Dealing with it


Okay, so I decided to document the difficulties in returning to ‘regular’ work after cancer. You’ve endured some rough treatment and been off work for a while, but while there remains physical damage and recovery is ongoing, you’re on the way to healing. Judge for yourself if what follows is a grizzle. For me, I want to get it on record, if only to highlight what not to do.

The first challenge is how work handles it. It’s big news for you, but it’s a shock to them also. Initially, this was done well by work. They were sympathetic to the news and gave me plenty of space. HR was in contact to see what I needed and how they could help me. I was sent a care box and was told by one of the managers that they would handle the announcement within the broader team. That’s where the issue arose.

For reasons still unclear to me, the announcement was never made. Perhaps they were uncertain how to do it or if they should. If they were in a dilemma, they only had to ask me, but they never did. I was clear in my mind that I wanted it out of the way, and the best time to do it was when I wasn’t there. I know it’s awkward. It can be a shock. Best to get it done quickly and without fuss and now rather than later. It never happened.

Some people heard about it. Others I told at different times. Unfortunately, most are still unaware of what happened to me, which makes it hard.

Now I’m working again and encountering people in the office; I never know how much people know about my situation. I tense up a little bit with the uncertainty and when the question comes routinely – “how’ve you been?” – I think twice before answering. Then, if I’ve answered with the truth, I have to deal with the shock and discomfort I generally get in response. I don’t want to have to deal with it and shouldn’t have to.

I’m much more comfortable with the people who know I had cancer. I have no problems acknowledging it or even talking about it, and once it’s out in the open, I feel like it can be normalised. That’s not the case with people who don’t know, which is most. I’m more tentative with them, even stand-offish.

The fact is that someone only has to look at me to know something happened. Get it out of the way. Ask! It might be a little unsettling, but I won’t mind. I much prefer that it wasn’t overlooked or ignored.

Making it more difficult is the damage to my hearing and my speech. I miss most of what is said in noisy environments. It means that I disengage and, more importantly, miss things being said. I’m sure anyone hard of hearing knows what I mean. You nod along as if you’re getting it, straining to hear and watching the speaker’s lips as if that might help. Finally, there comes the point when it becomes too hard, and you tune out. I’m not being rude: I can’t understand you.

What’s even more difficult are the difficulties I have with speech. On balance, this isn’t nearly as severe as my hearing loss, but it’s tougher psychologically.

My hearing won’t get any better, but my speech probably will, and it’s probably not nearly as bad as I fear it is. It’s just, for some reason, how you speak and how you sound is tied up much more in your sense of self and self-esteem. Most of the time, I’m understandable, but there are occasions when my tongue feels thick in my mouth, or my mouth is full of marbles (actually, swelling). It’s a real struggle to articulate at those times, and my speech comes out thick and unwieldy. I’m embarrassed by it.

It means I don’t open my mouth to speak nearly as much as I used to, except with friends. The most significant difference, I find, is that I don’t risk spontaneous utterances. Someone says something which, previously, you’d respond to with a one-liner or a quick reply, but you now remain silent. When I am talking, I find myself casting ahead, reviewing the things I want to say and searching for a simpler way to say them. I was an articulate, well-spoken man. Now I avoid difficult words and words with multiple syllables. There’s no way I could read this post I’ve just written.

In combination, this makes me someone I don’t want to be. If people understood my circumstances, I’d feel much less self-conscious. That’s the original sin.

The other thing that aggrieved me was how I was treated when I was at my sickest and off work. I heard from no one but my direct manager, and I had to contact him half the time. No-one wished me well or checked in on me just to say we’re thinking of you. No-one wished me luck before my critical surgery or when I started chemo and radiotherapy. There were no cards, flowers or fruit when I was in hospital, and maybe I’m old-fashioned expecting it – I just think it’s a box that should be ticked.

I felt forgotten. Abandoned. Cancer is an arduous and lonely business. I needed all the support I could get. I got practically nothing.

When I spoke to my manager – perhaps 5 times over the period (though he did visit once) – it felt like it was a chore for him. I always had the sense he was doing something else and not really listening. Maybe he was – he was flat-out filling in for me – but I would have welcomed even that little bit of honesty.

Then he started to ask when I was coming back to work. It became tedious. I’ll come back when I can, I’d answer. Then he’d ask the next time again. It felt all about that. When could I help them out? It was from a sense of duty, and even guilt, that I returned to work in February – prematurely, I think.

