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THE MOST TERRIBLE THING I HAVE EVER WRITTEN – PART SIX

I hope my story about my wife's cancer journey helps someone in some way...

THE EIGHTEENTH POST – Where Rabbi wrote to me again…

RABBI: Boris, I’m in total awe of you as a family and you as an individual.

Through these horrible, horrible times you’ve stayed on the rails and been your own tight support group. Such strength is astounding.

And yet, you were still able and willing to put it all into words and share with us. That is a level above everything else. I’ll not forget the magnificence of that effort.

May Lynette, Andrew, and you come through this quickly and totally. You deserve nothing less than for this to be well behind you.

May I suggest, Boris, that the sum total of the posts you’ve put up could be perhaps made into a kind of support booklet or web page for people in a similar situation? Your writing style is human, personal, and without bullshit, something that would be appreciated by many facing the same terrifying unknowns.

Just a thought.

Best wishes for a speedy and pain-free recovery,

Heather and Greg (Rabbi is his Forum name)

MY RESPONSE: Rabbi, please – there is nothing in me worthy of anyone’s awe.

I bumble along through this as best I can – as I expect anyone would bumble along if it happened to them.

There isn’t an instruction manual for when cancer comes calling.

I have always been my own support group – and there is a saying about Serbs – we stand like a mountain and when we fall upon our enemies it is like a cliff collapsing.

At the moment, I stand.

I don’t think it has anything to do with bravery, but everything to do with being stubborn. For there is no bravery here. This is not an enemy I can hit and beat and conquer physically. Nor is one I can outwit. This is a chimeric motherfucker that stalks my wife and keeps taking bites out of her just because it can. All I can do is be more stubborn that it is.

I write about it because I’m a writer. And I really do not know what else to do sometimes, except type it out.

My moods swing from a homicidal darkness that scares me (and I categorically DO NOT scare) to a euphoria that is almost childlike. Like, I just got back from the hospital and am on my way to pick up my son, and I was like a child at Christmas to see my wife propped up in bed. Sure, her eyes are heavy-lidded with painkillers and she has so many tubes coming out of her that it is truly spooky, but she is lucid and all the indicators are positive.

I don’t for one second imagine her to be out of the woods yet – and this mountain she’s climbing is bigger than either of us could ever have imagined. Disaster hovers constantly close and the more I read about liver resections, the more I thank the fates she got through it.

I draw comfort from you lot – as weird as it may sound. But each of your posts is like a spark of positivity and hope for me.

I ask for nothing else. And I am more grateful to you all than I could ever hope to express or repay

 

 Blokes, rest assured that when I can see some light at the end of this never-ending tunnel, I will most certainly see about climbing into a very tall tree and then falling right the fuck out of it in truly disgraceful manner.

At the moment, if I start drinking, I will not stop. And I cannot do that to my son.

But I’m hopeful that by the time the GP rolls around, I’ll be able to have a little time to myself.

Thank you to all the wonderfully thoughtful people who sent such magnificent flowers to my wife, who has only today emerged from one of the greatest drug-induced fugues I have ever seen. She was actually quite lucid this afternoon, and after almost three days of conversing with a barely animated human whose eyes kept rolling back inside her head as she drifted in and out of consciousness, I was quite relieved.

Once again, your kindness and thoughfulness humbles me.

 

THE NINETEENTH POST

 

Tomorrow marks the second Monday since surgeons removed most of my wife’s liver and gall bladder. They removed her gall bladder because it is irrevocably bonded with the part of the liver that had cancer in it.

Last Monday they hinted she may go home…as soon as the bile leakage from the operation had dried up.

But it has not fucking dried up, has it?

 

It has continued to leak and leak and leak. And after Lynette’s initial improvement she has kind of just stopped getting better.

No-one knows why and several scans have revealed nothing other than a bile duct that is leaking.

Therefore, the surgeons have decided to operate again.

 

Tomorrow morning they will once again hack open my wife and then spend several hours rummaging through her insides to fix the leak.

