THE MOST TERRIBLE THING I HAVE EVER WRITTEN – PART SEVEN
I hope my story about my wife's cancer journey helps someone in some way...
THE TWENTY-SECOND POST
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 marvellous 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.
I would again extend my humble thanks to all the people who have bothered to give a shit and have helped me in a myriad different ways. Sometimes a simple text message was enough to snap me out of my hell. Other times, a phone call that let me vent and jabber like an idiot for ten minutes was helpful (you get a bit weird when the only people you talk to for four weeks are nurses, doctors, and your 12-year-old). I have no doubt your combined good wishes have helped by beloved wife fight her way through this.
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.
To all of you, I can just bow my head in gratitude. You have touched me more deeply and more poignantly than I would have ever imagined possible.
THE TWENTY-SECOND POST
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, so I may try and slip a root into her.
I am convinced the collective BikeMe! good will, wishes and prayers to various gods has helped her enormously.
The journey is not over – not by any measure. But this part of it is done.
My humble and everlasting gratitude to you all thus far.
THE TWENTY-THIRD POST
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 marvellous herd of bastards.
Thanks so much, to all of you.
Your continued support and good wishes have been more valuable than you could ever imagine. Whenever my world was nothing but darkness, I would sometimes re-read this thread and actually draw what little courage I had left into a useable pile and carry on – for to not carry on was unthinkable.
I truly and honestly hope none of you will ever have to deal with this garbage in such an intimate and close proximity – I am a horrible vindictive Serb of a man, but I wouldn’t wish this shit on my worst enemies (and I have a few beauties in that department).
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.
THE TWENTY-FOURTH POST
I thought I might just update this thread for those who are interested.
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 tinitus, 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 immesnely 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.
I would take this opportunity to thank you all yet again for the kindness you have shown me and my family in the past year. I know that your collective thoughts and wishes have buoyed my wife, my son and myself just when it got very dark – and please believe me when I tell you it got VERY dark for me there a few times. If this website never achieves anything ever again, I will be content that it helped me get through some truly Stygian blackness.
Thank you, one and all
THE TWENTY-FIFTH POST
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.
Thank you all for your thoughts and prayers. I am in no doubt that it has helped my wife immeasurably.
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.
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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.