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.

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.