Something Radical - A Schwannoma Diary (#12).

"I had in mind something a little more radical..." Roy Batty (Rutger Hauer) to Dr. Eldon Tyrell (Joe Turkel), "Blade Runner", 1982.

I had thought that there would be no more of this story to tell...

Never say never - or so the old adage says. 

I'm roughly 8 months out from the surgery I had in December to remove a cystic tumor - a schwannoma from my spinal cord. This was the recurrence of a tumor I had removed as a teen from the S1 nerve nerve root some 30 years ago. No one expected - least of all me - that it would return, but it did, albeit in a degenerate form.

A degenerate little offspring.

My recovery from December until now has been slow but steady but I have struggled with the effects from the damage to my spinal cord. Pain, altered sensation, bladder and bowel dysfunction (which has, thankfully, improved). Pain has been the overriding feature with much of it localizing in my left leg and hip. While constant, it varies in intensity from an ache that prevents free movement to an intense, deep pain that is accompanied by an electrical storm of pins and needles. Sometimes I feel as though my legs are on fire. At its worst, I can't walk. I can barely move. Most days, I can push through and function with the help of medication, but there are days when I am reduced to tears and I have to hide myself away, let the tears flow, and then somehow carry on. 

It's not sustainable. 

I returned to my neurosurgeon last week to discuss the situation and, hopefully find a way forward. I wasn't expecting much - possibly a repeat injection of corticosteroid into my spinal cord at the level of the surgery and damage to the cord. I was introduced to something a little more radical. Neurostimulation or Spinal Cord Stimulation (SCS). 

The theory behind SCS holds that by implanting a series of electrodes into the spinal column, just above the first layer of the protective tissue of the spinal cord itself, and then passing a precise electrical current through those electrodes, it is possible to interrupt the pain signals travelling from a damaged region of the spinal cord to the brain. Interrupting those chronic pain signals leads to less pain (obviously), less dependence on pharmaceutical interventions and an improved quality of life. The therapy has had a profound effect on many thousands of patients, changing lives and freeing them from crippling chronic pain from spinal cord injury.

Spinal Cord Stimulation (SCS) device and electrodes (image credit The Doctor Weighs In).

So, I have to undergo a surgical procedure. Another surgical procedure. 

This will involve my neurosurgeon placing a pair of leads or paddles into my spinal column, positioning the paddles over the dura of my spinal cord, then tunnel those leads down to an area just above my pelvis where she'll implant the device and battery pack. The leads will be connected to the device and she'll close up.

Medtronic Surescan "paddles" come in two different configurations (image credit Medtronic).

Medtronic Intellis Device & Battery Pack (image credit Medtronic).

I'll then work with a product specialist, who will give me a device about the size of a smartphone, and set up a series of programs that will enable me to manage the device day to day in a variety of situations. The end goal, hopefully, will be an end to the chronic neuropathic pain I've been suffering from since early last year. 

Had it been anyone else suggesting this course of action, I would have dismissed them as crack potted. Because my neurosurgeon suggested it - a) I'm surprised and b) I'm now very interested. 

I met with a representative from the medical technology company Medtronic Australia this morning to go over the technology, the benefits and potential risks, to discuss the surgery and post surgery pathway and what to reasonably expect long term. I am a good candidate for SCS because in most other respects, I'm fit and healthy, I'm active - I swam my first, unbroken 1000 metres over the weekend - and the nature of my spinal cord injury has been shown to respond well to SCS in a large population of similar patients. It isn't a sure thing however. I have been warned that it might not work, or work as well as I might hope. I'm keeping my expectations in check.  

So, I'm moving forward with this. It is worth a shot. I want to be free of this pain. I want to eliminate or, at the very least, reduce my reliance on medication to manage my pain and I want to swim. I want to swim a lot. In amongst all of the bad stuff, swimming has been the one refuge from pain, my inability to move and my depression and anxiety. I think I'm actually really good at it. 

I want to write again. A lot.

Tomorrow, I undergo a series of X-rays and MRI scans to map out my spinal column in detail in order to assess and plan for the surgery. I meet with my neurosurgeon again next week to go over the results and then book a time for the surgery. 

I'm sharing this - mainly for myself. It keeps things clear for me which helps when I'm not feeling so good - this tends to be a lot lately. I'd be happy for you to join me on this one. I'll post more as things develop.

DFA. 

String Theory Nineteen Eighty Nine - A Schwannoma Diary (#4).

In his 2002 memoir, "Lucky Man", actor Michael J. Fox recounted an moment, the night before he underwent delicate brain surgery in 1998. Lying on his hospital bed, he recalled listening to the Pearl Jam song, "Given To Fly" over and over, drawing comfort and strength from the music and the lyrics as he prepared for the surgery that would alleviate the symptoms of his Parkinson's Disease.

