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.

State of play – second week

I’ve copied out below the latest update I’ve posted to Facebook. I was reminded of the need to reassure people that just because I have cancer, it doesn’t make me delicate china. I understand how difficult knowing how to act or what to say, but the whole point of this is to keep these things as low-key as possible.

AS always, there are things that I don’t release to Facebook. I feel it’s my duty to keep it as positive as possible, but it’s been a tough week.

I’m not sure if it’s because of the chemo, or a double-dose of radiation on Tuesday, or something else, but I’ve felt pretty fucked this week – much more so than at any other time. My main concern is how unstable I’ve felt on my feet. Virtually at any moment when upright I thought I might topple over at any moment. I’ve been dizzy and light-headed and, at times, so disoriented that I didn’t know where I was. It’s a very disturbing sensation.

They took me for an ECG on Wednesday to check it out, but I came up fine. On other indicators, I was fine also, except that my heart rate would plunge into the low forties.

I suspect it is ‘something else’ and spoke to my GP yesterday about it. I think it’s related to the hip and groin surgery I had. It hasn’t healed as I thought and my right quad remains numb, which surely isn’t right. He thinks it might be a nuerological issue.

I found myself greatly annoyed by it last night. Here I am having set myself to do battle with the cancer and the therapy needed to defeat it, and I was ready. It would be tough but I’d get through it. To then have something unexpected jump out to make things even harder seemed unconscionable. It’s hard enough as is.

I’m okay now. It may not be anything. I’ll speak to the oncologist on Monday. For now, I have three days free from treatment and it may do the trick.

From Facebook:

When I sat down a couple of months ago and revealed, I had cancer, I did so because I knew it was not something I could keep quiet and because I probably figured I’d need some support. At the time, I made it clear I didn’t want sympathy or pity. As much as possible, I wanted to keep things low-key and ‘normal’. I didn’t want to be treated differently because I had cancer and hoped that people would continue to deal with me in the same way. It’s something I have, but not who I am.

A couple of months on, and I’m surprised where this has got to – and gratified, in a way. My attitude hasn’t changed, though. I may be sick, but I’m far from a shrinking violet. Whether you say anything or nothing is not my business, but please don’t feel inhibited or embarrassed – I know it’s hard – and if that means having a crack at me, have a crack at me! Inside, I’m still the same man.

Over time, I’ve come to understand my motivations for these regular posts.

The most obvious is that I feel pretty cocooned from the world. I can make it to and from the letterbox, but not much further (I’m as tottery as a three-legged chair). The only time I really get out is to go to the hospital, which is an artificial environment anyway – clinical and full of sick people. Not really my scene, except that now it is.

I miss company and just the sound of people. I feel like I’m in a jar on a high shelf, so anything I can do to break down the barriers is of worth. My mind is still active, if not my body, and this is one of my few open channels.

There’s an act of defiance in it, too. I’ve had hard times before, and I’m strong and resilient and pretty stubborn. When you’re like me, you tend to personalise your opponent. You want to know what you’re facing up to and give it the finger. Mentality plays a big part in all this, I think, and if I can personalise cancer as some kind of evil gorilla wanting to rip my arms off, I’m automatically up for the fight. I haven’t got much, but I can turn it into a bit of a light-hearted game, taunting the gorilla with my nonchalance. I know I have him beat. I figure he knows it, too.

Lastly, I feel some obligation for all of you who have supported and encouraged me throughout this journey. I’ve been blown away by the good vibes and help offered me throughout this time. I can’t express how grateful I am. I’ve learnt a lot through this time, about myself, and others. I can’t offer up anything profound, but if you’ve bought a ticket to this ride, I feel I have to give you the content to make it worthwhile.

Feedback is always welcome, as is no feedback at all. No obligations; I’ll just put it out there for you to take or leave.

Necessary pain

I’m in bed, where I reckon I’ll be spending much of the next 6-8 weeks. I’m better than I was, but I’m not in a good way.

I wrote the other day how the chemo had knocked me around. I saw my oncologist yesterday, and she revealed it was the most intense of chemo programs they have and the most effective.

The worst effects of it have diminished some since Saturday, though not gone away. I’m still nauseous, but not so much. Some taste has returned. Common symptoms of chemo are either diarrhoea or constipation – I have the latter. And I’m dreadfully fatigued.

Overall, I’m feeling better than Saturday, but not by much. I’d be better but for the radiotherapy, which has blown up the whole right of my face as much as when I came out of surgery. I’m puffy and numb, and I have little control of voice or eating. I feel lopsided, like a Picasso painting.

