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.

A feel-good story

I remember a game I attended at Windy Hill in 1985 or 1986 when Essendon already had a hundred-point lead at halftime against North Melbourne. Such utter dominance is rare in any sport, but it happens (Essendon vs GCS, Geelong vs Richmond & Melbourne). Last night I reckon I witnessed the biggest capitulation of all time, in the AFL grand final of all games.

Halfway through the third quarter, the Bulldogs led Melbourne by 19 points and looked the more likely winner. About 45 minutes later, the final siren rang, signalling a thumping premiership win by the Demons to the tune of 74 points.

Once headed, the Bulldogs didn’t give a yelp. Melbourne scored 16 out of 17 goals from the midpoint of the third quarter, outscoring Footscray by 93 points. Melbourne was phenomenally good, but the Bulldogs seemed to give up. Pathetic.

Like much of Australia, I was hoping for a Dees win and expected it too. They’ve been the best team all year and play a brand of footy that’s tough and exciting. They blitzed the final series, and you’d have to think they’ll be a contender for years to come. They’re a young team.

Up until Melbourne took control, it had been a fierce and entertaining contest. The Dees jumped out, the Bulldogs reeled them in, then took the lead. Footscray was playing the more composed footy at that stage, and their champion, the Bont, was BOG.

At half time I commented to a friend that Melbourne had erred by not matching up on the Bont when he went forward and that Caleb Daniel had been allowed to do what he wanted. In the second half, Caleb went from 26 possessions and one of the best-on to an ineffective, occasionally poor player. And the Bont was swamped by his opponents, none more so than Petracca.

When I did my footy preview in the pre-season, I tipped the Bulldogs would play finals, and Melbourne was my dark horse. I’m happy for them to justify that belief. They’re well-coached and have a plethora of young, powerful, and very talented footballers. And, in Max Gawn, they have the best leader – as well as ruckman – in the comp.

I stayed up until 11.30 to watch the celebrations. That’s a recent world record for me. Not every grand final ends this way, but this time it was a feel-good story.

Next year, though, can’t wait to see it back at the G and on a Saturday afternoon. This season felt much less mickey mouse than last, but it’s not completely right until things are back to normal. Perth did a great job, but it’s not the same.

I have one, last parochial gripe. For the biggest match of the year, Channel 7 lockout other competitors, and we’re stuck with a telecast in SD, the same tired hacks as commentators, and, outside a few moments here and there, very little imagination or insight in the presentation.

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.

Starting today

Radiotherapy starts for me today. The prevailing sense is curiosity. I wonder what it will feel like and wonder how I’ll manage it.

I’m not particularly claustrophobic, but that’s one thing the doctors warned of. I don’t expect it to be a problem, but I can understand why it might be. You’re fixed in place, unable to move. This is important obviously, as the radiation has to be precisely directed. I’ll be wearing a strange mask, moulded close to my face and shoulders. It’s largely open, but it is intrusive. On top of that, I’ll be fitted with a mouthguard, and potentially, nose plugs. Then I have to lie still while I am conveyed into a tube, where I’ll be treated for about 15 mins.

I got a call from the oncologist a couple of days ago. As the cancer reached near to my eye, they’ll be sending radiation quite close to the optic nerve. There was a small chance, she said, of this leading to a deterioration in vision of up to 5% over a period. She hastened to add that no one she had yet treated had experienced this. I agreed, of course – what else am I going to do?

I’m keen to get started, even though I don’t think I’m physically up to it yet. It seems that progress has stalled over the last fortnight. I don’t feel any better, and my mobility has not come on as I expected. In ways, I’m worse. The pain is considerably more than before, and I’m back on painkillers 24/7. There are two types of pain – the aches and pain related to the swelling, which extends to my eye and ear and back of my head, and what I call dental pain, resulting from my mouth being all stitched up. If a nurse asked me now where my pain is at, I’d tell them 6 or 7.

Pain is a part of the healing process, so I’m not too concerned about it aside from the physical distress. I don’t look forward to having extra pain on top of it, though.

There’s clearly still a lot happening in my body. A couple of nights, I’ve woken drenched in sweat. One morning I had blood trickle from my right nostril. I’m required to clear out my nose a few times a day, and lately, there’s been trickles of blood after. I’m expelling clots of blood and the occasional thread – a dissolving stitch. I presume once more that this is a part of the cleaning out process and normal.

I’ve taken to resting more, which isn’t hard. The last few days, I haven’t got out of bed until 11. I’ve had a bath then, before dressing for the day. I’m conscious of how many calories I’ve been burning up – up to 5000 on the back of 2000 paces (about 5 times greater than my healthy rate) – and so I’m moving less and eating even more. I’d go to sleep before with a bit of a belly and wake to it being as flat as a pancake. That’s improved in recent days, and I have to build that store further in anticipation of the hard times ahead.

I guess this is all a part of getting well again, but I wish I knew more. Ideally, I’d prefer to be in a better state before commencing on a program of radiation and chemo. But I’m also keen to get this started and hopefully eradicate the remnants of cancer in my body. The best chance comes with an early start (I wonder if some of the pain I feel might not be cancer-related). In any case, the sooner I start, the sooner I finish.

The good from the bad

I’ve had quite a few visitors over the last few days, all of them bearing gifts of groceries and goodies. I’ve come to realise that when you’re perceived as being helpless, others want to help. I was resistant at first, as I always am when it comes to charity and favours, until I realised two things: I needed their help, and by allowing it, I was doing them a favour.

I’ve got plenty of good quality food in the fridge at the moment and open invitations to ask for more as I need it. I actually intend to try cooking something myself this week – mum’s recipe for potato and leek soup.

