The Shape Of Water - A Schwannoma Diary (#11).

I saw my neurosurgeon last Friday for my 6 week post operative review. It's kinda hard to believe that six weeks have past since my surgery. Time moves in such elastic ways. 

We reviewed my progress. It's been patchy. I'm not moving freely. Even with the physiotherapy exercises I've been doing, it's hard to loosen up. Walking is a chore for the most part and I can't tolerate walking long distances, say more than a kilometer. It's hard to get in and out of my car, my bed or chair. I experience pain at the surgical site and down into my legs, along with long bouts of pins and needles. Incontinence is still an issue but, so far I've avoided any significant accidents. This requires a regular toileting regime, forward planning - especially on outings - and a keen focus on what my body is telling me. I do get strange sensations, which I've attributed to warnings that I need to take heed of.

With the activity I've been maintaining however, I do believe things are improving. At the very least, I'm coping with them. My neurosurgeon prescribed some new medication that will hopefully, address the pain issues and the nerve irritation that is causing the pins and needles.

The one question I had for her during my review last Friday though was pretty much the only thing I wanted to get an answer for.

Can I get back in the pool?

When I had my original surgery back in 1989, my then surgeon was happy to allow me to get in the swimming pool after a similar time frame. As a result of this, not only did I discover a love for swimming, I became really good at it. So I knew going into this surgery that the pool was going to be my Holy Grail. 

My neurosurgeon this time around prohibited me from going swimming until she had reviewed me. Her primary concern was my wound. She wanted to ensure it had healed properly before exposing it to water and risking infection. I accepted this, but I was disappointed that I couldn't start as soon as possible. 

You can imagine how pleased I was when I put the question to her on Friday and received her answer. 

"Absolutely!" 

I felt like I was receiving a Christmas present - all over again.

The Unley Swimming Pool at Forestville here in Adelaide is a pool I've been swimming at on and off for twenty years. It's an Olympic sized pool and it's a friendly place. After dropping the kids off at school, I headed straight there. After 9AM, the early morning lap enthusiasts and competition swimmers tend to taper off so competition for lanes is minimal. I went for the recreation lane today. 

I had an idea of what I was going to do once in the water but for this first session, I winged it a little. I adapted some of my 'on land' exercises to the water and set about constructing a regimen that ended up looking like this; 

Stationary calf stretches 10 reps x 10 seconds right leg.
Stationary calf stretches 10 reps x 10 seconds left leg.
Stationary side stretches 10 reps x 10 seconds right arm (down right leg).
Stationary side stretches 10 reps x 10 seconds left arm (down left leg).
Stationary leg kicking (against side of pool) 2x 1 minute.
Walking (strides) 25m x 10.
Jogging steps 25m x 10.
Side strides 25m x 10.
Breast stroke (gentle!) 100 meters. 
Cool down walk 25m x2. 

I won't go into deep explanations of each of these, but feel free to ask me about them in the comments and I'll try to explain them if you're interested. 

The session took me about 45 minutes. 

Suffice to say, from the moment I entered the water, I felt amazing! Water and buoyancy affords the body so much freedom of movement and I was able to stretch so much more easily than I can on land. The exercises I chose were designed to achieve both a muscle stretch and a nerve stretch through my lower back and legs and I chose to limit them once I could feel them in my calves in particular. I felt that was good indicator. Curiously, I felt the stationary leg kicks and the breast stroke in my right buttock, close to the mid-line. On land, most of the pain I've been feeling has been centered around my left buttock and sciatic nerve. I'm not sure what the significance of that is but I'll bring that up with my physiotherapist when I see him tomorrow.

Leaving the water after that first session, I felt a little shaky - but it was a good shaky. I felt like I had achieved something important and I felt a rush of endorphins - ones that have been in short supply lately. I'm well keen to do it again. But I know I need to pace myself. 

This is a big milestone for me. Since the surgery, I've been looking towards this moment. I've been thinking about it. Planning (loosely) what I would do once I got in there. I knew it would be good...and it was. 

I love the shape of water. 

DFA.

We're Through The Looking Glass Now - A Schwannoma Diary (#7).

It's day 2 post op now. My lines and drains are out and I am existing in a pleasant fog, supplied graciously to me by an assortment of Schedule 8 analgesics and miscellaneous medications. The bulk of the pain I'm experiencing comes courtesy of the 6 inch surgical wound they cut to access my spine as well as a headache that occasionally pounds in the background if I try to do too much. Because the lesion was intradural, I lost the bulk of my cerebro-spinal fluid during the operation. This takes time to replenish - hence the headache.

