Very very shortly, it will be a year since I got my PEG tube. As with so many things in life, it seems forever and only yesterday, all at once. I really didn't see it coming, but that's just because I didn't want to.
I can't really recall how long ago it was that the idea of a PEG tube was first put to me, by one of the specialists I was seeing at the time, but it was a few years roughly. Let's call him Dr Peter. We were discussing my weight loss, which at that point in time was nowhere near the levels it ultimately reached, but more specifically my increasing difficulty with the mechanics of eating. He mentioned that "down the track" if eating became more problematic that a PEG tube could always be an option. I had to ask him exactly what such a thing as a PEG tube might be, and he explained it simply for me. My mindset at this time about my situation still had a great edge of stubbornness to it; I was still working and intended to continue, and I fully intended that at some point in the very near future I would find 'the key' to unlock this mad disease progression and start to heal; so I more or less dismissed such future thinking out of hand. Yes, fear, of course.
I didn't see Dr Peter all that often. Because my condition is pretty rare and symptomatologically (is that even a word?) crosses into so many areas, I don't really have a 'home specialty' to fit into. So my management was seen to by a sort of 'general specialist' that they call a Consulting Physician, which in my case was Dr Peter. Still would be if I hadn't moved towns. He looked a little like a bastard love child of George Costanza and Professor Julius Sumner Miller but with more hair than both put together. I liked him because he was honest, conscientious, and weird. He liked to do bizarre experiments with Tesla coils in his backyard for fun and had collected all the pharmaceutical company promotional pens he'd received as gifts from sales reps, arranging them incredibly artistically in a frame box and wiring them up with a light display in his waiting room. I always wondered what the reps thought of that.
What the infrequency of my visits brought was for him a very clear view of my deterioration. 6 or 9 months can show up a lot of change that you don't necessarily detect so easily if you see someone every four weeks or more. We shall now cut to the chase, as it were.
I was spending 4 or 5 hours a day eating just to try and maintain weight. I had been weighing myself at my local doctor's office, at the dietitian's, here and there, and just allowing my mind to fuzz about how scales were a bit different anyway if there was a lower reading than my last, but nonetheless celebrating any apparent gain, despite what scales I'd used. My diet was becoming more and more restricted as there were so many sorts of textures I now could not seem to eat (or drink) safely without bits making their way into my airways. So I was constantly making hideous choking and coughing noises which tormented my wife and probably also the neighbours, always feeling hungry, and at great risk of aspiration pneumonia. I had ceased work because I really had to, and was being Retired Due To Total And Permanent Disability, as the Australian Public Service calls it. Every single other symptom was undeniably worse, and there were some new ones now too.
At a much later meeting with Dr Peter (a year and a bit ago now) he paused for some time after our little initial chat (also something increasingly hard for me to do; chat I mean, not pause) and then said "So, you've lost about 10 kilograms in 14 months." And paused again. Just like both George Costanza and Julius Sumner Miller, he always seemed to have a hint of a smile playing about his features, even in very serious moments. "So I think it's time we looked at putting in a PEG tube, like we talked about"
Long pause.
Me, bravely: "I do remember you mentioning it, but...."
Bravery evaporates, faux stoicism cuts in momentarily, falters, then returns; so I can almost carry off relaxedly saying "...but that just seems so...so...palliative."
For indeed, my world had crumbled at the lightest touch of just a few words - kindly, but well-considered words - that meant exactly the opposite of harm. Yet I did not feel loved, right then.
Dr Peter spoke words about how so many people lived for a very long time with such tubes, how commonplace they were these days, and so on. He said it was actually a pretty minor procedure to emplace. He was really just bringing me back from emotional overload land by talking about the practicalities in terms of others, not me, while giving my poor scared mind some little life rafts to cling on to. Clever man, really. I was still resisting.
I spoke some more about the specially formulated hi-calorie instant pudding stuff my dietitian had put me on, and how maybe if I could manage some more of that each day......how it might be good to wait and see pending.....I don't even remember now the counter arguments I was lamely throwing up - pun intended. There was another of those pauses about now. Then Dr Peter gave me a very powerful pair of overlapping mental images:
"If you drew on a graph your weight loss over the last 18 months or so, and projected that line into the future, how long would it be until you got to, say, 45 kilos? Because that's you basically bed-bound."
Oh. Quite. Right then.
Dr Peter said he'd send a note to a surgeon to arrange a placement, and that the surgeon could explain all about the mechanics of it. I left his office that day upset, but rather more intensely alive and 'in' myself than I had in quite some while. I went home, told my wife, and we cried. This changed things, profoundly.
