Snakes and ladders

The last few days have been tough after what had been a promising period.

On Friday woke up with my right eye completely closed from swelling. Same again Saturday, Sunday and today. My face has really swelled up and is sensitive to touch, and the congestion in my nose and sinus means that often I must breathe through my mouth, particularly at night.

I don’t think it marks a deterioration in my condition. Rather, I think it’s an unfortunate situation where I’ve picked up an infection, which has aggravated the existing condition. I went to a GP this morning, and he agreed. I’ve now got a script for antibiotics and am hopeful it will be right in a few days. In fact, I have hopes that I’ll be better than ever.

I went to a new GP within walking distance of home. While I was there, he weighed and measured me. So I can say officially that I’m currently 88.3kg and 185cm. I’ve now started to take in small amounts of solid food and reckon I’ll start to put on weight shortly. I don’t want to get any heavier than 93kg, and the return of lost muscle will do that.

I’ll return at another time to describe the complexity of emotion and thought I’m experiencing currently. I’m a calm dude, but the nature of my circumstances make for a certain amount of intellectual and emotional turbulence.

Venturing out

For the first time in months, I went out over the weekend – and what I mean by out is that I went to places where I could sit with other people and be served. I had a brief taste of it a few weeks ago, but this was the real thing.

Both days were sunny. On Saturday, Donna came over for the first time since I moved. We walked down the road and sat in the sunshine, having coffee and tea and picking at a muffin I couldn’t enjoy. Afterwards, we walked by the beach.

One of the best things about it was having a meaningful conversation, and not just the practical, passing conversations I’ve had for most of my time in isolation.

Yesterday, another friend came over, and we drove towards Mordialloc. We sat in the sunshine again. He had lunch. I ate a few fries for the carbs, not the taste. When the clock ticked over to two, we ordered some gin from the dispensary there – first a cocktail, then a blood orange gin with tonic.

I didn’t know what to expect of this. I haven’t had an alcoholic drink since July. I’m much out of practice. Plus, I’ve lost all this weight since. But, no problem – except, because of my taste buds, I didn’t experience the complete enjoyment of the moment. I could taste about 40%, but no matter, the moment was symbolic.

It was good to get out, and if I pushed the limits a little, that’s okay. I pulled up well.

I’ve decided the time has come for me to push it a little more. I know most of my friends think it’s premature, but I feel as if I’ll never get ahead unless I begin to test myself. The simplest things have made me breathless. I have to push the envelope.

I’m still fatigued. I’ve spoken how I can sleep so easily. I’ve resisted it to a degree, though I realise I need it to heel. I feel a bit of a slop sleeping during the day, but if there’s any time I can be a slob, then surely it’s when I have cancer?

It’s all a bit of a balancing act. Exercise is good, but it burns up calories, which I struggle to get in. I can’t be silly.

Previously, I averaged about 1500 paces daily, which is fuck all (it was around 9,000 when I was healthy). I’m going to push the average up to 2000, then 3000, and so on.

I’m encouraged in doing this as the situation with my taste buds is improving. I need to explain this.

It’s my theory only that two factors were affecting my taste buds. The first was the backwash of all the cells killed by my treatment, flooding my nose, my mouth, my stomach (making me nauseous). This is pretty nasty and made practically everything inedible. The overwhelming taste was salty, smoky, bitter.

The second factor relates directly to chemo, which makes things taste metallic. These two overlaid each other. Now I’ve stopped treatment, the backwash has diminished, though a remnant remains. It makes eating easier, though – thanks to chemo – everything tastes metallic.

I’m testing the limits regarding food also. Nothing is enjoyable, though some things go down easier than others – sweeter things and some fruit flavours.

As always, it’s a day by day proposition. I’ll be in a much better place when there’s no more backwash, and my nose is cleared, and when I can taste truly. I can hope for part of that in the next 2-3 weeks, I think, as for the rest, it could be anytime now, or in months.

