When I was in hospital I would post updates to Facebook on the basis that it was easier to explain once to a lot of people rather than tell the same story again and again individually. Surprisingly, it became therapeutic for me. As always, writing was a way to draw sense from an experience and to delve more deeply into the experience. And, locked up in hospital and feeling separate from the world, these posts became a bridge to the world I had left behind. In a way, the writing of these and the interactions that followed, re-connected me. I needed it.
Rather than recreate it, I’ve copied the Facebook posts to here, in chronological order:
10 August: Tomorrow’s the big day. 6.45am I’ll be in hospital. I’m okay but feel some trepidation. Normal, I think. It’s the mystery to come, the unknowns, that wrong foot me. And the violence of it. Come Wednesday I’ll have at least four new scars, but I’ll also be absent the thing that would otherwise kill me.
This time tomorrow I’ll be prone and insensible while doctors I’ve met only briefly will be doing their thing. Strange to think the man wheeled out of the theatre will be different to the man wheeled in. I’m ready for it. I want the pain to be gone, and though there will be pain after, and a long road, it will be the right sort of pain, the pain of recovery, and I’m up for the journey.
I’m not one for hyperbole or platitudes or anything too rah-rah. I like to see things as they are and call them by their true name. I know I’m resilient, but for now, I rely more on surgical skill, medical science, and luck. All the same, from the moment my eyes open after surgery, I dedicate myself entirely to giving this thing a beating it won’t forget. Wish me luck.
11 August: Very exhausted. Huge op. Bigger than expected. Very swollen still, barely talking, and only just now sitting up.
17 August: I’m not the fittest guy in the world, but I was always limber and mobile and pretty well-formed, so it was odd sitting down with a physio to discuss how I’m going to get around when I get home—checking if I had someone to look after me and if any stairs, etc. The suggestion was I might take a walker home with me.
So, we went for a walk using one, saying (in sign language) I don’t need one. We went for a spin to the far end of the corridor and turned, at which point I released the walker and let it roll forward, to prove the point. My hip is problematic, but I’m not running marathons, and it will heal. And anyway, Rigby will help. “Don’t do that” they squealed with a laugh and I reeled the walker in. Tomorrow I go without it.
19 August: The good news is that all but the feeding tube in my nose has now been removed from me, and I expect that to go this afternoon. I’m ahead in many of the indicators and have consciously pushed the limits – perhaps too far. Pain is only an occasional issue and at a much lower level than for comparative patients.
The bad news is that I’m rooted. Can’t remember ever feeling so weak – typing, like this, takes it out of me. My right hip and groin are deadened and swollen almost double the usual from surgery, with occasional painful moments. I can’t bear weight on that side. I would struggle to raise my arms above the plane so weak and debilitated I feel.
I’m on constant medication. When at home I try and keep it simple. I tend to think they can get in each other’s way and complicate things, but then I’m just a civvy crank. Because of my condition seemingly, they’re much more efficacious – I wouldn’t dream of taking a Panadol at home, but here, they’re mothers milk.
My mouth is full of padding and the sort of fishing line that dissolves – all very awkward, feels uncomfortable and tough even drinking, let alone talking. I suspect the swaddling is infused with a medical pain killer, which adds to the feeling of lightheadedness as they unravel.
Finally, though facial swelling is going down, still very tight. Feel I’m not seeing clearly from the right eye, but expect this will improve. The cheek – made from my hipbone – feels very heavy, but I heard one of the plastic surgeons refer to how it will adjust with calcium. Everyone is delighted with how ‘pink’ the flap in my mouth is.
Strange thing every morning to have crews of surgeons and specialists turn up at around seven and poke their phones and other bright lit instruments at my face and, particularly, my mouth. It feels like a very strange form of paparazzi.
Later: Starting to hit home how many things I’ve taken for granted I now need to relearn, at least in the short term. It’s a little confronting, so much require adjusting to in terms of ego and vanity, but including the purely functional. Have to stay focused on that and accept not all of it will come back. And maybe accept the need to slow down and take it rather than fighting it every inch of the way. There’s a lot to ponder.
20 August: Drinking tea out of a straw! What’s the world coming to? I’m not even going to attempt a coffee until I get full eating privileges back. It might be a while.
Later: I always wonder how much I should share. By now, for many of you, I’ll be a daily update, but I’m still living this intently 24/7. A lot of it is very hard. I like to be lighthearted, but I also want to be honest.
This morning I was briefly in tears thinking of Rigby and wishing I had his affection to keep me going. These are the things you yearn for in times like this – genuine affection, commitment, love. You’re on your own after a horrible procedure in the middle of covid and above all, you want to meet the eyes that care for you.
I remember in the week ahead of surgery the surgeon suggested it might be tougher for me than for many others because I was considered young in a medical sense and very active, and for me to lose all that in one hit would be hard to take. I tended to dismiss that, yet here I am.
