THE MOST TERRIBLE THING I HAVE EVER WRITTEN – PART THREE

THE SEVENTH POST

To be perfectly honest, I am scared.

And I do not spook easily.

Nothing that walks upon this earth frightens me. There is not a man or situation or an emergency that chills me like these mad thoughts of loss and woe.

I have had two good men die in my arms on the side of the road, I have had guns put in my mouth, and seen things I would much rather never see again, but this…this…curse that has seen fit to make itself my and my wife’s life right now, freezes my fucking marrow.

There are nights when she is asleep and my son is asleep, and I am not – for sleep will not come no matter what. I have swallowed sleeping pills and smoked enough hooch to kill a Rastafarian and sat up through it all. It’s like my brain is on permanent sentry duty.

And that is nothing but fear driving the bus I’m in.

So I endure because I have no alternative and I cannot get off.

Lynette wishes me to tell you she is moved beyond tears by you all. She can scarcely believe that such people exist. Not a day goes by that someone doesn’t call, or SMS, or email me with offers of help and in some cases advice from those who have been through this or similiar trials. She draws enormous strength from these messages of support and offers of help.

Most interestingly, mates I have known for decades have wiped us like we never existed – which, according to the Cancer Council handbook is perfectly normal. Imagine that, aye? I sometimes feel like ringing them and saying, look, it’s not contagious, you know –  but don’t bother coming over now ’cos I’ll only kick the heaving cunt out of you for shits and giggles at this stage.

Anyway, yesterday, I encouraged her to log onto the Cancer Council website. A truly great resource with a forum that would shake you to your very core. Some of the members there make Lynette’s condition appear like robust good health.

She looked and read and cried. Maybe tomorrow she’ll post an introductory post. I hope so. I think it may help her to interact with some fellow journeyers.

When she is a bit better and we have a better handle on this crap, I’m sure she will post here as well, if for no other reason than to express her profound gratitude to all of you.

Yet again, we hope to prove worthy of your support.

THE EIGHTH POST

One down…eleven to go…

Once again, I am unmanned by my wife’s courage.

Once again, I am moved beyond reason by the kindness and generosity shown to my family by the people here.

My wife has completed her first round of chemotherapy.
Another mountain has been summited.
And it transpired thus…

We arrived at the chemo unit for the first cycle and Lynette was asked to sit in the big comfy chair, while I perched like a tattooed condor on the seat next to her and observed the coming of the cytotoxins.

Trained chemotherapy nurses (in our case, a fabulously caring and empathic middle-aged homosexual man) don the purple (for purple is the colour of cytotoxin) gloves, mask, and gown and prepare the chemicals that will roam throughout my wife’s body.

First, her implanted Portacath is accessed by a hooked needle (this was the only time she flinched) and flushed with glucose solution. Then the first cytotoxin is given. It is a small syringe full of colourless liquid.

I ask her if she feels anything strange, my eyes like dinner plates, because I know full well that what they are injecting her with is a fucking horrifying poison specifically designed to kill fast-growing human cells.

She tells me she feels nothing. I ask the nurse if she is meant to feel anything. He offers the stock cancer phrase: “Everyone is different.”

The next arrival is an IV bag full of another colourless cytotoxin. It is hooked to a stand, and docked with her Portacath, and away the fuck we go. It will take three hours to administer.

In the room, there are several other cancer sufferers. Some old, some young, some bald, some apparently healthy. Some are being injected with massive syringes of red liquid. Others are being drip-fed from IV bags cloaked in black lightproof plastic. None of us speak to each other, but all acknowledge each other’s presence with eyes that speak volumes. Carers (for that is what I am, apparently) exchange looks with carers and cancer sufferers with cancer sufferers. I must look particularly spooky because not many people look too long at me. Little do they know that I am probably the most frightened person in the room.

No-one is vomiting. Some are dozing. Some are reading. My wife says she feels a little “warm” but nothing unpleasant or nauseous; they did give her a shot of some anti-nausea stuff at the start.

I also appear to be the only person in the room who has all of his dials turned to 10 and is revving in the red. No big deal. I’ve felt like that for weeks now so it doesn’t bother me all that much anymore – certainly, it’s gonna fuck someone’s shit up eventually, but at the moment I’m a happily ticking bomb.