Surviving S4

I had a telehealth appointment with the office of the chemo oncologist today. After a week of cold, wet and windy weather, it was milder today, and so I sat in the back courtyard with my iPad, waiting to discuss my case.

As with my radiotherapist, they’re please with my progress, suggesting once more that I’m ahead of the clock. It’s reassuring but puzzling at the same time. I wish I could recognise more distinct signs of improvement. It was reinforced that it will take ‘months’ to recover, which seemed inconsistent messaging but consistent with what I feel.

Right now, I’m waiting for the flow of dead cells to cease and my nose to clear up. It may have slowed a little. Then there’s the swelling. The big one is being able to eat solids again.

Near the end of the session, I asked a question that had been playing on my mind for months. I was sure I’d seen somewhere or heard that my cancer was designated as stage 4, though that was inconsistent with what I knew of S4 cancer. Generally, stage 4 is bad news, curtains, or so I believed, leading onto terminal cancer. If that was the case, why was my prognosis so positive? But then, maybe I had it wrong.

So, I asked the question: what stage was my cancer categorised as? It was confirmed: stage 4. It was suggested that because the type of cancer was isolated to my head, it was not as fatal as it would be if it was of a primary organ. I didn’t follow it completely – not helped by my tinnitus – but she seemed to emphasise that there were ‘no nodes’, whatever that means.

She tried to reassure me, but I told her I didn’t care what it was, only what it becomes. If I survive it, that’s good enough for me.

It’s pretty scary, though, and I guess I should add the caveat that I’m by no means out of the woods, either now or in years to come. Even if they reckon there’s an 80% chance of cure, that leaves a 20% chance that it isn’t. And, even if nominally ‘cured’, that may not prevent a return. I won’t be safely cured until 5 years of clear results.

In the washup, I feel lucky. Mine was/is a nasty type of cancer, but the nasty aspects of it – being inside my face – may have saved me. I can feel reasonably confident that it didn’t go anywhere else as it was not present in my lymph glands, which they removed as a precaution.

If, in fact, I come out of this with a clean(ish) bill of health, then that’s something else I can reflect on. Few people survive beyond a few years with stage 4 cancer. If I manage a cure, I can only believe that I’ve been blessed, and I mean to make it count.

The waiting game

It attests to my state of being how rarely I post here these days. My mind remains active, but I’m without the energy to take the extra steps I would if I was healthy.

I had a bit of a tantrum yesterday. It occurred to me it was nearly 3 months since I’d had surgery, and I’ve been basically incapacitated since then. And before that, I was suffering from the pain of cancer. All of a sudden, I had enough of it. I was sick of being crook, sick of being weak and tired, sick of the constant wear on me, sick of all the things I can no longer do – such as eat as a normal person does or walk up the street.

It passed soon enough, but in the wake of it came a revelation: I’m always feeling shithouse; it’s just at some stages I’m feeling less shithouse than others.

Right now, I’m feeling moderately shithouse.

The week after finishing treatment was hard. First, I was nauseous and had the general sense of being out of it. Then I started to feel a little better – less nauseous, more alert, more energy. In the general way I like to spin things, I took it as a sign that I was on the way back, which may well be true, but doesn’t disguise the fact I feel pretty awful.

I’ve been pretty well unchanged since then. The main problem seems to be that while treatment has ceased, the cells continue to disintegrate, and the liquid waste from that flows into my nose – my right nostril particularly – where it thickens into a sticky treacle blocking my nose and impeding my breathing. This is constant.

I clear out my nose every 6-8 hours, which is a messy, bloody job, and then it starts again. It’s like having a nasty cold, except with blood. Besides the blockage and the difficulty breathing, my face feels (and is) quite swollen, and there are fine elements of shooting pain.

My cheek is red from the radiotherapy, as if burnt, and my eye is watery to the extent of weeping. I wake up each morning with it sealed shut. And my mouth on the right remains bound together by stitches. It reminds me of the aftermath of a serious dental procedure when you can still feel some of the pain of the procedure – only this has been almost 3 months.