Even then, now that I was speaking to him more often, he was always asking me when I would increase my hours. I got angry with it. I’d tell him once, twice, three times, I will when I can, but it never seemed to get through to him. All the while, I thought all he cared about was work. My health, my well-being, was not a factor.

I know it paints a poor picture of my manager, but in his defence, he was very much under the pump and not getting the support he should have. On top of that, he’s not very good at these things. I sometimes wonder if he has a bit of a savant about him. Sometimes he’s so clueless that it’s almost funny. He retains a naivety that many years of working in the rough and tumble of the corporate world haven’t managed to change. It’s endearing in a way, and I find myself not taking it as personally as I might otherwise.

But then he suggested I should look for another job internally. That was stupid and unbelievably naive. Of course, it pissed me off. I was astounded. Maybe he meant well, but I think really, he figured if I got a job somewhere else, he could replace me with someone full-time. This was at the height of him nagging me about increasing my hours. I don’t think our relationship has been the same since.

I have other issues with work, but they’re not a part of this. Getting sick, as I did, is pretty hard work. You’ve got your hands full just staying alive and getting from one day to the next. You can’t have too much support. But, you get through – what else are you going to do? And it’s thanks to the doctors and nurses, the incredible professionalism of the surgeons and medical science. And it’s thanks to your friends. Sadly, it’s no thanks to others.

I’m willing to move on from it. I’m not someone who harbours grievances. It’s not for me to judge. Karma will look after that. Unfortunately, I’m reminded of it every day at work. I don’t think that’s going to change.

The shadow


Before going to work yesterday, I popped into St Vincent’s for a blood and urine test I was meant to have done about a month ago. I forgot to mention: they now want to check for diabetes after some elevated blood sugar levels. I didn’t get the test sooner because I was on holiday and then without a car, and because I doubt the diagnosis – though what would I know?

One thing it highlights is how there’s always something. I was at the Alfred hospital the week before last to consult with a thrombosis specialist. It gets a bit tedious.

One thing that is definite is the cataract. I’m glad I re-scheduled surgery because it’s clearly getting worse. It’s surprising how noticeable the decline is. If I wasn’t having surgery for it I’d be worried. As it is, it’s a bit spooky.

Things are fuzzy at distance, but the real deterioration has been in my reading in the last fortnight. Unless it’s in large print, I can’t read a book now, and I’m even having some troubles reading a screen when the print is small, despite the backlight.

There is some discomfort with that and I’ve taken to painkillers again occasionally, though if I take them too regularly I get weary by late afternoon.

These are small things in relative terms. My eyesight will soon be better than it has been for years, and in general terms my health is improving. I had problems with my hip earlier in the year but it’s improved so much I’d almost forgotten I had an issue. I get some occasional stiffness now, but not the pain, nor the limp. I still have no feeling through the area.

For the most part, I’m on top of things mentally also. There are times I feel as if I’m living under a shadow, which is the result of having survived a killer disease. It’s a curious thing, but unwelcome when I feel it. It’s not always there, but it’s always in the background.

The reality is that all your life things can change very quickly, but you don’t really have an awareness of it. Accidents happen, people get sick, but you’re young and strong and invincible. Those things happen to other people.

Then you get sick and for a while you’re not sure if you’ll survive. I certainly had my doubts, though I never thought I would die – just that I might. It doesn’t happen though. By some miracle of medical science and voodoo you survive, though it’s hard won. It leaves scars, both physical and mental.

I no longer have the blithe belief that I’ll go on forever. Death has entered my consciousness. I have an awareness of the end of things I never had before. I go on each day with it there in the background. It was always there before, but having come so close to it you can’t escape it’s orbit now.

I’m aware that I’ll get old and decline. Visiting hospital you see a lot of sick people and it terrifies you. You also see a lot of old codgers – the old fellas who speak too loud and seem slightly out of it. The world has passed them by, though they’re still a participant. That might be even more terrifying.

What makes it more piquant for me is that I’ve survived something I know might very easily return. The ice feels firm beneath my feet for now, but I know that I might also plunge through the surface at any moment.

It’s a precarious sense of being. It separates you. You feel it. It is like a shadow and you want nothing more than to be free of it – to be carefree again and live with purpose. It’s like a kind of sour wisdom, a belated loss of innocence. It’s what marks me out as different from most people now – not that I came close to death, but rather I have the knowledge that death may mark me again at any moment. It’s there, lurking.

