Necessary pain


I’m in bed, where I reckon I’ll be spending much of the next 6-8 weeks. I’m better than I was, but I’m not in a good way.

I wrote the other day how the chemo had knocked me around. I saw my oncologist yesterday and she revealed it was the most intense of chemo programs they have, and the most effective.

The worst effects of it have diminished some since Saturday, though not gone away. I’m still nauseous, but not so much. Some taste has returned. Common symptoms of chemo is either diarrhoea or constipation – I have the latter. And I’m dreadfully fatigued.

Overall, I’m feeling better than Saturday, but not by much. I’d be better but for the radiotherapy, which has blown up the whole right of my face as much as when I came out of surgery. I’m puffy and numb and I have little control of voice or eating. I feel lop-sided, like a Picasso painting.

If anything, this will get worse even as I recover from chemo. I had one session this morning and another this afternoon to make up for the public holiday on Friday.

I’m left with little energy or desire. Even sitting up to watch TV tires me. Doing this tires me no end. I lay in bed propped up, half the time just lying there. I fade quickly too if I talk too much, but I find myself craving company.

What do they say? Misery craves company? I don’t need or want someone to talk to necessarily, just the sense of human company. Someone in the house doing their thing while I wallow in my bedroom. I don’t feel unsafe, as I did occasionally in the weeks past, but I feel an increasing need for support with the little things. I manage, but it’s becoming increasingly more difficult, and things are falling by the wayside.

I have a friend who is preparing a fundraiser for me. It’s necessary because I’ve had no income since the start of August, and the insurance doesn’t cut in until November – hopefully. I have rent in the meantime, as well as the other usual expenses.

I suppose it sounds rather bleak. It probably is. My attitude is that there’s a finish line and I just need to put my head down and keep ploughing forward. This is the necessary pain.

State of play – first week


First week of therapy completed – three days of it anyway. There was some trepidation going into it, but now I know what to expect. Radiotherapy I’ve got used to quickly. I’m in and out in 10-15 minutes, and there’s no great discomfort. I’m sure it will get harder as therapy progresses.

I’m a bit over the number of jabs and injections I’ve had in the last couple of months, but I turned up on Friday for my first chemo session. Not much to it, really. Got hooked up to a drip and sat there for 4 hours looking out the window and listening to music.

Thursday overnight, more stitches were released in my mouth, which allowed me to open up my mouth by another half inch. On Friday, between sessions, I was bold enough to buy a couple of potato cakes from the hospital kiosk and munched on them in the courtyard. After being restricted to purees and soups and bland food generally, they came as a gastronomic revelation.

That night my lockdown buddy visited and bought some take-away. I had some chips and chicken strips. Great. I slept only two hours Friday night, probably because of the steroids I’d been given. I slept late and woke up to heavy nausea. I felt leaden and sour and devoid of energy. I had zero appetite, but my taste buds were up shit creek anyway. Everything I ate or drank tasted vile and bitter. So, is this is how it’s going to be from here on in, I wondered? I’d been warned about this. The day after, I don’t feel half as bad. It feels as if I was in a trance yesterday. I’m not even sure what I did to fill the day.

I took a sleeping pill last night and lights out at 8pm. After that, I slept solidly until 7am. This morning, more energy, and though I’m off my food still, the taste in my mouth is much less bitter. And the nausea is in the background. Hopefully, it’s a trend that continues – the chemo will be out of my system in a week. But, you have to expect it will continue to get worse as I go along – that’s the playbook for this.

That’s where I’m at now. Dealing with it. As you will have seen, I’m counting down the days and trying to make it fun. Cancer is a shit sandwich, but you’ve got to take what you can along the way. One day this will be over, and life will be back to normal. That’s the big picture – just need to keep turning up until that happens.

The gimp


So, I’ve now had my first two radiotherapy sessions – yesterday at 3pm and today at 8.40am.

Not much to it, really. I’m in and out within 15 minutes, and half of that is the setup.