You normalise things. Things become so standard that you accept them almost as normal and shrug off the inconvenience and pain. People ask how you’re going, and you answer fine – because you don’t factor in those things anymore. The real answer is shithouse, but managing.

On top of all this is fatigue. I can sleep at the drop of a hat these days, and it’s an alluring temptation often. It’s easier when I sleep, but I fear being lazy if I sleep too much. It’s part of my generational ethic that you must try to be productive – and you can’t be productive lying in bed. So I resist the temptation mainly or cut short my naps.

Part of my concern is that I’ve got to get the calories into me, and I can’t do that if I’m asleep. I still can’t eat solids and feel as if I’m always drinking a supplement of some sort. It’s never enough.

One of my concerns is that by the time I can eat solids again – hopefully, in the next few weeks – my stitches will not have been released. I can’t eat without that happening.

On Sunday I went out with a friend, to Bunnings, then to a cafe. It felt like my coming out, but it was exhausting. I huffed and puffed in Bunnings, very quickly out of breath. It took me about 20 minutes to recover. Then at the cafe, I sat there with a cup of tea, watching my friend eat a hamburger, wishing it was me.

It’s a waiting game now. At some point, the cells will cease their destruction, and the run-off will stop blocking up my nose. That might allow the swelling to ease and my eye to return to normal. As the cells regenerate, perhaps my taste begins to return to normal, and the healing process accelerates.

I know it will turn – it must. I just have to be patient.

The road back

It’s been a while since I wrote, mostly because I’ve felt too crook or haven’t had the energy or a combination of both. It’s no different today – I feel awful – but feel it’s time that I added to the story.

The story should be a good one and soon enough should start to feel well again, but, as they repeatedly told me in hospital, it will get worse before it gets better. It’s definitely got worse.

I finished my treatment on Friday. On Wednesday, I had my last chemo session, which was modified from the previous two because of the potential damage to my hearing. I was put on a lower dose of a different formula and the side-effects were much less.

On Friday, I had my final radiotherapy session and took home with me the mask I’d been wearing for the last six weeks, just in time for Halloween. It might make a handy scarecrow, also.

The creature from the black lagoon

I posted something to Facebook at the time, which I’ll share here as a summation of the situation and my feelings at the time:

You’ll see a lot less of me on Facebook unless I have something to report. I’m sure that’ll be a relief to everyone. Otherwise, the state of play is this:

As reported, I’m likely to feel worse before I feel better, but I’m ready for that. I’m on a sorts of painkillers now, including morphine and mouth cocaine.

I get told different things, but the most optimistic is that I should start feeling some improvement in about ten days – that’s Monday week. More generally, I’m told it will take about four weeks to get over the radiotherapy and another five weeks to recover from the chemo. That takes me up to about Christmas.

By then, the swelling should have receded, my hair should be growing again, and the other treatment symptoms gone. The return of my taste buds is an individual thing – anywhere between 2 weeks and three months. I’m praying for two weeks.

I’ve lost about 12 kilos and have little energy and no stamina. Most of my muscle has gone. It’ll take a while before I can restore my body to a healthy state, but a good diet will speed up healing.

I’ll still need some dental reconstruction – probably Jan/Feb. And I won’t have a test for three months. Until then, I’ve officially got cancer still, and the parties are off until I get the all-clear. That’s no certainty, but I’m very positive, as I think you must be.

Despite everything I’ve written here, I feel very strong, almost invigorated, and ready to take on the world.

Over the weekend I’ve felt progressively worse. To start with, it feels as if the swelling has become worst since finishing treatment. My eye is almost closed and I wake each morning with it sealed by sleep. It feels also as if some feeling is returning to my cheek, which is good news in the long term, but perhaps bad timing.

It means I’m feeling pain through my cheek and jaw. If I stroke my upper cheek, I can feel what seem like tendrils of sensation extending into the muscle.

My jaw and mouth feel closed up, almost blocked, on the right side of my face. On top of that, the mouth ulcers on my tongue and roof of my mouth have got worse. I’ve got an assortment of treatments and medications for this, but I’m wary of taking too much.

