The Approaching Storm - A Schwannoma Diary (#9).

See...that's the thing about Schedule 8 analgesics. They're all well and good when you're on them and they are giving a nice little analgesic high. You feel good, existing in a state where you're pain free and can function *almost* normally.

And then the wall rushes up. You slam into it and you realise it was all a fallacy.

No matter how diligent you are in weaning yourself off them, reducing the doses every few days and adjusting, there is always a drop off once the final dose has been taken. And it's a big drop off. I encountered it yesterday when I entered the first day without having the narcoticanalgesics available to me.

The pain in my legs was breath taking. Every step I took was a punishment. And not only was there the pain of impact - from taking a simple step - it was accompanied by a lingering bout of pins and needles, lasting anywhere upto an hour once I'd completed a single instance of walking. An electrical storm in my legs.

Any activity is a war. Finding a comfortable spot in bed or in a chair. Having a shower. Even toileting is a fucking to do.

I'm getting frustrated. I'm getting angry. I'm weeping alot. It takes everything I have to erect a veneer so that no-one sees. I'm a shitty builder.

I am able to get some respite from it with Paracetamol and Ibuprofen taken together. But they aren't all that effective. Everything is hard. Even showering. Even toileting.

We're entering a phase of recovery now that isn't going to be pleasant. I have to ride the wave of withdrawal and hope that this will settle in a few days. I have to be patient when pain and patience are the worst of partners.

I have to rely on myself now and I'm not very reliable.

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.

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.

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.

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.