mentioned pain, and relief, and hallucinations.

I heard it before I felt it. A roaring of white noise, like a hundred waves crashing as one through my ear canal. And then I saw it. Patches of black and green, light and dark. I was suspended above my own body, and was aware of many other bodies stacked up around mine. Limp limbs and blank faces. So many bodies. The noise was louder and the lights lighter and the darks darker than I had ever known them. And then, I heard him calling my name.

“Nicole - Nicole can you hear me?”.

It took me a moment to work out it was the nurse. It took me another moment to work out how to speak.

“Yes”.

“How is your pain?”.

“No pain”. I hesitated. “But I do not know who I am or where I am or what I am”.

I passed out soon after.

I am not sure I would classify this experience as pain relief. This felt much more like a tranquiliser. A hostile sedation. A forced and (I suppose) necessary disassociation from my traumatised body. The sensations evoked by the ketamine were so violently unfamiliar that they left me feeling disturbed. Even violated. I felt suspicious of the nurses and held my hospital blankets close to my body. Perhaps this mild paranoia was a side effect of the drug. For the next few hours, every time I closed my eyes, I continued to hallucinate. It was as if I dropped into a deep, tormenting dream, that I could pull out of if I opened my eyes again. Not a particularly restful path to sleep.  But for a few hours, at least, I dozed.

I did my research after my experience on this drug. Ketamine functions to induce a trance-like state, and can be used to manage pain. It is an anesthetic. And a horse tranquiliser. And a highly sought after recreational drug. I cannot fathom the motivation to take this drug by choice, as a recreational escape from life. My ‘situation normal’ in that hospital bed was pretty dire, but I am still not sure the ketamine was a preferable alternative. I felt so invaded by this drug. So shaken. How bad did life have to be to make this an attractive option to a recreational drug user? It certainly made me think.

As time passed, my shoulder improved. Marginally. I slept and I woke and I slept and I woke for three days following my surgery. A physiotherapist visited me on day one, and I made it plain that I would not be standing up. They visited again on day two, and I tried to stand and failed. And on day three, I made it to standing. Barely. And then, to a chair. For a moment.

I worked up to the idea of sipping water and felt like I was doing well to keep myself hydrated - one of the first steps to recovery. In reality, I had buckets of intravenous fluids running through me and my catheter emptied my bladder without a hitch, making me feel like much more of a water-sipping superstar than I actually was. My nurses visited regularly to test the block being offered by my epidural. Each time, the freezing ice made me wince. Each time, I confirmed the pain block was not touching my abdomen. Each time, they appeared surprised. My shoulder tip pain continued to flare. I had two more bolus doses of ketamine during my time in ICU - both were atrocious and did little for my shoulder.

My epidural needed to come out before I was going to be allowed to leave the ICU. This is because the nurses on the hospital wards are not necessarily trained in monitoring and maintaining an epidural. Once I caught on to this, I commenced a very overt ‘the epidural is over’ campaign. I needed to get out of the ICU. I desperately needed a change of scenery.

Mine was a complex surgery, meaning I was being visited by both my liver and bowel surgeons, my anesthetist, the ICU doctor and an assortment of other interns, experts and physicians on a daily basis. My healer headcount made my mission to remove my epidural difficult, especially given my primary complaint was pain. Each time they asked me about pain, and I confirmed I was in pain, they discussed adjusting my epidural to make it work. But I knew my epidural was not helping my shoulder tip pain and could not reach my wound pain, rendering it not much more than a leash to my ICU bed. And as much as I had relished my experience as ICU tourist, I was ready to depart.

After countless discussions, a small tube was pulled painlessly from my back, and within moments I was being pushed out of the ICU. This happens so regularly in hospital - one moment you aren't, and then you are. We paused outside the door as we attempted to navigate the crowded halls. The walls were covered with a bright Melbourne Cup display, pairing staff with their lucky horse for the race that was to stop the nation in another two days time. For a moment, hilarity ensued as we attempted to push my bed around a small stuffed horse that stood fearlessly in the hallway. The 61 staples holding my abdomen together reminded me that nothing, actually, was to be laughed at. Not now, and quite possibly, not ever again.

My arrival to my private room was delightful. The pain remained. But a perfectly humdrum silence descended. After the beeping and bustle and buzzing of the ICU, not to mention the assault waged on my senses, I savoured a moment of quiet.

