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THE MOST TERRIBLE THING I HAVE EVER WRITTEN – PART FOUR

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

THE ELEVENTH POST

A FORUM MEMBER CALLED RABBI POSTED AND I RESPONDED

 

RABBI:

Boris…

Every time I pause to take stock of just how strong you are, I am awakened to the knowledge that I will never truly grasp the ‘man inside the machine’…

The way you both are dealing with this is truly awe-inspiring, and a condition that once filled me with palpable fear has seemed to become ‘not so fatal’.

I am no bard, and often my tongue becomes tied with emotion, but the insights and understandings that you have both shared with us all have helped me personally understand that there is hope, and life is worth fighting for…

Thank you.

MY RESPONSE:

Thanks, brother. But I am not strong like my wife is strong. I spend most of my time terrified and fighting the terror. This veneer I wear is just that – a veneer.

I made a conscious decision (with my wife’s approval) to tell people about what it’s like to fight this fucking thing. Cancer visits a lot of people – and if anything I’ve written helps anyone grasp what awaits when the Big C kicks in your door, then that’s good, I think.

 

 

THE TWELFTH POST

 

Monday heralds the sixth cycle of my wife’s chemotherapy and the halfway point.

She is bearing up remarkably well, though constantly fighting tiredness. Naturally, tiredness and a general feeling of unwellness brings along its handmaidens, depression and angst.

Lynette returned to work on a part-time basis this last Monday (her non-chemo week) and I continue to be in awe of her determination and strength. She tells me it feels great to have reclaimed a part of her life and I understand that this is a very empowering thing – despite the fear I hold.

One of the main issues we have to deal with, is the feeling that you’ve been slotted into a merry-go-round of endless doctor’s appointments, tests, scans, and sitting in waiting rooms while a collapsing public health system struggles to cope with its own shittyness.

It’s sometimes very hard for me not to start screaming and breaking things.

Both of us are astounded at how many people are affected by cancer and draw strength from the mutual expressions of black humour evinced by so many cancer patients.

I would like to thank Sandy for her immensely thoughtful gift to Lynette last week. My wife has been so profoundly touched by this gesture and the very many expressions of support (she has finally read this thread and cried and cried) she has had from here. I will never be able to fully express my gratitude to you all for the kindness you have shown her in the past months.

“But these people don’t know me,” she keeps saying.

“They are motorcyclists,” I reply. “I cannot explain it any other way.”

My son remains a rock of stability and an endless source of amusement and joy to us both, even though I know how difficult it is for him to see his mother suffering as she does.

I sometimes watch her as she sleeps –  a sleep so deep and coma-like, I nudge her to make sure she is still alive – and my heart simply shatters at her apparent fragility and evident suffering. But she always manages to give me a smile – even in her darkest moments.

And there are some very dark moments, let me tell you, for the both of us. But each time the monsters come in the dark to gnaw on our spirits, we somehow manage to pull ourselves out of their enveloping mouths and carry on  for the alternative is not an alternative at all, but abject surrender to despair.

This, neither of us will permit.

THE THIRTEENTH POST

Seven cycles of chemotherapy down…five to go.

This is not so much a journey as it is a series of terrifying battles in what is a long, costly and almost unbearable war.

I do not know how my wife continues. I look into her beautiful eyes and I see pain and suffering the likes of which I have rarely beheld in another human. And my heart breaks a little more each time.

Thus far they (the chemotherapy unit) have fucked her chemotherapy once, when they infused her in half-an-hour instead of the normal two-and-a-half hours. Phone calls were made to the drug company, the oncologist, and to their insurance company. Apologies were offered and it took every ounce of self-control I possess not to trash the entire room and conduct Australia’s longest and bloodiest siege.

We are both hopeful that no long-term evil will result from their idiotic oversight, but we just don’t know – and neither does anyone else.

But that happened at Cycle Five. We have just finished Cycle Seven, which was also problematical. The take-home bottle of cytotoxin normally takes two days to leech into my wife, and it follows immediately after the two-and-a-half-hour infusion that happens at the clinic. For reasons no-one (again) knows, it took three days this time. What the consequences of this are, once again, no-one knows.

Some of her blood results are good. Some are not so good. Once again, no-one knows what this means and everyone adopts a “wait and see” approach – which I find maddening in the extreme. I’m not shy about asking, but when there are no answers, it’s hardly productive to insist that someone provides one.

As we were told, the side effects of her chemotherapy are cumulative and heart-rending to watch. If you’ve ever wondered just how crook a human being can get and not die, wonder no longer. Chemotherapy provides that answer.