I am insane with concern and dread. I have reached a point of mental, emotional, and physical exhaustion that is entirely new to me. Every day I am at the hospital at 8am after dropping my son off at school, and I remain at her side (except for ducking out to get my boy at 3pm and bringing him back to the hospital), doing everything the non-existent, incompetent or plainly worthless staff do not have the time or the inclination to do, until they ask me to leave around 9pm.

 

These duties consist of mundane things, like straightening her bed, helping her shower, and rubbing a special anti-bed sore cream on her. But my duties also encompass tasks such as squeezing the collected bile out of its vacuum balloon and into the bag at the end of the drain that runs out of her abdomen, and dealing with the tubes of oxygen, the cannulas (which need constant re-taping) and the various machines she is attached to.

Yesterday, her drain tube was filled with a white fatty substance (as well as the normal orangey-brown bile). At 3pm I asked the nurses what it was. They didn’t know. They contacted a doctor. He came at 9pm that night. He didn’t know what it was either, but felt that it had something to do with the bile.

I felt like killing him.

But I didn’t, because I don’t think I would have stopped with just him.

I am broken and I doubt that I shall ever be remade whole as I once was. I am at a loss to know what to do or how to feel or what to expect. The onslaught is relentless. One horror piles upon another horror which is piled upon another horror, and on we go.

Lynette is in awful pain some of the time and bearable pain the rest of the time. I can barely stand to watch her struggle and suffer silently. She has a dignity that shames me and my eyes do nothing but burn and blur with tears as I look at her.

I hope, which is all that is left to me, that tomorrow’s harrowing procedure will fix the problem and that she will begin at last to heal. Because if it doesn’t happen, then I know that my little family will not be able to continue like we now are. I am nothing without her and the joy she brings into my life. My son is remarkable and knows he is my strong right arm, and I know I must remain upright and functioning for his sake. But without his mother and my wife, I am lost beyond any hope of redemption.

I have no idea if I am even remotely capable of dealing with any of this, but I guess I’m gonna find out.

 

THE TWENTIETH POST

 

 I was at the hospital this morning at 7am.

My wife was dressed in her surgical gown and waiting nervously to be wheeled away to theatre.

A beaut gay nurse tasked with asking her the same repetitive pre-op questions decided to improvise and add another one –  perhaps for his personal gratification.

“How do you feel emotionally?” he squeaked.

“I feel like fucken shit, you fucken idiot,” my wife hissed at him, beating me to the punch. “How am I expected to feel?”

“Oh…” he said.

“Don’t say another word, kid,” I snarled at him. “One more stupid impro question like that and you’ll be asking people if they want fucking fries with their meal.”

They wheeled her into theatre at 8am. I kissed her at the swinging doors, drowning as always in her amazing brown eyes, but struggling to keep the tears out of mine as I again beheld pain, fear and resignation in hers. My wife has the most amazing eyes. They are truly the windows to her soul.

The doors swung closed on my last wave to her.

It was fucked. It’s been fucked every time and this time it was no different, except to be a bit more fucked. You never get used to seeing your partner off into major surgery.

And this was the fourth major procedure my wife had endured in the last six weeks. Which probably explains why my fear glands had emptied everything they had into my body when the doors swung shut behind her.

I stood in that empty, sterile hallway for I do not know how long. I was trembling and my mind was just empty. It’s like when your TV runs a test pattern. I was on, but no-one was home.

I started walking and I walked and I walked for the next three hours. I went back to Parramatta Park. It is peaceful there and quite pretty in the morning. I searched in vain for a predatory homosexual or a rapist or a mugger to pound but I was disappointed to come up empty handed. But I did find a memorial cross in the scrub by the creek. It was a homemade crucifix about half a metre high and written on it in Texta were the words “Gone but not forgotten”. The Turpentine tree that stood behind the cross had about a dozen photographs neatly pinned to the bark. The snaps showed a young woman in early 20s, laughing with family and friends and also on her own. Typical happy snaps.

