Up to me


I haven’t wanted to write about my surgery last week, not because it was bad, but because I was weary of the story.

Nothing went wrong, but it didn’t go entirely to plan. I was meant to have a plate removed from my cheek and the exposed bone in my mouth and nose covered by a skin graft. The plate had been removed when I woke, but the bone was still exposed.

It turns out that the bones in my face had been damaged by radiotherapy, making them fragmentary, which explains why the screw came loose. It’s why they didn’t continue with the skin graft. It also meant I got out of hospital a day early.

I was a bit deflated initially. I thought – unrealistically – that I’d come out of hospital with most of my ailments cured. Now I was faced with more of the same, plus bone damage and the genuine possibility that I’d require full-on bone reconstruction to repair it.

Ultimately, they had another plan for me. From Tuesday next week, I begin hyperbaric treatment. I’ll have 30 sessions of it, the idea being that it will accelerate natural healing, and the bone will repair and skin re-grow across the exposed bone. It will also have other health benefits.

I’ve been back to the hospital the last couple of days meeting with plastics and ENT specialists. Yesterday, I met with the surgeon who removed the tumour from me in August last year. I took the occasion to ask what I could expect a year from now and what everyday life should look like in five years.

No-one has a crystal ball, and there’s always the possibility of cancer returning (I have another PET scan in June) or another health issue arising. Let’s assume none of that happens. What he told me made it clear that I’ll never get back to what I was before, which I knew, but it was chastening to hear it spoken aloud. He made it clear that some things would never repair, and I’d have to live with that. I do things every day now, and I have for the last 10 months, which I’ll probably need to do forever – though hopefully with less frequency.

It was what I needed to hear. I can reasonably expect some more improvement, but not as much as I’d like. But what can you expect when you’ve had cancer? To survive is a bonus.

There’ll be more treatment, and I’ll continue to see doctors, but I felt as if it was a bit of a handover. They’ve done their best; now, it was up to me to take it further. Rather than feeling a victim of the condition and being dictated to by it, I now feel I can take control.

I’m a lot fitter and stronger than I was earlier in the year, but there’s a way to go. I can do something about that, and it will make a difference. I can be mindful of my health and do the exercise I must, and hopefully, I can improve my situation bit by bit. A lot of it, I think, comes down to mentality and attitude.

Up till now, I feel as if I’ve been tossed around by fate with little agency in the matter. Cancer dictates one thing, and the doctors weave their magic in defiance of it. In between, there is me, doing my best to keep my head above water and a positive mindset. Now I can take responsibility.

After surgery last week, much of the pain I felt has gone away, and there’s been a slight improvement in function. More will come, but there’s probably a hard limit. What I can’t push through, I’ll have to workaround. Ultimately, I’m determined to live life on my terms. That means travelling again and women once more and living the pleasant social life I had before. It means a lot more too, but we’ll come to that.

Be prepared


I don’t know why, but I’m often surprised at how methodical and organised I am. I’m known for it amongst my friends, and I expect it myself. It’s just that it seems contrary to the right brain attributes I have. I can’t complain. It seems a nice balance.

I’m reminded of this by my preparations for hospital tomorrow. I’ve packed my bag and laid out the clothes I’ll be wearing, just to save time at 6.30 tomorrow morning.

I’ve changed my bed, done all my washing and done the shopping necessary for my post-op diet – eggs, milk, yoghurt, and so on. I’ve run the dishwasher, tidied the house and loaded up the recycling bin ready for my neighbour to put it out on Thursday. I’ve charged up all my devices and downloaded extra books to my iPad. I’ve even done the vacuuming.

Basically, I’ve done all the things I need to do to if I want to return to the house and do nothing. That may be the case, and I’m ready for it.

The hospital called me late this afternoon to confirm the details for tomorrow. Surgery should take about an hour, so I should be back in my bed in good old 5 West by lunchtime. It’s not known at this point how long I’ll need to recover – check with the surgeon tomorrow.

Quiet night ahead, including all the necessary fasting. The next time you’ll hear from me is when it’s all done, and I should know then how successful the procedure has been. For now, one last thing: gotta book the Uber for tomorrow morning.