My legs can move, and I can walk - albeit gingerly - and without much confidence. But I can walk, so that is great relief number one. Since I had my urinary catheter taken out yesterday, I have managed to go to the toilet several times. It takes me a long time to finish but I can empty my bladder. I have control, so that is relief number two. I've yet to test my bowel so I can't report on that one just now. I'm keeping my fingers crossed. The other stuff - the *man* stuff? That will have to wait for the time being. But I would be lying if I said that it wasn't playing on my mind. 

How am I feeling psychologically?

At the moment, I feel drained - completely washed out in fact. I'm struggling to keep my eyes open, even as I write this - and it's mid morning! After, seeing the physio, having a shower, brushing my teeth and submitting to nursing tasks of observations, medications, wound care, I'm pretty much trashed. 

Mostly though, I'm relieved to be on the other side. This "thing" has consumed so much of my mental capacity and well being for so long, there has been no room for just living. I've neglected my kids - all their end of year school achievements and especially their anticipation for Christmas. I didn't go to get the tree like I usually do and a lot of things have happened around me. 

I mean, I've been there - but I haven't been there. 

I've neglected my wife. Emily has been holding fort, running around and trying to keep our household together, whilst tidying up all her loose ends at work, preparing for Christmas and worrying about me. She is a very pragmatic woman, not often given to overt displays of affection. She expresses her love though in her devotion to the household, the family. She often moves in a quiet way and it's easy to miss the things she does. Everything she does is done with love. 

I need to be more aware of that. 

There have been so many wonderful people who have reached out to me these past few days, from all across the world, sending messages of encouragement, love and best wishes. I'm overwhelmed with gratitude for them. 

I hope to be home for Christmas. I have to make it up to my family for all the chaos I have caused them.

I have to stop now. I'm dribbling saliva over my keyboard.

DFA.

Goodnight Marcella - A Schwannoma Diary (#6).

DFA.

The Alabaster Elephant - A Schwannoma Diary (#5).

My wife bought me an elephant yesterday. We stopped by an Oxfam shop in town during a last minute excursion to finish up our Christmas shopping.  

It's a small carved elephant, one with an even smaller elephant inside it's body, which you can see through the intricately carved lattice work on its flanks. It has its trunk turned upwards, a sign for good luck, according to Hindu culture. It's hand carved, courtesy of some sort of co-operative in India that provides these and other trinkets to the Western market, with proceeds from each sale going back to the individual artisans who make them. 

I've long been fascinated by elephants. Their intelligence, their gentleness, their strength. I've even had the privilege of riding an elephant. It was a few years ago now, during  a trip in Thailand. It was one of those experiences that seemed a lot more special than it probably was. I had a moment with this animal. It wrapped its trunk around me and wasn't going to let me go in a hurry. I had thought we'd bonded. It was probably trying to squeeze the shit out of me.

Where am I going with this...

I've packed that elephant into my suitcase for tomorrow. I don't even know if I'm superstitious but, I figure, it's worth a shot...the whole good luck thing and all.

I've packed my pyjamas. A couple of pairs in fact, along with some loose clothing that won't be too hard to get into. I've put in my tablet and my Bluetooth keyboard. I might get some writing done while I'm recovering...I probably won't. I've put in my copy of Dostoevsky's The Brothers Karamazov and Solzhenitsyn's The Gulag Archipelago - another gift from my wife. My sponge bag. Some L'Occitane products. I have standards.

I'm scared. More than I've ever been. This is real. This is real? Surely there's been a mistake. The scans are wrong. They got the wrong patient. The tumour belongs to somebody else.

Fuck!

There's no mistake. 

This is real.

My kids are fighting over some Christmas paper. They're screaming at each other. Meanwhile, the dog is whimpering and whining, wanting to be fed. The TV is too loud. Builders working on the house next door are using an electric saw, a nail gun. My son is trying to follow the cricket, demanding quiet.

Inside my head...silent chaos. A thunder storm of fear that seems more suited to a 15 year old boy than a forty...something...year old man. I'm standing on the edge of a volcano, looking down into the maelstrom. 

I've take the alabaster elephant out my suitcase. I'm holding it in my hand.

The elephant seems calming. They are a calming animal. 

Aren't they?

