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cancer

Aug 27, 2010

A diary about living with cancer: Jonty Este is back from surgery...

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 w

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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 third in an irregular Croakey series about his experiences with cancer.

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

There was a moment, on Tuesday morning as I checked in for my bowel operation, that I instinctively knew that things were going to go well.

It was one of those little ice-breaking episodes that lightens the mood from foreboding to a frank realisation that the god who looks after drunks and little children would keep half an eye on me as well.

It happened soon after the receptionist at St Vincent’s told me to follow him and change into a surgical gown.

At that point he could have told me anything and I don’t know whether I’d have taken it in. As it was, he handed me a pile of clothes – a gown, an item of hugely unattractive paper underwear and a pair weird blue plastic bags with drawstrings.

The gown and underwear were straightforward enough – although there’s something unsettling about those surgical clothes that effectively reduce you to the words on your name tag, making you feel like meat bound for the butcher’s block – which, with vast apologies to my surgical team – is effectively what you are.

The months of preparation are over. You are about to hand yourself over to a group of relative strangers to do to you something profound and frightening and completely outside your realm of experience. You are powerless, half naked and weak.

Except that I couldn’t work out what to do with those blue drawstring bags.

I dithered for a couple of minutes and then reached the conclusion that since there were two of these things, they must belong on my feet. So that’s where I put them.

I shuffled out to the reception desk, past which I could see my wife Maxine and my sister Penny looking pale and choked. This was the point at which I was to say goodbye, and go through the doors past which they couldn’t follow me.

But first I had to get past the group of nurses laughing at the bloke who had put two surgical hats on his feet.

There were no reasons for me to feel silly – there were two of these and last I looked I only had one head – and that still had my regular hat on it.

But the moment gave us all a giggle and I went into surgery with a smile on my face while Penny and Max went off chortling for a coffee.

Suddenly it became less of an ordeal and more something that we’d laugh about afterwards.

Of course, my first thoughts on coming round from the general anaesthetic were not of amusing anecdotes concerning surgical hats. My first thoughts were: “Ouch” and then: “That hurts”.

Not surprisingly I’ve been giving a bit of thought during the past three days to pain as a concept. How does one rate pain?

We all know that some pain is more acute than others, that when your dentist is doing root canal and says this is likely to hurt a little, it is actually going to hurt more profoundly than, say, stubbing your toe or even biting into something cold on the filling you really ought to have had replaced last year.

Since I had my operation on Tuesday, I’ve been asked four or five times a day to rate my level of pain on a scale of one to ten: one being completely pain-free and ten being … what? Logic dictates that this means something along the lines of “completely overwhelmed with agony, on the point of passing out – a little like that Giordano Bruno bloke in the Carravagio miniseries on TV last week, who was burned to death for heresy”.

According to the SBS drama/doco, Bruno expressed his assessment of pain by screaming rather a lot and, happily for my carers at St Vincent’s, I wasn’t at anywhere that level. But having just removed about a foot of bowel through an 18-inch cut in my abdomen, the team in the recovery ward was keen to find out how effective was the pain relief they were offering me.

A snap judgement told me it was in my interests to let them know that, while I appreciated their efforts and all, it would be to everyone’s benefit were they to turn it up a notch. Or two.

So I said seven out of ten, which is probably a bit melodramatic, if you are judging Bruno’s death agony at about nine out of ten (is there such a thing as a ten out of ten on the pain scale? I don’t think I want to know…)

But when I heard someone say “let’s increase his morphine to the next level”, I knew it was the right answer. Everyone was happy and they upped my morphine. A good result.

The next day a medical student came round to ask me to take part in some research into pain relief and, having ascertained that this would not involve messing with my pain relief regime in any way, I was glad to acquiesce.

He asked me a bunch of questions based on my perceptions of pain and we got back to this discussion of scales of pain, including my memories of the various levels of pain I had experienced and the expectations I had before I went into hospital of the sort of pain I would soon be experiencing.

Conceptually it was a tricky question to answer and I could see my young med student’s eyes rolling as I discussed how I might most logically answer his question: “Given than I’ve just had a major op and have an 18-inch scar in my gut, I always accepted that I might have some pain,” I told him. “And since the pain I’m experiencing is not as bad as I thought it might be, logically I should answer that question in the negative.”

This rather threw him. As far as I could see there was no room for a negative rating on his survey form.

So I had quite a lot of childish fun at the med student’s expense and if I gave him a bit of a headache … well, that’s a reasonable trade-off, if you think about it.