Counting down


It’s a couple of days until I go back into hospital. I’m there early on Wednesday (7am), in a couple more days after that, and then home in time for the weekend and recovery. I’ve been told by a few that I’m wildly optimistic if I expect to be well enough to return to work on Monday. They’re probably right, but I tend to be bullish on these things because I want to believe in good outcomes. Some have said I’ll be out of action for up to a month, but we’ll see.

It’s a peculiar period counting down to surgery. Mostly surgery is something to be dreaded, but I’m looking forward to this, just as I was the surgery last year to remove the tumour. It’s because it’s necessary, even essential, and so you put aside the fear you might have and what to get it done ASAP and get on the road to recovery soonest.

It’s a pragmatic attitude. I remember last year there was a part of me pretty scared at what was to come. I hoped it would be successful, but the surgeon had made it clear there was no guarantee. Then there was the thought of being under the knife for 14 hours. A lot can go wrong in that time. And it gets in your head at times, the gruesome and gory details of what they will be doing while you’re under.

Last year it was my face they pretty well operated on, and I would occasionally wonder what I would wake up to. Even if perfectly successful what scars would I be left with?

This time it’s my mouth, but that doesn’t make it a whole lot easier. The solution, then as now, is not to dwell on it too long. It has to happen, so be it.

I remember the days narrowing last time as surgery approached. Without it, I would die a painful death, and so for all my occasional qualms, I was reasonably relaxed as the date drew closer. I was very conscious of the uncertainty, however. This was a big moment in my life. I hoped for the best. I expected it. But still… I was very conscious of a before and after.

There was a natural trepidation. In three days, two, one…it would happen. There was no stopping it. No going back. The bell would ring, the time to step up would come. And I remember that morning waking, still dark outside and a chill in the air.

My lift arrived and it was all very low-key as if nothing momentous was about to happen. Neither of us spoke of it. The streets were quiet as we drove in and then I was there. I parted as if normal, giving Rigby a last pat as I left. I was told later that Rigby was in distress as I left him.

The key thing was I was about to get a cancerous tumour removed. That had become the predominant consideration. I hated having it in me. It scared me. I imagined it throbbing inside me as it grew, its insidious tentacles reaching further inside me as the days went on. Surgery could not come soon enough, if not too late…

I don’t have the same fears this time. Surgery will be much less complicated and nowhere near as long. It will be delicate and tricky. They’ll need to take some skin from me somewhere for the graft. I’ll probably wake up sore, and there will be some ongoing incapacity because of it for a while. But then, fingers crossed, it will be over too.

Two more sleeps. Another hospital stay. But – and let’s believe in the best outcome – after this I’ll be able to open my mouth wide; the swelling will subside and my speech restored to normal; the pain will go, and with that the infections I must deal with three times a day; and though I fear further scarring and nerve damage, I should look more normal after this. The misshapen cheek and nose – in truth, not terrible – will hopefully back to something like before. I will be symmetrical again.

We hope. Put aside the thoughts of surgery. This is why it must be done.

The week before


I’ve had my next surgery confirmed for next Wednesday. It won’t be much fun, but I’m looking forward to it. They’ll be removing the plate and other fixtures from my cheek and mouth and patching the exposed bone with skin grafts from I know not where. I should be out of hospital on Friday and on a liquid diet for the fortnight after.

I’m hoping this will be the end of the pain; that, after this, I’ll be able to open my mouth to it’s full extent; and that there’ll be no more nasal infections. I’m just about at the end of my tether at the moment – more impatient than anything else, but then I did wake up this morning half-closed because of swelling.

I’ve done about half an hour of work today and am now taking the rest of the day off. This is to make up – just a tiny bit – for all the extra hours I’ve been working. And because I’m worn out.

I’ve had problems sleeping lately. Every second night on average, I don’t get to sleep until the wee small hours. The other night it was after 4am. The main reason for this seems to be an overactive mind.

