THE MOST TERRIBLE THING I HAVE EVER WRITTEN – PART ONE
I hope my story about my wife's cancer journey helps someone in some way....
I’m sure my regular readers might argue the point with me, but I stand by it. What follows remains the hardest and most terrible thing I have ever written.
It was originally written as a series of posts on the BikeMe! forum. The first post was on 10 February, 2009. The last, some 90-odd pages later, was on 3 June, 2010.
In January of 2009, my wife, Lynette was diagnosed with Late Stage Three bowel cancer. If you’re not aware, Stage Four is terminal.
Neither Lynette and I knew much about any of that. Cancer was something other people got. There was no need for us to know anything but the very basics of what it was and what it did – sorta like what you might know about it if you’ve never dealt with it.
When the brilliant Christopher Hitchens got cancer, he wrote how it was like crossing an invisible line into the Land of the Unwell.
Lynette and I crossed that line in 2009 – and we remain on the other side of it because there is no going back to the Land of the Well. Ever. Not really.
Many of you have crossed that line as well. And many more of you will cross it at some stage – either as a cancer patient or as a carer. And just like Lynette and I, you will look back over that invisible line and words will fail you, but you’ll know that you’re not only in the fight of your life, but that life, should you be fortunate enough to retain it, will be forever changed. And you will be forever changed.
The shock of the diagnosis was profound. Our world was collapsing around us. Our son, Andrew, was just about to start high school – a milestone in any child’s life – and here was his mother getting cancer.
I had no idea what I had to do. I had no idea what was going to happen next, and the best I could manage were some inane platitudes to my wife about how she shouldn’t worry and how it will all work out. I doubt she even heard them over the turmoil that was raging inside her.
Our journey inside the Land of the Unwell then began – and these things do tend to start quickly because time is of the essence and the stakes are as high as they get.
This journey still continues.
But at that time, one of my coping mechanisms – if I could even call it that – was to begin posting on the BikeMe! forum about what was happening.
It proved to be an astonishing thing. The forum members, many of whom I knew, but not all that well, and some whom I did not know at all, began to reply to my posts – and the outpouring of genuine support and empathy contributed greatly to my sanity.
I was in a very dark place. The darkest place I had ever been in. And as I charted my wife’s journey – and she was in a far darker place than I was – the good and great people of the BikeMe! forum went along with me.
I debated long with myself about resurrecting that thread and those posts. Thus far, only a very small audience had ever read them. They are deeply personal and deeply disturbing to me when I read them back. It’s not a journey I’d care to re-live, I imagined.
But I’m not really reliving it, am I? Lynette and I are still on the journey. And we are now very familiar with the Land of the Unwell. The battle continues.
I know that other people are fighting this battle. I know that other people will fight this battle. I know some will lose, and I know some will win. I know that every battle is different.
And this was mine…
THE FIRST POST
This is the hardest thing I have ever had to write.
It is by now obvious that I have been absent for a while.
The reason for my absence is that my beloved wife has been diagnosed with bowel cancer and is due in surgery tomorrow.
As is the case with this disease, developments are discovered progressively, ie. has it moved to the lymph system or the liver, etc? At this stage, we just do not know, but maintain a kind of keening animal-like hope.
I am utterly devastated, unmanned, terrified, and confused, and am attempting to cope as best I can. My son has just started High School and we have not mentioned the C word to him. His friend’s mother died of it three months ago, so it’s a bit of a bad word for him. I shall of course tell him when I feel the time is right – though that may well be decided for me.
I am living hour by hour and from day to day, lurching between optimism and a despair so dark and black I’m amazed the human spirit can contain such darkness.
This development is the reason some of you may not have yet received your T-shirts, etc. I shall endeavour to move the fulfillment of orders somewhere else, though I’m not quite sure where yet. I beg your indulgence in this, but am happy to refund your money if the wait is intolerable.
I am in the darkest place I have ever been, and I see no way out from it thus far.
My family and I have a mountain to climb and until we have climbed it, I am unable to direct any attention elsewhere.
I thank you all for your support on the website and I expect this wonderful corner of the web to continue in the vein in which it was intended.
I’ll see you all further on down the road.
THE SECOND POST
I have read your posts on this thread and they have touched me beyond words. I never imagined there to be such a depth of caring and empathy for either me or my family from people I barely know.
I owe you all so much more for your kind thoughts than I shall ever be able to repay.