In 1989, the night before I was to undergo my original operation to remove a spinal cord tumor, I remember sitting on my own hospital bed at the Royal Children's Hospital in Melbourne. I remember looking out through a big window, across the park lands - the city's twinkling lights beyond. I had Vince Jones', "But Beautiful" playing on my Walkman. It was kind of accidental that it became a poetic moment. Jones' soothing, smoky jazz vocals, accompanied by Paul Gabrowsky's languid piano. I (thought I) was a deep kid.

As a callow 15 year old from the country, I had little comprehension of what was about to happen to me. I was scared - but I was scared of the unknown. I didn't appreciate the task facing the surgical team, nor could I foresee what would come after the surgeon removed the tumor. For a brief moment, I just thought it was cool to be listening to jazz while looking out across the Melbourne skyline.

All these years later, reflecting on that 15 year old version of myself - it's like looking at a stranger.

That earnest youth has been subsumed by a terminal, world weary cynic. I'm no longer given to moments of musical romanticism, which might seem hard to believe, given that I've pursued a career outside of nursing as a romance novelist.

Personally, I don't think I draw inspiration from music the way I once did. I don't connect with it on an emotional level. Like, I still love music and I enjoy my favorite genres whenever I hear them. But they're not all consuming the way they used to be. They don't get me in the zone. I'd just as soon listen to a podcast conversation between two people tackling a philosophical conundrum.

Maybe I've lost something that I should try to recover - a sense of the power of music to calm and encourage reflection.

(image credit: Noah Sillman).

I know too much - both as a man who has the burden of lived experience of this kind of thing and as a Nurse, with over twenty years of accumulated knowledge of medicine and clinical experiences. I know what to expect surgically. The stakes are high. I know the recovery will likely follow a similar path as it did back in 1989. I'm aware of the psychology of trauma. The slow grind to get my muscles and limbs working again. The *joys* of incontinence. There are questions too. Fears.

What comes after?

Can I overcome this?

Will I be whole once more?

Will I make love again...?

I'm scared. I'm scared of the known this time.

Maybe I'll listen to Vince Jones once more. On cassette - the way I did before. Do they even make Walkmans anymore?

DFA.

A Parasitic Relationship - A Schwannoma Diary (#3).

I think I'm entering a phase of being angry now. 

I met with my neurosurgeon this afternoon to review the MRI scans that were captured over the weekend. 

They established the geography of the space occupying lesion at the base of my spinal cord. Even on the scans, it is a parasitic looking little shit. In fact, it's not so little. It's something in the order of an inch to an inch and a half in size - a dark, lobulated mass that is being fed by a rudimentary blood supply and, most likely, my cerebrospinal fluid - the fluid that bathes my spinal cord.

My little parasite - not the circle, the thing in the circle.

The theory goes that this tumour is one that has degraded over time. It started out as a healthy (???) schwannoma but some where along the way it degenerated into this cystic lesion. There's still a lot that is unknown about it. An MRI will give you good images and you can make certain assumptions about the make up of the structure and tissues featured in them. But they're assumptions. Guess work. Estimations.

We won't really know the composition of this thing until it's removed from me and it can be examined. 

I want to anthropomorphize it - to give it an evil agency so I can justify being angry and hateful towards it. 

But it's not evil. 

It has no agenda. I mean, it couldn't even grow properly, like a normal tumour would. It's a pathetic reject - a retarded tumour. It's just there. A stupid genetic abberation of my own making.

I can't sustain my anger. I end up feeling empty, perhaps a little bit guilty.

My retarded tumour.

The surgery has been set for next Tuesday, the 18th of December. I will undergo a laminectomy whereby the surgeon will re-enter my spine through the incision that was made 29 years ago. There's a lot of old scar tissue from that original operation that may or may not cause some problems. Scar tissue is not forgiving. I'll be under an anaesthetic for 3 - 4 hours. It could be less if my surgeon can get in there without too much trouble. Then, I'll stay in the hospital for 5 - 7 days.

That's where my stomach drops. Having to tell my children was crushing this evening. Christmas Day won't be the same. I won't even be home for it. We won't be able to observe our little traditions. Worse still, our planned interstate vacation looks unlikely to proceed. This is particularly upsetting. I haven't seen my parents or my brother for 8 months. There are old friends I haven't seen who I was looking forward to seeing. I haven't reconnected with home in all that time and it hurts. Some people don't understand how much it hurts.

I've noticed something about hospital forms - they never allow enough space to write your email address. I always end up squashing up my writing to make it fit. I'll have to bring that up with someone I reckon. 

DFA.

Billy Idol In A Tube - A Schwannoma Diary (#2).

If you've never had Magnetic Resonance Imaging (MRI) performed before, it's a difficult experience to distill into a basic description. Having thought about this over the past few days, I think the best way to sum it up is in two words - a peaceful panic. 

