The Appointment to Decide My Fate

It was too late to take back the words although I desperately wished he would. They coiled on the table in front of us, poisonous. I didn’t want to touch them. I didn’t want them to touch to me.

I had prepared for this outcome, but only in a vaguely abstract form, a worst possible scenario that couldn’t possibly happen to me. A nightmare from which you wake, clothes clinging to damp skin, but with the cool, soothing touch that it wasn’t real.

What is it about the human condition that somehow in a way we believe we are invincible? We all know people who have been touched by cancer, by death, by disease and illness and while it affects us, frightens us, horrifies us; somehow we never truly believe it could happen to us.

But there it was, the worst possible scenario, laid out on the table, no longer a scary demon of a possibility but a living, breathing tangible reality.

I couldn’t look at Mum who sat beside me. I could already fill the tears banging at the door of my eyes, demanding to be let in. I could feel the tears sitting at the base of my eyes. Like a bomb. Like a tiger waiting to pounce. Just keeping them in made them eyes glisten.

If I looked at Mum I would not be able to control them.

I shouldn’t have worried. The truth, his words, they sucked all functions out of me. I simply stared at him.

He sighed. He looked as defeated as I felt.

“I think we are going to have to face the fact that the implant has loosened and I am going to have to take it out,” he repeated.

The infection had not improved. Despite the pumping of savage IV antibiotics into my body for the past six weeks, they had been of little consequence to the beastly infection. What’s more the infection had killed enough of the bone to make the implant loose inside the bone. And yet still the infection sat perched on the tip of the implant, refusing to give up it’s position like an angry hissing cat told to get off the lounge. But it was ignoring the orders, refusing to budge.

My beastly infection in plush form

My beastly infection in plush form

This explained the pain. And it seemed only in that moment when Munjed saw my face, my reaction when he applied pressure to the implant, that he believed me, believed the truth. Believed the level of pain I had described was real and was as bad as I was saying. Before I felt he had seen me as the girl who was crying wolf. But the wolf had been there all along just hiding out of his sight until now. Now it had stepped forward snarling, no longer to be ignored.

Mum and I had risen early for the appointment with Munjed. It had been a week since I had finished the course of the IV antibiotics and had my picc line out and yet I still could not take one step with my leg on without excoriating pain shooting up my bone. This pain was unlike anything I had ever felt before. It did not make it near impossible to walk, or allow me to walk with gritted teeth while pain danced up and down my leg. It made it impossible to walk full stop. There was no way I could take a step. It was not a pain to struggle through. It was a pain that stopped you dead in your tracks. There was no fighting through this pain, there was only surrender.

It had all started gradually and then suddenly like a sun shower sneaking up on you and catching you unawares then pelting down, soaking you.

It was the last week in February and for the first time since December, since my fracture and battle with a small infection, I felt back to my old self. Good as new. My leg felt great, my walking felt easy and effortless and my spirits were soaring. I was in love and the next week about to start uni and my next adventure. I may have overdone it with the walking on the weekend (old habits die hard right?) and the next day I was a little sore. I wasn’t worried. I was just getting back into things and perhaps I had been a little enthusiastic. I knew if I took it easy that day I would feel right the next.

And then two days later, during my orientation session at the university I felt a searing pain shoot up my bone. I felt like I was walking on a knife tip and putting any pressure on my right leg was agony. I sat and rested praying when I stood again the pain would have lessoned.

I had a bridging biology class that afternoon which I was attending to hopefully bring my struggling science brain up to speed before I officially started uni the following week. The teacher was dissecting a bone and a lamb’s brain that afternoon and the students gathered around the table as he wielded the scalpel and cut with surgical precision. I tried to stand with as little pressure on my right leg as possible. Trying desperately not to disturb the pain.

Dizziness snuck up on me like a light-footed burglar intending to steal my consciousness. I felt the room spin and become fuzzy, narrowing to a small tunnel.

‘Oh crap,’ I thought. Please don’t let me faint now. Not while he’s doing this. Everyone will assume I am fainting due to feeling squeamish around blood and body parts. Only I would know the truth.

I slipped to the back of the crowd and took a seat, breathing deeply and hoping desperately to stay conscious.

