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.

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.