I turn the light off and my mind is full of thought. Some of it is current stuff, thinking about work and the things that need to be done, and so on. Some of it is random memories that return to me for no apparent reason. Some of it is the usual wonder about the state of my health and the journey that has led me here. And some deals in possible futures, most particularly, future conversations word by word.

Yesterday, I tried meditation for the first time since I was about 27. I’ll have another session today.

And tomorrow, I have the long-sought-after, long-planned, ritual steak for lunch.

This was to be recognition that I was well again, but I’ve jumped the gun because I was so impatient. I’ve invited the same crew who were intended for my last supper – a steak – booked the weekend before surgery to remove the tumour. That lunch was cancelled because of Covid, which was unfortunate and somehow poetic.

It won’t be the same tomorrow, but I look forward to it. I’ll have to cut my steak into itty-bitty pieces to fit it in my mouth, but it will be worth it. Good to see the guys again for what will surely be an afternoon of many laughs.

Unbowed


I visited the office on Friday for an all-team meeting. It was to be the first time meeting everyone since well before my cancer, and so I’d targeted it as something I had to attend.

I didn’t know what everyone knew of me, and figured there might be a bit of innuendo and mystery about my health status. I wanted to clear that up. I attended, not so much for myself, but so everyone could set eyes on me and see for themselves. I wanted to get it out of the way and move on.

I’ve been asked if I was nervous: not at all. It’s strange in a way as I have moments of self-consciousness now when strangers set eyes upon my imperfect visage. I’m much better looking than I was, and much better than I expected, but I still look a bit beaten up, and there’s a permanent blood stain at the corner of my nostril. One look at me and you know I’ve been through travails, and may be still. I dislike the attention.

I had no fear of that returning to work. I probably looked forward to it, and not only because I could tick the moment off. I wanted them to see me and know that no matter how tough it had been, I remained strong.

That’s more or less how it worked out.

I was early and went for a coffee. At the cafe, I ran into some women from the office who gushed over me. They asked questions and proclaimed how well I looked, as if surprised. One was kind enough to be shocked when she heard my age – she thought I was at least ten years younger, or so she claimed, and that’s with the beard I have now and the misshapen bits. Now, that’s more like it.

I was bright and even a little provocative. A tad raffish, and even a little flirtatious. I enjoyed the attention.

Upstairs, once we all collected, I had people greet me or pat me on the back as they passed by. I didn’t seek attention, nor to make anything of what had happened to me. I was there in the same capacity as everyone else, and when I came to talk to some made sure it was as much about them as it was me.

For a while, I’ve wondered where I’ll end up at the end of all this. Lately, I feel as if I’ve got a better idea of that.

For want of a better word, I’ve felt more vibrant. Serious illness tends to make you more insular. If you’re like me, you gather all your strength and will to resist it, physically and mentally. It takes discipline, but in the act of it you withdraw further into yourself and become – unsurprisingly – self-absorbed.

I don’t know why it’s changed, but I feel myself looking outward more often lately. I have no doubt about my strength or capability. In ways, this experience has given me insight into the stuff I’m made of. At the same time, I feel as if it’s cleared out some of bad habits and ways of thinking that were holding me back before.

Looking back over the last 8-9 years, I feel as if I experienced a series of traumas that inhibited me. I hate to admit to that, but the evidence is pretty clear in my inability to properly settle or believe in good things. It affected my personality as well, something that seems clear now that I’m feeling differently.

There’s no doubt I was scarred, and for good reason. But there’s no bigger scar than when you survive stage four cancer, and it appears to have over-written the previous scars in my mind. And surviving – well, it’s the best sort of scar, no matter the fear that led up to it. I’m a survivor.

I felt that on Friday. I stood there feeling dignified and strong. I felt people checking me out and I wanted them to know that – but it felt true.

I still don’t know what course I’ll take once I’m free of this, but feel sure I’ll be direct and uninhibited in my manner. I’ve always been direct, but in recent years it’s been tinged with anger. That’s gone, I think. I’ll be true to myself, without any second-guessing. It’s just a moment in time, but I feel elevated in ways – just as smart and strong as I ever was, but with a calmness now that was missing before (people have always commented on how unflappable I seem, but in recent years I often seethed beneath the surface). With that comes an openness, and even warmth, absent since my mother died.