I want to be free of that. To my way of thinking the best way of doing that is to return to some semblance of normal life. It won’t go away, but perhaps I’ll lose sight of it in everyday routine. That’s the aim.

I’d like to say that I know nothing has really changed – but it has. There’s a hard edge of reality in the knowledge. I survived, but the odds that I’ll get sick again are pretty good.

But I’m pretty good, too. I know I’ve been fortunate and I feel grateful. I read some interesting stats the other day. About 40% of people will get cancer at some stage. I was both lucky and unlucky I got it relatively young – I probably wouldn’t survive if it came when I was older. I was strong enough to endure treatment and overcome it.

About 1 in every 6 deaths is related to cancer. Mine was a rare form of cancer, and generally fatal. It belongs in a category of cancers that afflicted 130,000 people worldwide in 2020, of which 80,000 died.

Here I am today. I plan to live for another 30 years. It could be I turn out to be one of the lucky ones. Here’s hoping.

Acknowledging


I was in the office today. Each time I visit I tour the floors searching for familiar faces. There’s not many around. A lot of people have come and gone over the last few years and at any given time the office is probably not more than 30% full now that we’re hot-desking.

There are always a few I stop to have a chat with. Today it was the manager of one of the affiliate organisations. He’s a top bloke. We used to sit nearby each other before he got promoted to this role. We’d talk footy and business process and what we did on the weekend.

He called me into his office when he saw me today. “Come to see where the cool kids hang out?” He said.

“Yeah, where are they? I answered.

He’s a keen Swans supporter and we chatted about what a disappointing grand final performance and about work and returning to the office, and so on, and then – with a gesture towards his own face – he asked very sincerely how I’d been.

Surgery, and cancer in general, has left scars, and my face slightly misshapen. He’s the very first person to say anything about it. I was relieved and grateful at his honest concern and curiosity, and I told him the story: I was okay, but I’d had cancer. I was back working, but it was pretty hairy for a while.

I didn’t go on, but I left him glad that he had acknowledged something that was pretty obvious. I wish more people did.

It contrasts with the usual confusion. Only few people know I had cancer, and when they ask how I’ve been I never quite know how to answer. I can’t tell them I’ve been tickety-boo. That wouldn’t be accurate. But then, it’s always awkward when I tell them the truth. Well actually… Sometimes I answer enigmatically. I’ve been worse, I tell them – which is true enough.

I had that situation riding in a lift last week. When asked, I took a deep breath and gave them the gist. They were shocked, predictably, but as the lift doors opened one turned and said “that’s okay, I’ve got HIV.”

We both got a laugh out of that. He’s another good bloke.

The dread


Quite often I feel it’s a small miracle to have survived cancer. At the same time, there is a surreal edge to it as if I can’t quite believe I was placed in this situation. I know it’s a bit of a cliche, but sometimes I think I only have to wake up, or give a vigorous shake of the head, to find it was all a dream.

The sense of the surreal is compounded when I meet people who haven’t seen me since before all of this happened, as is the case with some this week. Almost invariably they give me a searching look examining me for scars and signs of my illness, before proclaiming that I don’t look too bad, and, better than they thought.

I smile at that and agree, there’s been a great improvement, much more than I thought likely. Still, the signs are clear to see.

The other night I got a message from an ex-colleague who had only just discovered my situation. He was shocked and sympathetic, as you would expect, and asked what happened. I stared at the screen of my phone and wondered how I could possibly answer in a couple of sentences. In the end, I gave him a few laconic cliches. That’s what they’re there for.

Having survived for over a year since surgery I can now discern separate stages of the process.

Initially, it’s all fear and uncertainty. The word cancer by itself is enough to conjure up a sense of utter dread. You don’t know if you’ll survive and the thought of an abrupt – or drawn out – ending is terrifying. For me, there were all sorts of existential pangs that went with that. I felt bruised and sorry at the thought that I might die unfulfilled. More immediately, I had to deal with surgery and treatment and that was confronting – though I clung to it like a man marooned clings to a liferaft.

Then comes the stage of treatment. Surgery has utterly drained you. You feel feeble and weak. You can barely eat. Walking is difficult. The day is a dull and repetitive routine starting with the ambulance picking you up to take you to the hospital. You stare out the window. You do your treatment – radiotherapy mostly, but chemo occasionally. You go home to sit in the corner or lie down, and do it all again tomorrow. Quite often, you feel dreadful.

