Papa the paradox


It’s a pretty dull life I have at the moment. The only time I’ve ventured out the front door since leaving the hospital is to return to it. I don’t have the energy to do anything more than the basics, so what I’m left with is a routine of reading and watching TV, listening to music or audiobooks, browsing the net, or writing here. There’s sleep, of course, and I look forward to the odd soak in a hot bath to bring solace to an aching body (I’d love a massage).

I’m very careful to manage my day, not doing too much of any one of those activities, lest I spoil it. I retain the ethic drummed into me when I was a kid by my parents about watching TV during the day – don’t, otherwise you’re a slob – but needs must in the circumstances.

When I returned home from the hospital, one of the things I did was to sit myself on the couch and watch a documentary series on Hemingway I’d recorded while I was gone.

I’m one of many millions who was inspired and influenced by Hemingway since I first picked up one of his books as a teenager. I was transfixed by the sharp, direct prose, which yet felt poetic. The stories – which I was drawn to first – also spoke to me in a way I understood inside, within my self, in a way I couldn’t explain to anyone else. They felt true.

I read his novels, more than once mainly, and some biographies of him, and he’s remained a strong influencer, though it’s a long time since I decided that I didn’t like the man.

After watching the documentary on him, it’s hard to reconcile the paradox of the man. By many accounts, he was a boorish, bullying, blowhard capable of cruelty and indifference. Yet, he could be great company also and, when engaged, a man capable of generosity and kindness.

If I had a time machine, I’d love to go back and meet him, but I don’t think I’d want to spend much time in his company. He’s just the sort of man I like least.

But then there’s his writing. Everything missing in his human persona is there in his writing. You wonder how a man so caught up in his own myth could then write so truly and with such insight about the human condition? In his writing, there is so often the wisdom that comes from a deep knowledge of how people act and react, their flaws and strengths, their fears and desires. There’s a stark simplicity in his writing that yet reveals so much. Particularly early, there’s a great sensitivity.

That’s the Hemingway I’d love to know.

So, how do you reconcile this? Was it that he was only capable of this sensitivity when he wrote – that it was somehow an unconscious talent the act of writing revealed? Or was it that he only showed himself in his writing?

Hemingway was clearly a very complex individual, and there seems little doubt that he was beset by mental health issues from a relatively early age. They worsened over time, were indulged and pampered, and exaggerated further by his heavy drinking. In the end, he was almost a caricature.

He was haunted by his father’s death and came to hate his mother. I feel sure that he was terrified of following in his father’s footsteps with deteriorating mental health and suicide. I suspect he tried to overcome those fears with the boasting and tall stories he told of himself in later years as if to distance himself from any of that. I’m certain it also fuelled his creative self and his writing.

I’m no psychologist, but it appears that Hemingway was deeply insecure at heart and reacted to (rejected) that with his overtly masculine behaviour. Whether he ever admitted it to himself, the truth was different, and I suspect he sensed it. That’s where his writing came in. His writing was a way to tap into that sensitive inside and express it. It was something he needed to do.

Because he himself felt so much, he understood much. Most of this was rejected in his public life, though he was said to be a good father. But it was fertile ground for his story-telling. This is where his insight came from – a keen observation of the world and people around him, filtered through this deep and painful knowledge.

When his writing failed him, he killed himself. I understand the impulse, though it was ugly how he left his wife to find him (he was far from thinking clearly). He was a gruff, oversized presence, and he could sustain that for as long as he could write. It was the one true thing for him. When that left him, there was nothing left for him. His meaning collapsed.

I’m no psychologist, and I’m probably way off, but that’s how I see it, from my observation of life and myself. It seems such a great pity that he could never integrate the writer in him with the man the world knew – though I’m sure, from the love he enjoyed, there were great periods when it shone through privately.

Ups and downs


I don’t know what to make of it. I’m in more pain now than when I left the hospital. To some degree, I understand when it comes to my leg. As I explained in the post yesterday, the extent of the numbness on my right side has reduced, and with that has returned both feeling and pain. There’s still a lot numb and stiff there, but naturally, that will clear eventually, as it must, and I want it to. It’s a sign of healing.

Is it possible that’s what’s happening with my head also? That’s harder to assess. The leg and hip are active joints that are constantly tested by movement. The face isn’t. The doctors tell me the swelling and the numbness will go on for months, though ultimately, the swelling will fade, and the area of numbness will shrink.