At the end of the three hours, my wife is fitted with her take-home cytotoxin – a fascinating device that looks like a baby’s bottle with a beige balloon inside it. The balloon slowly releases the cytotoxin into my wife, via her Portacath, and it lives in a bumbag attached to her waist. She can shower and she can sleep with it, after I made a few adjustments to the shower and the bed.

I am given a sizeable purple box marked Hazardous Drugs Spill Kit and a brief description of what must happen if for some reason her bottle explodes and sprays its poison all over me, my son, the dog, etc.

We go home. I am still dialled all the way into the red, anticipating Lynette’s promised side effects. I have been repeatedly told that if her temperature hits 38 degrees, I am to head for the nearest Emergency Department with the speed of a thousand raped apes. I am convinced I can get there much, much faster if need be.

I ask her how she is. I take her temperature every half hour. All is normal.

She is not allowed anything cold (or she may have trouble breathing all of a sudden) and must not approach the fridge or remove anything from it. All her drinks and food must be room temp or warmer. This is do-able and a bit strange. She must flush the toilet twice each time. She now has a second big bag of drugs that have nothing to do with her original big bag of drugs. The first bag was to do with her operation. The second is to do with her chemotherapy.

I have my own bag.

This all occurred on Monday. Today, at 3pm, she was disconnected from the baby bottle full of poison and told to return in a fortnight for a blood test and Cycle Two.

She says she feels a little strange, but other than a brief bout of the runs and a bit of difficulty sleeping, seems alright. Of course, we both know and have been told that the cytotoxins are cumulative and we expect the side-effects to get more pronounced as we go along.

That is as it will be. Bring that motherfucking shit on, then. We climbed one mountain. We’ll certainly make every human effort to climb the other 11.

  

THE NINTH POST

 

TO ALL OF YOU, FROM MY WIFE…

Hi Everyone.

I guess you all know who I am by now and all about my illness. I do not have the gift of writing my beloved husband has, but I will try to convey my thoughts to all of you in the only way I know how.

I want to give my deepest thanks to each and every one of you for your unwavering support to my family at this difficult time in our lives. I have never been so completely overwhelmed by the volume of love and support sent by so many who have never even met me. This has shown me what a wonderful, caring and fantastic bunch of people you all are. It makes my heart sing to know my husband has such a wonderful group of people to play with, because he truly is the finest man that you could ever meet.

Your well wishes have only strengthened my will to beat this illness and have given my Boris the friendship he so desperately needed at this time to help me get through this ordeal. I know it is not over yet and I have some way to go, but I am determined to get well.

I sincerely hope that I get to meet and thank each and every one of you personally some day in the future. There are not enough words for me to express how I feel about you all.

Thank you all from the deepest part of my heart.

Mrs Boris (aka Lynette)

It would seem my beloved wife is feeling a bit cocky this morning.

We experienced yet another fright last week when meeting with her oncologist – an inscrutable Chinese with more initials after his name than are contained in his entire alphabet.

“Your CEA reading is not right,” he stated flatly. Oncologists are emotionless creatures, seemingly wrapped entirely in the armour of complexity that is their strain of medicine.

“What is CEA?” I asked, knowing that oncologists never volunteer information, but like computers, will only answer direct queries.

“It is a protein produced naturally by the body.”

“And why is my wife’s not right?”

“Well,” he said. “In some circumstances, we would expect the CEA reading to go down after the cancer is removed from the body, since it is a protein that is overproduced when there is cancer present in the system.”

“Does this mean she still has cancer?” I asked, while my wife began to tremble like a leaf. She’s somewhat emotionally fragile at the moment and all my dials have been turned to 10 for some time. So while I am also kinda fragile, my coping mechanisms are all working fine.

“Not necessarily,” he said. “Everyone is different. The body may just be overproducing this protein because it wants to. It may mean there is cancer still there, or it may mean any of ten other things.”

“What are we to do?”

“Nothing,” he said. “We shall keep an eye on it and see what happens after the fourth session of chemo. If it doesn’t go down then, we shall do other tests.”

As you can imagine, the next three days were rather sleepless. And we presented ourselves for her second chemo treatement the following Monday.
As she was being plugged in, I asked to see her most recent blood tests (she gets a blood test two days before each chemo treatment and the oncologist was looking at the CEA reading from before her first treatment.)

Her first reading was 86.5. Her more recent reading was 62.3. Something inside melted in relief. I showed my wife. She cried in relief because she is a girl and they are allowed to cry in public. The fucking number was going down.