All this is talk and there’s a long way to go, and there will be setbacks. But, at least, I can see now how things can be.

Just quietly, when the cancer is behind me, I have a feeling I might do great things.

Midnight ramblings


I don’t know if you know this, but one of the prime aims of this blog is to record the happenings in my life, and the associated thoughts and reactions. That means putting down the good, the bad and the ugly. I want leave something behind. I want people to know that I lived and I had a mind.

During the week I posted a couple of pieces to Facebook. One was written at about 1.30am when I couldn’t sleep, and has typical aspects of that. It remains true, nonetheless:

I can’t sleep for thinking, which is most nights now. I try to figure things out, as I always have, though it feels more personal now. I dwell on the things I can’t do. I can walk, though not far. I take stairs one at a time, and not two as I did so blithely before. No social life really, because there’s little pleasure in it – too tired, too sore, can’t eat, can’t drink. At least I can hear now. I watch others and hear their stories of things I was once part of. I miss women, flirting. Being tender. With a damaged mouth and lips that are numb I wonder if I can still kiss as before. I feel separate from life around me and stuck on pause. There is force in me still, but no might or power.

All I have left is my mind, or so it feels. It ranges far, never stopping. It was always active, but there is a difference now. There was a lazy intent before. A smug indifference. There was always time and I was always capable. Now it becomes concentrated and forced back upon itself and the words, as you see, must tumble out. Thought is my only real activity, and my mind the only part of me unconfined by the physical limitations imposed upon me. It’s just as nimble as it ever was, but now it searches for justification. If this is what I have, then it must mean something – or so I conjecture.

Endure, I’ve told myself along the way. Be strong. Though they seem the same, they are different. Endure is simple. Take the pain and keep going. Keeping turning up. Overcome. I’ve practice at that and it’s easier than it sounds. As for being strong – what I mean really is, be defiant.

There are times it gets to me – the pain, the fatigue, the uncertainty, the sheer unending-ness of it all. How it makes me feel small now and how I have to force things – even speech – just to seem normal. But then something triggers in me. I get angry. I’m not about to let some grubby little shit like cancer get the better of me. And I won’t be small. Sure, it’s hard, but who said it would be easy? I shake my head. Get over yourself. Suck it up. And so, I become defiant.

These are necessary attributes and I’m lucky they come easy to me. My dad always said I had a chip on my shoulder, and it’s damned useful sometimes.

I can handle that, but there’s another battle. My ego makes demons and it’s my ego that knocks them down. The battle is in my head. The battle of my body is fought by surgeons and medical science and maybe a little bit of fortitude. But it’s the mind battles that animate me, drawing me back and urging me forward.

I remember once figuring that the choice in life was to act, or be be acted upon. It was easier to do as the invisible forces direct, move as convention dictated, but that wasn’t for me, I thought. I wanted my thoughts to be my own and damn whatever anyone told me. I wanted to step my own way, be my own man and have, as they say, agency in my life. Easier said than done, but safe to say I’ve been a stubborn pain in the arse most of my life. I have acted.

That is more difficult now and perhaps that’s why thoughts of it become more vivid to me now. The battle is in my mind, but often I feel myself wanting to take a more active part. There are times I imagine my hand on the throat of cancer squeezing the life out of it, never mind the do-gooders whispering in my ear that “violence is not the answer”. To hell with that – and I imagine giving the corpse of cancer a good kick for good measure. To act when no action is possible is forlorn desire.

All that is fantasy. And really, I’ve got the cancer beat – it’s the side effects I have to contend with now. There’s another surgery to come, and I knew that – but it’s more than I thought; not as easy as I had presumed. There may be more. The doctor this morning used the word ‘saga’. The thought wearies me, but I feel no extra fear. The road’s just a little longer than I hoped. And there’s no point in worrying about what I can’t control. I’ll leave that for the doctors.