So far, the hardest part of it is the mask, which is so form-fitting that I wonder if I could open my eyes inside it. It fixes you in place and contours to every curve on your face, to the degree that might be claustrophobic if I had to wear it too long. On top of that, my nose is plugged, and I wear a mouthpiece with a narrow breathing tube in the middle of it.

It feels like I’m wearing a gimp mask, more or less, complete with a mouthpiece. But, it’s okay, as the actual treatment lasts no more than 6-7 minutes.

It’s a curious experience laying with this contraption on your head as the radiotherapy thingy does its work. There’s a lot of whirring, and through my eyelids, there’s flashing lights discernible, blue and white. I don’t actually feel anything, not yet anyway – that will come. There will be a cumulative effect. Over time, I’ll develop a sunburn in the area I’m targeting, and the patch of beard there will likely fall out. And the mouth ulcers.

I’m told I’ll start to feel something after about two weeks, though some feel a difference after just a week. The longer, the better as far as I’m concerned.

Tomorrow I start on chemotherapy. That’s from 9.30 for four hours, a break, and then my radiotherapy session.

From Monday I’ll be taken to and from the hospital by ambulance transport. Yesterday Cheeseboy chauffeured me. We detoured to a chemist and click and collect at Bunnings on the way back, and it was good to be out. This morning he dropped me off, and another friend picked me up. It’s a lovely sunny day, and on the way back, we stopped for takeaway coffee from a cafe in Elwood. These are the small pleasures I look forward to these days. Enjoy them while I can.

Starting today


Radiotherapy starts for me today. The prevailing sense is curiosity. I wonder what it will feel like and wonder how I’ll manage it.

I’m not particularly claustrophobic, but that’s one thing the doctors warned of. I don’t expect it to be a problem, but I can understand why it might be. You’re fixed in place, unable to move. This is important obviously, as the radiation has to be precisely directed. I’ll be wearing a strange mask, moulded close to my face and shoulders. It’s largely open, but it is intrusive. On top of that, I’ll be fitted with a mouthguard, and potentially, nose plugs. Then I have to lie still while I am conveyed into a tube, where I’ll be treated for about 15 mins.

I got a call from the oncologist a couple of days ago. As the cancer reached near to my eye, they’ll be sending radiation quite close to the optic nerve. There was a small chance, she said, of this leading to a deterioration in vision of up to 5% over a period. She hastened to add that no one she had yet treated had experienced this. I agreed, of course – what else am I going to do?

I’m keen to get started, even though I don’t think I’m physically up to it yet. It seems that progress has stalled over the last fortnight. I don’t feel any better, and my mobility has not come on as I expected. In ways, I’m worse. The pain is considerably more than before, and I’m back on painkillers 24/7. There are two types of pain – the aches and pain related to the swelling, which extends to my eye and ear and back of my head, and what I call dental pain, resulting from my mouth being all stitched up. If a nurse asked me now where my pain is at, I’d tell them 6 or 7.

Pain is a part of the healing process, so I’m not too concerned about it aside from the physical distress. I don’t look forward to having extra pain on top of it, though.

There’s clearly still a lot happening in my body. A couple of nights, I’ve woken drenched in sweat. One morning I had blood trickle from my right nostril. I’m required to clear out my nose a few times a day, and lately, there’s been trickles of blood after. I’m expelling clots of blood and the occasional thread – a dissolving stitch. I presume once more that this is a part of the cleaning out process and normal.

I’ve taken to resting more, which isn’t hard. The last few days, I haven’t got out of bed until 11. I’ve had a bath then, before dressing for the day. I’m conscious of how many calories I’ve been burning up – up to 5000 on the back of 2000 paces (about 5 times greater than my healthy rate) – and so I’m moving less and eating even more. I’d go to sleep before with a bit of a belly and wake to it being as flat as a pancake. That’s improved in recent days, and I have to build that store further in anticipation of the hard times ahead.