I’m talking much better than I was, though far from normal. It may be that I’ve adjusted to the circumstances, or I’m experiencing slightly more freedom of movement. I think a bit of both. There’s still a big lump in the middle of my cheek, and the skin is numb to touch, right to my earlobe. The thing is, though it’s numb, I can feel the right side of my face in a way that I don’t anywhere else. There’s a tightness from the swelling and the occasional sense of pressure within. More recently, I’ve begun to feel an occasional radiating pain centred on my eye socket.

I seem to think there has always been some of that, only it’s more frequent now. That lends credence to the theory of numbness fading, though I also wonder if it might be the case that some slow-release anaesthetic has lost its effect. The lump in my cheek is wadding that will dissolve over a period, infused, I think, with proteins to knit the grafts together and perhaps some anaesthetic. That’s only conjecture.

Sometimes I wonder if it might be the remnants of cancer emerging.

I take painkillers in the morning and at night now, though I’m experiencing some reflux which means I can taste them long after ingesting them.

Yesterday was the worst day since leaving the hospital. I felt fragile and tired, though there was no chance of sleep. Several times I staggered with the dizziness I had thought I had got by. I was blinded by it a couple of times, though I managed to stay upright.

I record all this as a record and as a means to analyse and understand. It’s how my mind works – I want to know. I understand how tedious it might be to the casual reader. It would be so much easier if I knew how I was supposed to feel at this time if any such thing exists. Am I on track? Is this unusual?

One of the doctors last week said I’d done very well. I tend to take statements like that from doctors with a grain of salt, but I was willing to believe it at the time. But, as he emphasised, I’d undergone quite significant surgery, and recovery would be long and hard. This is the thing that perhaps I need to accept in my body.

I keep on thinking that one day I’ll wake and feel so much better. I expect a steady, linear improvement in my physical strength and capability. My logical mind has modelled a recovery much like building a wall – one brick after another, building upon previous work.

That may ultimately be the case, one way or another, but obviously, the body is a complex machine, and it isn’t as clear-cut or linear as that. There will be good days and bad days. There will be pain, and managing pain is an important part of the equation. Perhaps I shouldn’t worry and let it be. Be less impatient.

Mayhap. I can live with that, but I don’t want to be going into radiotherapy feeling as I do now. I need to be stronger.

Medical update


I’m back taking painkillers again, though it’s not anything to be concerned about.

The operation on my hip and groin left much of the area numb and immobile, from my waist to my knee on the right side. That has gradually reduced in extent, which enabled greater mobility. It’s now reduced further, and some feeling has returned, including pain. The scars have healed, and no dressings are required now, but I feel a general ache with occasional sharp pain, gone before I know it.

The mountain of food I’ve been eating is finally having an impact also, to the point where I wonder if I’ve regained some weight.

For some reason, most of the weight I lost was from my legs and (now) boney arse – perhaps because I wasn’t using them? I also lost the love handles, but now I’ve developed a modest belly.

It feels as if all the food I’ve consumed has quietly worked at knitting my damaged body back together again. It’s taken a little while, but I’m stronger now, and it feels as if the systems that govern my health and wellbeing have stabilised. Long way to go yet, but the signs are good.

I still feel as if my head is thick – swollen, congested, misshapen, and generally out of whack. My vision is slightly impaired out of this, particularly when reading. All of this made me feel somewhat out of it post-surgery, and though I’m much more with it now, there are limitations.

I find it a lot easier to receive information than process it. It’s not that I’m incapable of it – I can string ideas and thoughts together, as you see here. It’s more a matter of energy. Most of the small reserves of energy go towards managing the daily tasks needed to get by. If someone asked me to do some work, I reckon I’d be exhausted within 10 minutes. I used to write, but I have no inspiration now. It affects my reading even, which I now do in short bursts (I’m listening to many audiobooks, which is easier).

I hasten to add, it’s made no difference to my interest in things or passion – just in my ability to follow up on them.

All this will pass, though I don’t know when. The swelling looks likely to be an issue for months to come, and with that, my vision will likely remain impaired. I can’t expect any great clarity to return while I’m undergoing treatment. For now, my focus is the physical and becoming more capable whilst replenishing my strength in anticipation of the gruelling treatment to come.

Get through that, and there’s an open road before me.

Necessary aberrations


I had no intention of turning this into my cancer diary. A few months ago, the idea would’ve been unthinkable. A few months later, though and cancer dominates my life.