I know that when it’s over I’ll have lost something I can’t recover. Physically, I won’t be as strong as before, or able, or even as virile perhaps. The macho, strident part of my ego (and yes, it exists and makes a lot of noise) struggles with that as if an existential threat – which it may well be to that part of my ego. But the smarter me knows I have to adjust to it – and I can probably learn to kiss again, and won’t it be fun?

There are still stories to be told. Adventures to be had. Victories to be won. I might lose a little, but I might gain something too. The wheel keeps on turning.

There’s a comment I made that should also be recorded as it contains details of my latest diagnosis, previously alluded to (and which I don’t want to speak of otherwise):

I wonder sometimes if I say too much, if people think, there he goes again, blathering away and feeling sorry for himself. It’s just that it’s never settled. This thing in me is always on the move and my thoughts follow it.
Imagine a hose with water gushing through it and it writhing like a snake from the force of it spraying water everywhere and that’s how I feel. Until the water stops the thoughts will come.
So, the latest is that what I thought would be the last surgery might be the first of a series. They fear that my bone has become unhealthy but won’t know for certain until they go in. If so, I’ll need more reconstructive surgery. Experience tells me that’s not much fun as they must take bone from one part of the body – my hip last time – to place it in another. They also speak of hyperbaric chambers.
I doubt that it’s as bad as all that. I have high hopes that this surgery will do it but then, I’m an optimist. If it were another part of my body it would be easier, but these are the cards I’m dealt.
Whatever happens, I have no choice but to deal with it. I’ll come out of it. For now, let’s hope there’s nothing to it, which must be at least a 50/50 shot
.

A couple of days later I posted something else as I felt as if some had misconstrued me. I’d had people contacting me directly to check if I was okay. Well, I’m not perfect, but in terms of mentality, I’m impatient but determined. I’m better than I was a few months ago. This is what I wrote:

I just want to reassure everyone that, notwithstanding the situation, I’m pretty good. Don’t read too much into my ramblings. I remain capable and resolute.

What you’re seeing now has been true of me my whole life. I’m one of those thought-addled people who overthink everything. I’m the type who needs to unpick and understand all I experience, never more so than now (and there’s a lot of it). For once, the curtain has been swept aside and you’re seeing it. Surprise!🙀

A lot of people have bad things happen to them. Mine is on the lesser end of the scale, different only because it’s personal. Forgive my wordiness.

In truth, I take it as a personal challenge. It will end and the reward will be good health and, perhaps, a kind of wisdom. (So much of what I’m experiencing is objectively fascinating and worthy of analysis, but I’ll spare you 😏).

Hang in there. 😎

Hospital days


Having a quiet day today. Did a couple of hours of work this morning because I had meetings booked, but did them hurting. Today isn’t a good day but I’ve dosed myself up with some endone and paracetamol and spent the last couple of hours sitting on the couch.

I was back at the hospital last Wednesday for a procedure to fix the hearing in my right ear, as I described yesterday. I’d been there the Thursday before for a check-up when they’d come up with a solution to my hearing problem. The plastics specialists had also looked at my mouth and figured they needed to do something about that as well. They had concerns that it was cancer causing the issues in my mouth. I thought that unlikely, as has been proven since.

I was glad to be back in hospital getting looked at. When you’re in my situation every little bit counts if it means you’re closer to being healthy again.

I was in the hospital at 10am. I turned up to the same place I did all those months ago when I had the big surgery on August 12. Same place, much different vibe.

Going back I had all those memories return to me. This time I was there for a relatively simple day procedure. I has no nerves. I just wanted it done.

I wanted it done the time before too. I remember fearing every day delayed was an extra day for the cancer to take hold. I wasn’t looking forward to it. I was probably nervous, though I don’t remember it. Fourteen hours of surgery was a spooky concept. What if something went wrong? And I knew that being under for 14 hours was tricky. I was going to get cut, never a pleasant prospect. I didn’t know how id look coming out of it. Hell, I didn’t even know if the surgery would be a success. But, it had to be done and, no matter what I felt, that was the bottom line.