Amazingly, in the days following her second round of chemo, the ONLY side effect she experienced this time was a little bit of fatigue. Uncle sent me some bracelets that fight nausea by pressing on the acupuncture points and they work. Lynette hasn’t taken a single chemical to fight nausea. There has been no bottom-peeing either.

I am perturbed and have several times wanted to call the oncology cunts to ask why the fuck my wife isn’t sick. She’s meant to be. You said she would be and the first time she was.

Now she is not sick and the period in which she is normally ill (two days post chemo) is over. She normally gets stronger and healthier day after day…until the next session.

I am grateful for this and will take happiness where I can find it. The fact that I am on a first name basis with oncology nurses is disturbing.

I echo my wife’s gratitude to you all.

One day I shall find a way to repay this debt of kindness and concern.

Thank you.

 

THE TENTH POST

 

My wife has now undergone three chemotherapy cycles. Her fourth is next Monday. That then leaves eight more. Tomorrow we go to see her oncologist to discuss how things are going.

From what I can tell, things are going like this…

My wife is my hero. I could not endure what she has endured and continues to endure – and with such good grace and humour. I see the pain in her eyes and am humbled to see her smile straight on through it all.

Our GP continues to be an immense source of comfort and knowledge and support. We see him regularly and just last week we were discussing the difficulties Lynette is having sleeping. It is especially hard for her while she is “plugged in” during chemo week. For those two nights when she is attached to her baby-bottle full of poison, Mogadon is the go. For other nights a much milder sedative, Temazepam, is fine.

Naturally, we all understand that these sleeping pills are a temporary bandaid – sleep is vital during chemotherapy as the body needs to rest and rebuild what is being destroyed, but paradoxically, the cytotoxin is supplied via some two litres of glucose – the adult equivalent of red cordial. The only way she can get to sleep is with pills at the moment.

The GP recommended she see a therapist (who is also a GP and psychologist and a woman who has had cancer) and we both think this is a great idea and will make the appointments forthwith. It can do nothing but help and I happen to believe in this kind of assistance that will teach Lynette coping skills when the monsters come in the dark. She says it is worst for her when she is alone and neither I nor the boy are there.

Her physical side effects have been much as the doctors have predicted – spasmodic numbness in the extremities, nausea (which we have successfully combated with Uncle’s amazing pressure point bracelets – and the less chemicals she has to take, the better. Uncle, I owe you more than I can ever repay you for that kindness alone), and immense and sudden fatigue.

 

These symptoms are at their peak during chemo-week then gradually get better. She is also intensely sensitive to cold and can suffer a horrible choking sensation if she touches anything cold during chemo week.

Other than that, it’s not as dreadful as we thought it may be, though conventional wisdom tells us it will get worse as the chemotherapy progresses. We shall see.

At the moment, she is never at any more than 75 per cent of her old self. She tells me she just generally feels crap.

She is yet to return to work and her income protection has kicked in and while things are tight, we should manage. I’ve got to write more freelance stuff, but I find my motivation is not what it should be. Instead of submitting story ideas to magazines as I once did, I just sit on my arse and wait for them to come to me – which is a slow way of earning money, though I am getting offers from Rolling Stone, Top Gear, and a few other mags I don’t mind having a byline in – but that’s how I’m feeling at the moment.

The recent Twisty Bits was more of an experiment to see if I could still get a laugh out of the reader. I may try a few more in that vein. Kicking Mouchie and Ratman to bits is very much like shooting fish in a barrel and I am sometimes scared that if I really let loose on them in a column (given what I know and how I feel) there would be no end to it – and AMCN doesn’t pay me to do MA-watch or MRAVic-watch. It doesn’t mean I’ll leave them alone, but it’s boring to write about their miserable failings very often. So to all the good people who send me inside information, please continue to do so. It really helps.

But in real terms all of that is nothing but a shiteful sideshow to the rest of my life at the moment. My movements and rides are circumscribed by my wife’s treatment and responses to it – I simply cannot and will not allow her to travel this road alone – and so many of my normal runs and journeys will need to wait in line. I apologise to all of those whom I have let down in this regard (Scrambles and Boon especially – we shall ride to Freo and visit Bon Scott’s grave, brothers, but not just yet).

So there we are. Once again, I lack the words to express my thanks to everyone who has helped and offered support to us. We will endeavour to prove ourselves worthy of such staunch supporters.

Thank you.

 

PART FOUR FOLLOWS ON…