I remember the day after I had my episode – two weeks ago today. After a night of drama I lay in my bed with my arms outside the covers parallel to my body and stared at the ceiling.

I lay like that for hours, not sleeping, so denuded of vitality that I couldn’t do more than blankly stare, taking in th3 dim sounds of activity around me.

I had no energy, nor any interest, in doing anything more than that. What little strength I had was needed in making good all that I had lost in the night previous.

I was conscious of this and despairing in a way that a man so inquisitive and mentally active could be reduced to something only a little more than vegetative. It was that which roused me to try something finally. It was later in the afternoon by then. I had lain still for maybe 6 hours. I reached for my phone and headphones and searched for music I could passively listen to. A little later, I began to send a message or two.

One thing I learnt in hospital is that activity begets more energy. Once you start – once the rust is shed – you find the energy to do more. Often, it’s the first step that is the hardest. It was like that on that day, and I found once I started, I began to loosen up. Within an hour, I was out of bed and sitting by the window, just to prove it.

I’d never felt like that before. That it was only two weeks ago feels surreal considering I’m now home and sitting on my couch.

I look at this time as being outside of life. Everything is abnormal, but hopefully, it will pass. It’s something I must endure while regular life is suspended. It’s a necessary aberration, and I hope cometh the new year that I can look back at a block of 4-5 months and think, thank God it’s over.

The door out


When I got word that I had cancer it was naturally surprising, if not shocking. Part of the surprise was that in all other respects but one, I felt well. I was active and fit and strong. Up until the last couple of weeks before hospital, I had pain, but felt capable. I felt whole, but flawed, though more apt is perhaps I had a poison in me that had to be removed.

Since surgery, I feel damaged. I’m a long way from feeling active or fit or strong, though hopefully with time I will again. In most respects, I feel incapable. I don’t feel whole, and don’t know if I ever will again.

If everything goes to plan I’ll be completely free of cancer within a couple of months. Recovery will take a bit longer, but when complete I’ll be free of the hobble that constrains me now. My head will be clear and I’ll have my breath back. The plastic surgery means that you’ll have to look hard to know I had surgery on my face, though it seems inevitable that I’ll always be numb in places (the right side of my face, still swollen, looks dead currently). The only question is my right eye, but even that looks like to repair, and is manageable if it doesn’t.

If all goes to plan, I can hope to be maybe being 85% of what I was before.

That’s 5-6 months away probably, maybe sooner. For now, I look upon people walking and talking normally with some wonder. How did I so take it for granted?

This is the other side of it. I never really thought about it before, but now I feel mortal. That was brought home hard when I was in hospital. Being around so many badly sick people reminds you how frail the link to life is. Then I had my episode and came away from it thinking that I know how you die now – a series of flashes, then nothing.

I have changed from someone quite carefree about simple existence – I would speculate that I might actually be immortal! – to knowing that I’m on the edge now, and that one day, be it 12 months or 30 years, it will happen.

It’s a dark sort of knowledge that shifts your perspective on many things. It’s a cliche, but it woke me up a bit – and I was always someone more alert to life than most. You realise how much you take for granted, right down to walking and talking. You realise there’s no point in seeing out time if that time can end at any moment. And, in my case, you begin to draw a line between what is acceptable and what isn’t.

The reality is that while I might be completely cured, I might also relapse into cancer, even after treatment. The chances of that are only a little under 50/50. If I can survive the next five years then I should be right. For now, it’s not something worth worrying about. Get through this and if it happens, deal with it then.

Nothing about this is easy. I try to remain steadfast and mostly succeed. I have a grounding in stoicism and it makes me strong.

I had a bad night though and feel shithouse today. I’m getting stronger, but I feel off, and where they operated on my groin is troubling me. I got a bit teary for about 30 seconds feeling over it, and knowing what’s to come. Then it passes. There’s only one door out of here and I have to pass through it if I want to survive. As I said to someone the other day, I suit up again on the 15th and go into battle.

I’ve learnt a lot from this. Maybe that will make a difference in the years ahead. In the meantime, it’s bloody hard.

What happens next


I had an appointment with the oncologist yesterday to get an update and discuss the treatment to come.

As I think I’ve explained previously, once the surgeons opened me up they found the cancer was more extensive than anticipated, though it hadn’t reached my lymph glands. It pressed hard upon vital organs and though they removed all that was visible, it was deemed certain that remnants remained.

