A diary about living with cancer, by Jonty Este

Jonty Este is a 48-year-old journalist living in Sydney. He was born in the UK and has been in Australia since 1988, spending most of that time as a writer and editor with The Australian newspaper. He is director of communications with the Media Alliance, the journalists’ union, where he specialises in researching and writing about the way the news media is changing.

This is the second in an irregular Croakey series about his experiences with cancer.

A pain in the arse: A diary about living with cancer

Four days until I go into hospital for the operation (on August 24) to take the tumour out of my rectum (we’re terribly formal here – in private we’ve nicknamed it “the Gerbil”). It feels a little like the Phoney War is about to draw to a close and the spring offensive is about to get underway.

I’ve got those jangly pre-battle nerves: I can’t wait to get the other side of this and I feel sure that this will be the major decisive push to beat this bloody disease into unconditional surrender.

Enough of the martial metaphors.

I’ve been thinking a lot about when I was first diagnosed with bowel cancer at the end of April. My first thought was that this was hardly more than I deserved, that this was the inevitable pay off for my often reckless career through youth and early middle age. Not so much anger or fear as a dull acceptance.

As a smoker I was relieved the cancer wasn’t in my lungs, mouth or throat. I know there is no blame attached to this wretched disease and many people who contact these cancers have never smoked but, after smoking for 30 years, I would have felt stupid and blamed myself if I could have shown a causal link between my dumb risk-taking behaviour and the disease I’d contracted.

As it was, I had an overwhelming urge to apologise to my wife.

I was (and am) so sorry for the stress and worry this is causing her. Of course, I can honestly say that having cancer isn’t my fault – although this could easily be the subject of an interesting debate (not one I intend to have, mind you) – but the fact remains that I am causing deep worry to my loved ones and for that I am truly sorry. Is that silly? I don’t think so.

That first week, while we were digesting the news and I was doing all the scans and tests to determine quite how big the tumour was and whether the lymph nodes were affected, etc, Maxine and I went out to dinner at one of our favourite restaurants. At that point cancer was our central topic of conversation and Max was worried that I was bottling up my emotions.

I think she was probably projecting her fear on to me at that point, because all I felt was a real and very positive determination to beat the disease. She told me that if I was having sleepless nights, worrying about it, I should wake her, that I should not go through this on my own. I in turn assured her that I wasn’t having any sleepless nights and that the only way I could possibly deal with the whole thing was to concentrate on all the good things I had been told.

This has been something of a motif in our discussions of the subject – she hears me talking with my friends and family, putting a positive spin on the situation and wonders if I really feel that way of whether I’m just censoring myself to save their feelings (not to mention my own).

For my part I assure her that I do, absolutely, feel that positive about things. Perhaps cancer patients develop a blinkered way of looking at their own case or perhaps, as I’ve long suspected is the case, we all see the world through a prism of our own making.

Christopher Hitchens wrote this month about his cancer and, as is his way, he wrote beautifully, with black humour, about the way cancer is always described as a “battle”.

“Allow me to inform you” he wrote, “that when you sit in a room with a set of other finalists, and kindly people bring a huge transparent bag of poison and plug it into your arm, and you either read or don’t read a book while the venom sack gradually empties itself into your system, the image of the ardent soldier or revolutionary is the very last one that will occur to you. You feel swamped with passivity and impotence: dissolving in powerlessness like a sugar lump in water”.

And as an outsider, hitherto, this was how I had assumed it would feel to have cancer: “swamped with passivity and impotence”, trapped between the medical machine that prods you, pokes you, hooks you up to bottles and machines and otherwise dictates your life – and the malignant gerbil that is bent on consuming you from the inside.

But we all see life through our own prism and I have found the past couple of months strangely empowering. It’s the biggest challenge I and my body have faced and it’s there to be won.

There have been setbacks along the way, setbacks I am assured will be temporary but are no less distressing for all that: an inability to concentrate would be close to the top of that list (it is known as “chemo-brain” and I’m told there is debate as to whether it is real or a psychosomatic reaction to the treatment, but I can assure you it is no less real for all that). This has made it hard to work effectively and this, at times, has been more stressful than the fact of the disease itself.

And I’m with Hitchens when he says the “immediate loss of Eros is a huge sacrifice”. Enough said.

But mainly the treatment thus far has been kind. I’ve gained an insight into the efficient and kindly workings of the public health system in New South Wales (certainly kindly and efficient in my case, I read differently in the press of course). I’ve gained a welcome insight into my own resilience. And I’ve gained several kilos.

I must be one of the very few cancer patients who has put on weight during the treatment. Being a vain bugger I approached the weekly weigh-in at the radio-therapy treatment with relish, expecting to have shed a few unwanted pounds, only to be told that I had in fact stacked on a few. Much to the delight of Alice, the clinic sister, who would greet my groans at the extra kilos with a beaming smile and the reminder that “it’s when you are losing weight that we get worried”.

No worries there, then.

At a friend’s house the other night for dinner, his wife returned from a separate engagement and, ever solicitous, was asking me about the treatment.

“So your belly – is that a side-effect of the chemo-therapy?” she asked, leaning forward on the sofa.

I was slightly nonplussed at this: “Sorry?” I asked, prompting her to continue: “Well, it looks a bit swollen…”, her voice began to tail off a little.

“Oh that,” I started to giggle. “No – I’ve just been eating a lot recently.”

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Part 1 of the series

Disclaimer: Please note that Jonty is telling his own personal story; if it raises issues for you or yours, please talk to a relevant health professional. Please do not make any health decisions on the basis of what you read, either in Jonty’s series or in the comments that readers post, without seeking professional advice. I will also ask someone from the cancer field to keep an eye on the posts and readers’ comments, in case any further or qualifying information is needed.