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.

A Moment In The Air - A Schwannoma Diary (#10).

I can't remember how long it's been since I've been to a beach. 

The sun on my face. 

The sand between my toes. 

The sea breeze. 

My dog is just as struck by the beauty of the Adelaide beach on which we sit. I've let him off the lead and he's galloped across the sand, his floppy ears flailing like sails. He's snapped at the air like it's some sort of treat. 

On the beach, I can stretch my legs. I can stride a little bit, even though the pins and needles keep reminding me that they're there. I can accept the pain because where I am feels so bloody good! 

There's a young Dad frollicking with his infant son near the edge of the foam as it races up the sand. The boy squeals with joy and it's hard not to smile. Right now - I get it kid. 

To sit on the sand with a straight back (because I *have* to keep a straight back) and look out over the jetty. To marvel at just how wide open everything is. The sun and the light! The air! The breeze on my face! 

I've been surrounded by the four walls of my house for far too long.

I almost don't care that I move like an 80 year old. That I probably should have taken some pain relief with me. That there's not a toilet close by.

I can see a kiosk nearby. 

You know what? I'm gonna treat myself. Yes I am.

DFA.

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.

Scars - A Schwannoma Diary (#8).

They're a curious thing. Scars. 

Some are easy to see. They're in your face, confronting. They challenge you to consider them. 

Others are deeper. Hidden from view. Covered up to protect others from having to deal with them. 

To those who bear them - they mess with your head, your heart. 

They are uncomfortable. They are painful.

They are functional. They are protective. 

Scars are a curious thing. 

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.

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.