I consider myself a veteran of the MRI machine, having undergone more of them than I care to count over the past twenty or so years. So, I no longer experience the crippling claustrophobia I felt when I first entered one of these machines back in the 90's. That's not to say the feeling is totally absent. I mean, I still lose my shit if I get tangled up in a sleeping bag, so I retain a certain, unhealthy fear of tight spaces. The MRI and I have, somehow, come to a mutual understanding. We don't fuck with each other.

Entering the two foot wide tube on Sunday was kind of a mundane exercise - if you could call it that. I went into this scan with a clear sense of the objective. We were to map the tumor sitting in my spinal cord in preparation for surgical intervention. Knowing this, and having the clinical knowledge that comes from over 20 years as an Intensive Care Nurse, I didn't feel a great deal of anxiety. 

Once my entire body was delivered into the entirety of the machine - then, it was a case of, "Oh Shit! I'm in this confined space for at least half an hour and I have to lay completely still."

 Of course, they do give you a panic button and headphones - mainly to block out the frightening sound of the magnets circling at insane speeds around your body - but also to pipe music or radio talk back of your choice into your ears as a measure of comfort. I chose the broadcast of the Test Cricket between Australian and India at the Adelaide Oval but the radiographer had a difficult time actually finding the station. For several minutes, I had FM radio blaring Billy Idol's "Hot In The City" in my ears. As I was feeling an uncomfortable warmth in my pelvis (real or imagined), I thought the song was appropriate.

Somehow, the radiographer fiddled with the dial and, like that first bit of radio static you hear on Pink Floyd's "Wish You Were Here", the Cricket broadcast was eventually found. 

Recently, I have been using a meditation app called "Calm". Like the many guided meditation apps that are available at the moment, this app focuses on the breathing as your centering strategy, while voice guidance - provided by the wonderful Tamara Levitt - lulls you into a state of relaxation and...well...Calm! throughout each, roughly 15 minute session.

This method of breathing and focus came in handy while I was in the machine. I found I was able to push away the chaos of the magnets spinning around my body, assaulting my tissues with their insane fields of energy, and find a state of being that helped. The claustrophobia - the panic of feeling claustrophobia - peeled away from me and, funnily enough, even the sound of the magnets became a tool with which to enhance my state of calm. Of course, the cricket helped as well. 

Not Billy Idol though. He's a tool. 

The set of pre and post contrast images, focusing on the lesion in my spinal cord, were good images. At first there was a little confusion because the tumor didn't take up the contrast as readily as was expected (tumors are inherently vascular). It has become cystic, space occupying, which accounts for the leg weakness and pain, the urogenital dysfunction and my lazy bowel, so it has to be dealt with sooner rather than later. 

I meet with my Neurosurgeon tomorrow to discuss the results and go to the next stage.

(image credit - Getty images.)

Emotionally, I'm ragged. I'm at war with my thoughts - my anxieties. Knowing I have this parasitic "thing" within me does not encourage good tidings. I can't plan anything - certainly around Christmas or beyond. At a time of year where everything is insane and people have to think 12 steps ahead, I'm forced to live day to day. Plans I've made with the family have to be held in stasis until we know more and I feel a pressure cooker of expectation. Most of this of course, is in my own head. I don't want to let people down - most of all my kids who, at this time of year are filled with Christmas butterflies. And time always moves slowest when you don't know the answers to their questions.

I'm also asking the question, why did this thing come back? That has been playing on my mind more and more and, of course, that can't readily be answered. I know I shouldn't ruminate over that too much because there's no use in it. It came back and that's all there is to it.

I listened to Joe Rogan talking with Jordan Peterson over the weekend and they were talking about the nature of struggle. Peterson was saying that struggle is an inherent part of human nature - of being - and it's how we approach the struggle that determines our character. I'm trying to approach all of this with strength and focus. It's elementary really. This thing has got to come out. I've got to accept the struggle and navigate the path through it. 

I've got too much living to do. 

DFA.  

The Twenty Ninth Year - A Schwannoma Diary.

Where to begin with this...

So...I've had to digest a lot of news in a short space of time this past week, so my thoughts are a jumble. I'm probably going to struggle to express myself coherently here. But, bare with me. Okay?

There's a background to this story that I'll relate to you in a potted form. It's a story that began back in 1989 when I was 14 years old. 

I was a reasonably active kid. Good at swimming, average at football. Decent at cricket - though nothing to write home about. I was always a little clumsy, uncoordinated. I had a terrible drop punt and I used to trip and fall over myself a bit. It was embarrassing sure, but I didn't get too worried about it. My Star Wars game was always better than my Australian Rules game. One morning in late May, during a junior football match, I suddenly collapsed and was rendered unable to walk. After a flurry of medical examinations and a series of scans, I was diagnosed with a tumour in my spinal cord - a schwannoma. It was growing out of the spinal cord itself, it's parastic tissue intimately emeshed with the cord. It was to turn my teenaged life upside down for the next two years. 

