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.

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.

State of play: week 3

It’s Saturday, and I’ve spent practically the whole morning dozing in bed. It was easy and probably quite pleasant, and I could probably spend the afternoon doing the same. It would be nice in a way. You close your eyes, and you’re out of it. It goes to show where I’m at when I can do it so easily, though I’m not sure if it’s a great idea.

I don’t know if there is some medical basis or some WASP-ish ethic, but it doesn’t sit right with me to be so inactive. It feels too passive, and I can’t help but believe that getting up and doing things is much healthier for both body and mind.

It’s been a funny sort of week. At one stage, I was feeling pretty awful and had real concerns about how I would manage with 4 weeks of treatment still to come. At that point, the first mouth ulcers had appeared on the back half of my tongue, and it was becoming increasingly painful to swallow. On top of that, the taste in my mouth and when I’m eating is just this side of intolerable. It got drastically worse last week, and I think part of it is leakage from the pack in my cheek. It coats my tongue with a gooey film so that I can taste it even when I’m not eating anything.

None of that has changed in the days since, but I sense I’ve picked up in other parts of my body. For the first time since getting out of hospital, I went for a walk to the shops. My hip is still imperfect but clearly improved, and I sense that the healing resources that were locked away working on my other wounds have become free to replenish me elsewhere. I’m losing weight but, for the moment, getting stronger.

I still feel pretty shit, and odds on it will get a lot worse than this. I’m ready for another week of it, though, even if it includes chemo, as next week does. I may be telling a different story next week.

In a couple of hours, I’m getting my hair cut. I ran a poll on Facebook to determine what sort of haircut I should get. There was no clear outcome, and what I’ve decided is to get a mullet this week and have it cut down to a mohawk next week. In 6-8 weeks, hopefully, I can fix the damage and get a relatively normal cut once I’m on the improve.

This is all a bit of fun in the meantime. Cheeseboy will be doing the cutting, so I could end up with anything. He’s threatening to use the whipper-snipper on me.

There’s something else I haven’t made mention of. I’ve been on unpaid leave the last couple of months, and things had become tight. My rent was due last Monday, and I was well short of it. So Mrs. Cheeseboy did a ring around and managed to secure almost a grand in donations from mutual friends. I was blown away – embarrassed as well as humbled.

I still feel a bit funny about it, but know that’s my problem. I’m very grateful and know how lucky I am.

In about a month, the insurance money starts coming through. Until then, I just need to scrape through.

Chairman H

Yesterday I had the weekly review with the oncologist. She asked at one point if I started feeling facial pain? I said I hadn’t. Well, I am now.

I had hoped a three-day break from any therapy would give me a period of relative grace, but that’s not to be. I didn’t end up feeling any better over the weekend, but nor did I end up feeling any worse. Now, a couple of sessions of radiotherapy into the week, I feel generally blech. How do I describe that? Greatly run down, not exactly nauseous, but without any appetite or ambition for food and the aforementioned pain.

The pain is manageable, but only a third of the way through therapy; it’s what it foreshadows that has me worried.

I’ve got the beginnings of some ulcers on my tongue. My cheek is raw in patches. And it’s painful to swallow.

To a degree, I think I’m lucky in that large swathes of my face remain numb from surgery. Without that, I figure I’d be feeling it a lot more.

I also spoke to her about my numb quad muscle, and she agrees there’s something amiss. Either they’ve nicked a nerve in the surgery, or the bruising is so deep that it’s still to heal. The latter is by far the preferable possibility as I don’t know if it can be fixed otherwise.

Today has been like many days to come, I expect. I spent a couple of hours in bed when I got home, dozing. I’ve done my best to eat and drink. I feel listless and weak. I’ll go back to bed in a minute. Tomorrow I’ll do it again.

I’m sure there are those curious as to how I look. Like I said, I’m no oil painting currently, but I have to accept that. I look in the mirror, and I’m reminded of Chairman Mao, which is very different. Gone are the sharp cheekbones and hard jawline. My cheeks are puffy and rounded, with one looking like I have a ping pong ball stuffed in it – though it has got smaller. The expression is gormless because half my face is immobile, and my mouth is mostly agape. My nose is slightly off-kilter.

As I would joke with the nurses in the hospital, I’m not about to become a contestant on Bachelor of the Year. I guess that can wait.