My nose is constantly blocked and often bleeding. I’m awash with the run-off from the cells destroyed through the treatment process. They clog my nasal passages and nostrils, they run into my mouth in a nasty, viscous liquid, and they make their way to my stomach.

My stomach is churning and nauseous, thanks to this toxic run-off. I feel sick from it constantly.

Perhaps the most disturbing is the feeling of weakness. I spent most of yesterday in bed, much of it just lying there like an invalid. I can’t get enough sleep. It worries me, though perhaps it’s normal. I fear it’s related to the lack of nutrition I’m taking in. My legs are very thin now; my torso much reduced.

The problem is that I’m too sick to eat and too busy being sick to get around to it. I have to force-feed myself in the moments available to me, though it’s a horrible experience. I’m doing fuck-all, but I wouldn’t be taking in more than 1600 calories most days.

I’m slightly better today. I’m out of bed and sitting on the couch after sitting outside earlier – it’s a lovely day. I hope to stay up most of the afternoon and can only hope for the time that it begins to turn, as it must – when the cells begin to regenerate rather than destroy when the mucus membrane begins to repair myself when the swelling begins to go down, and the ulcers start to heal.

Until then, I have to hang in there and eat. In retrospect, I may come to realise the most challenging thing about all this has been doing it solo – but I’ll expand on that another time.

Dreams of future days

I have one week left of treatment and am now starting to look at what comes beyond that. It’ll take a while to fully recover, but I hope to be in a reasonable shape come Christmas – the swelling all but gone, my hair re-growing and my taste buds fully returned – and able to eat anything once the final stitches in my mouth release. Through all this, I’m making a big assumption – that the cancer is gone. I don’t think I can do anything else.

With a week to go, I’m hanging in there. You adjust as you go along, though it’s no fun. Besides the swelling, my cheek is red with sunburn from radiation and skin peeling. My nose is perpetually blocked and often bleeding. My mouth and throat are periodically sore from ulcers. And I’m generally weary, and sometimes worse than that. The dehydration is under control now, but I’m consuming so few calories that I’ve become weak. But – just a week to go.

It will take a few weeks until I can hope to feel human again, though I hope there is a distinct and steady improvement once treatment has ended. Mostly I look forward to eating again, both for the sheer pleasure and to hasten the healing process. It’s probably not practical, but I look forward to exercising also. Though I’m much slimmed down, there’s no muscle or definition and a lot of softness that I hate.

I have greater goals than that, though, which is what I’ve started planning towards.

I had some notions in mind even before I had surgery. The shock of the news jolted me into reflection, and one of the things is that I realised that I had neglected the things that would make me happy. And so, at that time, I came up with the great goal of living in Europe for 3-6 months in a few years from now (hopefully with LSL to ease the passage).

I’ve very much got a European mindset and crave so much of the simple things that Europe offers. I could base myself in Paris initially, and perhaps Berlin later, and use them as bases to explore further afield – as well as to immerse myself in the culture.

That idea has broadened and matured since. It came to me about a fortnight ago that I had denied myself joy for several years now. Some of it was perfectly natural when I think about it – I’d come close to bankruptcy and had no money. But when I started to earn more money, I still held back. Was it fear? I don’t know.

This manifested itself in many ways. No holidays, for example – I reckon I’ve had three days ‘away’ in the last 6 years. On top of that, many of the things – once fine – had worn-out and fallen into a state of decrepitude since, and I didn’t do anything about it.

For example, the bed frame I bought about 23 years ago – and a quality bedframe it was – has been broken for about five years. Not a night goes by that a slat or two doesn’t fall out. I tried repairing it, to no avail. Likewise, the leather couch I spent good money on 14 years ago is now worn in patches and torn in others.

This state of mind is best epitomised by the fact that I left things packed in boxes for the entire tenure of my time at the previous place – which was what, five years?