I guess this is all a part of getting well again, but I wish I knew more. Ideally, I’d prefer to be in a better state before commencing on a program of radiation and chemo. But I’m also keen to get this started and hopefully eradicate the remnants of cancer in my body. The best chance comes with an early start (I wonder if some of the pain I feel might not be cancer-related). In any case, the sooner I start, the sooner I finish.

The good from the bad


I’ve had quite a few visitors over the last few days, all of them bearing gifts of groceries and goodies. I’ve come to realise that when you’re perceived as being helpless, others want to help. I was resistant at first, as I always am when it comes to charity and favours, until I realised two things: I needed their help, and by allowing it, I was doing them a favour.

I’ve got plenty of good quality food in the fridge at the moment and open invitations to ask for more as I need it. I actually intend to try cooking something myself this week – mum’s recipe for potato and leek soup.

I appreciate the goodies, but what I really cherish is the human contact. I feel like I’m in home detention here, more or less. Except to go to the hospital, I don’t get out, and I’m still a week or two away from trusting myself to take a walk to the shops. So any visit interrupts the monotony of this life and takes hours off the clock I’d otherwise have to find a way to fill. And they’re a reminder that friends and social interaction – people – are at the centre of a healthy and happy life.

Naturally, they’re all very curious about my time in hospital and express how well I’m looking without exception. That’s purely in relative terms as I still look pretty ordinary, but as they were expecting the heinous aftermath of facial surgery, pretty understandable. It’s true, other than the swelling – which will pass – you would hardly know that my face was laid open. There’s a subtle scar that runs alongside my nose before branching into an L shape. You have to look hard to see it, and with my glasses on, it’s virtually invisible.

I’m curious to see what I look like once the scarring recedes and I’m back to normal. It won’t be near as bad as I feared, but I won’t be as good as I was before either is my bet. I suspect something will appear just a little off.

In one conversation, it was speculated how this had happened to me. I explained that it was bad luck, especially given that I possessed none of the usual indicators for such a cancer. The question was larger than that, though, more existential: why me?

Of course, it’s natural to wonder that yourself. I deal with it by admitting that there’s a statistical probability of X for getting any cancer; in this case, the X landed on me. Basically, someone has to get it, and this time it was me.

But when I couple it with the hardship I’ve had to deal with previously – the near bankruptcy, homelessness, the fracture in my family, and so on, it appears unreasonable, if not unfair (as if fair came into it). This was the point made by the questioner.

I’ve been very careful not to feel sorry for myself. One of the things I despise most is the sense of victimhood some people cling to. I certainly don’t want to be a martyr. And, in the circumstances I find myself, self-pity would be ruinous.

I always remember many years ago reading about chance and probability with particular reference to playing cards. A particular phrase stood out to me that I’ve remembered ever since: the cards have no memory. In other words, it doesn’t matter what came before because it bears no relation to what comes next. Of course, life isn’t entirely a chance event, and there are triggers and consequences, but in many regards, probability plays no part.

There’s no relationship between down at heel and cancer unless you choose to believe that the stress of one leads to the other. I just happen to think it’s bad luck.

It’s human nature, however, to search for meaning – and perhaps, to ferret out a positive. The oft-repeated phrase that everything happens for a reason bears that out. I’m not a believer in that, for the reasons I’ve described above – but then, what would be the meaning – the purpose – if such a thing existed?

I can only think of one. I’m suffering now as I suffered before, but the suffering is of a much different nature. When it comes to suffering, I’m coming towards a well-rounded experience. Not much fun for me, but what do I gain from it?

The only thing I can think of is by way of a kind of wisdom and depth of understanding. Because I experience more, I feel more and, ultimately, acquire insight forbidden to me before. I hope that’s true, but feel it must be. I’m not rushing to any resolutions yet, but reckon I have a better idea than before.

All of this should benefit my writing as if it was the point of this suffering. I’m incapable of writing creatively at the moment – I don’t have the concentration or inspiration – but it will come back, and when it does, I’ll have so much more to draw upon.

That’s it, though, and given a choice, I’d have passed on the suffering and wisdom to live as I did before.