For me the biggest pain is being hooked up to so many tubes and machines-that-go-ping, that I can’t move without help. The tube that comes out of my nose means I am still a “nil-by-mouth” patient after several days, with the prospect of two or three days more in this unenviable state.

People will keep visiting with sweets and biscuits, bless them, while my wife and my sister – who are, like me, considerable foodies – like to discuss what they are going to eat once they have left my bedside. Meanwhile I am subsisting on a cup of water which I apply with a swab and which keeps my mouth moist.

As I write this I am looking at a rather toothsome packet of home-made chocolate chip cookies, brought in by my colleague Mary, which I would give to the nurses except that, damn it, I want to eat them myself.

Reflecting on the past few days (and setting pain aside), I can say it has been a profoundly satisfying experience in a lot of ways. To hear my father’s voice when I rang to let him know how I was doing was one of the most uplifting feelings I have had of late: (he said it was “wonderful, wonderful, wonderful, wonderful” to be talking to me and hear I was doing okay).

Seeing Maxine bounce around with joy after hearing the operation had gone well made me feel pretty wonderful in my turn. As I have written here, I have felt guilty that I have put my loved ones through such a trauma – to watch them celebrate what appears, touch wood, to be a happy ending is joyous.

If all goes well now, I will get the pathology results I want, which will tell me they have found no evidence of spread or any cancerous tissue outside of the actual tumour. I should know about this in the next few days, at which point the temptation to put champagne into the drip bottle will be severe. I may even break out one of those cookies…

jonty pic

Part 1 of the series

Part 2 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.

8 comments

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8 thoughts on “A diary about living with cancer: Jonty Este is back from surgery…

  1. Gerry Hiles

    Best wishes, I think I can comment validly, having had three bouts of cancer myself – prostate, lung, and cancer in my ribs (all clear for about eight years I had them in three successive years) so to some extent I know what you are going through, though surgery itself never bothered me – I’d had three previous operations (a sort of hobby of mine) so I suppose it’s a matter of familiarity.

    As regards pain scale? Well it is subjective and also something you get used to and so what was torture as a kid becomes more and more trivial, as it has to in an imperfect world. However …

    Scaling could be made objective – and cruel -by subjecting everyone to maximum pain. Then everyone would have a 10 for comparison.

    As it happens I have my own 10, which derives from an abscess in my ear about 40 years ago. I became delerious and slipped in and out of consciousness, so I have only fragments of memory – except of the pain beforehand. So when I get asked how bad the pain is I scale it against that intensity, which I’ve come close to twice since, notably when the spinal block wore off after my pneumonectomy, which I scored as 10 and didn’t quibble 9.5.

    Comparatively my prostatectomy was a breeze at about 8, but I said higher to make sure I got the morphine.

    Because of athritis I have a constant of about 2 and mainly live with it, but report 7 if it gets to 5 on occasions.

    The point being two-fold: past experience and immediate experience. If it’s the first time of “the worst”, then say 8-10. If from past experience it feels like 6, don’t downplay it. It hurts like hell anyway, so say 7-8 if you have to have relief, if you are unsure of whatever the protocol is but: http://www.bing.com/search?q=pain+score+scale&FORM=WLETSS&PC=WLEM&MKT=en-au which I have just looked up and there is more in Bing, Google, etc..

    It is not lying. It is just playing safe. It’s your pain and only you know how it feels now.

  2. ross.cornwill@gmail.com

    Hi there glad you are recovering.

    I recently developed a twisted bowel at around 10:30 on evening. After constant pain for 16 hours I can tell you there is a pain factor of 10. Never have I felt pain like it, and hope to never again. Fixed up with 1 meter of bowel removed.

    Ross

  3. Jenny Morris

    Bravo, Jonty. A really great piece, thanks for sharing your journey with us in this way.
    Sending you best wishes for a speedy recovery and healing, and many, many more commas in your story – all good ones.

  4. alan thomas

    Hi, welcome to the club! You haven’t said if you have also lost your a—hole which would make you officially a colostomate – I hate that term – better to say that you are a person with a colostomy! I had this over 3 years ago and am coping really well.
    Plenty of post operative support is available so nothing to fear.

  5. grimace

    You can get to 10 on the pain scale. It happens when a graduate nurse pulls your catheter out without deflating the balloon which holds it in place on the inside of your bladder.

  6. frnklinpercival

    Hey chap, can I send you best wishes and good news from three years post-operative.

    Eighteen inch scar, check, 8″ bowel removed, check. Colonoscopy once a year for the first three, with occasional polypectomy.

    Attitude helps a great deal, also. Stay you very well.

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