The prevailing memory of that time is of enduring. I hated it, but I knew it might save my life. I counted down the days and was tempted to take a day off here and there, but I refused that. I had to stay the course. Head down, do it. I don’t recall much emotion. Perhaps I was too exhausted for it, but I think the truth is that it gets push aside. You have no time for it, no energy, and there’s no point to it. All of your being is focussed on getting through to the other side.

Then it’s past and you’re on the long, slow recovery. I was so weak. Eating remained an issue. I had lost so much weight, and I lost more. It was a different mode of endurance, the focus of which was getting stronger. I set myself goals. I was positive, optimistic. Get through this and you’ll be home free. At the same time it was hard to comprehend how much I had lost.

Then you start feeling better. You put on weight. You can do more, walk further. You become more functional generally and that continues, week by week. There’s a sense of hope and belief. It will pay off in the end, you figure. You look forward to a time when you believe you might return to some semblance of regular life. The news is good about the cancer and you push on, feeling bolder and like your old self. A sense washes over you that through this you have gained wisdom.

Now I’m in the next stage, which is more difficult.

The improvement has continued, but I’m frustrated at the pace of it, and impatient to be somewhat normal again. All that you can deal with. Be patient, grasshopper.

The thing is though, you suddenly remember you’re not out of the woods. It’s as if all this time busy getting better that you’ve forgotten that the cancer can easily return. Now it comes to you.

Everytime I hear of someone with cancer, my ears prick. A friend of mine, his mum died when her cancer returned. The news of ONJ the other week was a reminder of how you’re never free of the spectre. Then, getting in the car at the airport in Coolangatta, my mate tells me he’s come from a wake – for a man who died of cancer.

The reality is that there’s a pretty good chance that cancer, in some form, will return. The doctors tell me they’ll deal with it if it comes. They seem pretty upbeat, as doctors will be, and talk about immunotherapy.

I don’t know what the odds are, but let’s say it’s 50/50 that the cancer will come back in the next five years. And let’s say my chances of surviving that are 50/50. That gives me a one in four chance of dying from it in the next 5-10 years.

All this is speculation based on numbers pulled from my head, but the logic holds if not the odds. It’s at my shoulder, and probably will be the rest of my life.

This hit me hard when I got up here. I felt different. I’d been living in my own bubble and suddenly I had moved out of it. I saw myself as others did, as someone recovering from cancer and different from everyone else. I expected, and hoped for, an opening of my mind coming up here, but didn’t expect it to be so abrupt.

I imagined the despair I would feel at the thought of having to go through all this again. It was tough the first time, but you move into action. It must be different the next time.

I wondered if this is something I should prepare myself for. Should I accept that it may come back and kill me the next time? Should I confront death – non-existence – now, while I’m still capable? Do I make my peace?

Somehow, it’s not in my nature. I know I will fight every inch of the way if comes my way again. I don’t know that I’ll ever accept it. To be honest, I don’t know that I have the strength or philosophy to deal with it now.

I can feel it though, and hate it. There’s so much I want to do, so many plans I want to make, and it horrifies me that all that may come to naught. There’s no fairness in these things, but it feels unfair.

I think I have to continue on the presumption that I have many years ahead of me. You can’t live crimped thinking it might end anytime now. The odds, in the end, favour me. All that is fine, except I can feel it there. I suspect the only way of getting past the sense of dread is to live fully and in defiance of what may be. Give it time and life will normalise. In the meantime, I’ll make my plans, and move towards the changes I think must be.

Next stage? I don’t know. Perhaps there is a blossoming.

Staying the course


Sometimes I feel as if my whole life now is about my condition and everything else is pretend. I’m busy with treatment and seeing specialists and otherwise mitigating the symptoms and trying to get stronger. The rest is filler.

At those times, I feel stuck in a melancholy loop I can’t escape. I realise the true state of my condition and what it means for my life, as it is. There are moments it feels unreasonable and unfair. As in the cliche, I even wonder ‘why me’? It passes very quickly, but I know I’m marked forever now.

I get told quite often how strong and resilient I’ve been. There’s admiration for how I’ve survived and seemingly pushed through the pall of darkness that accompanies a diagnosis of cancer.

I’m genuinely modest when people express their respect. What other option did I have, I wonder. All I’ve managed to do in the end is to survive. Each day, so far, I’ve woken up.

But when I feel the all-consuming nature of my condition, I begin to understand more. It’s like the curtain is thrust aside for a moment, exposing the ugly reality. The trick has been to keep the curtain closed because to reveal what’s behind it does no good. Resilience is needed to stay the course and to keep going when those moments come, and when the hum of what lies behind the curtain cannot be ignored.

