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Part 5 of journalist Jonty Este’s diary about living with cancer

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 fifth in an irregular Croakey series about his experiences with cancer. At the bottom of this post you can link to his previous articles, describing his diagnosis, pre-surgery nerves, post-surgery encounters, and the day he received some good news.

A pain in the arse: A diary about living with cancer (part 5)

Jonty Este writes:

As avid fans of Ian Fleming’s novels may recall, when James Bond tracks the nefarious Dr No to his island hideout of Crab Key, he and Honeychile Rider are locked in a luxury apartment and treated like honoured guests at a luxury spa.

It is, of course, all artifice. Bond is being kept – in preparation for his epic showdown with the master criminal – in a “mink-lined prison”.

Curmudgeon Towers, our Sydney seat, may not be lined with mink, but it boasts a big-screen TV, wireless internet access, a wealth of literature and music and I have the companionship of the marvellous Max and a parade of visitors to help pass the time.

But for all that, the Towers is, for me at the moment, still a prison and I’m going a bit stir crazy.

It’s far better being here than being stuck in a hospital ward, I hasten to add. But I’m a restless sort of a bloke. There’s a perverse torment in being visited by envoys who bring their news from the real world: who’s been an arse at work, what so-and-so said when in their cups at the pub the other night. The bovine antics of shoppers in a crowded supermarket when Max is trying to get home in a hurry.

It’s all happening out there and I’m stuck here.

Now, of course, you count your blessings – and I’m keenly aware that there are many people who would kill for the chance of spending a month of simple leisure, gravitating between lengthy reading sessions on the sofa and opiate-enhanced afternoon naps.

And it’s not that I haven’t got plenty to do – I’ve always wanted to try my hand at creative writing and this hiatus affords me the down time to do just that. But still….

After the operation I had a period, which lasted about a fortnight or so, where life consisted of a series of little victories: getting to the shower and having a shave the day after the op, going for the first tentative walks around the ward and, eventually, downstairs to the café for a real coffee. Being able to do the Herald cryptic, despite having a headful of morphine.

You measure your progress in the number of tubes being removed from your body and each one is a minor landmark: the stomach drain from my nose which frightened my friends’ small children, the catheter (ouch), the drain from my wound: “Your body will be able to absorb any more fluids from now on,” said the nurse. Yay! Back to normal.

Then you go home and luxuriate in your normal surroundings: being able to sleep in your own bed and deciding when you will get in and out of it; eating real food. Having the odd small glass of wine with dinner. Changing your own nicotine patch (have I mentioned I gave up smoking?)

I’ve been sitting in front of the computer for half an hour and by now, in the normal course of things, I’d have had at least one gasper and would be contemplating the second. There are none in the house. I dare say I could drag my bones five minutes down the road and buy some, but that would instantly tear up three weeks of abstinence, and I really don’t want to do that.

Having a major op is an ideal time to chuck away the smokes, but as you start to feel better all the justifications for giving up seem to fade as quickly as the pain and you are left to fall back on the (eminently sensible) reasoning that led you to give up in the first place. But eminently sensible reasoning and the urge for a cigarette seem to lie in different areas of the cerebral cortex.

Anyhow, I’m not going to smoke, so I might just as well resign myself to being a bit grumpy about it and have done with it.

Alert: The following few paragraphs contain drug use and mild scatological references

Adult considerations such as nicotine addiction aside, the pattern of my life appears to have regressed to that of early childhood, my role being that of both nanny and toddler.

Firstly the bag: To protect the area where a section of bowel was removed and the join needs to heal (without the passage of fecal matter through the area), the surgeon has fixed me up with an ileostomy, which is an opening in the small intestine that emerges in the front of my abdomen.

Call it a front bottom, if you like.