I had two operations back then to remove the tumour and clean up some scarring that caused some issues afterwards. I had to re-learn how to walk. I had to manage a few functional issues involving my bladder and bowels and I somehow had to navigate the psychological comprehension of a traumatic experience that upended my adolescence.

I was told at the time that this tumour was a fluke - a once off. Owing to its slow growing nature, there was zero likelihood of this thing ever returning in my lifetime. Aside from a few functional issues, I should be able to lead a normal life.

Twenty Nine Years later...

I've documented my recent *exploits* here with my throat - how a dysfunctional branch of nerves in my neck caused havoc with my ability to swallow, speak and breath effectively. Having largely conquered that episode, I was referred to a Neurologist to investigate the underlying aetiology of this nerve dysfunction 

I was concerned there was an inflammatory causative factor for the whole throat thing. Some additional symptoms I'd been experiencing - including visual deterioration in my left eye, a sudden inability to taste or smell, some incontinence and *other* dysfunction - led my neurologist to want to rule out that very inflammatory pathology. We discussed Multiple Sclerosis, even Parkinson's Disease.

I agreed to undergo a battery of tests in order to build a case against these. A series of blood tests, urine, a lumbar puncture, neurological exam, an MRI. I underwent these tests, determined to get to the bottom of this mystery, because I didn't want it weighing on me any longer. This had been two years out of my life, in which - you know - I would've rathered been focusing on something else. 

I'm at a stage in my life where there's not a lot that shocks me anymore. As an Intensive Care Nurse, I've seen a fair bit - maladies, trauma, disease, the expected and the unexpected. 

I received a phone call from my GP last week, requesting that I make and appointment to see her. I sat down with her after a long night duty shift on Wednesday morning.

The MRI scan found a tumour, located in my lower spinal cord - very close to where the original schwannoma had been found in 1989. 

A tumour - that was never supposed to recurr.

I was shocked, stunned, numb.

Remember? This was never supposed to happen. 

Things have moved fairly quickly. I have met with a Neurosurgeon, and we have discussed my options, which I might say, are pretty straightforward. I will have to undergo surgery to remove the tumour. Plans are afoot in that direction and I'll be undergoing a second series of scans later this week to *map* out the exact geography and extent of the lesion. It is growing out of the spinal cord itself, so the surgical team need to know - to the millimetre - how emeshed this mass is.

At the moment, I'm approaching all this with a clinician's mind as much as I am a patient's. It's a confusing state. I've expressed little outward emotion about the diagnosis so far. Rather, I've been digesting the reports and the MRI films. I've mulled over the technical aspects of the prospective surgery. I've weighed up the chances of this thing being a malignancy. By erecting a veneer of distance between the diagnosis, I can keep my emotions in check.

This is not to say that I am completely divorced from them. This recurrence has implications beyond the mere presence of the tumour - implications that I can't bring myself to process just yet. There is, deep down, a maelstrom of emotions.

There is fear. There is disbelief. There is anger.

My mind teeters on the edge of this chaos so I'm doing everything I can to focus on the process dispassionately.

This may seem strange, but I'm more worried about more fundamental things - like, how I'm going to get through the next little while - I mean, it's bloody Christmas. I have to pay the bills, support my family, give my kids a Christmas to treasure - this Christmas is certainly going to be interesting. 

I want to get back on my feet as soon as I can. I can't stay idle. It'll drive me nuts. I can't allow this thing to upend my life again. 

The stakes are too high.

Is this a diary? I think this is a diary. Let's call it a diary.

I can't breathe now. I need to stop writing. I'll talk a little more soon.

DFA.

Why It Is Important To Be Creative.

I'm back with a post as part of my writers' group August blog chain challenge and, this month, the topic put to us was a question - Why is it important to be creative?

At first glance, the question appears fairly easy to answer doesn't it. 

However, I struggled to come up with an adequate answer and, for the longest time, I couldn't figure out why. It eventually struck me that I was trying to answer the question by looking outward - as though trying to impart reasons why anyone should be creative. But, that's the wrong way to tackle it. Creativity is a very personal thing and it can take so many different forms. The relationship one has with creativity is unique. It goes then, that any consideration of its importance requires that one look inward, rather than outward. So why is creativity important to me?

My love of writing began at an early age. I've often said my Grade 3 primary school teacher, Mrs. Furnell, was the individual who unlocked my creative streak during the creative writing sessions she used to run in class. Ever since then, my desire to create, to tell stories has been insatiable. It has become as much a part of me as breathing or walking.
  

As a Registered Nurse, having practiced for over 20 years in many clinical areas, I have been witness to the extremes of the human condition. A lot of these experiences have been positive - like Nursing newborns who need just a little bit of help at the beginning of their lives or Nursing various bumps and scrapes children have sustained on the sporting field or in the back yard. Things that can be fixed relatively easily. Through the tears and the worry of the patient and their family, there are often smiles and laughter and comradeship. Plenty can be fixed with a Zooper Dooper icy pole.