If anything, this will get worse even as I recover from chemo. I had one session this morning and another this afternoon to make up for the public holiday on Friday.

I’m left with little energy or desire. Even sitting up to watch TV tires me. Doing this tires me no end. I lay in bed propped up, half the time just lying there. I fade quickly, too if I talk too much, but I find myself craving company.

What do they say? Misery craves company? I don’t need or want someone to talk to necessarily, just the sense of human company. Someone in the house doing their thing while I wallow in my bedroom. I don’t feel unsafe, as I did occasionally in the weeks past, but I feel an increasing need for support with the little things. I manage, but it’s becoming increasingly more difficult, and things are falling by the wayside.

I have a friend who is preparing a fundraiser for me. It’s necessary because I’ve had no income since the start of August, and the insurance doesn’t cut in until November – hopefully. I have rent in the meantime, as well as the other usual expenses.

I suppose it sounds rather bleak. It probably is. My attitude is that there’s a finish line, and I just need to put my head down and keep ploughing forward. This is the necessary pain.

State of play – first week

First week of therapy completed – three days of it anyway. There was some trepidation going into it, but now I know what to expect. Radiotherapy I’ve got used to quickly. I’m in and out in 10-15 minutes, and there’s no great discomfort. I’m sure it will get harder as therapy progresses.

I’m a bit over the number of jabs and injections I’ve had in the last couple of months, but I turned up on Friday for my first chemo session. Not much to it, really. Got hooked up to a drip and sat there for 4 hours looking out the window and listening to music.

Thursday overnight, more stitches were released in my mouth, which allowed me to open up my mouth by another half inch. On Friday, between sessions, I was bold enough to buy a couple of potato cakes from the hospital kiosk and munched on them in the courtyard. After being restricted to purees and soups and bland food generally, they came as a gastronomic revelation.

That night my lockdown buddy visited and bought some take-away. I had some chips and chicken strips. Great. I slept only two hours Friday night, probably because of the steroids I’d been given. I slept late and woke up to heavy nausea. I felt leaden and sour and devoid of energy. I had zero appetite, but my taste buds were up shit creek anyway. Everything I ate or drank tasted vile and bitter. So, is this is how it’s going to be from here on in, I wondered? I’d been warned about this. The day after, I don’t feel half as bad. It feels as if I was in a trance yesterday. I’m not even sure what I did to fill the day.

I took a sleeping pill last night and lights out at 8pm. After that, I slept solidly until 7am. This morning, more energy, and though I’m off my food still, the taste in my mouth is much less bitter. And the nausea is in the background. Hopefully, it’s a trend that continues – the chemo will be out of my system in a week. But, you have to expect it will continue to get worse as I go along – that’s the playbook for this.

That’s where I’m at now. Dealing with it. As you will have seen, I’m counting down the days and trying to make it fun. Cancer is a shit sandwich, but you’ve got to take what you can along the way. One day this will be over, and life will be back to normal. That’s the big picture – just need to keep turning up until that happens.

The gimp

So, I’ve now had my first two radiotherapy sessions – yesterday at 3pm and today at 8.40am.

Not much to it, really. I’m in and out within 15 minutes, and half of that is the setup.

So far, the hardest part of it is the mask, which is so form-fitting that I wonder if I could open my eyes inside it. It fixes you in place and contours to every curve on your face, to the degree that might be claustrophobic if I had to wear it too long. On top of that, my nose is plugged, and I wear a mouthpiece with a narrow breathing tube in the middle of it.

It feels like I’m wearing a gimp mask, more or less, complete with a mouthpiece. But, it’s okay, as the actual treatment lasts no more than 6-7 minutes.

It’s a curious experience laying with this contraption on your head as the radiotherapy thingy does its work. There’s a lot of whirring, and through my eyelids, there’s flashing lights discernible, blue and white. I don’t actually feel anything, not yet anyway – that will come. There will be a cumulative effect. Over time, I’ll develop a sunburn in the area I’m targeting, and the patch of beard there will likely fall out. And the mouth ulcers.

I’m told I’ll start to feel something after about two weeks, though some feel a difference after just a week. The longer, the better as far as I’m concerned.

Tomorrow I start on chemotherapy. That’s from 9.30 for four hours, a break, and then my radiotherapy session.

From Monday I’ll be taken to and from the hospital by ambulance transport. Yesterday Cheeseboy chauffeured me. We detoured to a chemist and click and collect at Bunnings on the way back, and it was good to be out. This morning he dropped me off, and another friend picked me up. It’s a lovely sunny day, and on the way back, we stopped for takeaway coffee from a cafe in Elwood. These are the small pleasures I look forward to these days. Enjoy them while I can.