On this I must wear a bag for this next three months. The bag needs emptying several times a day and is changed every morning. Wipes, wet and dry, have made a reappearance in our bathroom, which now resembles the typical bathroom of young parents – and like young parents I have to confess to a certain degree of interest in the varying colour and consistency of my poo (although I draw the line at discussing this with dinner party guests. Can you imagine? –  “I had a banana mashed with milk for elevenses and it was all lumpy and yellowy afterwards…” We have to put up with this sort of conversational gambit from fond parents. Here, perhaps, is an opportunity to get my own back).

Diet has to be considered. Having left behind the baby-food menu imposed by the hospital, I’m luxuriating in some proper tucker, although there are certain items, such as nuts, which remain anathema for fairly logical reasons. I got halfway through heating up a gourmet Morroccan soup yesterday until I realised that a bowlful of whole chickpeas might prove a little percussive for my temporary digestive arrangements.

And every day at 2pm I put myself down for a sleep, otherwise I get a bit cranky in the evening. Actually, I think this has more to do with the opportunity to self-administer a little light pain-relief, which puts a couple of hours of blissful balm into the afternoon.

In conclusion, if – reading this – your reaction is to say to yourself: “This guy badly needs to get out more”, you’d be spot on.

Part 1 of the series On having a large, malignant tumour in the rectum

Part 2 of the series Pre-surgery nerves

Part 3 of the series Jonty is back from surgery

Part 4 of the series Jonty has some good news

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.

jonty pic

Comments 5

  1. geraldine lass says:

    Well done, Jonty! After my bowel resection and stoma formation in January, it took me a very long time to get my act together to sit down to anything (that j pouch made sitting for long periods a real pain) and writing took much longer than previously, as my concentration was completely shot. You are certainly powering along.

    Once I was getting used to my ileostomy, I used to get my visitors to drive me down to our local coffee shop (walking even that far not being an option at the time) rather than entertain at home, which helped me deal with the stir craziness and feel less like someone under house arrest. I also had a friend who would take me up to the pub for a quick meal on occasion when my hubby worked late – sometimes I was only out of the house for half an hour, but it made a huge difference.

    As for talking about your ‘output’ it is a bit surprising the turns your conversation can take after a few months. Plus I found that some people are very interested in the whole thing and wanted quite a bit of detail. But I agree – it certainly fills a lot more of your life than you ever thought possible and can almost mesmerise you at times. And horrify you a bit, especially if you don’t think clearly and eat the wrong things. A word to the wise – avoid mushrooms!

    Take care and take it easy.

  2. russell says:

    Jonty,
    this is all so familiar, all so recent, as I had surgery that sounds almost exactly the same as yours 7 days before you. The major difference was the lead time – I had my first colonoscopy, with diagnosis of bowel cancer, only 6 days before that.
    So when I started reading your blog in hospital after the operation I was still coming to terms with the sudden & forced changes in my life; telling my father, brothers and sons how my disease would affect their lives; the sudden disappearance of the rest of the year’s plans, and the uncertainty after that; so many questions and not many answers yet.

    Now four weeks later – pathology clear, prognosis good, recovering well, getting used to Rory the stoma and the “fun” of an ileostomy, a real appreciation of the work and support of nurses, and above all the love of a good wife.
    Some of my friends have noticed that I have lost 7kg and that I’m now only walking and not running, but I still haven’t told them the story – if Rory keeps performing like he did at a club meeting last night I think I will have to explain the source of the weird and wonderful noises that sometimes fill the quiet moments.

    Good luck, I’m looking forward to reading your latest posting in 30 years time – one that has no mention of a pain in the arse (unless it’s about politics or misadventure in Pamplona)

  3. alan thomas says:

    Hi Jonty
    Glad things are going well for you. Just consider, though, there are some of us who, like myself, cannot look forward to having the bowel re-connected.Due to the fact that my cancer was too close to my anus, I had to have said anus removed and the back entrance sewn up for good. So, Homa – my stoma – is now my mate for life! After three and a half years I am coping quite well, but you should give thanks that you will return to normal at some stage.
    Cheers and best wishes.

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