The oncologist explained that I would need six and a half weeks of radiotherapy tt counter this, plus one day a week of chemo. Radiotherapy by itself woukd reduce the chance of recurrence to one in tow; the chemo gave an extra 10% of protection – so, 60%.

I hoped for a bigger number than that, and I hoped to avoid chemo also, but you can’t argue science (despite the many who try).

She explained to me how it would go, including the side-effects. The first three weeks would be relatively okay. The remaining three weeks would be tough. By then I’ll have developed extensive mouth ulcers, which I’ll need painkillers (morphine) to manage, and preventing me from eating anything solid. I’ll look surnburnt. I might feel fatigue. I would lose my sense of taste, for up to two months after. And so on. If there is one plus, it seems unlikely I’ll lose any hair from chemo.

It doesn’t sound much much, but as it has to be there’s no point worrying about it. At least now, I have an end date in sight. Come the start of November I’ll be done. Just recovery.

I stuck around to have a mask moulded to my face for the radiotherapy. I wouldn’t do it for a laugh, but survived it.

I was back at the hospital today for a check-up by the ENT and plastics surgeons. By and large they express satisfaction at my progress. There are a couple of things though.

I can’t read without closing my right eye. The page swims otherwise. I’m hoping that it’s because of the swelling and it will improve when it subsides (which is months away – the radiotherapy will make it worse). The surgeon thinks it might, but we have to wait and see.

Otherwise, when I drink a part of it is coming out of my right nostril. The plastics surgeon says it may close over in time as healing continues. Otherwise, a small procedure may be required down the track. It’s a disconcerting experience.

In general, I am feeling stronger than when I last wrote. In the last couple of days my stamina and mobility has improved, and I’m getting many fewer dizzy spells. It still feels bloody uncomfortable, and I’m not willing to venture out of the house yet – but expect that in a weeks time I’ll feel more able.

Reduced


On the Sunday before I went into hospital, Cheeseboy visited. It was our last catch-up before surgery, and though neither of us said anything, there was something symbolic in it. It was moral support and mateship and a last farewell, not knowing how things would turn out.

It was a lovely, mild day. We bought a coffee and set out walking along the foreshore. There were a lot of people out enjoying the sunshine. We ran into a couple coming the other way we’d met a few nights before – the couple who’d thought us brothers. There were others, like us, drinking coffee, and a few who’d picked up a takeaway cocktail in a plastic cup.

It’s a pretty walk, and as we went along, we talked of all the normal things, interspersed with odd laughter. I guess we were out about 45 minutes and it was lovely.

I can barely walk 20 paces now without needing a rest, so such casual activity seems novel. I can’t wait to the day I can do it again.

I’m reminded also of the occasion I lay in bed with all the doctors working on me. I knew it was serious, but fear seemed a distant thing. What good would it do me? And so I found myself concentrating on the essentials to get through.

There was a stray thought that crossed my mind, however. I thought of Cheeseboy. I thought of all he’s gone through lately and all the support he’s given me, and I thought, I can’t let him down by dying. It lacked grace. And I thought of Rigby. I didn’t want to go without seeing him again. That was enough.

I made it through, and probably always was – though I feel now that I know how you die and don’t want it.

It’s a bit over a week since then and I’m home now. I feel very weak and frail. I’m sure I’m still losing weight, though I’m ploughing the food into me. I’m steadier on my feet but feel light-headed quite commonly. That may be slightly better today, but there’s no denying the breathlessness simple activities induce. Even typing this tires me, including my arm.

I once boasted I had biceps like melons. Today, they’re like lemons, and I have chicken legs now as well. Patience, time, and constant feeding should address that, though it might be weeks until I turn the corner.

It feels so very strange to be so weak. You never cease to learn.

How it unfolded


When I was in hospital I would post updates to Facebook on the basis that it was easier to explain once to a lot of people rather than tell the same story again and again individually. Surprisingly, it became therapeutic for me. As always, writing was a way to draw sense from an experience and to delve more deeply into the experience. And, locked up in hospital and feeling separate from the world, these posts became a bridge to the world I had left behind. In a way, the writing of these and the interactions that followed, re-connected me. I needed it.

Rather than recreate it, I’ve copied the Facebook posts to here, in chronological order:

10 August: Tomorrow’s the big day. 6.45am I’ll be in hospital. I’m okay but feel some trepidation. Normal, I think. It’s the mystery to come, the unknowns, that wrong foot me. And the violence of it. Come Wednesday I’ll have at least four new scars, but I’ll also be absent the thing that would otherwise kill me.