I found the whole display impossibly moving and deeply poignant. There was no name and no explanation, but someone had gone to a great deal of effort to make this wee memorial in the scrub.

And then my own mind began to run away with itself. I wrote and rewrote Lynette’s eulogy in my head. I cried like a child as I walked the trails and I kept repeating: “Please, please, please…” like some kind of mantra. But it wasn’t directed at a deity. It was directed at my wife. I think I was begging her to come back to me.

Three hours of walking found me sitting on the tiles outside Recovery. This is not a part of the hospital that the public is normally in, but no-one questioned me and I just sat there on the tiles waiting. I’m good at waiting these days, though I am not by nature a patient man.

After about two hours my phone rang. It was the surgeon. He told me that my wife was in Recovery, that the procedure had gone very well, and the offending bile duct had been sorted courtesy of some clever plumbing where he used a section of my wife’s small intestine to force the bile where it was meant to go.

“It was complex procedure,” he said. “But it went very very well. It went remarkably well. And I had a look at her liver while I was there and that’s healing well. Fingers crossed, but we think we have this sorted now.”

I sobbed. I thanked him and then I sobbed some more on the floor outside Recovery. Happily, it’s not a heavy traffic area or it would have been most shameful.

About an hour later, a nurse walking by asked me who I was waiting for. I told her. She said, “I’ll be back in a sec”, and disappeared inside the swinging doors. A minute or so later she was back and I found myself ushered into Recovery.

Members of the public do not enter Recovery. But the nurse obviously took pity on me, and showed me where my wife was. I broke down again, sobbing and snuffling like a bitch, but these were tears of almost-relief. I say almost, because I will not know relief from this vile disease for a long time, if ever. But Lynette was alive (zonked off her skull), but alive.

“I made it again,” she whispered to me, her eyes rolling back in her head. The nurse was considerate and drew the privacy curtains around my tears and I spent a full minute just kissing my wife’s forehead and thanking her for coming back to me.

I left her about an hour ago. She is once again in the Post-Operative Acute Care Ward (this ward actually looks and acts like one would expect such a ward and its staff to behave, unlike the shitting fuckhole she spent the last two weeks in) and I am emotionally and physically hammered.

My humble thanks to Crew, who offered to come and keep me company and feed me Tim Tams. Brother, that was an offer I will take up another time. I ain’t very good company at the moment and all I do is sweat on my wife’s health. I am not fit for the company of men at this time.

Many further thanks go to all the wonderful people from here who took the time to text me good wishes for my wife. I believe that with your kind thoughts she cannot help but get better.

Thank you all so very much.

I’m gonna get on with climbing the rest of this fucking mountain now.

 

TEWNTY-FIRST POST

 

Big hard week, road brothers, big hard week.

After the second major procedure on Monday, my wife looked to be recovering OK on Monday evening. But that all changed on Tuesday.

There were some issues with her pain, ie. She was in lots of it and the drugs she was on (Oxycontin and Fentanyl) were just not bringing the relief the Pain Management Team were happy with. Two big-end abdominal surgeries in as many weeks tend to bring some hurting with them.

The problem lay within the Fentanyl. It is self-administered by the patient via a little green button and can be used every five minutes. The trouble is that the drug, while very effective, makes you drowsy. So when Lynette dozed off, her pain baseline would rise, wake her up, and then she would spend half an hour hammering this shit into herself in absolute agony, then she would pass out again and the cycle would repeat.

A decision was made to remove the Oxycontin (a slow release analgesic) and replace it with Ketamine, while maintaining the Fentanyl.

Yes. That Ketamine. And yes, I don’t get it either.

It is efficacious as a pain killer, apparently – and so it was.

But on Tuesday evening Lynette’s condition began to deteriorate. Her pain was through the roof and her bloods (they call her blood test results “bloods”) were shit. I called my mate Rick and asked him to come and collect Andrew from the hospital so that he would not witness firsthand what may have come next. It was a very difficult call for me to make, but as strong as my son is, seeing his mother in such extreme distress was, I felt, unnecessary.