My hyperbaric treatment has finished, which means I can resume a more normal routine. As I keep proclaiming, I get stronger and fitter all the time, and am powerfully motivated to continue the trend. I’m often reminded, however, of what I don’t have.

I’m back home after a couple of days in Sydney for a conference. It was a very busy time and I was involved in, or initiated, a number of important discussions with partners and vendors. My mind went a million miles an hour figuring things out and putting them together. Out of that came a lot of questions.

I felt driven and productive, but I was also reminded of my limitations. Speech is more difficult sometimes, especially when I’m tired. I become harder to understand at those times, though I think there’s a minor impediment always. It’s frustrating when you’re trying to articulate complex concept’s intelligently. You become self-conscious, hyper-aware that people are hanging off your every word. In places where there’s a lot of background noise, such as a conference, you feel people straining to understand you, leaning in and occasionally asking for you to repeat yourself. Sometimes you can see in their eyes that it’s gone past them altogether.

I feel like screaming then: this is not me! Often, I’m speaking to people who know nothing of my medical history and I wonder what they make of me. I want to explain to them apologetically that I’ve had cancer and unfortunately one of the side effects is how it’s made speaking more difficult. It will pass, I want to tell them, an aberration – please excuse me.

To be clear, unless I’m tired, I’m easily understood in quieter environments and good with simple language. It’s words with multiple syllables I sometimes struggle with.

The other side of that is my hearing. If I’m hard to understand in noisy environments, then it’s true also that I find others hard to understand. Very often these days I practically give up on hearing all the conversation, relying instead on the bits and pieces that make it through to me, and the visual cues you pick up along the way.

The other thing is my eyesight, which has markedly deteriorated. I can still see fine, it’s just fuzzier than it was. I wonder at the timeline of this as I’ve only recently noticed how much it has declined. It will be because of the radiotherapy. I’m getting my eyes tested today.

Yesterday, I had another appointment with a plastic surgeon. This was a senior guy who had the manner of a senior surgeon – that is, I felt like a case rather than a human being.

He examined me, tut-tutted a little, then said I had not healed up as well as he had hoped. He suggested to me an experimental procedure if I was open to it? Basically, they remove fat from some other part of your body – probably my belly – and apply it to the affected area, inside my mouth. The idea is that it will spur growth and recovery. I agreed to it – what else was I to do? It’s only a day procedure.

He was sceptical about further surgery, which was welcome news, except that it means I’m stuck with the current constraints. There’s a piece of bone jutting into the side of my mouth that effects my speech. There’s another hard piece of bone in my cheek – which has no equivalent in the other cheek – which I think prevents me from opening my mouth wide. Both were placed there by surgeons in the major surgery last year (using bone from my hip), and must serve some purpose. It’s uncomfortable and inconvenient, but clearly they’re staying.

He said my speech may improve and that some of the swelling may diminish. He suggested I consult a speech therapist. It wasn’t completely convincing. Otherwise, he suggested some contraption to help me open my mouth wider.

From what he said, it’s clear that the healing has a fair way to go. They won’t do anything of significance in any case until it’s properly repaired. He explained that the radiotherapy basically zapped the skin and bone to just this side of dead. It was necessary to kill the cancer, but the fallout was everything I’ve been experiencing.

Bottom line is, as I’ve said before, there’s a way to go yet. I just have to be patient and accept it.

PS as I’ve written this I’ve had a call from the optometrist inquiring why I’m booking an eye test so soon after my most recent? I explained that I’ve had cancer since then and my eyesight has deteriorated. There was a pause then, quite familiar to me now, as that was digested and she formulated the appropriate response.

I understand and I’m sympathetic, but I hate this. On the one hand I want people to know to explain my symptoms – to excuse them, as such, and set them aside – but on the other hand I don’t want to be pitied or made to feel different or special. I don’t want this thing to define me, yet the reality is that it is the defining fact of my present existence.

End of the day, this is something my body has suffered, but the man inside that body remains. I’m strong and smart and determined. I’m hard at it, and perhaps there’s even a harder edge to it these days to prove I’m no different, to defy the common narrative.

It’s an interesting journey.

On the right track


I went back to St Vincent’s today to check on the progress made with the hyperbaric treatment. The appointment was with the Plastics department, and how my mouth was healing – the skin and bone – was the big KPI.