This time tomorrow I’ll be prone and insensible while doctors I’ve met only briefly will be doing their thing. Strange to think the man wheeled out of the theatre will be different to the man wheeled in. I’m ready for it. I want the pain to be gone, and though there will be pain after, and a long road, it will be the right sort of pain, the pain of recovery, and I’m up for the journey.

I’m not one for hyperbole or platitudes or anything too rah-rah. I like to see things as they are and call them by their true name. I know I’m resilient, but for now, I rely more on surgical skill, medical science, and luck. All the same, from the moment my eyes open after surgery, I dedicate myself entirely to giving this thing a beating it won’t forget. Wish me luck.

11 August: Very exhausted. Huge op. Bigger than expected. Very swollen still, barely talking, and only just now sitting up.

17 August: I’m not the fittest guy in the world, but I was always limber and mobile and pretty well-formed, so it was odd sitting down with a physio to discuss how I’m going to get around when I get home—checking if I had someone to look after me and if any stairs, etc. The suggestion was I might take a walker home with me.

So, we went for a walk using one, saying (in sign language) I don’t need one. We went for a spin to the far end of the corridor and turned, at which point I released the walker and let it roll forward, to prove the point. My hip is problematic, but I’m not running marathons, and it will heal. And anyway, Rigby will help. “Don’t do that” they squealed with a laugh and I reeled the walker in. Tomorrow I go without it.

19 August: The good news is that all but the feeding tube in my nose has now been removed from me, and I expect that to go this afternoon. I’m ahead in many of the indicators and have consciously pushed the limits – perhaps too far. Pain is only an occasional issue and at a much lower level than for comparative patients.

The bad news is that I’m rooted. Can’t remember ever feeling so weak – typing, like this, takes it out of me. My right hip and groin are deadened and swollen almost double the usual from surgery, with occasional painful moments. I can’t bear weight on that side. I would struggle to raise my arms above the plane so weak and debilitated I feel.

I’m on constant medication. When at home I try and keep it simple. I tend to think they can get in each other’s way and complicate things, but then I’m just a civvy crank. Because of my condition seemingly, they’re much more efficacious – I wouldn’t dream of taking a Panadol at home, but here, they’re mothers milk.

My mouth is full of padding and the sort of fishing line that dissolves – all very awkward, feels uncomfortable and tough even drinking, let alone talking. I suspect the swaddling is infused with a medical pain killer, which adds to the feeling of lightheadedness as they unravel.

Finally, though facial swelling is going down, still very tight. Feel I’m not seeing clearly from the right eye, but expect this will improve. The cheek – made from my hipbone – feels very heavy, but I heard one of the plastic surgeons refer to how it will adjust with calcium. Everyone is delighted with how ‘pink’ the flap in my mouth is.

Strange thing every morning to have crews of surgeons and specialists turn up at around seven and poke their phones and other bright lit instruments at my face and, particularly, my mouth. It feels like a very strange form of paparazzi.

Later: Starting to hit home how many things I’ve taken for granted I now need to relearn, at least in the short term. It’s a little confronting, so much require adjusting to in terms of ego and vanity, but including the purely functional. Have to stay focused on that and accept not all of it will come back. And maybe accept the need to slow down and take it rather than fighting it every inch of the way. There’s a lot to ponder.

20 August: Drinking tea out of a straw! What’s the world coming to? I’m not even going to attempt a coffee until I get full eating privileges back. It might be a while.

Later: I always wonder how much I should share. By now, for many of you, I’ll be a daily update, but I’m still living this intently 24/7. A lot of it is very hard. I like to be lighthearted, but I also want to be honest.

This morning I was briefly in tears thinking of Rigby and wishing I had his affection to keep me going. These are the things you yearn for in times like this – genuine affection, commitment, love. You’re on your own after a horrible procedure in the middle of covid and above all, you want to meet the eyes that care for you.

I remember in the week ahead of surgery the surgeon suggested it might be tougher for me than for many others because I was considered young in a medical sense and very active, and for me to lose all that in one hit would be hard to take. I tended to dismiss that, yet here I am.

The cute, manful story is that I’ve stepped up to the plate and enduring the challenge. And it’s true, in a way, not that there’s a choice. Yet here I am also having to face up to hard things every hour of the day.