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 Snore Of Destiny Part Quatre.

The glow weave shirt, the nice pants and boots, the teeth brushed thrice. We're going to the surgeon today...

again...

fuck...

***

It's numbing, sitting here in the waiting room, ruminating over the fact that I'm here again. After 18 months, I'm back to square one. I've feel as though I have not advanced a centimeter. I've merely turned a circle. 

I'm reminded of a bee I saw a few days ago whilst out for a bike ride with my daughter. It was turning a circle on the kerbside. I guess it must have slapped into a passing car and, somehow, survived the impact. There it was, turning this futile circle, probably brain damaged, unable to do anything else. I feel a sense of camaraderie with that bee in this moment. 

Futility. Damage. 

I feel I've reached a point where I feel as though things seem irreparable, and no amount of surgical 'tinkering' will get me back to that state where everything just worked. 

I fear sleep because every time I lay down, I wonder if this is going to be the night when I drown in my own fluids? 

I fear speech because of the crass stares I get when my voice begins to fail & it looks as if I'm going to throw up. I see how they look at me. It's a mix of incredulity and disgust. They take a step or two back, fearful of being in the firing line. 

I look at food with ambivalence because I can't taste it, or smell it. I can't smell a flower, or register the scent of Chanel on my wife's skin. There's no olfactory pleasure - just an occasional 'meaty' nothing taste on my tongue that occasionally hints at something rotting. 

I wonder if that's me? Am I rotting?

It's a curious thought, isn't it.

The waiting room is full. It's a nice space, if a little full. There are lots of people around me. 

I wonder if they're warring with their own minds, the way I am right now?

***

Impairment of the right inferior constrictor and laryngeal muscles related to a neuroma...

Recent increase in dysphagia...

A tendency towards micropenetration/aspiration events...

For modified barium swallow with speech pathology...

***

More study. More intelligence gathering. More planning. 

For what?

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.

Ground (Snore) Zero.

It's a damp Tuesday morning and I sit here, in the study, my mind swirling - literally. 

When I woke from my otherwise broken sleep at 6.30 this morning, the first thing I did was prepare my morning cocktail of medications. I'm currently on a regimen of pain killers including Celebrex, Tramadol, Panadol, an anti-inflammatory called Dexamethasone, a drug to prevent bleeding called Tranexamic Acid, an antibiotic called Amoxycillin and an antiseptic mouth wash called Difflam. Through out the day, I have to dose these out, interchanging the pain tablets with the others, so I can get a balance of effect that lasts.

Remember that scene in Prascilla - Queen of the Desert when Terrance Stamp's Ralph sat preparing his morning hormone pills by simply tipping them into a breakfast bowl and pouring milk over them? 

Yeah - that.

(I was seeing orange unicorns here.)

The downside of all of this is that it sends me loopy. My head is spinning, my balance is shot and my mind is foggy. Oh - and I'm having some awesome hallucinations. It's either that or endure a constant feeling of razor blades slicing at the back of my throat. I'm also experiencing a neuralgic pain that shoots up into my ears from either side of my jaw. I have to time the taking of these painkillers right so that the analgesic effect kicks in before I even contemplate eating anything. 

Eating. 

Everything I am eating presently is either soft or pureed. Which isn't actually as bad as it sounds. When I was in hospital, they brought me a little tub of pureed apple on my breakfast tray which actually tasted really nice so when I came home and Emily asked me what I would like from the shops, I made sure to write that one down. I've started pairing it with some Greek yoghurt and for the time being, it's a little treat to myself. I look forward to that one. I'm also sharpening my vegetable soup making skills. A soup pack from the shops containing a couple of carrots, celery, an onion, a turnip, a parsnip, a sweet potato costs like a couple of dollars. I add to that half a butternut pumpkin and slow cook the lot in some stock until it's all ready to be zipped into a puree. At the moment, I love this soup but I fear that I may tire of it quickly. I can drink cold tea - a Twinings earl grey. It's a bit pedestrian but, even cold, it's okay. 

My swallowing function, while it's affected by the post operative swelling and inflammation, is serviceable - so long as I don't have anything remotely solid. I tried some banana the yesterday. It sent my throat into a spasm that had my eyes bulging out of my head. 

I can't speak. My voice has been reduced to barely functional whisper and when I have tested it, it bloody hurts. I knew this was going to be the case but it now that the reality has set in, so has my depression. Trying to communicate with my family has proved challenging with me trying some rudimentary signing for obvious things and mouthing words in the hope that they will understand me. It works about fifty percent of the time but it has been bloody frustrating. 