I went into the appointment feeling a little doubtful. There’s no doubt that my health has improved markedly since I began the hyperbaric treatment, but I can still feel a patch – much reduced, albeit – of exposed bone about where my missing teeth would otherwise be.

The good news is that the doc was pleased with the results. That means I’ll finish up this course of hyperbaric treatment next week and will have another ten days scheduled just as a safety. It’s pretty much standard.

Whether all the recent improvement can be attributed to the treatment or other factors, such as exercise and natural healing, matters little. The swelling is much less than it was, and much of the congestion from my sinus passages has cleared.

I’ve still got a long way to go to get back to full fitness, but considering I’d lost all of my wind, I’m going well. Stamina has increased, as has general strength. The body has hardened up generally and become more capable. Even my hip has gotten better. I still limp occasionally, but generally only at the end of a long day. Motion is lotion, as they say, and I’m hopeful it will continue to improve.

Much to my relief, a couple of key indicators I’d been keeping a sharp eye on have finally shown signs of improvement. After all the surgery and treatment, my blood pressure was awry – first low, then high – and my resting heart rate had increased significantly. Perhaps it was understandable, but I was puzzled and concerned that neither had shown any improvement, despite the overall boost to my health and fitness. Then, finally, in the last couple of weeks, my blood pressure has returned to normal levels – quite a drop – and my resting heart rate dropped from the low eighties to the mid-seventies. Still, some way to go, but the trend is positive.

On top of all this, or because of it, I’m sleeping a lot better.

My only two concerns are that I still can’t open my mouth much wider than an inch, and my speech is sometimes impeded.

I spoke to the doctor about that, specifically asking him to examine a couple of spots – the pointy lump in the side of my mouth and a hard ball in my cheek. In both cases, he thinks it’s bone – and it makes sense.

The pointy lump only became apparent when the plate was removed. The doctor believes it held it in place. Given that I’m missing teeth at the back right of my mouth, my mouth has a different shape and hasn’t the usual support as it would if they were still there. At some point, they will be. Dental reconstruction is on the agenda, but first things first.

The ball of bone in my cheek is more mysterious. It’s in a location I wouldn’t expect bone to be, and not with that curvature. It’s not there on my left cheek. But, as my facial bones on that side were reconstructed with bone taken from my hip, it’s certainly possible. Once more, the removal of the plate may have had an impact.

The doctor explained to me their process, which was comprehensive. First, they want to make sure that I’m healing properly. That’s the stage I’m at now. Next, they look at function and how they can improve that – the opening of my mouth, dental reconstruction, etc. Finally, there’s the cosmetic stage, making me look good again. The clear task there is to fix up my nose, but there may be other things they can do too. But that’s the last priority, and fair enough.

This means that I’m still likely to have a fair journey ahead of me – maybe another 6-9 months, assuming everything else is okay. I can live with that. Part and parcel of that is more surgery, but if it makes life easier, bring it on. And, if they can make me beautiful again, even better.

The fall and rise


There was a moment the other week when I left the offsite meeting in the city that I was mighty tempted to find a good wine bar and sit there amongst my peers and indulge in something that, once so familiar, had become foreign to me. I imagined sitting at the bar and chatting to the bartender, as I have so often.

Most particularly, I imagined myself in conversation with an attractive stranger there for the same reason as I. I was ready, I thought, to re-enter the fray. The thought gave me delight. I remembered the feeling so well. There was pleasure in it and mystery, and half of it was that the outcome was unknown. I’d always been good at that. It was not always easy and sometimes challenging, but I was independent, confident and articulate, and this was life. Most of all, I craved the sense of vigour going down that path and the spice of flirtation, not knowing where it would lead.

I didn’t. I caught the train home. The day will come, however, when I will brave recent setbacks and put myself out there again.

I mention it now because it felt new. Like the first signs of regrowth. By the next day, I was feeling much more cynical, dismayed by the banality of the meeting I attended and feeling a general sense of alienation.

The day after that, though, a Saturday, it all changed again. For the first time in over a year, I went to the footy. I went to the MCG with a friend who barracked for the opposing side. We sat in the MCC members in the pale sunshine, a wicked chill in the air. I hardly expected my team to win, but they did, coming from behind in stirring fashion as the crowd roared.

I had forgotten that feeling. To be part of a crowd is to feel part of a living organism. It heaves and sighs. It roars and groans. Listen to it with your eyes closed, and you can follow the match by the rise and fall of human noise and the shouted comments from the crowd. I had been there hundreds of times before and felt a thrill to be back. I was alive to it.