The spell passed leaving me with a throbbing headache as evidence of its brief appearance. I figured perhaps I just wasn’t well.

The next morning I clipped my leg on as usual and stood in front of the bathroom mirror cleaning my teeth. I felt the familiar dizziness return and the room began to sink away.

I called for The Boy to come help. He scooped me up, a concerned look on his face as he placed me gently on the bed where I remained until the spell passed.

I worried the fracture had returned. That my exercise session on the weekend had been too much too soon and I had reinjured myself. X-rays, and blood tests were called for. All came back fine. Once again my pain was a mystery. Like so many times before no one, no doctor, no surgeon, no physio, could explain my pain. And so it was ignored.

The week I started uni was supposed to be a period of excitement, new beginnings and new possibilities. And it was. I loved my classes, my subjects and meeting the vast array of interesting people studying with me. To my surprise there were plenty of students with backgrounds as surprising and diverse as mine and many were my age.

But ever present with me in class was a deep and unrelenting pain. I returned to walking with both crutches and could barely apply even the faintest pressure through my right leg. I walked slowly and gingerly with gritted teeth trying not to show to my new friends just how much a struggle each painful step was. Even sitting down brought no relief. I would stare at the tutor out the front of the room and their words would wash over me. While I tried to grasp at them and pull them close my mind was occupied elsewhere. It was taking all my strength to breathe through the pain. And each glance at the clock was a silent desperate plea for the minutes to slip by so I could get home and get this torture device of a leg off. Or if I couldn’t do that, at least let it be time for another pill. At the start of this journey I had been stoically anti-drugs. I resisted them and fought against them. But that week I gobbled them like candy. My days were reduced to four hour blocks of when I could take another pill. I took multiple types of painkillers like a desperate addict and took them dutifully every four hours even at night where the pain stole my sleep.

During class not only did I struggle with keeping the pain at bay it was also a futile struggle against the drug-induced drowsiness that pain killers bring. The sort of tiredness where just staying awake was a full time job. And yet in a bitter twisted irony, at night when no matter the amount of drugs I had taken, sleep eluded me.

But I was determined not to miss a moment of this first week of uni. I was too excited and so I struggled through, escaping the moment I could to return to the couch and pull my leg off. And even that provided little relief. Even at rest, without the leg, the pain danced up and down my stump. Sometimes sharp, other times crushing, like my leg was being twisted in a vice.

Heat packs were applied, drugs were swallowed and yet I could not rid myself of the pain. There was never a moment of relief. The only sweet snatches of relief was where the pain was slightly less. A five rather than a nine. My ‘happy’ spot was when I could breathe, concentrate on something other than pain and I wasn’t crying. Either than or asleep. It was not a sustainable life.

One night the pain was so intense, I became like a wild thing. Tears filled my eyes, I nashed my teeth and my whole body writhed. It felt like I had been hit with the torture curse, Cruciatus, from Harry Potter. I couldn’t lie down to sleep, it was so intense. The only mildly ‘comfortable’ position was sitting up. The Boy in his sweetness held me in his arms and stroked my head soothingly as he sat beside me in the bed until my head dropped and sleep greeted me. I felt a surge of love for him.

The surgeon rang to check up on me during that week. He was worried by the level of pain I was experiencing. He couldn’t logically work it out. He spoke of a possibility of the implant being loose and maybe needing to be removed but he mentioned it casually and not with any real seriousness. Like he had before he told me I needed to be sure of my understanding of the pain scale as what I was reporting was very high levels of pain which had him worried. He told me to come and see him the following week.

I like to think I have a fairly high pain threshold. After that Tuesday night spent sleeping sitting up, I didn’t think the pain could increase anymore. But a few nights later the pain could not be subdued. I tried to lie in bed to sleep. I tossed, I turned, this way and that. The pain made my body dance, it could not be still. I writhed and contorted. I tried to sit, maybe that would help. It did not. I cried out, a strangled verbal incantation of the physical pain. I stood and bent over the bed searching desperately for a position that would lesson the pain even just a fraction. Even for just a second.