I appreciate the goodies, but what I really cherish is the human contact. I feel like I’m in home detention here, more or less. Except to go to the hospital, I don’t get out, and I’m still a week or two away from trusting myself to take a walk to the shops. So any visit interrupts the monotony of this life and takes hours off the clock I’d otherwise have to find a way to fill. And they’re a reminder that friends and social interaction – people – are at the centre of a healthy and happy life.

Naturally, they’re all very curious about my time in hospital and express how well I’m looking without exception. That’s purely in relative terms as I still look pretty ordinary, but as they were expecting the heinous aftermath of facial surgery, pretty understandable. It’s true, other than the swelling – which will pass – you would hardly know that my face was laid open. There’s a subtle scar that runs alongside my nose before branching into an L shape. You have to look hard to see it, and with my glasses on, it’s virtually invisible.

I’m curious to see what I look like once the scarring recedes and I’m back to normal. It won’t be near as bad as I feared, but I won’t be as good as I was before either is my bet. I suspect something will appear just a little off.

In one conversation, it was speculated how this had happened to me. I explained that it was bad luck, especially given that I possessed none of the usual indicators for such a cancer. The question was larger than that, though, more existential: why me?

Of course, it’s natural to wonder that yourself. I deal with it by admitting that there’s a statistical probability of X for getting any cancer; in this case, the X landed on me. Basically, someone has to get it, and this time it was me.

But when I couple it with the hardship I’ve had to deal with previously – the near bankruptcy, homelessness, the fracture in my family, and so on, it appears unreasonable, if not unfair (as if fair came into it). This was the point made by the questioner.

I’ve been very careful not to feel sorry for myself. One of the things I despise most is the sense of victimhood some people cling to. I certainly don’t want to be a martyr. And, in the circumstances I find myself, self-pity would be ruinous.

I always remember many years ago reading about chance and probability with particular reference to playing cards. A particular phrase stood out to me that I’ve remembered ever since: the cards have no memory. In other words, it doesn’t matter what came before because it bears no relation to what comes next. Of course, life isn’t entirely a chance event, and there are triggers and consequences, but in many regards, probability plays no part.

There’s no relationship between down at heel and cancer unless you choose to believe that the stress of one leads to the other. I just happen to think it’s bad luck.

It’s human nature, however, to search for meaning – and perhaps, to ferret out a positive. The oft-repeated phrase that everything happens for a reason bears that out. I’m not a believer in that, for the reasons I’ve described above – but then, what would be the meaning – the purpose – if such a thing existed?

I can only think of one. I’m suffering now as I suffered before, but the suffering is of a much different nature. When it comes to suffering, I’m coming towards a well-rounded experience. Not much fun for me, but what do I gain from it?

The only thing I can think of is by way of a kind of wisdom and depth of understanding. Because I experience more, I feel more and, ultimately, acquire insight forbidden to me before. I hope that’s true, but feel it must be. I’m not rushing to any resolutions yet, but reckon I have a better idea than before.

All of this should benefit my writing as if it was the point of this suffering. I’m incapable of writing creatively at the moment – I don’t have the concentration or inspiration – but it will come back, and when it does, I’ll have so much more to draw upon.

That’s it, though, and given a choice, I’d have passed on the suffering and wisdom to live as I did before.

Let me sleep

Generally, I wake up just before 7am, and if I don’t, Rigby will remind me. I’ll listen to the news on the radio and then get up, feed Rigby and sit down to take the medication prescribed to me by the hospital – which now includes a couple of panadol. Then I’ll go back to bed with a dairy drink.

If I’m not going to the hospital, the day is pretty dull – a combination of reading, audiobooks, music, and TV. Because I’m short of energy, I’m generally in bed by 9pm, though there’ve been a few nights I’ve been up later watching the footy or a movie. By 10pm, the light is out.

Sleep is coming harder to me now. The receding numbness means more tender spots and in strategic areas – my hip and my face. It’s tough to get comfortable, and the quality of my sleep has declined in the last week.

I finally got to sleep last night at around 11pm when my phone chirped, waking me up again. It was a mate sending a meaningless message, and at that moment, I was furious at his utter thoughtlessness. I didn’t get to sleep until after midnight and slept poorly. All the signs this morning were negative, and I considered staying in bed all day to claw back some of the resources I lost.

There’s no doubt that as each day passes, the pain gets a little worse. I’m just about on permanent pain killers now, and it will only worsen once my treatment begins. It’s a fact of life, but I’m certain I will need something stronger than panadol to manage it.

In ways, it’s all about timing. If the treatment was starting a couple of weeks later, I’d be more confident believing that I had healed sufficiently to avoid the double whammy. Though I’m hurting currently, most of the pain is indicative of the healing process. In time – probably 3-4 weeks – I reckon most of the healing will have completed and the pain, presumably, much diminished.

I don’t have that luxury and know that the treatment will aggravate and slow the healing in my head. I’m heading towards a world of pain there. My hip and groin should continue to heal undisturbed, I presume, though as I weaken, that may be delayed also.

It seems unfair that I should have to deal with two compounding sets of pain. Hopefully, the healing is quicker than I forecast.

I’m certainly walking better and further, though I begin to feel it in my hip if I walk too far. I’ve progressed from a shuffle to a limp, but when I’m fatigued, the limp becomes pronounced.

I’m probably feeling some anxiety about what’s to come, but expect that will settle once I start. And I presume it will take a week or two before I begin feeling the combined effects of radiotherapy and chemotherapy.

I know that from here on in, I must maximise my strength and get quality rest when I can. You never know, it might not be so bad.