There have been a lot of other experiences though - like being present at traumatic presentations in the ED, like motor vehicle accidents, violent assaults - sometimes involving weapons, drug overdoses. Or in the ICU - Nursing complex disease processes, the extension of those ED presentations, children who have acquired virulent illnesses like meningococcal sespsis or have been diagnosed with cancer. Many of these cases survive and recover. Many of them do not. There have been catastrophic outcomes. There has been death. 

These experiences imprint on you and they do affect you.

Creativity in the form of writing has been a means to decompress, to escape the accumulated muck of that side of my life and engage with an art that is completely separate. Sometimes, I have written down vestiges of those clinical experiences simply as a means of trying to make sense of them, to remove their subjective effects from my mind and see them as objective experiences, which I can address, deconstruct and move on from. Sometimes, those experiences have found their way into my writing, which has been therapeutic in itself.

It's ironic isn't it. I've credited my Nursing as being an influence on my writing for this reason, but also because of the structure Nursing requires to practice effectively. Nursing involves an adherence to inquiry, to diagnosing, problem solving and crafting solutions. These tools are invaluable to me as writer as I sculpt stories using them in much the same way. So, while I write and create as a way to separate myself from my Nursing, my Nursing inevitably creeps across the fence.

Creativity is an antidote for a restless mind. I have a mind that is constantly working. I find it difficult to switch off. The world around me is such a vivid place and I often take in everything. I work it over, consider objects, smells, tastes, experiences. I ask myself questions, analyze, ponder. The noise in my head can, sometimes be deafening and it can be distressing. 

Writing is a means for me to unpack my mind and get things out so that I can become an observer of ideas, rather than a participant in them - does that make sense? Having a creative process, a method if you will, that is structured and coherent allows me to work ideas into a pre-existing project or catalog them for a future one. I've come to regard even the most disparate ideas as valuable. They are as tangible to me as a flower or a leaf, a Star Wars figurine or a piece of fruit.

Creativity, for me, is a means of maintaining mental well being as much as it is a satisfying pursuit of story telling. 

I'm sure I could explore other reasons why it is important, for me, to be creative but I think these two top the list. They represent the two greatest influences on me as a writer and also as a person. 

So, what about you? Why is it important for you to be creative? Let me know in the comments.

DFA. 

Anxiety At The Edge.

I'm back here. 

Again. 

Again???

There has been a disturbing turn in a direction with my health - one that seems inconceivable to me after the past two years of multiple surgeries on my throat. 

I was in a place towards the end of last year, where it seemed as though we had found a solution to the choking problems I was experiencing. I had begun receiving a series of injections of botulinum toxin - (yeah that botulinum toxin) - in an effort to paralyze a dysfunctional region of my throat that was randomly going into spasm during the act of speech and swallowing.  

After what was a hopeful response, I've had a major setback. My dysfunctional throat, which seems determined to kill me, is not responding to the treatment. To be specific, the injections were designed to paralyze a ring of muscle at the top of my throat - just under the vocal cords - called the cricopharyngeal ring.

In its normal state, that ring of muscle is supposed to relax and contract rhythmically with the act of swallowing, allowing food to pass safely into the oesophagus. During speech, it is supposed to contract and stay contracted in order to facilitate airflow over the vocal cords. 

In me, the cricopharyngeal ring spasms uncontrollably during swallowing and speaking, leaving me at risk of food and liquid regurgitating into my airway and lungs. Food and fluid on the lungs is not a good thing.

Basically - you can drown. And I have come close a few times. 

This all relates back to the dysfunctional nerve supply in my neck that precipitated the surgery I had on my vocal cords in 2016 and 2017. Initially, we believed that only my vocal cords were affected. It turns out the pharynx is involved as well. 

So where to? 

I can't believe I'm saying this - much less typing it - but I'm going back into hospital for more surgery. 

The only credible path for me to take now is to undergo a procedure in which the cricopharyngeal ring, along with part of the pharynx, will be cut in order to neutralize the muscle completely and permanently. By severing the muscle it will be rendered useless and will prevent the pharynx from going into spasm during the act of swallowing and speech. It will also widen the pharynx at the top of my oesophagus, technically making the passage of food easier once the tongue propels food and fluid into it. On paper, it appears straight forward. 

Right? 

The following diagram sets out the procedure in a fairly sterile manner. It was provided to me by my surgeon yesterday.  