I never committed to the place or my sense of belonging – there, or anywhere else.

It seems so clearly unhealthy now, but I never saw it before. So, of course, the solutions are obvious.

I will take holidays. I’ve already booked a week in Sydney in December to stay with a friend. We’ll visit the Blue Mountains for a few days while I’m there. After Christmas, I’ll go down to Wye River and stay with the Cheeses for as long as they’ll have me.

I don’t want crappy stuff around me anymore and have set myself the target to replace all the weary and broken things around me in the next two years. I want beautiful stuff I can feel good about. First is a new bed. Then a more practical dining table (I can’t wait to entertain again). Then, later next year perhaps, a new couch.

And I’ll unpack my things, particularly my books. They’re so much of who I am and to keep them boxed up all these years seems a travesty. That means I need to buy a bookcase, too. The thought of having my books available for easy browsing thrills me.

I’ve been holding back, and the goal now is to commit. That means I’ll also celebrate Christmas this year, though I don’t know how as yet. I always loved Christmas. It was always such a joyous occasion. Then my mum died. She was ever the driving force behind our celebrations, but her death brought disruption and controversy. It became a bitter reminder for me, but it’s time I got past that.

Then there’s work. I don’t know how or if I’ll return to the same job, but I’m pretty sure I don’t want to. By the time I return, it will be 6 months since I sat in the chair. Since they’ve engaged someone to backfill a part of the job, and the rest is being shared between a few. The project that was mine is now being executed by others. Most likely, I’ll return with it done.

Whatever it is, I intend to have some candid conversations with management. The failures of before seem clear to me now. All I want is to do work I enjoy, for which I’m fairly reimbursed part of an authentic, engaging culture. It was a distinct failure on at least two of those counts, and you could question the other. It’s not good enough.

There are things I can do outside of work, and the plan is to make my work less of a thing generally. I put it to my Facebook friends to get feedback on what they thought I could or should do. The big one was writing.

I haven’t written meaningfully since I got sick, but I hope it’s a part of my recovery. At that time, I was halfway through writing the second draft of my second novel. With luck, I can get it finished by early next year. With a lot more luck, maybe I could look to get both books published by this time next year.

I’d also like to earn a few dollars along the way doing it but didn’t know how. Then, out of the blue, as if the world was listening, I got an invitation from Quora to be one of their paid contributors. I’ve now signed up for that, and I plan to write 4-5 pieces a week for them when I feel up to it.

My other plans are smaller, though important. I’ll start to put weight on in about a month, but there’s a great opportunity to shape myself and be fit as I haven’t been for years. In counter-opposition to that is my craving for food and desire to cook. I’ve always looked after myself well, but being deprived of flavour for almost three months has really piqued the desire. I’ve been collecting recipes and watching cooking programs toward the day.

I don’t know what the future holds. There’s still a distinct possibility that even after surgery and treatment that some cancer remains. Or I relapse. I won’t be safe for five years, but the danger could come well before then. I just have to plan to a return to some kind of normality, and if it’s otherwise, deal with it as it arises.

State of play: week 5

Let’s start with the good news.

I met with one of the plastic surgeons, then my oncologist, on Monday. The plastic surgeon was so pleased with my progress that I had to pose for some happy snaps to show off to her colleagues. The oncologist was happy, too, reporting that I was better than expected – if only she knew.

In fact, I’d been crook for days after chemo on the Thursday before. This was to be expected, but the ramifications went beyond full-body nausea and fatigue, I experienced.

Because of the nausea and the shocking taste in my mouth, I’d consumed the bare minimum over the previous weekend. By Monday, I was unsteady on my feet.

I had the chance to tell the doctor this, and after feeling momentarily disorientated in her office, had the perfect excuse. Are you alright? She asked. Without batting an eyelid, I gave the instinctive response. Instead of admitting to a stumble, I told her, ‘I thought I’d dropped something on the floor.’