Let me sleep


Generally, I wake up just before 7am, and if I don’t, Rigby will remind me. I’ll listen to the news on the radio and then get up, feed Rigby and sit down to take the medication prescribed to me by the hospital – which now includes a couple of panadol. Then I’ll go back to bed with a dairy drink.

If I’m not going to the hospital, the day is pretty dull – a combination of reading, audiobooks, music, and TV. Because I’m short of energy, I’m generally in bed by 9pm, though there’ve been a few nights I’ve been up later watching the footy or a movie. By 10pm, the light is out.

Sleep is coming harder to me now. The receding numbness means more tender spots and in strategic areas – my hip and my face. It’s tough to get comfortable, and the quality of my sleep has declined in the last week.

I finally got to sleep last night at around 11pm when my phone chirped, waking me up again. It was a mate sending a meaningless message, and at that moment, I was furious at his utter thoughtlessness. I didn’t get to sleep until after midnight and slept poorly. All the signs this morning were negative, and I considered staying in bed all day to claw back some of the resources I lost.

There’s no doubt that as each day passes, the pain gets a little worse. I’m just about on permanent pain killers now, and it will only worsen once my treatment begins. It’s a fact of life, but I’m certain I will need something stronger than panadol to manage it.

In ways, it’s all about timing. If the treatment was starting a couple of weeks later, I’d be more confident believing that I had healed sufficiently to avoid the double whammy. Though I’m hurting currently, most of the pain is indicative of the healing process. In time – probably 3-4 weeks – I reckon most of the healing will have completed and the pain, presumably, much diminished.

I don’t have that luxury and know that the treatment will aggravate and slow the healing in my head. I’m heading towards a world of pain there. My hip and groin should continue to heal undisturbed, I presume, though as I weaken, that may be delayed also.

It seems unfair that I should have to deal with two compounding sets of pain. Hopefully, the healing is quicker than I forecast.

I’m certainly walking better and further, though I begin to feel it in my hip if I walk too far. I’ve progressed from a shuffle to a limp, but when I’m fatigued, the limp becomes pronounced.

I’m probably feeling some anxiety about what’s to come, but expect that will settle once I start. And I presume it will take a week or two before I begin feeling the combined effects of radiotherapy and chemotherapy.

I know that from here on in, I must maximise my strength and get quality rest when I can. You never know, it might not be so bad.

Eating with my mouth shut


I eat the same stuff every day. I mix it up sometimes to make it more interesting, eating things in a different sequence from before maybe, and trying different flavours – but there’s no real variety.

The cornerstone of my diet is porridge, soup and scrambled eggs. In between, I eat fruit purees or jelly. I’ll make up a batch of sustagen or indulge myself with some chocolate mousse or rice pudding bought at the supermarket. I’ve taken to drinking Gatorade for the electrolytes.

I’ve got three different types of porridge in the pantry, to which I always add a dollop of butter. I would eat with cream before – I have to put on weight after all – until I discovered it’s even better with yoghurt. Most days, I’ll add some psyllium husk to it.

I’ve had friends make soup for me, and Donna ordered a batch delivered over the weekend. I’ve had pumpkin, tomato and basil, and mushroom soup so far. Tonight it will be cauliflower with Dijon mustard.

Then there are the scrambled eggs. I love eggs, particularly when it comes with toast, which it most definitely doesn’t at the moment. I make a creamy scramble to make for easier eating – lots of cream and butter. Much as I love scrambled eggs, it gets a bit tedious when it’s the same every day. Fortunately, you can trick eggs up pretty easy. So far, I’ve had scrambled eggs with truffle oil, black garlic, cheese and chives, chilli, and Sriracha sauce. Today I made curried scrambled eggs – curry powder mixed in with an Indian onion chutney for sweetness. Very good.

I’ve experimented, with mixed results, trying other things. For example, I made a mac and cheese mash, which wasn’t bad, which I then converted into a hash. I tried something similar with rice, with less success.