Our life at this time was pretty full-on anyway. Trying to tie up the final details of the official retirement, which brought with it a whole other huge set of challenges and opportunities, and intending to buy a house. Our finances were very limited indeed, and up until now we were still going along as if I would not get appreciably worse (at worst) and as if I would soon find some way to get better. Genuine and complete acceptance of the possibility that the reverse may turn out to be the case was still a fine line away at this time, for me anyway. We'd been looking for hopefully a larger parcel of land to grow a big productive garden on, or even maybe a few acres to have a horse at home too, so we were looking way out in the sticks to suit our budget. Well now with a sudden seeming hyper-medicalisation of our future, and freshly rekindled horror memories of my last few times in hospital when stuff was seriously bad, scary and painful - plus a whole new layer of depth on dealing with the ever-increasing likelihood of the imminence (and probable circumstances) of my demise, we decided that we would be better to prioritise a more reasonable closeness to the city with its specialists and a good local hospital. There were some pressures (I'll spare you the details) to move fairly fast with the house thing too and I decided that we'd continue to move on that front while the whole tube adventure begun. Another little lingering shadow over my imaginings of my tube placement was the recent experience of a close friend going into hospital and undergoing all sorts of unforeseen drama and suffering, which we shared in a lot of ways, and which did cast just a small negative of doubt about hospitals, anaesthesia, doctors....all that.
A date was set. We found a house. It worked out that I'd be moving house 8 or 10 days after the tube went in. Crazy? I don't know. From decision to surgery, the whole thing took less than 2 months.
On the appointed day Meeta drove me down to the hospital, and I began my wait. It's the weirdest feeling, sitting in a tiny waiting room with a couple of other people, all the 'day surgery' patients, waiting to be called in and gowned up. Eventually I'm processed, and now wait in a different way, lying in a gurney in a rank of others similarly pensive. No-one is talking. I recall my last time here perhaps almost two years before waiting for an endoscopy and so forth, when I discovered that people under sedation can sometimes be quite vocal, even if they don't remember it later. It became quickly apparent that the dainty and demure blonde teenage girl before me was experiencing a colonoscopy under sedation, as I could hear her roaring at the staff "GET that F*#KING thing OUT of my F*#KING arse you F*#CKING C*#TS !!!" and so on and so forth. The doctors were being most schoolteacherish with her, telling her to behave and co-operate and using her name a lot, rather than trying to pacify, mollify, or reason with her. Just as well I'll be under general, I'm thinking.
But no.
Apparently my time and monetary investment in having a consultation with the surgeon's favoured anaesthetist was all to no end, the surgeon briskly tells me as he flies in, he's decided to do it under sedation only, so he can wake me up and get me to assist with getting the scope and things down my oesophagous if he needs to. Which is exactly what happened, as it happens. I remember congratulating the surgeon on getting a cannula into my vein first go (my skin makes it tricky) and the next thing I recall is him speaking very loudly at me to open my mouth as far as it would go (not far in my case), and giving me instructions for arching my neck, swallowing, etc....and then nothing.
I don't remember the recovery ward part. As far as recollection goes it was waking up on the ward (they wanted to keep me a day or two) and before even opening my eyes, seeking out my stomach with my hands....and there it was! It hurt a bit - it was pointed out that it was basically a stab wound after all - but not terribly. I did have trouble with the first couple of feeds, in that I had massive stomach cramps and spasms (this did hurt a lot) but during that time a funny thing happened.
My eyes don't close properly, so at night I fill them up with a special lanolin and paraffin ointment to protect them while I'm asleep, and I use special eyedrops all the time during the day. Of course I'd been sedated and recovering for a few hours now, so my eyes were all blurry and sore. I was drifting in and out of sleep and going through spells of amazing pain. You know those curtains that go around hospital beds? With the aluminium track that curves around the foot of the bed? Up there, directly where my gaze fell on the curtain track, something was written, faintly. I couldn't quite make it out and at first assumed it was just a maker's mark or somesuch. As I became more alert and aware, and my eyes improved, I could see that it was four letters, capitals - HDPE. High Density PolyEthylene? What? I don't get it, and it's not printed, even though it's neat, someone's got up there with a pencil or something and written HDPE....who the? What the? I don't get it.....and actually, the writing looks familiar.
You remember I mentioned my friend who'd been in hospital not long previously? He died once or twice during his operation, and had all manner of complications with what was initially supposed to be pretty routine surgery. In and out of intensive care for a bit. Also an artist and writer, with very recognisable and consistent penmanship and suddenly it all delightfully fell into place. He'd been in this bed, in fact I'd visited him in this very spot, and as he got better he'd climbed up there and written "HOPE". The delight lasted maybe 2 seconds, then...