For three days after her treatment, my wife’s hands alternately burn and go numb with pins and needles. Sometimes they do both. It gets so bad she cannot pick things up. This will get worse and may well remain with her for more than a year after the treatment is over.

Her exhaustion is complete, profound, and absolute. It is an exhaustion that cannot be cured by sleep. But somehow, she musters herself and goes to work on the weeks she doesn’t have chemotherapy. I am in awe of her. I certainly could not do what she does and I am not ashamed to admit it. There are times when she is too tired to hold her head upright.

Her sleep is corpse-like and I am constantly shaking her to see if she still breathes. I don’t sleep much myself, but that is a small price to pay for keeping an eye on her.

Uncle’s bracelets are a blessing and keep her nausea at bay without the recourse to further drugs – both of us are of the view that she is already on enough bastard chemicals without needing to take more bastard chemicals for nausea when acupuncture bracelets work a treat. Uncle, you shall not put your hand in your pocket for beer this MotoGP, even if I have to rob an extra servo to get there.

I live a life of abject fear at the moment. I am scared to leave her alone and I certainly entertain no notions of fucking off for a weekend. I simply cannot leave her. My son is fine and grand and bright and strong, but he is 12 and he cannot be responsible for her care alone just because I wanna get on the piss with my mates.

In two weeks, she will be at Cycle Eight and the end of that will be in sight. However, I see no immediate end to this seemingly endless trial of shit my wife is being forced to endure. we lurch from doctor to therapist to oncologist to pathologist to clinic to doctor, in what is an endless carnival of “treatment”.

My wife and I have grown incredibly close as a result of all the time (and the type of time) we have spent together. We were always remarkably close, but the last few months have seen us forge a bond I cannot describe. If she dies, I will follow her swiftly. I know this like I know the sun will rise tomorrow, for I will see no point in continuing without her and will die of a broken heart.

Hopefully, and we both remain hopeful for we are not the kind of people who give in to despair, that day is far enough in the future for us to be able to give our son a bit of a start in life.

And there’s a lot of fight left in us yet. Serbs are funny like that. They say that we stand like a mountain and fall like a cliff. I tend to think that is true.

 

THE FOURTEENTH POST

 

Cancer is the gift that just keeps on giving.

After seven cycles of chemotherapy, the oncologist felt it was time for a PET scan.

The scan, which utilises the uptake of radioactive sugar to see if tumours are present in the body, has shown that Lynette has two small metastatic lesions on her liver.

As you can imagine, our horror and despair were crippling. We felt we had come so far and were eagerly fooling ourselves that there was some light at the end of this accursed tunnel, and then we were told that.

The numbers, those infernal digits which govern the treatment of all cancer patients, indicate that 70 per cent of bowel cancer sufferers end up with what is colloquially known as “Mets on the liver”.

We should have expected this, I suppose, and Lynette tells me that she kinda was. Like an idiot, and quite typically, I will accept nothing else than her full and complete recovery, so I guess I was more shocked than she was.

Luckily, and I use this word advisedly, these metastatic lesions are very small and there are only two of them. This is lucky because they can be easily operated on and the liver being the liver, is able to regenerate itself in six weeks. In fact, you can lose up to 70 per cent of your liver and the fucking thing will grow back eventually. It’s unique nature is a double-edged sword, though. Cancer in the liver is famously resistant to chemotherapy – which is why Lynette’s had no effect on it, and why surgery is the best option for it at this stage. Done successfully and well, a complete cure is possible. The alternative is unthinkable – though I think about it constantly.

I don’t even know how to assimilate this latest news. Once again, it appears she will go under the knife and once again I shall wander in aimless circles outside the clinic, weeping and keening like a beaten animal, and hoping nothing goes wrong and she comes out of her liver resection OK.

 

The fear of infection and complications fill me with dread. I have sold everything I have that is worth selling to pay the bills thus far and despite having good medical cover, the gap payments are beyond us, and therefore she is now at the dubious mercy of the public system.

I cannot express how that makes me feel.

The road ahead is dark once more. Not that it was ever lit all that well. That was just me being hopeful and not accepting the grim reality of cancer. I still do not accept it and will tolerate nothing other than a complete recovery for her. I cannot view it any other way and remain sane.

Once again, her bravery and grace surpass me. I look on her some nights as she sleeps and things continue to break and shatter in me like so much cheap glass. She looks so fragile and I’m so fucking helpless to change that.

This whole circus has irrevocably and profoundly changed us. It has changed us in ways that are not immediately clear, but we both know how absolute these changes are, whatever they are.

We have another of our endless medical appointments next week with her oncologist and a liver surgeon to explore the way ahead.

Fuck.

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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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