We had a beer at halftime and another in the Percy Beames bar after the game. It was a happy, rambunctious crowd. About me, the crowd wore their team colours, mostly scarves, most in the red and black of my team, and a few in the red and white of the other.

I felt a part of a community again. For much of the past year, I have been alone, and more so once Rigby had gone. I was unwell and generally incapable, battling on looking towards a time when I would be well enough to be a part of society again.

Cancer is isolating, as much mentally as physically. There’s a sense of incapacity that is psychological. The disease, and the treatment for it, has left you weak and scarred. You have lost something and know it. It looms so immensely in your mind that everything else seems secondary. You have to get through it, have to survive.

There’s the perpetual regimen of specialists and treatment and medication – and pain, too. It’s a totally foreign way of living that you resign yourself to. Your friends are good, but you feel they look at you differently, and you feel in yourself something different. Cancer is scary to everyone, to those who have it and to those who don’t.

The trick is to get through it. Not everyone does, but I expect I will. That time is getting closer, and hence I raise my eyes to look further ahead and imagine a life beyond this.

I felt that on Saturday. I wasn’t alone. Here, in the crowd, a crowd of people who felt and thought as I did, there was a sense of brotherhood. I spoke to a couple in passing, enthused by our joint victory. I handed another his beer and talked to a girl waiting for her friends. In that living, heaving, boisterous crowd, I remembered what it was like to be part of a community.

Keep dodging


I was speaking to a friend last night, catching up on what’s been happening, particularly with my health. As I updated her, she commented in passing that I was ‘on borrowed time’.

I was surprised. Initially, I was put out a tad by the blunt rawness of it. As we continued to talk, I wondered, is that what she meant? Is it really what she thinks? And do others think the same?

There’s a fair amount of interpretation possible in a comment like that. I took it to mean that I got away with it this time, but it would probably get me next time. There may be some truth to that, but the trick is to avoid the next time.

You can bet it made me think about things. Considering what I’ve gone through, I feel okay and getting better all the time. I don’t look nearly as bad as I did, and people comment on how well I look. To the casual observer, I look fine. Much of the weight I lost has returned, most of it as muscle, and I look well put together. And the exercise recently has toned me up. I lost all condition. Now it’s coming back nicely.

None precludes a return of cancer or a secondary occurrence of it. I figure that the odds are roughly 50/50, though I have no idea. They give you the all-clear after five years, and presumably, you’re most at risk in the early part of that. It’s coming up to a year since I had surgery – August 12. I must remember to ring a bell. I had a PET scan last week, and so far, so good.

There’s no science to it, but I don’t think it will come back. I was lucky to survive in the first place, but some of that was because I was relatively young and very strong. I’m not as strong as I was; I’m certainly not as young as I used to be, but my resilience is proven. And – if it counts for anything – I’m fucking determined.

I’d hate to think people believed that it would catch up with me, but not nearly as much as if it was true. I’ll deal with whatever comes my way, but I object to the notion that I’m doomed and my fate predetermined. I don’t believe in fate, and even if I did, I’d fight it. To believe that I was on borrowed time would be the same as believing all effort is futile. I won’t buy that.

To be fair, my friend’s sister was diagnosed with terminal cancer about the same time I got my diagnosis. I dodged a bullet, but for her, it’s only a matter of time – there’s nothing they can do. That’s how it goes sometimes, and it makes you grateful for any good fortune when you know it.

I asked a friend what he thought. In his customary rational way, he agreed that I was on borrowed time – though I think in a different context.

He argued that my cancer was a very rare type and, though he didn’t mention it, being stage 4 meant I was fortunate to escape with my life. On top of that is my age – like many, and like most will at some, I’m edging into the more perilous years of life. Having had cancer, the peril is probably magnified.

I prefer the metaphor that I dodged a bullet, and I think that’s closer to what he intended in meaning, and maybe my other friend also. I plan to keep dodging.

Doing time


There’s no hyperbaric treatment today because of maintenance, so I get a welcome opportunity to sleep in. I’ve been awake since early, nonetheless, and am sitting here now wondering what comes next.

I feel a bit lost without the structure of having to organise myself. I should be up soon, showered, and sitting at my desk for work, but it’s not so much that I can’t be bothered as I’m not interested.

I will do it because I must. I’ll go through the motions and perhaps get the whiff of something that interests me. Others look to me for leadership, which places some obligation on me. I don’t want to let anyone down.