I was instantly furious. Hope was what had gotten me such incredible pain and repetitive disappointment, led me to despair, tied me up in knots of wanting, supported me in the delusion that I was somehow going to find a way to be cured.....truly, I was livid, but at myself, not anyone else. And I had one of those little special Moments Of Perfect Clarity. It was not hope that was the issue at all, it was specific hopes. Hoping for particular outcomes, like getting better. Like not being killed by this thing. Like putting on weight - all sorts of little hopes. I remembered, re-realised, if you like, that I'm not the one with the plan here. My thoughts about what's best and good and right for me are dodgy at best, filtered through all the crap of 'knowledge', expectation, moral certainty and simple dumb habit of mind that fills your life from the moment you are born (or even before), and at that moment I had that *other* type of knowing that seems to come from the deepest and most Truthful place. I knew about faith. Not faith in Christ or faith in love or faith in good's triumph over evil or any of that wordy preconditioned judgy garbola of the mind; just faith. Faith that things shall be as they need to be, and that it's not only fine for me to have no clue as to what I might need to experience, its probably a blessing. So then, I felt grateful. And sent my friend a text message.
A day or so later I went home.
With a whole new tube.
The rest, as they say, is.
Over the course of this blog adventure so far you can see a lot of the ways I've changed I suppose, and the tube moment was a really pivotal one. It helped crash me through that final acceptance barrier, and I suspect that as a result of this alone, it's been the most healing event in my life for I don't know how long. I loved my tube for a while - I suppose I still do in a way - but now it's been almost a year it just seems like such a part of me as to be almost organic some days. Early on it was such a blessed relief from the eating struggle, even if the whole digestive thing took another maybe 8 or 9 months to really get to a 'normal' state of affairs and there was much rending of hair and frustration along the way.
I guess what I'm saying is that I'm comfortable with it at this time. So happy almost anniversary me, (it'll be August 20th, btw), being a cyborg is great.
I spoke some more about the specially formulated hi-calorie instant pudding stuff my dietitian had put me on, and how maybe if I could manage some more of that each day......how it might be good to wait and see pending.....I don't even remember now the counter arguments I was lamely throwing up - pun intended. There was another of those pauses about now. Then Dr Peter gave me a very powerful pair of overlapping mental images:
"If you drew on a graph your weight loss over the last 18 months or so, and projected that line into the future, how long would it be until you got to, say, 45 kilos? Because that's you basically bed-bound."
Oh. Quite. Right then.
Dr Peter said he'd send a note to a surgeon to arrange a placement, and that the surgeon could explain all about the mechanics of it. I left his office that day upset, but rather more intensely alive and 'in' myself than I had in quite some while. I went home, told my wife, and we cried. This changed things, profoundly.
Our life at this time was pretty full-on anyway. Trying to tie up the final details of the official retirement, which brought with it a whole other huge set of challenges and opportunities, and intending to buy a house. Our finances were very limited indeed, and up until now we were still going along as if I would not get appreciably worse (at worst) and as if I would soon find some way to get better. Genuine and complete acceptance of the possibility that the reverse may turn out to be the case was still a fine line away at this time, for me anyway. We'd been looking for hopefully a larger parcel of land to grow a big productive garden on, or even maybe a few acres to have a horse at home too, so we were looking way out in the sticks to suit our budget. Well now with a sudden seeming hyper-medicalisation of our future, and freshly rekindled horror memories of my last few times in hospital when stuff was seriously bad, scary and painful - plus a whole new layer of depth on dealing with the ever-increasing likelihood of the imminence (and probable circumstances) of my demise, we decided that we would be better to prioritise a more reasonable closeness to the city with its specialists and a good local hospital. There were some pressures (I'll spare you the details) to move fairly fast with the house thing too and I decided that we'd continue to move on that front while the whole tube adventure begun. Another little lingering shadow over my imaginings of my tube placement was the recent experience of a close friend going into hospital and undergoing all sorts of unforeseen drama and suffering, which we shared in a lot of ways, and which did cast just a small negative of doubt about hospitals, anaesthesia, doctors....all that.
A date was set. We found a house. It worked out that I'd be moving house 8 or 10 days after the tube went in. Crazy? I don't know. From decision to surgery, the whole thing took less than 2 months.