My wife was operated on yesterday and the cancerous section of her lower bowel was removed. The surgeon stated he was pleased with the result and after manhandling her liver to see if there were any indications of evil there, said that he saw no signs, but that we were not to take this as good news until all of the pathology comes back next week…and even then it’s a waiting game.
Today, my wife is about as ill a human being as I have ever seen. When I left her this afternoon to pick up my son from school, she was being fitted with a nasal-gastro tube to empty her stomach (she is constantly nauseous and the doctors believe this to be the result of her bowel needing a kickstart after surgery). She is also having some blood transfused this afternoon because her haemoglobin is in the toilet.
I keep thinking I am out of tears, but they still manage to appear when I least need them or want them. All I can do is stroke her forehead and curse my helplessness.
May you all be spared this. It is an evil beyond reckoning.
I look at the posts here when I have a spare few seconds, but I am at a loss to add anything to any thread, welcome new members, or do any of the things I used to do on here. My life is now profoundly different to what it was a fortnight ago.
I would hate for this place to wither away and I sincerely hope it won’t – and that is another reason why I won’t post a lot about what is happening to my family; a) It’s hardly the stuff of entertainment and, b) My grief is my grief and my business.
This place is meant to be fun, informative, confrontational, and controversial. Not a moan-fest about how fucked my shit is at the moment.
To those who have PMd me, sent flowers to the hospital (Thanks Marty and Suzii), and offered help, thank you. I am so grateful, but I do not even know what to ask for. This is not a place I have been before and I am learning to cope as I go.
Once again, thanks to you all for your kindness.
THE THIRD POST
I brought my wife home from the hospital last night.
All three of us, her, my son and I, have been altered by the experience.
I will probably write extensively on this later, for there is much to be told, but I don’t feel much like writing about it now.
At the moment, I know true happiness and existential joy only when my wife moves her bowels – which she did last night for the first time in seven days, and one can therefore conclude that the surgeon’s work was a success in that regard.
We still have the Damoclean sword of her biopsy hanging over our heads, but we shall deal with those issues when and if they arise (as if we have a choice in the matter).
I have observed and wish to draw your attention to the following…
My family has been profoundly touched by all your good wishes and kind thoughts. The avalanche of flowers to the hospital was stunning. Offers of help have poured in, both privately and here in public, and left me shaking my head in wonder at the good-will and generosity of the people here.
Thank you all. The simplest messages and your kind thoughts gave me strength when none was left and offered me hope when all was gone. Your good wishes have humbled me.
It is very true about finding out who your mates are when your back is against the wall, your life has been irrevocably altered, and screaming blackly at the universe’s nonchalant injustice only makes your throat hurt.
I certainly know who mine now are, and some of them are, surprisingly, not at all who I imagined them to be. C’est la guerre.
I am not at all that far removed at the moment from the most fearsome and appalling thing in creation – a man who has nothing left to lose – and that exacts its own price and will take its own course.
I observe that the NSW hospital system is indeed a shitfuck of a mess and I feel sorry for the many great and good nurses and staff who have to work inside such a system. I piss gleefully in the mouths of the stinking cunts who have seemingly only joined the nursing profession because it offered a way for them to stay in this country.
I beg of you all to hold your loved ones close and hope that all of you may be spared the soul-freezing horror of seeing the person you love most in the world slipping in and out of consciousness on a hospital bed, sporting a rectal catheter, a urethral catheter, a nasal-stomach tube, a wound drain, oxygen, and four fucking cannulas, pumping in whole blood, antibiotics, and various solutions of potassium and sodium.
And all you can do is to slip a piece of ice between her parched lips now and then and tell her “It’s gonna be alright”, even if you have no fucking idea what it will be, but hold a strong belief that nothing will ever be fucking alright ever again.
My beautiful wife looks like something liberated from Auschwitz at the moment, and that breaks my heart. But I will tend to her and I believe she will mend and heal for I know her will is strong. Do not underestimate the severity of major bowel surgery (as I naively did) and imagine that once the horror is cut out all will be instantly beaut.
Thank you all yet again for your kind wishes. I hope I will be able to repay you all in some way.
BTW – my Speed Triple is seriously for sale. I have medical bills that need paying sooner rather than later. Ian is sorting that sale out for me, so PM-ing him if you’re interested in my bike is the way to go. He’s in NZ ATM, but will return next week
Once again, your kindness and good wishes are astounding. My thanks are starting to sound like a Tantric chant.
PART TWO FOLLOWS ON…
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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.