Cricopharyngeal Myotomy (image credit OSEO.org)

To access the structures of the neck, they'll create an incision down the left side of my neck, then retract the muscles, veins, arteries and nerves around my pharynx in order to reveal the cricopharyngeal muscle. During the procedure, they'll need to sacrifice an artery and vein that supply my thyroid gland, but these are considered redundant vessels as the thyroid gland is generously supplied by multiple vessels and is quite a vascular gland. The sacrificed vein and artery will be clipped with special titanium clips (so that'll be fancy). Once the cricopharyngeal ring and pharynx are identified, the surgeon will divide (or cut) the ring down to the pharyngeal wall and extend that incision down the pharynx about 5cm. The pharynx itself will then herniate through the incision (see Diagram C) which is the objective - to create a widening of pharynx that will allow food and fluid to pass freely into the oesophagus without the risk of the muscle going into spasm. The surgeon will close up and I'll have a stay in hospital to recover. Aside from a few technical additions to the procedure, that's basically it. 

So, how am I feeling about this?

To be honest, I'm too numb to be frightened at the moment. After multiple procedures and attempts at solving this problem, it's like Groundhog Day to be back here again. I'm exhausted. I have been living day to day (and night) in a state of silent, anticipatory terror. Every time I sit down to a meal, I wonder whether this will be the meal that will cause my throat to seize completely and choke me to death. Every time I hold what little conversation I can hold, I wonder whether the mere act of speech will cause my throat to go into spasm and choke me to death. I said earlier I have come close a number of times. The most frightening occasions have occurred when I have been asleep.

I am frightened at the prospect of this surgery and I know that fear will become more acute as I approach the day - May 4th by the way. There's an old maxim among Nurses that goes "A little bit of knowledge is dangerous." Having entered my 23rd year as a Nurse, the irony of that maxim is not lost on me. I know what's involved. I know the risks. This surgery is delicate. It's a blessing and curse.

I also know under the care of a brilliant surgeon and his team are among the best I have encountered - both as a Nurse and as a patient. I'll be in a facility of which I am familiar. There won't be a lot of strangers there. I trust them implicitly. So, there's a flip side that gives me a little to feel good about.

After two years, I feel like I'm in a no-win situation. I really need to have a win. 

DFA.

An Emotional Entropy.

I experience periods of self loathing at least ten times a day. 

Sometimes, they occur for no other reason than an autonomous biological chemistry in my mind. Sometimes, they are a product of my own idiocy - or inadequacy - or both.

I don't set out to be an arsehole. I know, deep down, that's not me.

But things in this world scare me. Everything I thought I knew about it is slowly and surely deconstructing. 

It's not enough for me to accept things as they are. I feel as though I have to challenge the orthodoxy, because I fear there is something inherently wrong with it. I fear it is out of control. I feel I need to stand apart from the group think. 

But, when I walk into an unfamiliar room, engage with a stranger, question them... 

It's bound to come undone and I know this - implicitly - before it even happens.

Yet I barrel forward anyway. Because, somewhere in the corridors of my mind - my conscience - I hold something that is well meaning. An important point of view. My attempt to question - mentally - is honorable. 

The execution...?

I am an incompetent driver of this vehicle. And I know, even before it happens, that only one thing *can* happen. 

I will crash and it will be destructive.

The older I get, the less certain I am of everything. I realize know very little. My thinking is limited. I am constantly plagued with doubt. 

I wish I were different. I wish I had the confidence, the nimbleness of mind to be more considerate in my discourse. Respectful.

I am governed by an experience - a series of experiences - I wish I'd never had.

There's a word for that, for this. For me...

Entropy.

Is that it? Who knows. I'm too dumb to know myself.

The Tangential Author.

I go off on tangents.

A lot. 

Having the kind of mind that just won't quit is both a blessing and a curse. This past week, it has been a blessing. 

I think.

I began the week strong, in a writing sense, and I found myself advancing the tendrils of my current work in progress forward. It was really satisfying. I tend to work in a linear fashion but often I'll get bursts of inspiration that will have me going back in the time line of a given story in order to add nuance to earlier scenes or help me to clarify things that I was struggling with in those earlier parts of the story. Or, I'll go off on tangents. 

Big tangents.

So, I arrived at a scene in which my protagonist, Hayden Luschcombe, had identified a problem with a motor vehicle owned by my other protagonist, Isabelle Sampi - simply by hearing the sound of the engine. Let's just say that Hayden has savant qualities. He declares that the problem with Isabelle's van (she's a Baker/small business owner by the way) is a blocked fuel line and he offers to help her fix the problem until she can get it properly appraised by a qualified mechanic. They live in the mountains of Victoria, Australia in a town that is far from a mechanic.

(I'm shipping these two.)

This presented two problems for me. One - I am not a mechanic. I know a little bit about cars that will help me out of a jam but that's about it. Two - what homespun, ridiculous-but-effective method could I come up with to unblock a fuel line of a 2011 Holden Combo commercial van.

Here's where the tangents kick off. I started by researching the basics of modern motor vehicle fuel systems. What they comprise of, how they pass fuel from the tank to the engine, what the ingredient of modern fuels contain and what scenarios contribute to the blocking of a fuel system. I learned quite a bit from this exploration although a lot of it went quite over my head.