You don’t come into life with attachments, it comes natural, but in the last week, I’ve needed attachments just so I could breathe again and eat. And just to talk is a great hardship. It’s bewildering and scary, and I’ve not yet become accustomed to the utter indignity of a life where there’s little I can do for myself. I’m a proud man but it’s not something I can afford – not with blood trailing from a nostril, food leaking from a crooked mouth, and the grooming standards of before a luxury.

Even with the surgeon. I sat before him a fortnight ago as an equal. Now, in his territory, I come as a supplicant. It’s the way of it and he – and all staff – are fine. I just have to accept a loss of authority and autonomy. Many thousands go through this every week. You deal with it, but I fear how much I’ll get back.

Still, I expect to get my puree certificate today. 😊 I’m going well and should be out Monday.

I should also add, that I intended to do this my way and be open about things generally but cautious in how I relate them. What I’ve discovered is that this is a mental journey more than it is physical. I’m locked inside this body enduring it, looking out, trying to make sense of what I see and feel, and trying to understand what it means for me. This is me figuring things out, but I have to do it. And, I can’t do that silently I’ve discovered, because everything else has been silenced. This is my only voice right now.

22 August: I had a minor setback the other night that has left me laundry deprived. Twice I coughed up blood, dirtying my last outfits. Because of Covid, there’s no laundry, and I’m stuck wearing hospital PJs until I leave.

Hygiene is a general concern. For obvious reasons, I haven’t brushed my teeth since before I came into hospital. The nurses do their best, but it feels pretty grotty still. I hate to think what my breath is like. Since surgery, and only temporarily, I’ve become a mouth breather. I wash every day, and if I’m lucky, it’s a seated shower. Not a lot of energy, and my hip makes many things difficult, from standing to dressing.

I’m amazed at how much body mass you can lose in such a short period. I’ve got from strong as an ox to someone who breathes hard getting out of bed. Much of the muscle in the chest and shoulders have fallen away, but I have a pudding belly from what they feed me.

A lot of this is just doing nothing, and my resources diverted to recovery. I think the hip and groin are consuming most. I don’t look great, but the more significant issue is what you can’t see.

I feel as if I get few good meals in me in the next few weeks that will go a long way towards getting my strength back, though that’ll be tough with my mouth as it is. The other thing is sleep. I haven’t slept well since I got here, until last night. A foreign, noisy environment, an immobile hip, and the need to sleep sitting up have made it difficult. Last night was the first time I slept through and could feel the therapeutic benefits – an actual sense of things knitting together.

I push too hard. I don’t like to let it drift for many complex reasons. But, acceptance. I reckon I’ll be out by Wednesday, barring setbacks.

In response to a query as to why I was so impatient to get home: Thats a very relevant question, and my answers will seem irrelevant to many, I reckon. Mostly, it’s because I hate feeling dependent and always have – which probably explains much. I have great respect for medical science and professionals in the industry, but by instinct resist the regimentation that hospitalisation requires of you.

Most importantly, I want to be back in my own environment – home. I want to sleep in my own bed and lay in my own bath and have my own mutt beside me – and, even out of reach for now, my friends too. And I know that if I make it home that I’ve achieved a stage – gone up another level in the game.

More to it than all that – I’ve learnt a lot these last 10 days – but that’s a fair summary.

23 August: I was up early this morning to take a piss before the doctors visited. Then I sat by my window and watched the sunrise over Melbourne and little streams of steam emerge from myriad hidden chimneys as the city came alive.

I got moved to a new ward yesterday, along with my partner. We’re now in a four-bed ward, and the vibe is different. For a Carlton supporter, he’s a good bloke, and we have a go at each other through the day. Now there’s half of that and twice the nocturnal sounds.

Every time I’m out of bed and on my feet I’m required to wear a brace. Basically, it’s a girdle – a strip of elastic that is wound tight around the body and secured by heavy-duty velcro at the front. It starts just at the top of my thighs to my nipples.

Since the surgery on my hip and groin, it’s absolutely necessary as I have no core strength without it. It’s a nuisance, though. I try to do as much as I can myself, but in the dead of night have called for the piss bottle a few times to do it the easy way. It feels a cop-out, though.

Last night I got up to take a leak and forgot to put the brace on. I stood above the toilet marshalling my puny strength to get it done and back to bed. It’s okay to sit down to piss I told myself. I didn’t, though – I’m not ready for that yet.