A new wave of pain gripped me and I couldn’t contain it, a primal scream escaped my mouth and my parents burst into my room with looks of part concern and part panic.

I cried out again. I wished desperately to be able to leave my body to watch it from above and take a break from this hell.

“That’s it, this can’t go on. We have to take you to hospital,” Dad announced. I had no energy to disagree even if I had wanted to. All I wanted was for the pain to stop.

I felt like a mother in labour as we sped through the dark to the hospital. My parents in the front, me in the back trying to breathe through each contraction of pain which gripped my leg. The streets were empty. The lights in the windows of the houses we passed were dark, their occupants long asleep.

We were seen by a triage nurse immediately who asked a series of questions with a clinical yet concerned precision. My story, my history, felt convoluted and exhausting as I explained how I had ended up here. I just hoped I would be deemed serious enough to be given a bed and not have to wait with the dozens of people sitting outside in the waiting room.

Thankfully I was and I was wheeled to a bed where I was left for a considerable time. Nurses walked by but they bowed their heads or looked the other way in an attempt to ignore me so none of them would have to stop and do something.

More tests followed. More scans. More sleepness nights. All the while the pain danced its wicked dance and laughed manically.

I was admitted to hospital after they discovered a staph infection raging rampant in my femur and on the tip of the implant. Munjed, along with the Infectious Disease doctor were positive that after a good course of IV antibiotics it would clear up, the pain would subside and I would be able to walk again. I was prescribed a course of six weeks IV antibiotics through a picc line.

Munjed had been worried. He spoke of operating, debribments and a long hospital stay but he was hopeful. Positive this infection could be brought under control. I was devastated by the hospital stay which meant I had to miss my uni classes and would fall behind. All I could think was how it was the worst timing, here I was just starting my course, my new life and now I had to be yanked from it into a hospital bed. I brought my anatomy and biomed textbooks with me and studied as much as I could but the constant nausea and headaches brought on by the antibiotics made memorizing bones, muscles and cell functions difficult. The ward doctor joked he could take me downstairs for some hands on experience.

But despite what I was missing I rejoiced in the simple fact the drugs had silenced the pain. After weeks of unrelenting pain, of never a still and peaceful moment, this was blissful. I slept for the first time in weeks and smiled at just being able to lay, sit, exist without the pain twisting and contorting itself around my leg.

Being an amputee on crutches while attached to an IV pole brought its challenges. Trying to crutch to the bathroom while dragging an IV pole was impossible so I invented a swirl type of dance where I twisted my foot and my hips back and forth to be able to move across the room. There was my exercise for the day but I felt triumphant being able to have this small independence.

And Munjed and the Infectious Disease doctor seemed happy. They were pleased with the drugs attack on the infection and confident they could win this battle. I wouldn’t need an operation and they were hopeful I would be able to walk without pain in a couple of weeks.

But the best news was I wouldn’t have to spend the six weeks while I was on the IV antibiotics in hospital. I would be able to have a portable bottle which I would change daily. This meant I would still be able to go to uni and live a life which still somewhat resembled normal. Albeit one where I carried around a bottle of IV antibiotics in a bum bag and was attached to me via tubes in my arms.

Rocking some sweet Picc line IV fashion

Rocking some sweet Picc line IV fashion

The catch? The only hospital that offered this service was the John Hunter Hospital in Newcastle which I would have to visit regularly throughout the six weeks. It was close to uni which worked well and The Boy just so happened to live around the corner from both. The plan was I would move into The Boy’s house for the six weeks. I was nervous. We had only been dating for a few months, was our relationship ready for this? Was I ready for this? I was nervous how I would go attending uni, studying, cooking meals for us and his sister and daughter who also lived there, all the while being on crutches with a picc line. I cried as I hugged mum goodbye. She was going to visit me every Wednesday to help out with the washing and to hang out, but still I wasn’t sure how I would cope without her.

But The Boy had been so sweet and caring. He had stroked my hair and wiped away my tears when I was in the throes of pain. He brought me fruit salad, movies and magazines whilst in hospital and offered me support in all forms.

This would be a good test for our relationship.