Once I had the anatomy and physiology of a modern motor vehicle fuel system worked out, I progressed to coming up with a homemade method for unblocking a fuel line. Now, as I write this, I'm still trying to nut this one out. See, a fuel line is essentially, a metal reinforced rubber hose which is capable of getting clogged up with a number of impurities from motor fuel. And there are any number of solvents out there that are capable of unblocking said hose. But, for the purpose of my story, it has to be home made and it has to sound - on the surface at least - totally ridiculous. At the moment, I have three ingredients that could be employed, either singularly or perhaps in combination - bicarb soda, citric acid and vinegar. 

I probably need to sound out an actual mechanic as well but, given I still have major problems with my voice, I'm reluctant to introduce myself to people I've not met before. 

I'll work it out I'm sure but if you have any suggestions or know a motor mechanic who can offer up a suggestion, please do point them in this direction. 

#

On the subject of my voice - I know it's been a while since I've spoken about it here but things aren't really progressing in that regard. It's painful to attempt vocalization and when I do, I have this over sensitive gag reflex that kicks in. On a full stomach, it is not pretty. I've lost a few meals because of it, so I avoid it as much as possible. 

It's depressing. 

As someone who enjoys conversation, to not be able to engage in it is isolating. I recently attended a family party and it was a stark experience. I found myself sitting quietly in a corner, observing others rather than being in amongst them. I mean, contributing a handful of nods here and there isn't really very engaging. And the totally acceptable noise level at a party make broken speech impossible so...yeah...

It's still a work in progress but I fear, at this point, there isn't much work left that I can do.

Here's a lovely piece of irony for you though. 

I returned to work a while back and it has been good, even though I've been essentially mute.

One of the first patients I nursed on my return was a young woman who had a large, malignant brain tumor removed. In the immediate aftermath of her surgery, she was doing okay but she unexpectedly had a bleed that rendered her unconscious and she was in a coma for a long time. Gradually she recovered her consciousness but she was mute - really only able to communicate with her eyes and broken hand gestures. 

I was allocated to her and it became a great partnership because we both developed a method of communication with each other that transcended speech. She made it possible for me to nurse despite my impediment and that gave me a much appreciated boost in confidence.

She can speak now. She's actually doing very well and we now have a kind of running joke that she got her speech back faster than I did. 

It's heart warming you know. 

I can take *something* from this situation. 

DFA.

State Of Play.

So it's been six weeks.

Six weeks since the surgery that turned my life sideways. I was going to say upside down, but that sorta seems overly dramatic and not altogether justified. 

Or maybe it's just me being uncomfortable with the significance of all of this. 

So where am I at?

I still can't talk with any decent quality. I'm good for a few rasping sentences but I'm stuffed after about an hour a day and then I just can't make it work. Which presents a problem because, before all of this surgery, I committed to an author talk at a suburban library here in Adelaide later this month. I still want to do it so I've been resting my voice as much as is humanly possible and I've been working on my exercises three and four times a day in order to stretch the muscles in my throat because I really want to do it. I feel as though I need to do it. 

(Week 3. Would you wanna kiss this??)

My throat hurts like a mother f***er - all the time. 

I saw my surgeon earlier this week and he passed his camera down into the area where he operated. While it's healing, it's become inflamed and hyper sensitive due to some reflux I've developed. I'm now popping Somac daily (a protein pump inhibitor) to address the reflux and I'm swallowing Gaviscon four times a day. The Gaviscon is a thick cement like liquid - that tastes awful - which coats my throat and protects it against acids my natural desire to actually fucking speak.

It's ironic that the exercises I'm supposed to be doing are actually contributing to all of this. 

Oh - and I think I'm addicted to coedine.

I'm popping Panadiene like a junkie - well it feels that way - even though I'm actually sticking to the requisite recommended dosing of 6 hourly. The pain has localized itself to my throat, in the vicinity of my voice box - what's left of it and it feels like razor blades everytime I so much as swallow my own saliva. You would be amazed just how active the tissues and muscles of the throat are, even when you aren't doing anything. It's nigh on impossible to get any respite from it. And, of course, as all knowledgeable persons would know, Panadiene plays havoc with one's bowels. I am so constipated that I've added several classifications to the Bristol Stool Scale. Our toilet has become the equivalent of a missile testing range when I'm in there. It's hazardous.

I hate eating. 

I don't enjoy food at all right now. Between the pain from my still healing palate and my throat, meals are just a chore. It all tastes like metal and flesh. I approach the act of swallowing solid food with dread so much so that I'm starting to avoid them altogether. 

But it has done wonders for my waist line. I've dropped 5kgs in the past month and I'm still shedding.

Suck on that Michelle Bridges!!

I'm back at work. 