Why do we do this? Is it pride? Some. Habit? Yes, a lot. Fear? Perhaps some. It’s a bitter pill to swallow when you get so sick you feel as if you’ve lost control. For someone who would habitually take stairs two at a time and who believed many personal obstacles could be overcome by force of will, it comes very hard. You realise how little control you have and that much of what you have taken for granted hangs by a thread.

I keep remembering how I was, how I was a ‘big, strong man,’ as if that meant something. How can you lose that so completely? I’m frail now. Being big or strong counts for nothing. And I remember what they say, the bigger you are, the harder you fall. To feel so vulnerable and helpless is a revelation.

I got worse on Tuesday and Wednesday. I was near collapse many times, though I never lost it altogether. It would hit me when I stood – my blood pressure would collapse: postural blood pressure. At its worse, your vision clouds, and there seems thunder in your hearing. You hold on tight to anything close by, though there were times I’d find a wall to slide down in an undignified fashion. On both days and Thursday as well, I needed a wheelchair to get around safely.

The main problem was that I was dehydrated. I was feeling slightly improved on Thursday, but they decided they needed to do something about it. So I was wheeled upstairs and put to bed in a room without windows, and they pumped 2.5 litres of saline into me. Since then, I’ve tried to maintain the levels, and the unsteadiness has passed.

One of the big problems, other than nausea, is the taste in my mouth. Chemo makes things taste metallic, on top of which I get the constant backwash of cells destroyed by the chemo and radiotherapy filling my nose and mouth. It’s a thick, viscous fluid that tastes salty, smoky and bitter. It coats my tongue and mouth so that I try to spit it out. It makes everything taste awful.

It blocks my nose, too. I’m clagged up almost 24/7, and the brief occasions I’m not, I’m subject to nose bleeds. The mucous membranes are being killed off by the treatment – that’s the idea of it – with the idea it will kill the cancer, too. The cells will regenerate; the cancer – fingers crossed – shouldn’t.

It’s a brutal method, but all we’ve got. I’m in the meat of the treatment now. This is when it’s really happening. They said it would be tough from here. They were right.

State of play: week 4

Spending a lot of time in bed since getting my second dose of chemo on Thursday.

My experience of it is that it’s like an all of body nausea. You just want to lay there without twitching a muscle. I’m on the heaviest dose, so it makes some sense, though there was some discussion on Thursday about changing the type of chemo medicine because of the ringing in my ears. That didn’t happen.

I had to go in early yesterday for my radiotherapy session, and it was a feat of endurance. I came home and went to bed and had a broken sleep until mid-afternoon.

I slept well again last night – another 10 hours – and have been lying quietly in bed since I woke. It’s too early to say, but I may be marginally better today – the extremes are receding. I’ll be back to bed soon anyway.

I’ve started losing my hair, mostly from radiotherapy. My cheek was rosy with sunburn for a while, though it seems to have settled down. I’m using a cream on it. A large patch of facial hair has fallen out, including half of my mo. I’ll need to shave sometime. I’m starting to notice hairs on my pillow, too.

I had a couple of check-ups on Friday, once in the cancer ward and the other down in radiotherapy. In the first place, I had my blood pressure checked, and it was found to be pretty low – 88/49. That explains the dizzy spells and isn’t entirely surprising given the weight I’ve lost and the fact I’ve been on tablets for high blood pressure. No longer.

In radiotherapy, a quick examination revealed I had contracted thrush, which accounted for the nasty taste in my mouth. I’ve been given some lozenges to clear it up, hoping that will make eating and drinking a little easier.

I should mention the chemo session. As you might imagine, it’s quiet there but for the odd beeping off a machine. There are cubicles arrayed around the floor with reclining chairs in which people like me take their dose of chemo medicine. It’s like a modern opium den. I saw one man working on a laptop, but most seemed to lie quietly with their seat reclined, half asleep.

With one arm out of commission, it’s no good bringing a book to read. I had thought about taking a nap but was put off. As before, I listened to music and to an audiobook story by H.G. Welles. As before, it took about four hours to pump the stuff into me – magnesium, then the chemo drug, then saline.