My friend JV has made me a couple of vegetable purees – cauliflower and pumpkin – which I’ve jazzed up my end by adding cheese sauce and a bit of spice, and with a touch of ginger and chilli. All my friends have more bland tastes than I do.

I’m hoping to get more ambitious with my eating, particularly as I need to build my strength, but it seems doomed.

Craving a bit of illicit flavour, I ate a big bag of Twisties over a few days last week. I chewed each twistie carefully, then swallowed the crumbs. I had no problem with the swallowing, but with a mouthful of stitches, there are plenty of nooks and crannies for food to lodge.

I’m sure I could eat more solid food, only I can’t open my mouth more than an inch, and my ability to chew is inhibited. I’ll get more movement as the stitches dissolve; the only problem then is that I’ll likely have a mouth full of mouth ulcers. Then, when I get over them, no tastebuds to enjoy my food. It’s pretty perverse, actually, as if some particularly nasty person has designed it that way.

Food is one of the great delights of my life, and I’m denied the pleasure of it for months on end – not to mention wine and cheese. Like most things currently, I’ve packed those things away in my mind. I’ll return to them when I’m better.

At least, right now, I have a little cheesecake a friend left for me – indulgent and melts in your mouth.

Close my eyes and keep going


This is yesterday’s Facebook post, which updates with the latest medical news. In some ays it’s grim reading – it’s going to be a fucking hard 6 weeks – but, as I keep on saying, it’s better than cancer:

I went back to the hospital this morning to meet the chemo doctors ahead of treatment beginning next week. I’m ever hopeful of meeting a doctor and them telling me ‘actually it’s not so bad’, or ‘it’ll be a walk in the park’. The closest I’ve had to that was a surgeon last week telling me I’ve done very well. Today, they looked at me sympathetically and told me to hang on tight.

Rather than weekly, I’ll be getting chemo every three weeks, but at a much higher dosage. The good news is that I shouldn’t lose any hair, and combined with radiotherapy, it should increase the chance of a permanent cure – i.e. no recurrence – to 70-80%. The bad news is that in combination, I’ll be knocked about terribly – mouth ulcers, fatigue, loss of taste for up to 2 months after, possible loss of hearing or tinnitus in my right ear – maybe even permanently, and the strong possibility that I’ll need a feeding tube.

I can’t do much about most of those things, and regardless, all of it’s better than cancer. I don’t look forward to it, but I’ll be on morphine to manage the pain.

One thing I don’t want is a feeding tube, but that very much depends on how much weight I lose. Mouth ulcers will make it very difficult to eat, along with general nausea, but I must keep my strength up.

In the aftermath of my operation, I figured I was left with about 20% of my pre-surgery strength. With consistent eating, I reckon I’m up to about 40% now. Hopefully, I can get it up around 60% by the time I start treatment. It’s not ideal, and no matter where I get it to, it will be much less come the end of October.

I reckon I’ve put on weight, but as a measure of how much I’ve lost, my jeans keep falling down, and that’s with the belt cinched to its tightest. The rest of the time, I look like a hip-hop artist or a skateboarder, and I’ve ordered a smaller pair online so I can go out in public with some dignity. I may need to go another size down when I’m finished.

All this must happen. I can try to boost my weight and strength, but there’s no avoiding this treatment if I want to survive. I just have to make the best of it.

I start next week and finish in early November. They tell me it takes about nine weeks of recovery until I begin to feel normal. That takes us into the new year. By then, my taste buds should be back on duty, my vision cleared up, and, I expect, my hearing normal. I’ll be fully mobile by then, and even if there’s still some swelling in my face, all the stitches will have released. I’ll be able to smile again, eat properly, and hopefully be as eloquent as I ever was. And, it will be party time.

Lawrence


Another of the documentaries I’ve watched in recent times was about T.E. Lawrence – better known as Lawrence of Arabia. I’ve long found him a fascinating character, as have many thousands of others. He was so complex and enigmatic and managed to achieve remarkable things, yet lived out his shortened life tortured by his failures.