On the appointed day Meeta drove me down to the hospital, and I began my wait. It's the weirdest feeling, sitting in a tiny waiting room with a couple of other people, all the 'day surgery' patients, waiting to be called in and gowned up. Eventually I'm processed, and now wait in a different way, lying in a gurney in a rank of others similarly pensive. No-one is talking. I recall my last time here perhaps almost two years before waiting for an endoscopy and so forth, when I discovered that people under sedation can sometimes be quite vocal, even if they don't remember it later. It became quickly apparent that the dainty and demure blonde teenage girl before me was experiencing a colonoscopy under sedation, as I could hear her roaring at the staff "GET that F*#KING thing OUT of my F*#KING arse you F*#CKING C*#TS !!!" and so on and so forth. The doctors were being most schoolteacherish with her, telling her to behave and co-operate and using her name a lot, rather than trying to pacify, mollify, or reason with her. Just as well I'll be under general, I'm thinking.
But no.
Apparently my time and monetary investment in having a consultation with the surgeon's favoured anaesthetist was all to no end, the surgeon briskly tells me as he flies in, he's decided to do it under sedation only, so he can wake me up and get me to assist with getting the scope and things down my oesophagous if he needs to. Which is exactly what happened, as it happens. I remember congratulating the surgeon on getting a cannula into my vein first go (my skin makes it tricky) and the next thing I recall is him speaking very loudly at me to open my mouth as far as it would go (not far in my case), and giving me instructions for arching my neck, swallowing, etc....and then nothing.
I don't remember the recovery ward part. As far as recollection goes it was waking up on the ward (they wanted to keep me a day or two) and before even opening my eyes, seeking out my stomach with my hands....and there it was! It hurt a bit - it was pointed out that it was basically a stab wound after all - but not terribly. I did have trouble with the first couple of feeds, in that I had massive stomach cramps and spasms (this did hurt a lot) but during that time a funny thing happened.
My eyes don't close properly, so at night I fill them up with a special lanolin and paraffin ointment to protect them while I'm asleep, and I use special eyedrops all the time during the day. Of course I'd been sedated and recovering for a few hours now, so my eyes were all blurry and sore. I was drifting in and out of sleep and going through spells of amazing pain. You know those curtains that go around hospital beds? With the aluminium track that curves around the foot of the bed? Up there, directly where my gaze fell on the curtain track, something was written, faintly. I couldn't quite make it out and at first assumed it was just a maker's mark or somesuch. As I became more alert and aware, and my eyes improved, I could see that it was four letters, capitals - HDPE. High Density PolyEthylene? What? I don't get it, and it's not printed, even though it's neat, someone's got up there with a pencil or something and written HDPE....who the? What the? I don't get it.....and actually, the writing looks familiar.
You remember I mentioned my friend who'd been in hospital not long previously? He died once or twice during his operation, and had all manner of complications with what was initially supposed to be pretty routine surgery. In and out of intensive care for a bit. Also an artist and writer, with very recognisable and consistent penmanship and suddenly it all delightfully fell into place. He'd been in this bed, in fact I'd visited him in this very spot, and as he got better he'd climbed up there and written "HOPE". The delight lasted maybe 2 seconds, then...
I was instantly furious. Hope was what had gotten me such incredible pain and repetitive disappointment, led me to despair, tied me up in knots of wanting, supported me in the delusion that I was somehow going to find a way to be cured.....truly, I was livid, but at myself, not anyone else. And I had one of those little special Moments Of Perfect Clarity. It was not hope that was the issue at all, it was specific hopes. Hoping for particular outcomes, like getting better. Like not being killed by this thing. Like putting on weight - all sorts of little hopes. I remembered, re-realised, if you like, that I'm not the one with the plan here. My thoughts about what's best and good and right for me are dodgy at best, filtered through all the crap of 'knowledge', expectation, moral certainty and simple dumb habit of mind that fills your life from the moment you are born (or even before), and at that moment I had that *other* type of knowing that seems to come from the deepest and most Truthful place. I knew about faith. Not faith in Christ or faith in love or faith in good's triumph over evil or any of that wordy preconditioned judgy garbola of the mind; just faith. Faith that things shall be as they need to be, and that it's not only fine for me to have no clue as to what I might need to experience, its probably a blessing. So then, I felt grateful. And sent my friend a text message.
A day or so later I went home.
With a whole new tube.
The rest, as they say, is.
Over the course of this blog adventure so far you can see a lot of the ways I've changed I suppose, and the tube moment was a really pivotal one. It helped crash me through that final acceptance barrier, and I suspect that as a result of this alone, it's been the most healing event in my life for I don't know how long. I loved my tube for a while - I suppose I still do in a way - but now it's been almost a year it just seems like such a part of me as to be almost organic some days. Early on it was such a blessed relief from the eating struggle, even if the whole digestive thing took another maybe 8 or 9 months to really get to a 'normal' state of affairs and there was much rending of hair and frustration along the way.
I guess what I'm saying is that I'm comfortable with it at this time. So happy almost anniversary me, (it'll be August 20th, btw), being a cyborg is great.
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