THE MOST TERRIBLE THING I HAVE EVER WRITTEN - PART FOUR, THE FINAL INSTALMENT...I HOPE

IT WAS AROUND THIS TIME, MY MATE RABBI WROTE TO ME ON THE FORUM 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.

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 MotoGP 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 humbles me.

AND ON WE WENT…

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.

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 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 my wife was in Recovery, 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.

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.

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

Big hard week, this last one after that operation. 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.”

Our indefatigable War Bear of a Rottweiler, as always, stood in readiness to attend to what was occurring.

So I left my son 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.

THE BEAT WENT ON…

This marks the beginning of my wife’s sixth week in hospital.

To say I am having separation anxieties is to understate the matter somewhat.

Last night her surgeon came to see her.

“I am extremely happy with your progress, Mrs Mihailovic,” he said. “Keep this up and we may have you home very soon. Your bloods are very good and we are very pleased.”

If you knew her surgeon, this expression of approval is akin to the Pope announcing Jesus has come to earth and we are to prepare for the Rapture.

I swear to you all I actually danced around her room last night, much to the amusement of the nurses – most of whom have come to view me as a relatively benign but ultimately grim life-form who will allow no ill to come near his wife and has a habit of appearing at all hours of the day or night to see if they are caring for her in an appropriate manner.

The fact that I am often accompanied by an extremely large 12-year-old who also looks grim (but in a cherubic kinda way) helps them all to have a clear picture of what will occur if shit happens.

Then I helped her to the toilet and one of her last two wound drains fell out. It was the smaller of the two and drains her spleen (which produces a marvelous green liquid I swear is the progenitor of British Racing Green), and as quick as an eye blink I was back on the runway, engines at full thrust, missiles loaded and explaining to the nurse that if she isn’t on the phone to her surgical team within the next five seconds there will be a hostage crisis in the ward.

Within five minutes, Sanjay, the 3IC of Lynette’s surgical team appeared at full trot, still in surgical scrubs. He is a wonderful doe-eyed Indian surgeon who radiates calm and assurance.

“Her bag fell out!” I shrieked. “She was getting better and her fucking bag fell out!”

“Yes, it did, Mr Mihailovic,” he said quietly. “And it is perfectly alright that it did so. It was due to come out tomorrow anyway, and sometimes they do come out on their own, especially when they are no longer draining and dry out.”

“So she’s alright?”

“Yes, she is alright.”

I turned off my jets and stowed the missiles for future deployment.

I have spent the last few weeks like the proverbial cat on a hot tin roof - frightened, hyper-alert, and prepared to kill and eat everything and anything that would seek to cross me or harm my family. Hell, I was starting to make myself nervous.

As it stands now, it is possible I may have my wife home with me by the weekend. Of course, I was initially told she would be home in 10 days when I signed her in six weeks ago, so shit can still happen for all sorts of reasons, and I have long given up on futile optimism and choose to employ guarded wariness instead.

But for the moment, there is a little bit more light in my world.

We still have a way to go on this journey. But just having climbed this last mountain fills us both with a sense of relief and achievement. I am humbled, as always, by her strength and determination. She is in every way a better and stronger person than I could ever hope to be.

I have her home.

My relief is incredible.

Hers is even more incredible.

Of course, she’s now out cold in bed, which is the first proper sleep she’s had in six weeks.

The journey is not over – not by any measure. But this part of it is done.

Today I shed actual tears of joy – which is a great change from the tears of despair I have been weeping recently.

Lynette has been home for three weeks now and has been making very slow progress to getting over the awful shit that has been done to her.

She is in pain most of the time, but is managing to wobble about the house and even make attempts at cleaning because, apparently, my previous efforts were “Shit” and cause for shame.

Both of us have been having a lot of unspoken moments. Neither of us know what the future holds, or if there is much of a future. So all the plans we used to make in the past are no more. We just live in the moment, for that is all that is possible at this time.

Last week, she went to see her surgeon and he declared himself satisfied with his work and pleased she is recovering. She has lost a stone in weight from her hospital stay and looks very gaunt (my wife was not a big girl to start with) and we’re in a Catch 22 situation. The foods that will make her put on weight are not the foods she can tolerate (one apparently needs a gall bladder to deal with fatty foods and that fucker went into the bin along with most of her liver), but we persevere with Sustagen and assorted wog foods that are hugely nourishing and that she can tolerate. She’s actually never eaten so well in her life.

After her appointment with the surgeon, she was sent for a blood test – copies of which are sent to her surgeon (who is only concerned with the results of his surgery) and to her oncologist – who is the man dealing with her on-going treatment.

As you know, people with cancer sweat on blood tests, because they are the indicators of what happens next. And both Lynette and I had been sweating on the results of this one.

Unable to stand the suspense anymore, she emailed her oncologist and demanded to know the results of the blood test – of primary concern was the CEA number. Regular viewers will be aware that the CEA number is known as a “tumour marker” in the medical business. It is a protein the body produces naturally, but tends to overproduce when there is cancer present.

Between zero and five is normal, ie. no tumours present within the body. When she went in for her initial bowel resection, her CEA was in the 60s. Subsequently it fell, but then stopped falling when it reached 17 and she was then whisked into surgery for tumours of the liver and the Hell that followed on from that.

Her CEA today was 3.

Like I said – tears of joy and lots of them.

Of course, neither of us are naive enough to think this is the end of anything. But this is the first positive news we have had in a long and truly arduous year and I cannot help but want to share it with you marvelous herd of bastards.

Thanks so much, to all of you.