I remember getting there early in the morning. It was 7am and still dark outside. The fluorescent lights were bright and there was the air of controlled urgency in the ward. I was given a gown and asked to change into it. My clothes were put into a locker and then I was taken aside by a couple of plastic surgeons to discuss options. It was all very efficient. Within 20 minutes I was lying in a trolley bed. Ten minutes after that I was in an operating theatre with doctors and nurses bustling around me. Five minutes later I was out to the world. And about 15 hours later I came to in a very strange place.

There was none of that urgency last Wednesday. I was there at 10am and, as before, quickly changed into hospital smock and gown – but it was near three before I was wheeled into the theatre.

I sat and waited. I didn’t feel impatient. I didn’t even have my phone and there was nothing to entertain me but my thoughts, and a television over my head showing prosaic daytime TV.

It was busy. Most of the othe4 patients were middle-aged men. They seemed more vulnerable all in hospital gowns. There were no signs of status or background. One man, his silver hair close-cropped, had the palest of blue eyes, opened wide, as if from fear. When his name was called one of the other patients told him: “have fun!”. He responded as he went by, “Do my best.”

It was the sort of locker-room antics men resort to in times like that, but I didn’t approve altogether. It felt dishonest somehow, and insensitive.

I sat there as the man who made the comment regaled another another man with his story, and particularly the story of his brother, a drummer in a rock band. It was the sort of conversation best experienced vicariously, but I recognised the need of the man to let things out. It was his fourth visit in a month.

I was, as always, observant of the things around me, and questioning when the opportunity arose. This was a step on the journey towards being my healthy self again.

I remember the small, curious things after that. I remember an oxygen mask being clasped tight to my face and being told to breathe deeply. I breathed in perhaps three times, then everything went out, as quick and clean as that – as if someone had flicked a switch.

And I remember sometime later opening my eyes and I’m in a different room and beside me is a woman talking, as if she’s flicked the switch to turn me on again. The procedure has been a success. Time has passed. Somewhere along the line they also did a CT scan. And I’m lying there groggily while the woman, and then the surgeon (the same guy who did my surgery in August) talk to me.

He reassures me. We won’t know the results until the biopsy is checked, but he didn’t see anything that suggested cancer. That was good enough for me. There was inflammation and signs of infection – they’d cleared out some pus from my sinus – but that was it. There was bone exposed in my mouth and nose and someone would talk to me about.

I was taken to a recovery room. I had a sandwich and a cup of tea. I was given some medication and ear drops to take home with me and told howto use them. I dressed and then was taken downstairs for my lift home.

They told me I couldn’t spend the night alone, just in case, and so I went to the Cheeses. I had dinner there and a long conversation and watched some of the Shane Warne memorial with Cheeseboy. It took a while for me to sleep in the unfamiliar surroundings, but next day I felt more vibrant than had for a long time.

Overnight, my ear had crackled and popped and by morning some hearing had returned. Days later, I’d guess I have about 70% of my hearing returned in that ear, though I don’t have the clarity of hearing I did before. Not yet anyway.

In about a month I return for what should be my last surgery, give or take some dental stuff. I’ll be in hospital for a few days and will leave with the plate and all the foreign bits and pieces removed from my mouth and cheek. It should lead to much less pain, and less infection too, as the surgeon seemed to think that is the cause of the other problems.

Time will tell.

One more op


This is from Facebook. I’ll update with more detail when I’m inclined:

I was back in hospital on Wednesday for a minor procedure and back home by that evening.

There were a few things done. The main reason I was there was to repair the hearing in my right ear. Since chemo and radiotherapy, I’ve been profoundly deaf in my right ear, which has been quite a challenge. I’ve had to switch on the subtitles on TV to watch, and any conversations with background noise or with more than just another person involved have been lost to me – very off-putting for someone as opinionated as me.

I hoped that some hearing would return as I recovered, but wasn’t certain of it. It turns out though that there wasn’t anything wrong with my ear – rather, the canal leading from my ear to my brain was full of fluid that wouldn’t drain. The solution, familiar perhaps to anyone with young children, was to insert a grommet into my eardrum so that the canal could drain and my hearing return. The good news is that it’s worked. I reckon I’ve had about 60-70% of my hearing return, and hoping to get to 100%.