So, I'm here alone in the house. Trying to keep my mind busy with reading and counting down the time to my next lot of pain killers. I have plenty of movies and a PS4 - I watched Deadpool yesterday. What piece of shit that was. 2 hours of my life I won't get back. Gaming is good for short periods but the games send me even more loopy and they make me feel sick. 

(Lucy makes the best Get Well cards.)

In all of this, there may be some light to look forward to. The surgery went well - very well in fact, and while the surgeon had to remove the bone from my voice box as was planned, he was able to preserve the anchor point between that bone and the right hand vocal cord. It's in a precarious state right now so I am forced to rest it completely - at least until the healing process is complete. 

So there's a chance that I can salvage some of my voice. A little one - but I'll take that right now.

DFA.

Listen to my interview with Alice Fraser, recorded before all of this malarkey.

The Snore Of Destiny Part Trois.

As I write this, I'm at a rather low ebb. 

A few weeks ago, as regular readers may recall, I underwent surgery on my throat to address an issue I was having with swallowing and choking - as well as an annoying snore. Throughout the course of investigation, it actually turned out to be a more serious issue than I had anticipated, involving the paralysis of one side of my vocal cords. You can recap on the short history here and here. 

The objective of the surgery was to create an area of scar tissue that would have the effect splinting my airway open so that it wouldn't flop inwards, particularly when I sleep and thus cause the snore. It was also going to address the problems I've been having with my swallowing which has, in a word, become scarily dysfunctional.

To cut a long story short, that surgery did not have the outcome we were hoping for. 

It didn't work. 

My swallowing remains dysfunctional and the snore wasn't neutralized. In fact, if anything, it's worse. 

I have tried to cajole myself along in the hope that it would all settle down, and once the healing process had run its course, all would be well. But it didn't turn out that way. 

So last week, after visiting my surgeon, I had to make a decision. 

I was presented with the option of returning to hospital and having a dual procedure that involves removing some of the tissue around my palate. This includes the uvula - that dangling, tear drop shaped piece of flesh that hangs down from the roof of the mouth and swings back and forth. The effect of this palatal flap surgery will be that it will open that section of the airway up and reduce amount of negative pressure that can be exerted on it when I sleep. Simply put, it won't vibrate and therefore I won't snore. 

The second part of the procedure is the trickier proposition. It involves going back to the area of my vocal cords that has been affected by the paralysed nerve supplying that region of my throat and removing the bone that anchors my right vocal cord. This is called the arytenoid bone. By removing it and applying the laser to that area of the throat, it will widen the airway as well as strengthen it by deliberately forming scar tissue. It will prevent food and fluid from entering that area of my airway that was sneaking in underneath the epiglottis. That's the flap of tissue that closes over my airway during swallowing and prevents food and fluid from falling into my airway. 

This is happening this week - this Friday.

The trade off?

My voice. 

I have to face the fact that this surgery will have a profound and permanent effect on my voice and my ability to speak. 

It has come to that because of the dysfunctional nerve that supplies my voice box. It won't recover from the viral neuritis that has affected it and so, what is being done now amounts to damage control. And I've chosen this route because - basically - I don't want to choke to death in my sleep because of some small fragments of food and fluid that has snuck into my airway.

I will require therapy afterwards to kinda retrain my throat and the muscles in it to adapt to this more extensive surgery. So I expect my recovery to be a lot more complicated.

But to sacrifice my speech...

Our voice is everything. It is a key part of who we are and without it, how are we to express ourselves?

I've been thinking a lot about this over the past week. Of course, expression and communication in this written or text form is so much a part of who I am & so I don't doubt that I will continue to express myself in this fashion. 

But, expression and communication is much more than simply words on a page. 

It's conversation. It's interaction with others. It's expressing ideas. It's singing shitty pop songs in a moment of abandon - either alone or in the presence of others. It's talking on the phone to loved ones far away.

It's reading stories to my children. 

I've been thinking about that one a lot. I remember a promise I may to my daughter recently that I would re-read to her The Guernsey Literary & Potato Peel Pie Society. I used to read it to her when she was first born as a way of getting her used to my voice. She always loved hearing me recount that.

What am I going to be without my voice?

I'm scared. 

...Friday.

DFA.