The physical and emotional destruction cancer wreaks is incredible. The sense of helplessness is overwhelming. The mental preconditioning and how we think about cancer is very hard to fight. I would have never believed it had I not see it myself. Lynette and I have been at this for almost a year now and it has changed us irrevocably and profoundly.

I am so happy over this little thing right this minute that I am beside myself. I do not know what the future holds, but right this minute, I am happier than I have been for months.

A FEW WEEKS LATER…

My wife is in her second-to-last chemotherapy cycle. All of her bloods are good, her cancer markers are normal, but her liver remains unwell and is struggling along. Her oncologist is of the view that this is due to the chemotherapy and will hopefully improve after she is off it and her struggling liver no longer has to deal with its “helpful poisonings”.

We both hope so, because the shit knocks her around a fair bit at the moment. Sure, she has good days, but she has a lot more bad days - when the chemo simply overwhelms her already fragile constitution and I get to watch as she collapses under an exhaustion so profound it scares me (among other things - like a peeling mouth lining, intense stomach pain, awful tinnitus, and burning hands and feet). I still shake her awake ten times a night to check if she’s alive.

Thankfully, she has started to do a bit of light exercise - she briskly walks some 12,000 steps a day and does some light yoga. I also bought her some tiny weights for Christmas to help her regain some muscle mass . Of course, all of this is contingent upon how she is feeling at any given time - and that is as changeable as Melbourne weather.

Lynette continues to inspire me and leave me filled with awe at her sheer determination to beat this thing. Of course, there are times when I know she has simply had enough of being constantly sick - a very trying and immensely depressing situation for a woman that had the constitution of a Clydesdale and was very very fit before cancer set up house in her bowel and liver. But she will not surrender.

We can now see a light at the end of this particular tunnel - but we know that there may well be deeper and darker tunnels ahead. Such is the nature of what we are dealing with. But while Lynette continues to inspire me with her indomitable courage and determination, I will be prepared to face anything with all the strength I have at my disposal.

Today is a very good day for my family.

My wife, Lynette, has just returned from a most important scan (the three-month one that follows on from the end of her treatment) which her oncologist said is a benchmark (the disease often makes its return in the three months after treatment has ceased) and her results show no evidence of any disease.

Tonight I shall dance the dance of my people and sing the songs of happiness, for my family and I have been sweating blood over the results for a while now, and the results are great.

It is another victory in a long war.

CONCLUSION?

I didn’t post any more updates after this. It was like I had been juiced dry and felt I needed to focus on playing the cards life had dealt me.

Was that the end of Lynette’s battle? Not remotely. Cancer, as you have heard, is the gift that keeps on giving. And it did just that. And she did what she had always done – she kept fighting.

Among the many battles she fights in this endless war is Cholangitis. Every now and again, the bile duct that was created for her during her second abdominal surgery, gets blocked at the stricture point – the place where the surgeon joined the bile duct to the liver.

And bile begins to build up and seep into her abdominal cavity.

What happens next is terrifying. She begins to itch all over, she gets a sharp pain in the middle of her back, her tinnitus – a result of the chemotherapy – gets dialled up to an unbearable level, and then she begins to shake uncontrollably. She gets a fever and the resultant fatigue drops her. She can be like this for several days. All I can do is monitor her temperature and pray it doesn’t go over 40, in which case she must be rushed to hospital and pumped full of mega-grade intravenous antibiotics.

That has only happened once. Most of the time we can manage it if we get her onto the oral antibiotics fast enough. But each bout of Cholangitis damages her liver a bit. Eventually, it is likely she will develop sclerosis of the liver – and that’s a bad thing.

We have made several attempts to fix this with keyhole procedures to open the stricture up, but it’s proving to be a tricksy Hobbit. Her surgeon, Professor Arthur Richardson, has adopted a wait and see approach, and has advised us that a full reconstruction of the duct is the last resort.

To add to this ongoing fuckery, ten years after she had been initially diagnosed with cancer, it came back. The spot that had been on one of her lungs since the beginning had suddenly stopped being dormant and became active.

A lung resection was called for. Happily, it was not a big one and the lung cancer had not scattered throughout her lungs. It was just in one spot. The issue was that it might have been a new primary tumour – in which case that was very, very bad. The best case was that it was another metastasis from her original primary bowel cancer.

How’s that huh? You hope and pray the cancer on your lung is just part of the original cancer and not a new one.

Once again, luck was with her. It was a metastasis and not a new primary.

The surgery went well, and she has recovered nicely. And she marches on – cloaked in glory and wonder, in my eyes, anyway.

The disease has changed us both. Profoundly. Cancer fucks with your head as much as it fucks with your body. It always hangs over your head, like that sword of Damocles you may have heard about.

Briefly, that ancient tale concerns a young man called Damocles, who spent a lot of time sucking up to his King, Dionysius. He flattered his king endlessly and told him how fortunate he was to be surrounded by such wealth and to have such power.

Dionysius had enough of this bullshit and offered to switch places with Damocles for one day – so that the young bloke could see first-hand what it was like to be king.

Damocles jumped at the offer. He climbed onto the throne, king for the day. Dionysus then hung a sword over the throne, suspending it by a single horse-hair. The sword hung over Damocles to remind him that the price that must be paid for his power and luxury was the ever-present threat of the sword that hung above his head, held, as it was, by the slimmest of threads.

Damocles immediately begged to be restored to his normal place of fawning courtier.

That is the sword that hangs above my wife’s head. But there is no Dionysius to assist her off the cancer throne she has been placed on. She must continue to sit there and hope the horse-hair holds.

And that is how we live.

Because that is the hand we have been dealt, and it is the hand we must play, for there is no other.