And a test it was. We had only been dating five or so months and suddenly he had to take on an almost carers role. In addition to changing my IV, helping with the food shopping, he had to help me shower. I was a tangled mess of cords and I needed his assistance to bag my arm to avoid any water on the site and to carry my IV bottle and hang it over the showerhead. I had limited reach with my right arm as there was only a small distance that the tube would allow me to reach and he had to pass me bottles of shower gel, face wash and shampoo. It was humiliating. I had always been so fiercely independent and here I was handing it all over to someone I had known a few months. While we should have still been in the carefree, honeymoon phase of our relationship, suddenly things were accelerated at warp speed. To his credit, he was brilliant. He adapted without missing a beat and seemed to thrive on being able to be there for me and help. He was very sweet. When I would have a bad day and feel frustrated by the constant nausea that the IV antibiotics gave me or fact that even the simplest task required such effort, he would hold me in his arms and tell me how strong I was, how much he admired me and how much he loved me. He tried best he could to make things easier for me and to keep my spirits up with small gifts and trips to my favorite cafes.

I had never been so disabled. Not only was I on crutches, not able to wear my leg and walk, with the picc line in I now had limited freedom of my arm. With the line in I wasn’t able to do any task that put stress on the muscles of the arm and required them to tense. Otherwise the line would rub on my vein and cause pain and discomfort in my arm and shoulder. Being on crutches made this difficult, as there was no alternative to having to tense your triceps and biceps with each step. This meant no gym for me. No exercise at all. For six weeks. I was horrified. Devastated. Scared what this would do to my body and my mood.

It was one of my biggest fears and here it was a living, breathing, tangible reality. But it’s funny so many times I have been confronted with my biggest fear and worst possible scenario. At first you don’t think you will possibly be able to survive but then somehow you always find the strength. A hidden reserve you didn’t know you had.

In saying this, without exercise my body felt tired, lethargic and without movement and in conjunction with being on crutches, ached like the body of a 90-year-old woman. I felt my taut and toned body I had worked so hard to achieve soften around the edges.

During the nights where I would be feeling particularly self-conscious at my more rounded form The Boy would pull me into his arms and tell me I was beautiful and looking into his eyes I believed him.

And so I fell deeply in love with this beautiful man with the kind eyes and words of encouragement. It was such an incredibly tough time and yet with him by my side it was also incredibly happy. And even though things were not to last with us I will be forever grateful for the light be helped provide in what could have been such a bleak time.

Despite being on crutches with a picc line I was determined to push through and continue with uni. My uni lecturers gawked at me when I said I would continue and were very kind an accommodating, as were my new uni buddies.

But it was tough. Along with the infection fighting ammunition the drugs left me feeling constantly nauseous and fatigued. My head was fuzzy like the world was coated in fairy floss and my eyes felt scratchy and strained. Trying to study would at times reduce me to tears as I tried to absorb the words while my head pounded and stomach churned. Like a pregnant woman I had to eat every few hours to keep the nausea at bay. But still I continued on.

 

Each week with hope I would try the leg on and see if the pain had disappeared and I would be able to take a step. But like the ugly stepsisters trying on Cinderella’s shoe no matter how much I willed it, this leg and I were not going anywhere together.

The moment my foot touched the ground an excruciating pain would rocket up the bone and vibrate throughout my whole body. This was not a pain to push through, this was a pain that stopped you dead in your tracks. I couldn’t rip that leg back off fast enough.

Each week it was the same and with each passing week as the six weeks became closer and closer to being up, the hope began to fade and the dark reality of what this might mean loomed closer.

And so Mum and I found ourselves in Munjed’s office that Thursday morning in May.

For minutes he had stared silently at the x-rays lit up on his screen. The silence stretched painfully, each second he didn’t speak correlated with the acceleration in speed of my pounding heart.

And then his verdict. His defeated look. The tears, mine and mums. The worst possible scenario. The implant had come loose. It would have to be taken out. I would have go through the entire osseointegration process again. Move home. Defer uni. My brand new life stopped in its tracks before it had really even begun.

 

 

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3 thoughts on “The Appointment to Decide My Fate

  1. Oh I’m so sorry to hear this. What a bloody awful time you’ve had. Wishing you all the best for the osseointegration. 😦

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