I saw my son to my friend’s car, told him I’d call him later and went back to Lynette.

She was manifestly in appalling agony, which made me wonder why the still-pimply registrar felt it was just the time he would attempt to insert an arterial line (these are cannulas that go direct into an artery as opposed to a vein) into her wrist. This is not an easy procedure even for an experienced anaesthetist, and I was more than a little perturbed when I saw this fuckwad being dressed in surgical scrubs by a nurse who was trying very hard not to roll her eyes, and prepare to dig around in my wife’s wrist searching for her artery.

Forty minutes later he was still digging around, and was now joined by the registrar relieving him.

“One more go,” said the new registrar.

“How crucial is this procedure?” I rasped.

“Oh, is not crucial,” said the doctor. “It is just easier if we need to draw blood.”

 

“If it is not fucking crucial, you will cease,” I hissed. “Now.”

My wife’s bed was awash with blood from their failed attempts and I and she had had quite enough – and she was barely conscious so I was doing the talking.

They left, the nurse cleaned everything up, and I held Lynette’s hand for a while as she moaned like a wounded animal. Her abdomen was tight and distended and that was not good. X-rays showed her stomach was full of bile and gas and the decision was made to insert a gastro-nasal tube to relieve the pressure.

This is also a not very pleasant procedure and one they prefer to do under general anaesthesia, but somehow the nurse and my wife managed to get a tube up her nose and down to her stomach and within a few minutes of it being pumped out, Lynette was more comfortable.

I sat with her for another hour, felt she was as comfy as she was gonna get and then, despite my desire to stay all night, had to get my son from my mate’s place.

 

I did that and went home. Put him to bed, did the laundry, had a bite to eat, and went to bed at 11pm. At midnight the phone rang and my heart stopped.

“This is Westmead Hospital. Is that Boris Mihailovic?”

“Yes.”

“You need to come to the hospital.”

I hung up and ran to my son’s room. I had to shake him awake hard for he is a heavy sleeper and he was tired. My mind was screaming and I felt I was going to lose the light of my world that night. Hospitals don’t ring you at midnight to ask how you’re feeling.

“Mate, I need to go to the hospital for little bit to sort something out for mum. I need to leave you alone for a while. Do you understand?”

“Yes,” he said. “But I’m not alone. I have Bane.”

The indefatigable War Bear, as always, stood in readiness to attend to what was occurring.

So I left my son alone and raced for the hospital. I bolted upstairs and into my wife’s darkened room to find her in the grip of a Ketamine-induced hallucination. She was completely disoriented and had pulled the arterial lines out of her neck. There was blood and bile everywhere.

“Are you really here?” she asked me, her eyes round with fear.

“I’m here, angel,” I muttered, my voice hitching with emotion and my eyes round with fear as well.

“It’s OK, it’ll be alright, just relax,” I said, trying to keep my voice even and calm.

“Is that you? Where am I? What are these tubes?”

I spent about half-an-hour talking to her and trying to convince her I was really present, then I walked out of the room and found the registrar – the same piece of shit who had attempted the arterial line earlier that evening.

“Why is my wife psychotic?” I asked.

“We think it is the Ketamine,” he said.

“Have you taken her off the Ketamine?”

“No, we are waiting for the pain management team to arrive.”

I was gobsmacked.

“I don’t give a fuck what you’re waiting for, mate,” I stated quietly. “You know and I know she’s in a fucking K-hole and you have left her on the fucking Ketamine so that it gets worse. So you either stop it now or I shall stop it now.”

I turned on my heel and returned to my wife. I’d promised her I would return before she’d managed to count to 20 so that she wouldn’t think I was a hallucination). The registrar followed me and turned off the Ketamine drip. I had every intention of smashing it to pieces and I think he saw that in my eyes. Apparently, I can be a bit scary when I wish to be.