These are some of the mental games in my head: pride and defiance against good sense. The battle between getting the necessary rest and the urge to go further, and sometimes, too far. The balance between listening and doing. Some things never change.

In response to another query as to why not rest up in hospital with Covid raging outside: Not if I want a good nights sleep. It isn’t quiet through the day with people coming and going and PA announcements and clanging and banging and conversations in the corridors; but come the night, you have to put up with the coughing and spluttering too, the snoring and farting and strange things people utter it cry or whimper in their sleep. Tranquil it isn’t.

Later: Since the incident the other night, they put me back on a feed tube. It’s uncomfortable, inhibits breathing, and each time makes me want to cough. I reckon I go back 20% every time it’s used and I’ve been pushing to have it removed as it seems counterproductive.

Turns out of the reasons that’s not so easy is what should have been a strength. The dietitian says because I’m young – they call me the young guy here! – and because I’m tall and strong it takes more to replenish me, which sort of makes sense. They fear I may have lost a bit of blood the other night, and because I couldn’t feed, lost a lot of strength. I think that’s true, but I think I’ve recovered it too. I know they act from an abundance of caution, but all the signs – they admit – are fine, and I reckon if they harness the strength in me then I’ll recover quicker. I know my body.

24 August: So, I didn’t really explain what happened the other night – late Friday into early Saturday morning. I was laying in bed when at about 11.30 my mouth filled with what felt like a gooey substance. I called the nurse and with another helping her they cleared gobbets of old blood clots (from the surgery) as they emerged from my mouth. That took about 10 minutes to clear up. It was unexpected but not necessarily something to be alarmed at. I went back to sleep.

About an hour later it happened again, except this time it was fresh blood – essentially, I was bleeding and unless they stemmed the flow I was in trouble.

The nurses investigating called a code blue. A PA announcement and within a couple of minutes about a dozen doctors and specialists were crowding around the bed. It was like in a movie in which I was the star.

I guess they worked on me like that for nearly 2 hours. Doctors were called in from home. At all times there were at least two of them working in my mouth trying to stem the bleeding and suction away the liquid. Others worked on other aspects, checking signs and the conversation was constant.

I guess it was pretty scary, though it appears more so in retrospect. At the time I knew it was serious, but I didn’t feel I had the time to worry about it. I was focused on what the doctors were doing, my eyes flicking between the tableau of faces. Mostly, I concentrated on doing whatever I could do to help. That boiled down to simple things: keep breathing! As my mouth was constantly full of hands and instruments and wadding, the message became even simpler: breathe through your nose.

I began to tire after nearly 2 hours of this, but by then they’d decided on a small piece of emergency surgery to reattach a stitch that had come loose. I was wheeled downstairs and lost consciousness going into surgery, regaining it in recovery.

In the days since I’ve had one of the doctors and a nurse come to me and commend me on my calmness at the time. It feels a lot scarier now. I keep remembering what it felt like lying there at the centre of it. I must have lost consciousness a couple of times because it felt like there were jump-cuts. I’d open my eyes and notice the subtle changes in scene. They’d ask, did I know where I was? I did.

More to come…

Later: So, after coming out of surgery I rested back in my room feeling totally out of it. After a couple of hours, I decided I needed to go to the loo. As I do, I thought I could manage it, but as I stood I began to feel giddy and I collapsed to the ground unconscious before I hit it.

I came to about 20 seconds later sprawled on the floor in my undies, once more a platoon of medical professionals in attendance. I drifted in and out, and was eventually returned to bed, as weak as a stripling. I remained there the rest of the day.

In response to everyone urging me to slow down: Dinner tonight was a bowl of watery pumpkin soup, some custard, and apple juice and a high protein strawberry milk drink. Everyone else are on solids.

I’ve been a good boy today and taken it easy. The universe has spoken and this little grasshopper has listened.

Other than these meals I’m on 3 x feeds through my nose. These are high calorie feeds, not much fun, but all about building up my strength.

They knock me out every time. It’s like having a big Sunday roast with extra spuds, a few good glasses of red and a rich dessert and stretching out for a nap afterwards after loosening the belt. Like that, but without any of the fun bits.

I fought it before. Now I let it happen. I’ve had plenty of rest today and still feel pretty groggy. It must be good for me. The only real calories I expend are in healing, but there’s plenty of that to be done. I’m hoping there’s a quick payoff.