As most people do, I probably encountered him first through the movie based on his desert exploits. It’s a glossy, romantic, beautiful-looking movie with Peter O’Toole playing Lawrence. I don’t know how true it is to the man himself – probably not a lot – but it holds true to general facts. The battle scenes are vivid, and O’Toole and Omar Sharif (as Faisal) are magnetic.

Later on, I picked up Seven Pillars of Wisdom from a local bookshop and began to read. I don’t think I ever finished it – I should try it again. What I remember was the prose, which could be overwrought, but equally could draw you in. It was perhaps a bit too wordy for my younger self, but I took things from it. There’s a famous quote from it which for years I would hold up as a type of philosophy:

All men dream, but not equally. Those who dream by night in the dusty recesses of their minds, wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act on their dreams with open eyes, to make them possible.

I still believe in the principle of it: it was who I wanted to be.

I have carried him me in the years since, as you do various characters, as I have Hemingway who I wrote of the other day. They’re characters that connect with you in some way – they intrigue you, or you feel a sympathy for their beliefs or personality, or, quite often, they excite an ambition in you. They become a part of your internal make-up.

What was it about Lawrence? Perhaps I’m drawn to complex characters. In his case, I think it’s the combination of high adventure and intrigue in the desert, like a boy’s own story, combined with the dense complexity of the man who was unable to accept that he failed his friends – not that it was his fault.

He was betrayed himself by the French and English governments, who betrayed the promises Lawrence had made to the Bedouin he led and fought with. The long shadow of that betrayal is the chaos that reigns now in so much of the Arab world.

In many ways, I find him a foreign character. If we ever met, I think we’d find little in common beyond curiosity and wonder. He was a repressed, closed individual. He was driven by inner demons and perhaps an innate rebelliousness. Whatever the reason, he seemed unwilling to accept the status quo presented to him – perhaps we might find common ground there, also.

I thrill to his desert adventures but suspect they were more cinematic than effective. I was in the desert he traversed some years ago, and which we see in the movie made of him – grand, breathtaking rock outcrops, like headlands, amongst a sea of sand. I tumbled down a dune, I remember and spent the night at a Bedouin herders camp. It was a memorable experience.

There’s no doubt that Lawrence was a bit of a strange character, but of the type the world needs more of – brilliant, idealistic, decent, honest, stubborn, and tough. He was a visionary with the ability to vividly articulate a purpose. He seems hardly the charismatic type, yet he was able to inspire the Bedouin tribes to a common purpose. Of course, he had his flaws and personal weaknesses, which he was intensely aware of, but we’d hardly bat an eye at them in our times.

He was naive and innocent too, which was his downfall, and the thing he could never get come to terms with. There are many worse things than that. In this case, what he saw as his failure changed history.

Out of my head


When I went back to the hospital last week, I asked a surgeon to explain the hallucinations and paranoia in the days following my surgery. He said it was not unusual. The combination of drugs and a lack of sleep can do funny things. I’ll take him at his word. For me, it was one of the scariest things I’ve ever experienced.

There’s so much I’m uncertain of, what happened or what I think happened, what I saw, what I felt and heard. That’s the whole nature of what I experienced. Throughout, you’re never sure what is fact and fiction, and what the nature of reality is.

This is how I experienced it. One moment I was laying there on the hospital gurney listening to the conversation and my right arm outstretched at an awkward angle, watching the complex preparations as anaesthetics, meds, whatever are programmed. There must be half a dozen people around me doing their thing with the light bright above. Everything is heightened but normal.

Then it’s like someone flicked a switch. The next moment in my experience, I’m faced with what appears a screen full of scrolling little green badges. It felt like I was within a machine, and in my muddled state of mind, I came to believe in a miserable truth: this was the matrix, and I was inside it. The feeling was doom, but also shocked surprise. It really was true, after all.

That’s my memory of it, but that’s likely the rewrite. The linear record is disjointed. Did I really lose consciousness at that point? Or was it rewritten in subsequent drafts, overwriting any version previous to that?