The cute, manful story is that I’ve stepped up to the plate and enduring the challenge. And it’s true, in a way, not that there’s a choice. Yet here I am also having to face up to hard things every hour of the day.
You don’t come into life with attachments, it comes natural, but in the last week, I’ve needed attachments just so I could breathe again and eat. And just to talk is a great hardship. It’s bewildering and scary, and I’ve not yet become accustomed to the utter indignity of a life where there’s little I can do for myself. I’m a proud man but it’s not something I can afford – not with blood trailing from a nostril, food leaking from a crooked mouth, and the grooming standards of before a luxury.
Even with the surgeon. I sat before him a fortnight ago as an equal. Now, in his territory, I come as a supplicant. It’s the way of it and he – and all staff – are fine. I just have to accept a loss of authority and autonomy. Many thousands go through this every week. You deal with it, but I fear how much I’ll get back.
Still, I expect to get my puree certificate today. I’m going well and should be out Monday.
I should also add, that I intended to do this my way and be open about things generally but cautious in how I relate them. What I’ve discovered is that this is a mental journey more than it is physical. I’m locked inside this body enduring it, looking out, trying to make sense of what I see and feel, and trying to understand what it means for me. This is me figuring things out, but I have to do it. And, I can’t do that silently I’ve discovered, because everything else has been silenced. This is my only voice right now.
22 August: I had a minor setback the other night that has left me laundry deprived. Twice I coughed up blood, dirtying my last outfits. Because of Covid, there’s no laundry, and I’m stuck wearing hospital PJs until I leave.
Hygiene is a general concern. For obvious reasons, I haven’t brushed my teeth since before I came into hospital. The nurses do their best, but it feels pretty grotty still. I hate to think what my breath is like. Since surgery, and only temporarily, I’ve become a mouth breather. I wash every day, and if I’m lucky, it’s a seated shower. Not a lot of energy, and my hip makes many things difficult, from standing to dressing.
I’m amazed at how much body mass you can lose in such a short period. I’ve got from strong as an ox to someone who breathes hard getting out of bed. Much of the muscle in the chest and shoulders have fallen away, but I have a pudding belly from what they feed me.
A lot of this is just doing nothing, and my resources diverted to recovery. I think the hip and groin are consuming most. I don’t look great, but the more significant issue is what you can’t see.
I feel as if I get few good meals in me in the next few weeks that will go a long way towards getting my strength back, though that’ll be tough with my mouth as it is. The other thing is sleep. I haven’t slept well since I got here, until last night. A foreign, noisy environment, an immobile hip, and the need to sleep sitting up have made it difficult. Last night was the first time I slept through and could feel the therapeutic benefits – an actual sense of things knitting together.
I push too hard. I don’t like to let it drift for many complex reasons. But, acceptance. I reckon I’ll be out by Wednesday, barring setbacks.
In response to a query as to why I was so impatient to get home: Thats a very relevant question, and my answers will seem irrelevant to many, I reckon. Mostly, it’s because I hate feeling dependent and always have – which probably explains much. I have great respect for medical science and professionals in the industry, but by instinct resist the regimentation that hospitalisation requires of you.
Most importantly, I want to be back in my own environment – home. I want to sleep in my own bed and lay in my own bath and have my own mutt beside me – and, even out of reach for now, my friends too. And I know that if I make it home that I’ve achieved a stage – gone up another level in the game.
More to it than all that – I’ve learnt a lot these last 10 days – but that’s a fair summary.
23 August: I was up early this morning to take a piss before the doctors visited. Then I sat by my window and watched the sunrise over Melbourne and little streams of steam emerge from myriad hidden chimneys as the city came alive.
I got moved to a new ward yesterday, along with my partner. We’re now in a four-bed ward, and the vibe is different. For a Carlton supporter, he’s a good bloke, and we have a go at each other through the day. Now there’s half of that and twice the nocturnal sounds.
Every time I’m out of bed and on my feet I’m required to wear a brace. Basically, it’s a girdle – a strip of elastic that is wound tight around the body and secured by heavy-duty velcro at the front. It starts just at the top of my thighs to my nipples.
Since the surgery on my hip and groin, it’s absolutely necessary as I have no core strength without it. It’s a nuisance, though. I try to do as much as I can myself, but in the dead of night have called for the piss bottle a few times to do it the easy way. It feels a cop-out, though.
Last night I got up to take a leak and forgot to put the brace on. I stood above the toilet marshalling my puny strength to get it done and back to bed. It’s okay to sit down to piss I told myself. I didn’t, though – I’m not ready for that yet.
These are some of the mental games in my head: pride and defiance against good sense. The battle between getting the necessary rest and the urge to go further, and sometimes, too far. The balance between listening and doing. Some things never change.