I wish I could explain what it’s like. It changes, or my perspective of it does, but I still feel pretty isolated – emotionally isolated, if nothing else. I feel a distant hope mixed in with a weariness that’s physical but also emotional. Washed out describes it well.

Part of that is simply because I feel I’ve been at this so long and because every time I think I might be approaching an endpoint, it proves to be an illusion.

I’ve kept myself up for so long, pushing through physical limitations and keeping myself positive. None of that will change, but in this moment of repose, I long for a break.

It’s one of the moments I miss the company of Rigby, not to mention the close family I once had. One who would divert me and give unadorned affection. The other the tacit support and love that would allow me some respite knowing I was in safe hands.

I’ve always been independent and am good at it. I’m organised and determined and will go it alone without flagging (well, only a little). But I know if there were someone I could lean on through this trial and open myself up to, how much easier it would be. I feel like a tree on a bare, windswept plain, bent by the wind and stripped to the austere essentials, firmly rooted but alone.

I’m pretty sure I’ll be in for more surgery before the end of the year. I expect I’ll continue to improve in other facets and return to some aspects of everyday life. I’m heading in the right direction, but some things may never come good, and others that need more work. That’s the story. No matter how I spin it, I have to do the time and keep going.

Disrupted and dislocated


Today is the sort of disrupted day that makes prognostications such as I indulged in seem irrelevant. I’m sitting in the French restaurant I visited a couple of weeks ago. French music is playing again. I have a hot chocolate in front of me and an almond croissant on it’s way. I’m killing time a head of a hyperbaric session at 12.30. Earlier, I was at St Vs for another scheduled appointment.

The appointment this morning was with an infectious diseases specialist. It puzzled me at first when I was reminded of the appointment. Bad as it is, cancer isn’t infectious at least. Then I remembered. They’d discovered I had an infection last time. I’m on a long course of antibiotics to treat it. This was a checkup.

It’s all very familiar to me by now. I see specialists of every stripe, confusingly so sometimes – who’s responsible for what? But, no matter, the routine is identical.

I sign in at the front door, as you must do at every hospital these days. Then I make my way to one of two waiting rooms where I register my presence. Quite often, the waiting rooms are full. Many of the patients are aged, and it appears more than half are obviously in a bad way. You sit up straighter. You try to project good health, as if to prove to the world that you’re just a visitor and don’t really belong. Hospital waiting rooms are dispiriting places.

On this occasion, I didn’t need to wait long. I was called in to see a doctor I hadn’t met before. He was affable and conscientious. He had a quick look at me but didn’t have much to add. He went through the scans of my last PET scan, which I found vaguely disconcerting. He pointed out the white patches which were plates, and loose clips which would remain in place forever.

It was clear he was a sceptic when it came to hyperbaric treatment, which put a dampener on things. Through the conversation, it became clear that there was still a long road ahead of me, and that I would be returning to them regularly in the years ahead, even if it all went well.

I left feeling chastened. That’s not unusual. Out in the world you can blithely believe what you want, but in hospital medical reality held sway. They’re always encouraging, but cautious in their prognosis. You remember fresh, nothing is certain.

After another blood test, I left. There was just short of three hours until my next appointment and there was no point returning home. I walked towards the CBD. I felt a little glum thinking it’s alright being positive, until…

It was quiet and there were empty shop fronts, but so much I recognised and remembered still. There was a time the Melbourne CBD felt like a second home to me. I knew every nook and cranny, was familiar with bars tucked down anyways and cute little eating places I shared with friends. For probably 20 years I reigned over that, but that time was gone forever I realised.

I looked through the front window of a favourite bookstore before entering The Hill of Content just down the road. I browsed the bookshelves, as I have hundreds of times before over the last 30 years.

As always, there’s the serenity of a library, made hip by the interesting music playing in the background. As I take down books to examine, the same chastening thoughts curl like smoke in the back of my mind. There’s a rising resistance however, until I bump up against the edge of ‘fuck that’ – so familiar and welcome. It’s lucky I’m a gnarly prick.

I felt better after that and so I bought a book, for old time’s sake. I wandered down to the city centre and then through familiar stores, making my way slowly towards the station. I was surprised to see so much demolished and new construction in their place.

Soon, I will return to the Alfred for my daily treatment (though none tomorrow). I suppose I’ll make my way home after that and I suppose I’ll rouse myself to do my job. That’s what I mean by disrupted, though dislocated may be a more apt term. After all this, what point work?

There is a point, though. I just have to recall it.