I’ve also had problems with my mouth, highlighted by the screw that fell from it a few weeks ago and the shifting plate in my cheek, causing a lot of pain. There was a concern that a lurking cancer, invisible to the scans, might have led to this problem.

While I was under, they took a biopsy to check for that and examined my mouth to plan for a fix to it.

The good news is that the biopsy was clear, which just about guarantees there’s no cancer remaining. They discovered that bone was exposed in my mouth and nose. It feels like I have sandpaper in the roof of my mouth, which is quite unpleasant and problematic when I eat.

This afternoon they called to advise of the surgical plan going forward. In early May probably I’ll be admitted to hospital so that they can remove the plate altogether and patch up the exposed bone.

It won’t be great fun, but I’m glad to have an outcome. This was my preferred solution. I was uncomfortable having a foreign body in my face, particularly when it has come loose as in this instance. Apparently, the bones have healed sufficiently that a plate is no longer required.

I’ll also need a skin graft, which means another operation. I’m not so keen about that, but it has to be done. I’ll be in hospital for 2-3 days, and back on soft foods for another few weeks after that. But then, I should be right.

No more pain, no more swelling, my speech should return to normal, I’ll be able to open my mouth further and eat whatever I want, and my face should begin resembling what it was before, handsome devil that I was.

There’s a bit of work to be done, but I’m very happy now that I can see a solution – and end – in sight.

One thing I’ll add now is that I’m not quite as sanguine as I show myself to be here. I try to remain positive for my Facebook audience.

Overall, I’m very happy that we have a plan, though it’s unfortunate it has come to this. I’m glad they’ve decided to remove the plate. I’m a little wary of what the surgery will mean for me.

I’m hoping that they can complete the surgery within my mouth, without needing to open up my cheek again. I expect that will be the case, but can’t be certain. It won’t be comfortable, but it’s better than risking more nerve damage, and the potential of more scarring and degradation of my not so good looks.

I’m not thrilled about needing to donate another patch of skin. I’m still limping from the last op on my hip, though on that occasion they took bone as well. It should be much simpler this time.

No complaints. As I wrote that I’m happy a resolution is at hand. Hopefully.

How I feel these days


It’s about time I gave an update on my health, as things are changing.

Yesterday I experienced only minor pain – more an awareness. The congestion I’ve had for months on end is also much better than it has been and feels as if it might clear up at some time in the indeterminate future – which is the first time I’ve thought that for a long time. My mouth was better too – still some swelling, but at the low end until later in the day.

All that sounds good, except I felt shithouse for most of the day.

Perhaps I need to define what I mean by pain. For me, pain is a sharp, irregular experience. I’ve experienced it across these many months in the form of headaches and head pain, in sore and aching parts – eye socket, eye, ear, etc, and the sharp pain induced by what’s happening in my mouth. Much of that I can only guess at, though I can conjecture that a shifting plate causes much of it (I think a corner of it has caused a small bump under my eye), the incessant scar tissue, and the unhealed flesh – as well as the pain when I try and open my mouth too far, and the sharp pain occasionally within the swelling (I’m sure it’s caused by an aggravation by either the formwork inserted in my mouth or scar tissue or both).

When I say I felt shithouse yesterday, it was more of a feeling as if I had a bad cold, making my body sore and weary, and my head distant. I felt pretty zonked out, something I’d have attributed to medication previously – but I’ve not taken anything more than paracetamol since Saturday. It may be there are still some of the serious painkillers in my system, in which case I’ll know within a few days as they leach out of me.

Today is similar. I feel a bit out of it still. New for me is a mild case of nausea. My ears ring, but that’s not unusual. My face feels lopsided and swollen, but that’s not unusual either. I’m weary, ditto. There’s no real pain and the swelling in my mouth is as minor as it gets – generally, it will get worse as the day goes on. I expect today will be very similar to yesterday.