I sat with her until almost 3am. I know a bit about Ketamine, having sat under a bush at a work Christmas party some years ago screaming inside my head with my eyes closed, and knew it would leave her system within an hour or two.

“Am I dying?” she asked me as I sat with her in that dark room, surrounded by unknowable horrors and grim with despair. I had no idea if she was or if she wasn’t, but there was only one answer I was prepared to give her.

“No! Of course, you’re not dying! You’re just having a bad trip on that Ketamine shit.”

You can imagine how much I hoped I was right.

Steadily she became more lucid, and just as I was ready to drop with exhaustion she seemed to come to her senses.

I left her and returned to my house. My son was asleep on the couch, his arms wrapped around the War Bear who gave every appearance of being content, though it’s hard to tell with him sometimes.

At 630am, I was back at her bedside. But I was not alone. When I entered her room, there was her entire surgical team (five surgeons – among them a professor), the head consulting anaesthetist of Westmead and his assistant, and Matt, the hospital’s gun anesthetist, who was placing an arterial line into my wife’s wrist with all the ease and skill of a man with major kung fu. In less than a minute, he had the line in and she barely felt it. The two clowns from the evening before had spent the best part of an hour attempting the same thing. But those two cunts will burn for the hurt they caused my wife one day. I know this.

She was off the Ketamine and with the assistance of these medical top guns, a new pain protocol was initiated which saw my wife comfortable and relatively pain free within half an hour.

They score pain in hospitals. Out of 10. Ten being unbearable agony and one being almost pain free. For the past three days my wife has recorded pain scores of 9 and 10. She was now registering fives.

Her bloods were still shit and I was told that she may have to undergo a third abdominal surgery, but that call would be made before lunch after she had undergone an ultrasound to see what was going on in her abdomen.

I was grey with fatigue and despair. I didn’t know if my wife was strong enough to be ripped open again.

“Is it panic stations, doctor?” I asked, somewhat foolishly.

The doctor, her surgeon’s 2IC – a tall, impossibly stern and self-possessed woman who is on the cusp of becoming a great surgeon in her own right, if the hospital gossip is true (and I honestly believe it is), fixed me with a steely stare.

“I do not panic,” she said quietly and evenly. “I simply deal with the issue. This issue is being dealt with, Mr Mihailovic.”

By that afternoon, my wife was much improved. Her ultrasound revealed her tiny slice of liver was “flushing well” and that the gastro-nasal tube had returned her stomach to normality. The decision for a third surgery was put off for the moment.

I spent a restless and sleepless night last night and was back in the ward at 7am, only to see her entire surgical team around her bed, talking surgical speak which contains lots of acronyms and grunting.

Dr Richardson, the head surgeon, smiled at me and her.

“The numbers are all much better,” he said and looked at Lynette. “You are improving. You are less jaundiced and we feel things are heading in the right direction. We’ll keep an eye on you and I want no more misbehaviour on your part with these party drugs, young lady.”

It was all I could do not to break down in front of him. Again.

I have just returned from her bedside and will go again shortly. She is still nil by mouth, but the physios stood her up for a few minutes today and she sat in a chair for about two hours. She even tried to have a crap, which is a wonderful thing. She is a lot less yellow about the eyes and her pain is scoring at two.

I will take what mercies are being offered in this regard. The road ahead is still impossibly long and undoubtedly fraught with shit. I shall see what I shall see.

But for the moment, I would again extend my pathetic gratitude to all who have sent flowers and cards and well wishes. They may seem like empty and futile gestures, but let me assure you they are not.

Hospitals are dreadfully toxic environments and what relief comes into them from the outside world is like a drink of water to a thirsty man.

Thank you. All of you.

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Boris Mihailovic

Boris is a writer who has contributed to many magazines and websites over the years, edited a couple of those things as well, and written a few books. But his most important contribution is pissing people off. He feels this is his calling in life and something he takes seriously. He also enjoys whiskey, whisky and the way girls dance on tables. And riding motorcycles. He's pretty keen on that, too.

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