My catheter was promptly removed - a not so subtle hint in the world of nursing that it is time to be out of bed. A charming physiotherapist visited me to make it happen. I knew it was time. I wanted to walk more than anything, but my shoulder pain had been so acute that my best intentions to move had been derailed every time. My mother-in-law is a midwife, and this physiotherapist instantly put me in mind of how I imagine her at work. She was warm, she listened, she took her time to understand me; but nothing was going to get in the way of her plan for me that day. I would be walking today. And I did. First to the chair. And then to the door. And then down the corridor. Her expert care made it happen. I wrapped my arm around her shoulders and she wrapped her own around my waist. I was finally out of recovery. I was officially recovering.



My stay at Epworth Eastern featured so many of these moments. Interactions with experts who empowered me to reach my potential. We all have a role to play in navigating the transitions we face as patients: from admitted to surgery to recovery to recovering. The way I see it, health professionals are our enablers. I chose to move forward that day. To put the work in. However, I simply wouldn’t have made that decision without the professional guidance that was provided. I needed someone to tell me it was okay to push through the pain. Patients need doctors and nurses who are competent enough to do their job, and confident enough to show patients how to do theirs. I consider myself extremely lucky to be working with a hospital who believe in partnering with their patients. No sponsored hype here - simply truth.

Once I could take myself to the bathroom, I graduated to taking myself to the hospital’s cafe. And then, for a walk outside. I showered, for a few days with the assistance of a nurse, and by day six, by myself. Weeing and walking and washing - all such quantum leaps of independence for someone recovering from surgery like mine. And then, that night, the moment we had all been waiting for. The question I had been asked for the last three days, by every visiting nurse, doctor and surgeon. Finally, it was a yes: my bowels had opened. My brand new bowel (a leaner, more compact and sporty design following its 25 centimetre crop) had worked out how to produce a baby poo. I had ticked all the major boxes. My hospital discharge was in sight.

There were some especially precious moments for me during this hospital stay. Once I was released from the ICU, Tim stayed with me every night. He is my true partner in life fighting and with me for every step. Even if that means sleeping on the floor at the foot of my hospital bed. He is, quite simply, magnificent. I have so much gratitude for my tribe, who kept Joshua happy and thriving, away from his Mumma and Dadda. It was wonderful to have him visit. To have anyone visit. Including my bowel surgeon's kids, who dropped by for his weekend rounds. They greeted me politely and assisted in inspecting my drainage bags. Their visit put me in mind of all the future adventures I would share with my own little man.



I woke up on the 8 November 2017 feeling tired and emotional. I cried, and Tim held me. My bowel surgeon had told me to expect a degree of emotional breakdown at around this time. It was as if the nervous energy that had carried me through my surgery and recovery to that point was finally sapped. I was overwhelmed. I couldn’t pick apart my emotions anymore. I was spent. It was the perfect time to be told I could go home. My doctors have maintained a fairly aggressive stance when it comes to recovery, across all of our discussions: the sooner we have you in your own space, the sooner you will feel better. My nurses were concerned, and checked and rechecked with me: “are you sure, you are welcome to stay, we are happy to have you”. I was sure: day eight would be home time. I was mentally, emotionally and physically exhausted. Detaching myself from the hospital’s care felt terrifying. But I needed to take the next leap, into the deep end of recovery, where I would bob around for a while, better, then worse, defiant, then defeated. I would eventually figure it out. I could do this.

Tucked into my own bed, with Joshua’s baby monitor casting a watchful eye over me, I slept. And ate and slept and washed and walked and slept. These had been the most physically distressing days of my life. I had lost seven kilograms in eight days. I once again found myself at the dreary pit of my own physical fitness potential. Yet again, I needed to figure out how to make my body work. How to eat. How to poo. How to move.

And despite all of this, I felt more mentally fit than I had for a long time. And emotionally, triumphant. We had just cut out my active cancer. Only seven months ago, I was told this was not an option, and likely never would be. My body had beaten the odds, the steep, steep, odds. I was a champion. It was never going to happen, until it did.

In my fight for life, there is no duel. I am the only competitor. The only person with both the ability to engage in the battle and the courage to execute the moves required. I am my life’s champion. It will only ever be me. Bring on the next round.