As of now, there are 15 treatment days to go. I’m over halfway. It should be okay, except the chemo makes it hard. That’ll get better in days, but I won’t eat much through then and I’ll rest a lot. You just have to ride it out. Once it clears, I’ll manage it better.

As you would imagine, I’m losing weight steadily, though not precipitately. I think it’s about now that they fear it’ll start to come off more quickly. They might be right. My stomach is entirely flat, and my hips slim. There’s still a bit of subcutaneous fat to go, and I reckon I can lose another few kilos (4-5) and remain at a safe weight.

I’ve also lost the muscle mass I’d accumulated over a lifetime of activity. I’ve still got a decent-sized chest and shoulders, but it’s structural rather than muscular. When all this settles down, it’s funny to think I might be at my fittest weight since my twenties. It’s good to be slim, but there’ll be a lot to make up.

I might look it, but there’s not much fitness in me. As is, I haven’t got the wind to walk more than a couple of hundred metres at a time, if that. And putting the muscle back on will add weight. That’s still a way away, a time to look forward to because I’ll be eating properly again.

In the meantime, it’s three weeks in total treatment, then another two weeks probably to allow the cells in my face to regenerate.

Same old story. Take it as it comes.

My day

It’s probably not a surprise, but I’m spending a lot more time in bed these days. It’s more from the accumulation of symptoms than from one particular symptom. Combined, they wear you down. I manage to get by okay, but if I find time for proper rest at any time, I quickly succumb to it.

I’m sleeping about 10 hours a night. Before I got cancer, I was sleeping about 7.5 hours nightly. I look forward to sleep as it takes me away from everything else. I wake up quite regularly through the night, but it’s always restful.

When I wake in the morning, I get a supplement to drink, quickly check the news, and then get ready for the day. My radiotherapy appointments are always early, and the ambo transport arrives around 8am.

I’ve had 16 days of going in and out and probably had a dozen different drivers. Most of them are pretty chatty. I go along with it, but I’m just as happy to travel silently. I’m tired, weakened, and occasionally dealing with more troubling issues like light-headedness. Plus, it tires me out to talk too much. But I play along if they want to talk – they’re all friendly, as you would expect – because I’m grateful.

I know the route so well by now that I’m bored with it, though occasionally, a driver will change it slightly, tempting me to let him know that if he goes this way instead, we’ll get there sooner. I never do.

I check in at the hospital and greet the girls in reception, who know me by the first name now. I go down the back to the waiting room, collecting my ‘mask’ from the cupboard it’s kept in. Generally, I’m called in within five minutes. The routine then is simple. I greet the radiologists, who I’ve got to know. I’ll confirm my ID while I remove my mask, glasses, and clothing above my waist.

I lay down on the ‘bed’. They’ll stuff both nostrils with fabric, and I’ll fit in the mouthpiece. Then they’ll fix the mask in position – so tight I can feel it press against my eyelids.

The actual procedure takes about 6-7 minutes, as I’ve described previously. I let my mind drift in this period. I’ve got used to it by now, and before you know, they’re back removing the mask and the fabric from my nose. I’m dressed and out of there – see you tomorrow!

The ambo collects me from reception, and we make the trip home. I arrive back somewhere between 10.15 and 10.45.

Quite often, I’ll climb into bed when I get back. I’ll read or browse my iPad, but it doesn’t take long to get pretty drowsy. I’ll lay down and let it take me. On average, I’ll sleep for a couple of hours.

I’ll get up after and have lunch – generally nothing much more than a yoghurt or sustagen. Nothing tastes much good.

If any, I’ll catch up on my email and will probably sit down to watch something on TV. More recently, I’ve gone back to bed to do this. I watch The Twilight Zone and other cable TV programs. Sometimes I’ll sit on the couch and watch The Cook Up – strange how I’m drawn to cooking programs now that I can’t eat. I’m also on the last series of Breaking Bad.

(Yesterday, I actually attended a work meeting on Zoom).