Because I do night duty, I can avoid talking for the most part outside of handover and introductions to my patients. They have been very understanding and have kinda dug having a largely mute ICU Nurse caring for them. My colleagues have been hugely supportive and somehow make it work so that I can work. 

(Walhalla - where I want to set my new novel.)

But I'm sinking into a state of functioning depression. 

I want my life back. Beyond waking and doing what I have to do to make it through each day, I'm not motivated. I am trying to write. I've largely mapped out a new novel but it all feels like a chore right now and I don't enjoy it and that's dangerous for a writer. I don't get out much. I clock watch a lot, waiting for the next time where I can pop some pills or drink some cement to ease my dysfunctional throat. It all weighs heavily on my mental well being. At the moment, life consists of just getting through and I want to do more than just fucking get through...

You know...?

DFA.

Isolation, Silence & Dysfunctional Fandom.

It's been a week since my surgery.

A long, slow, grinding week, characterized by constant pain, an inability to eat anything more substantial than liquids or pureès, an inability to form anything more than a few words that register above a whisper. I've spent long hours looking at the walls, wrestling with the most basic of decisions - (should I pick up that empty toilet roll tube off the floor so that the dog doesn't chew it - or no?)

I took a photo of the visible part of my throat last night. I wasn't sure whether I wanted to see it and I when I did see it I was sure that I didn't - and I wish I hadn't.

It is raw. It is mutilated. It is green! There is so much putrid slough in there that mere sight of it makes me want to gag. If only I could gag.

In short - I am thoroughly sick of myself.

I'll understand if you choose to vague out now because I know my misery can be interpreted as self indulgent. But I will say that blogging about this experience has gone some way in helping me cope with the situation.

And I will say that on Thursday, I had a slight bump in energy and motivation - enough that I took my dog Sam for a walk to the park and let him off to run around for a bit. Adelaide's parklands near my house are a wonderful open space, safe from traffic and just perfect for burning off some canine energy. Sam was, of course, as pleased as punch. The walk ruined me but I was glad I did it.

I also did some writing on Thursday. Not much - around two thousand words; but they are new words I've committed to a project I've tentatively called Walhalla - one that I've been trying to get going for a little while now. Again, my concentration collapsed after a few hours but, for a time their, it was really nice to just write something - to have some creativity flowing through me. I have only the vaguest idea of where this material will fit into an eventual story. That doesn't matter to me though. These things can be worked out later.

As I predicted, the pointy end of necessary human interaction is beginning to make itself felt and it is not encouraging. Of the few trips I've made to my local grocer this week, I've found them to be understanding without having to divulge the circumstances of my situation. Other places have regarded me with confusion, a latent suspicion and unabashed antipathy. One lady at the chemist the other day when I was trying to mouth the word tramadol, came right out and said, rather incredulously, "You can talk you know!"

A predictable ignorance.

The minute you hope for understanding, human nature comes in and shits all over it.

So I'm avoiding going out unless it's absolutely necessary. Soon, sadly, it is going to be necessary. I'm dreading that.

I think I'm done with pop culture. Looking through my social network feed this week, I've seen a number of spot fires raging around controversies within the Marvel and Star Wars universes and they are just so hack. Something about Captain America being a Nazi now and, shock horror, the forthcoming Rogue One film has to undergo some reshoots - like that never happens.

The pretentiousness of these hyper fans is really difficult to cope with and I feel as though there is an expectation on the part of some of them to engage in a war to justify some sort of defense of an ideology. It's fucking fiction! It's not key to human survival. Their consistent argument is that "my fandom is bigger than your fandom so your opinion has no validity!" I've encountered this personally in just the past week. It is confronting.

It's indicative to me that fandom is essentially broken and that maybe it is time to abandon certain franchises - *cough* Marvel *cough* that have already been twisted up in so many knots, the ability to ret conn them is virtually useless.

Further, I find that fans in my own beloved franchise have hitched themselves to it in sych a way that they have begun identifying themselves as "Star Wars" celebrities. That, because they flaunt their fandom as though it's some kind of penis symbol, they have assumed the right to be intertwined with the universe - almost as if they were in the fucking films themselves. It is annoying. Infuriating even.

I am trying to pay attention to the Federal Election campaign here currently because I like to think of myself as a responsible civic citizen and I want to take my vote seriously. But, I can't make sense of any of the arguments being put forward by the participating political parties. It's becoming lost in confusion and slogans. The only things the nation seems to have been talking about is the economy, superannuation, tax and jobs. Nothing about the arts. Nothing about social justice issues. Nothing about climate. We are a nation obsessed with money and the problems we face as a nation going forward require more than just money to address them.

But then I'm lost again.

Anyway, I have gone off on a major tangent. But it is illustrative of where my mind is at right now. I am unable to focus on anything for more than a short period of time before I am quickly distracted - then disinterested.

And I sit and look out the window.

There's a toilet roll tube on the top of the fence paling.

DFA.