I see the surgeons on Thursday. I’m hoping that’s the moment of truth and they will have the answers to fix me up properly, once and for all. Hard as it is sometimes, I don’t think I’m far away from being right. If we can just get these few things right…

Later than you think


My nephew visited yesterday. He’s been a bit of a troubled soul. He’s a lovely, kind-hearted, gentle kid, but also lost and aimless. He’s only 21, so it’s not entirely new, except he’s been like this since his early teens. It hasn’t helped that his mother is frequently hostile to him, which is one reason he’s become close to me.

He’s about 6’5” and a good looking kid, though he doesn’t know it. He lacks confidence and one can only hope that it grows in him as he goes out into the world. He came with good news yesterday: today he starts an apprenticeship as a carpenter. He was excited at the prospect and he’ll be good at it. He’s one of those people naturally good with their hands.

I found myself thinking back to when I was about his age. I couldn’t think of any particular moment or detail. I was working at a central branch of a bank then, a big place with lots of departments. I worked in ‘international operations’. I had some good times – a bank is a social place to be.

I’d been lost though in the years before. I certainly wasn’t as knowing as I would become, but I doubt I was an innocent. Lost as I might have been, I think I had a harder edge than he has – but then, they were different times.

I recall taking on a labouring job working on one of the inlets to the Westgate bridge being built. It was very hard work and I only lasted about a week. I was about 19 then. I remember how tired I was at the end of each day and how I felt as if my hands had lost all strength.

I recall also knocking off one day and catching a tram on the outskirts of the city to get to the station at Princes Bridge (as there was then). I was so weary and dusty from the work. I got on the tram and found I had no money for the ticket. I was tall, though not as tall as my nephew, and good looking also (my nephew looks like me), and the female conductor looked at me sympathetically and let me travel without a ticket.

In the hours after my nephew left, I found myself comparing my memories of that time, and my nephew, to how things are today.

I felt a kind of envy for my nephew. He’s at the start of things and I tried to tell him that. And he’s young fit and strong as I was once, and even if it’s been a while since I’ve been young, it was not so long ago that I was as strong as an ox and could go all day. By contrast, he’d arrived when I was in the middle of a nap I couldn’t do without.

I find this very hard – this lack of capacity. So much of my sense of self, it seems, was wrapped up in this notion of myself as a robust and capable physical entity, as well as the rest of it. I still have my mind, but I am – for the moment anyway – much feebler than I’ve ever been. It might seem silly, but I felt very masculine, and was perhaps seen as such, but just a shadow of that remains today.

Oh, I’m stronger now than I was, though still well short of the might I possessed. I don’t have the stamina I did before. So many simple things are still beyond me, not to mention my vanity, which has taken a permanent hit.

It’s important to me that I regain as much as I can, if not more. I think it’s possible, though it feels further off than I’d like. I feels bit like a special case, like an invalid allowances must be made for. I hate it. I’m so obviously damaged goods that I can’t avoid it, but I have to overcome it. I need to prove it, to myself, to others, that I can be stronger than ever. It’s important, not just for my ego, but also for my stage of life.

I feel much more mortal than ever before. I think that’s understandable. For much of your life the thought that you will die one day is very much an abstract. Anyway, it’s miles off. Then, it isn’t.

I live with the thought of death now as I never did before. I remember in hospital and looking at my fellow patients. Mostly, none had surgery as full-on as I had, but I was younger and fitter and had an attitude. I was restless and driven wanting to get better and out of hospital. I felt I didn’t belong there.

But there were others I wondered if they’d ever leave. I saw some very sick and miserable people. Even if they got out of hospital, I thought, they weren’t much longer for this world.

It was an awful thing to think. If I could have looked away, I would have. It was depressing to be faced with this knowing that this was the fate of millions – including, perhaps, myself one day.

I don’t want that. I want to go out on my feet. No guarantees, but I have a lot better chance if I get myself right now and in the years to come. I can’t go back. My youth is gone, if only if known better. But I can be strong again, and hard as a nut. That’s my aim. I can’t live as half a man.