26 August: I’m now waiting to hear if I can go home, possibly as soon as tomorrow. I still have a nasal-gastric tube in, but am now eating orally. The decision has been made that I can go home once the tube is removed. One team has agreed it can come out now, as has the dietician. Just waiting on the other team to consent – they’re currently in surgery.

It comes as unexpected good news, just as I need it. I’m ready for the next stage, which is slow and steady recuperation at home. Then after that, radiotherapy. Then, complete cure and back to normal life. That’s the plan.

Touch wood.

Now: and that’s what happened. Been home the last couple of days. Hard work. Haven’t been out the front door yet. Sleeping much better though.

Here I am


Okay, there’s been an ominous silence, but I can confirm – I’m alive if not kicking.

Surgery was Wednesday the week before last – just over two weeks ago. I was picked up early, said goodbye to Rigby, then shouldered my bag and entered the hospital. It was very efficient, with a ritualised aspect that put me in mind of the military. By that stage, I was in medical scrubs and had been wheeled into the area ‘backstage’ where the technical prep began.

Was I nervous? Bound to be, but by then I was on the conveyor, and the maths was simple. Either I have surgery and a shot at another chance – or I don’t.

There’s a lot in this story to be told. The good news story is that seemingly it was a success. No guarantees as yet and radiotherapy will be required, but both surgery and plastic surgery delivered.

I don’t know how much I can share now. I returned home yesterday, but basically I’m an invalid at the moment. Rather than taking my fibula, as foreshadowed, the surgeons took some bone from my hipbone for the replacement cheekbone, and a long strip of skin (and an artery) – a tram track, they called it – from my groin to use as a skin graft in rebuilding my palate. In combination, this has had a big effect on my mobility. Much of my hip and thigh are still numb, but I’ve progressed from a walker to a cain.

Otherwise, my face is so swollen still that I can’t see clearly. Above all. I have a fraction of the energy and vitality I had before. It feels like I’m operating in heavy G. Most things are hard at the moment, though with time it will improve.

There’s a lot I want say about my experience which, in parts, was horrible, and included an episode of paranoid schizophrenia in the days after surgery. I progressed well after that, until an unexpected episode saw me coughing up blood and led to a second surgery. In between, as they worked on my body, I had my first real conception of mortality. It was a profound couple of weeks.

For now, the surgery is done and I visit the oncologist next week to follow up. The surgeon told me they had to go deeper because the cancer was more extensive. He thinks they got most, but not all. I’m not out of the woods yet.

The good news is that I still have my eye, which was at threat. And I survived the biggest surgery the hospital has in its book.

More when I can.

Bang!


Tomorrow is the big day, though I haven’t had confirmation from the hospital yet.

On the surface, I’m pretty good, but I had an interesting sleep last night.

I haven’t dreamt much lately, at least, nothing that I recall. Last night I had a dream about sharks. I’m pretty sure it was related to the surgery tomorrow – repressed anxiety. Following that was something that I’m not sure if was a dream, or if it was the crazy, nighttime thoughts that come when the defences are down.

I imagined myself waking up from surgery and panicking at the tubes coming from me, particularly that of the tube coming from my throat. Suddenly I feared I couldn’t breathe and my heart went wild.

I imagine it will be confronting when I first wake up, particularly trying to figure out if I still have my right eye. Praying that I do. Now I’ve got this other thing in my head. It’ll be strange knowing that I’m breathing through a tube, and the array of tubes will likely be intimidating. But I expect also that I’ll be half out of it. I doubt I’ll rouse much energy. Guess we’ll find out.

I’ve mentioned how I’ve lost much of my appetite over the last month or so. That’s still true. I don’t feel off so much as disinterested, which is odd for me. I have a mighty appetite normally. I could eat a large pizza by myself easily, and do regularly. Right now I might go a couple of slices and that’ll do me. I wouldn’t order a pizza though because it does nothing for me now.

There’s a risk surgery may affect my taste buds. I hope not. If it does, it might only be temporary. I’ll be truly pissed off if it’s true.

There’s been a similar effect on my libido. Not fussed, not much interested, the whole thing. I took that personally as it feels so much a part of your identity. Did this make me a different person?

The good news is that it’s returned to me in the last week. It may be a bit of the condemned man longing for what he can’t have. Hopefully, I can and will have, and imagine that time – perhaps December.

And I’ve just heard from the hospital. 6.45 tomorrow morning. Bang!