In response to another query as to why not rest up in hospital with Covid raging outside: Not if I want a good nights sleep. It isn’t quiet through the day with people coming and going and PA announcements and clanging and banging and conversations in the corridors; but come the night, you have to put up with the coughing and spluttering too, the snoring and farting and strange things people utter it cry or whimper in their sleep. Tranquil it isn’t.
Later: Since the incident the other night, they put me back on a feed tube. It’s uncomfortable, inhibits breathing, and each time makes me want to cough. I reckon I go back 20% every time it’s used and I’ve been pushing to have it removed as it seems counterproductive.
Turns out of the reasons that’s not so easy is what should have been a strength. The dietitian says because I’m young – they call me the young guy here! – and because I’m tall and strong it takes more to replenish me, which sort of makes sense. They fear I may have lost a bit of blood the other night, and because I couldn’t feed, lost a lot of strength. I think that’s true, but I think I’ve recovered it too. I know they act from an abundance of caution, but all the signs – they admit – are fine, and I reckon if they harness the strength in me then I’ll recover quicker. I know my body.
24 August: So, I didn’t really explain what happened the other night – late Friday into early Saturday morning. I was laying in bed when at about 11.30 my mouth filled with what felt like a gooey substance. I called the nurse and with another helping her they cleared gobbets of old blood clots (from the surgery) as they emerged from my mouth. That took about 10 minutes to clear up. It was unexpected but not necessarily something to be alarmed at. I went back to sleep.
About an hour later it happened again, except this time it was fresh blood – essentially, I was bleeding and unless they stemmed the flow I was in trouble.
The nurses investigating called a code blue. A PA announcement and within a couple of minutes about a dozen doctors and specialists were crowding around the bed. It was like in a movie in which I was the star.
I guess they worked on me like that for nearly 2 hours. Doctors were called in from home. At all times there were at least two of them working in my mouth trying to stem the bleeding and suction away the liquid. Others worked on other aspects, checking signs and the conversation was constant.
I guess it was pretty scary, though it appears more so in retrospect. At the time I knew it was serious, but I didn’t feel I had the time to worry about it. I was focused on what the doctors were doing, my eyes flicking between the tableau of faces. Mostly, I concentrated on doing whatever I could do to help. That boiled down to simple things: keep breathing! As my mouth was constantly full of hands and instruments and wadding, the message became even simpler: breathe through your nose.
I began to tire after nearly 2 hours of this, but by then they’d decided on a small piece of emergency surgery to reattach a stitch that had come loose. I was wheeled downstairs and lost consciousness going into surgery, regaining it in recovery.
In the days since I’ve had one of the doctors and a nurse come to me and commend me on my calmness at the time. It feels a lot scarier now. I keep remembering what it felt like lying there at the centre of it. I must have lost consciousness a couple of times because it felt like there were jump-cuts. I’d open my eyes and notice the subtle changes in scene. They’d ask, did I know where I was? I did.
More to come…
Later: So, after coming out of surgery I rested back in my room feeling totally out of it. After a couple of hours, I decided I needed to go to the loo. As I do, I thought I could manage it, but as I stood I began to feel giddy and I collapsed to the ground unconscious before I hit it.
I came to about 20 seconds later sprawled on the floor in my undies, once more a platoon of medical professionals in attendance. I drifted in and out, and was eventually returned to bed, as weak as a stripling. I remained there the rest of the day.
In response to everyone urging me to slow down: Dinner tonight was a bowl of watery pumpkin soup, some custard, and apple juice and a high protein strawberry milk drink. Everyone else are on solids.
I’ve been a good boy today and taken it easy. The universe has spoken and this little grasshopper has listened.
Other than these meals I’m on 3 x feeds through my nose. These are high calorie feeds, not much fun, but all about building up my strength.
They knock me out every time. It’s like having a big Sunday roast with extra spuds, a few good glasses of red and a rich dessert and stretching out for a nap afterwards after loosening the belt. Like that, but without any of the fun bits.
I fought it before. Now I let it happen. I’ve had plenty of rest today and still feel pretty groggy. It must be good for me. The only real calories I expend are in healing, but there’s plenty of that to be done. I’m hoping there’s a quick payoff.
26 August: I’m now waiting to hear if I can go home, possibly as soon as tomorrow. I still have a nasal-gastric tube in, but am now eating orally. The decision has been made that I can go home once the tube is removed. One team has agreed it can come out now, as has the dietician. Just waiting on the other team to consent – they’re currently in surgery.
It comes as unexpected good news, just as I need it. I’m ready for the next stage, which is slow and steady recuperation at home. Then after that, radiotherapy. Then, complete cure and back to normal life. That’s the plan.
Now: and that’s what happened. Been home the last couple of days. Hard work. Haven’t been out the front door yet. Sleeping much better though.