Somewhere in the afternoon, I’ll have a hot bath because I find it soothes me. In the meantime, the neighbour across the road will take Rigby for a walk.

In the evening, I’ll have a light dinner, watch the news, etc., and am in bed somewhere around 8-8.30. I’ll watch an hour of TV there, then read for a little while. Lights out generally around 9.30, and quickly to sleep.

Then I do it all again. Tomorrow will be a bit different as I have my chemo session. Not something to look forward to, but needs must.

Out of sight…

Let me tell you about work. I’d be interested in your opinion.

I haven’t worked a full day since early July when I was diagnosed with cancer, though I worked a bunch of half days through the month. I haven’t received any pay from them since early in August when my sick leave ran out. I’ve been on unpaid leave since and have had no income pending insurance finally coming through later this month (other than a Centrelink benefit recently paid).

When the news of my cancer broke, I got calls and emails from the head of the Marketing department and the manager in charge of the Digital arm of that, where I sit.

They were sympathetic and understanding, made the right noises, and even sent me a small care package.

The last time I heard from either one of them was July 7, the Digital manager, who said he’d make a low-key announcement to the team advising them that I would be away for a while with an unspecified illness. I was fine with that – these things need to be managed – but it never happened.

Much to my annoyance, I occasionally am contacted by people unaware of my condition, regardless of the out-of-office on my account. I either fob them off or find myself telling them of the situation. It pisses me to repeat this unsavoury news again and again when it should have been properly handled.

I find it a little ironic that it pisses me off. I’ve always been one to proclaim my independence and sense of privacy. I kept worlds separate, letting only select people enter one from the other. And here I am complaining that the most intimate details of my life haven’t been shared (to be fair, all they need say is that H is crook, he’ll be off work for a while, we’ll keep you updated, leave him alone in the meantime…).

There’s very much a practical consideration in this, though. From a work perspective, don’t people need to know I’m unavailable? And I hate that the burden of sharing details has devolved to me in the absence of an announcement. I have enough on my plate. It feels unprofessional and vaguely disrespectful.

Quite aside from that, it’s been over 3 months since any management has been in contact with me. After that first flurry, no checking in, no wishing me luck heading into surgery, no checking how I went coming out of it, no cards, no flowers, no bowl of fruit, no nothing. I’m hardly surprised the dept head hasn’t been in contact, but I’d speak to the Digital head each day in the office, and even WFH, we’d catch up every week one way or another. But now, zilch. Out of sight, out of mind.

Am I wrong to think this unusual?

Do they have any idea of how I’m going? How could they?

I’m in contact with random people in the office I consider friends and sometimes help out my direct colleagues. My team manager checks in with me occasionally on a personal basis, but the last time was a month ago when I shared two lines with him.

It’s no secret that I’m disenchanted with my work. I was mighty pissed off when the pay-rise came through much less than mooted and without a word of explanation. My faith was wavering before then, but after, I felt betrayed. I realised that our values were misaligned. I value authenticity over pragmatism and believe it pays. And how can there be trust when actions don’t measure to words?

Then there’s this, and it’s easy to think they’ve practically forgotten me. Am I unreasonable?

Ideally, I wouldn’t return to work at the same place, though it’s not straightforward. I’d love to get a better-paid job at a more agreeable organisation, but it would have to be good. I’m due long-service leave in a bit over a year, and I’ve factored it into my future plans. It would be hard to sacrifice it.

I know I can’t really return to the role I had before. The world has moved too far, both for me and the business. I’m out of the loop, and it would take weeks to get up to speed again for about 50% of my role. I’ve no interest in it anyway. It seems terrible trivial in light of everything that’s happened to me in the last few months. That part has been backfilled – let them keep it.

That’s where the opportunity might be. I intend to confront the Digital manager on my return about what happened to my pay rise and promotion. The compromise might be an evolved role more to my liking and with a matching salary. That’d be enough to keep me until my long-service leave matures.

All of this is still a few months down the track – probably around January. Still.