In any case, it went on from there. I found myself in an evolving, complex and intricately detailed versions of reality.

For me, much of this was in beautiful visuals, produced ad Infinitum in playful displays of bravura creation. It was mesmerising and more true – more complete and vivid – than anything I had ever lightly thought of as reality before. It was crushing because the individual ceases to exist in that order. You find yourself subsumed into this system and being stripped of your identity. It was horrifying and all-encompassing and so my solution – hours after the surgery and I was in recovery – was to resist unconsciousness. If I kept myself conscious, then there was a chance I could get through this. But it meant I couldn’t get the rest I needed, or so it seemed.

I know it sounds insane. I was not in a good way. I had basically accepted the reality I had grown up believing in was fake but couldn’t face the new reality given me.

There were audio as well as visual components to this. That’s where the paranoia hooped in. It felt as if my ears had developed acute hearing, and I could hear every thought and conversation – and all of it was about me.

Some of it was almost comical. It was like tuning into a Nigerian radio station and hearing every personal failure described in hilarious and gleeful detail. I could hear the fruity accents and laughter tormenting me, all of it a fabrication of my mind.

Besides that, I imagined the nurses talking about me. I listened in to their disparaging and insulting comments or imagined I did. I could do nothing about it, but it festered in me distrust that would later manifest in my dealings with them.

Closing my eyes, I would be presented with many different things, but among them were what appeared insulting testimonials commenting on my character. All of it appeared as if I was looking at a screen.

At other times I’d see these brilliant mandalas like images continually evolve on screen. It was so complex and detailed that I would wonder at it, but it had a hypnotic effect I would counter ultimately by opening my eyes again.

During this time, and since, I could feel what seemed like magic happening in the cheek where I was operated on – an agitated activity, an internal twitching, as if the muscle and nerves were knitting in real-time. I still feel this occasionally and think it authentic.

My cheek was packed with wadding infused with god knows what, with a piece of skin and an artery transplanted from my groin to become my upper palate. It was important that it fused and became compatible, and several times a day throughout my stay, the nurses and doctors would check on it. It felt as if it was adapting to the environment, joining and growing, encouraged by whatever was in the wadding was infused with. I could taste it in my mouth to the point I wanted to spit it out, so bitter and chemical was it.

There was something almost rhythmic to this, and when I closed my eyes, I would see what appeared to be a cloth, dark brownish-red and slightly moistened it appeared, subtly shift as if it was breathing.

By this time, I think, I’d poked my head up a few times and made some outrageous and panicked claims, though remember, I had no voice (which made things worse – I felt trapped, locked-in). People were worried about me. This was 2-3 days post-surgery, and I was in this crazy mental spiral. There was no escape from it. It felt like a form of torture. But at some point, I think I came to realise that – to accept – that it wasn’t true. It was just a horrible trip. I couldn’t stop it, though, and from that crazy place, I’d send out missives trying to alert the world and get some help. No chance of that.

I don’t know how I survived it. I despaired at the effort required to endure down in my hole. I knew, in my crazy, mixed-up way, that I had to keep going. But there were times I felt as if I couldn’t go on and felt like ripping out every tube.

I survived in the end. In my mind, I imagined all sorts of explanations for what was happening. Maybe it was just a bad reaction to the drugs. I imagined, in fact, that I had pushed the pain button too much, and I was sure I heard at one stage a nurse saying the painkiller hadn’t been diluted at it should have been – but then, that was just as likely another figment of my paranoia. Regardless, it gave me something to focus on. The medication would fade – I had to outlast it.

Eventually, I came out of this funk. Surgery was Wednesday. I reckon it wasn’t until Sunday that I saw some light. The days in between were some of the hardest in my life. I knew it would be hard, but I didn’t expect the psychological challenge to be greater than the physical.

The guy I shared a room with commented that he had some strange thoughts and dreams, though not to the degree I had. There are still occasions when something pops into my head and dreams that feel like that – but then, I still have the wadding in my cheek.