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A diary about living with cancer: part 1

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

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

Jonty Este writes:

I’ve just come from a final meeting with my surgeon to discuss the details of the operation he’ll perform on me in 11 days’ time. It’s been probably the most gruelling half hour of my adult life as he has had to detail all the risks and warn me of the likely pain to come and the possibility of side effects of surgery to remove a large malignant tumour from my rectum.

Walking out of his room (my bum still hurts a bit from having a scope pushed inside me), I’m confronted by an elderly gent who is the picture of health: sound of limb and wind, as they say. He grabs my hand: “That man there saved my life,” he said. “13 years ago, he saved my life. You’ll be fine.”

For the first time since I was diagnosed with cancer, I want to cry. I haven’t let myself be scared, but now I am.

So I’ve decided to write this. I’m a journalist and writing is how I make my living so the mechanics of sitting down in front of a screen and marshalling my thoughts is the best way for me to feel normal.

One of the great British journalists, whose work I have admired and whose genius with words I have always rather envied, was James Cameron, who worked as a TV foreign correspondent for many years before writing a regular column in The Guardian newspaper until his death in 1985.

His last column, which was headlined “A pain in the neck”, talked of how our lives are punctuated – he wrote of being told that he had an inoperable tumour, as “a semi-colon” in a sentence that began when he was born and would have it full stop when he died. A semi-colon before the final clause of his life which was heading towards that full stop.

I’ve often thought about that elegant description, which was published, I think, two days after he died and how brave it had been for him to come up with such a dispassionate, yet somehow personal analysis of his likely fate.

As cancer patients go, I’m one of the lucky ones. The odds are vastly in my favour. I’ve had my own first semi-colon, but I’m looking forward to many more sub-ordinate clauses before my full stop hoves into view.

But for all my positive mental attitude, I can’t help being a bit frightened of what’s to come.

It’s been three months since I came swimming out of the fog of anaesthesia to be told I had bowel cancer and would need surgery. I was lucky that my wife Maxine was with me, so we repaired to our local pub to digest the news, which took several beers and some tears from Max (emotionally she’s far more mature than I am, but then I gather that’s par for the course, women having a far better developed emotional intelligence than us men).

As far as I am concerned, Max has had the rough side of things, emotionally, these past few months. When you are diagnosed with a serious disease, you go into a sort of machine. You are handed from specialist to specialist, told where to go, and when, and what to expect.

You do your treatment as and when you are told. It’s not as bad as you expect – or at least it wasn’t for me – and you try to make sure it doesn’t affect your day-to-day life. The person who loves you the most has to deal with all the worries and “what-ifs”. For me, “what-if” doesn’t exist. If “what-if” happens, I’ll deal with it then.

For me, the most emotionally taxing thing has been telling the people I have had to tell. My family, my boss, my close friends. I feel guilty about the people I haven’t told. I have a beloved 80-something aunt living in Lane Cove who I have resolved to phone as soon as I finish writing this. I have a group of beloved friends, close since university days, who I should tell. Shouldn’t I?

Part of me thinks: why worry them unnecessarily – I’ll call them when I get out of hospital and tell them it’s all been sorted. For all I know they’ve had the same level of crisis in their lives and haven’t felt the need to burden me with the details. Either that or I have the most extraordinarily healthy set of friends, all of us reaching our late 40s without suffering a major health crisis.

The most extraordinary – and buoying thing – is that many of the people I have confided in have told me of a brother or a mother or a close friend who had bowel cancer treated, some of them 20 years or more ago, and haven’t looked back since. That’ll be me.

So telling people can be very therapeutic. Not always. My close mate of 20-plus years who was my best man several years ago was knocked sideways. “Jesus Christ,” he repeated several times over the phone when I told him. “Oh Jesus Christ.” In cases like that you can find yourself being the comforter: “No, it’s all good… blah, blah, good prognosis … positive … blah.”

So you’ll indulge me, I hope, if I write about myself for the next few weeks and months. Journalists are supposed to write about other people and the word “I” ought to be anathema for any self-respecting hack, but this is a part of my treatment that I can control. It’s cathartic for me – and if anyone reading this finds something they can identify with or provides them with a little comfort (or gives them a giggle  – the urge for a bit of black humour has never been far away these past months), then I’ll have done a good job.

When I found out I had cancer I called my sister in England, a nurse, to tell her. Her first words were: “Thank Christ you got it checked out.” And if there’s one clear message my personal ramblings can convey to any 40-something men reading it is this: Get yourself checked out.

If you haven’t already, make an appointment now and don’t wait for the symptoms, like I did.

But thank Christ I got it checked out.

***

• Readers may also be interested in these recent, relevant articles on bowel cancer screening

Will bowel cancer screening policy failures be an election issue?

What does your MP think about bowel cancer screening? It’s time to ask the question says one expert

• Update, 15 July: It has belatedly occurred to Croakey that Jonty’s series should run with a 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 about it. 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.

Comments 13

  1. Tim Burrowes - MuMbrella says:

    Jonty,

    A lot of us will be reading and thinking good thoughts (and admiring your honest writing too…)

    Cheers,

    Tim

  2. Rorschach says:

    Thanks for that post ! On the topic of cancer, this account from Chris Hitchens is also very moving.

  3. SimonA says:

    Hi Jonty,

    In the mid 80s my brother (still alive and healthy today) contracted cancer of the testicles, he lost one of them, did the chemo and waited. 18 months later it was back in the stomach, head and spine.

    The stomach and spine tumours were small but the one in the brain was the size of a golf ball and we were told inoperable. We refused to give up and approached the Bristol clinic in the UK.

    We learnt some important lessons.

    First and this is unbreakable, do not drink anything with milk or dairy in them. Milk has a very powerful growth hormone. The only way of killing it is boiling the milk. This means milk, cheese, chocolate and the hundreds of other foodstuff containing milk must be avoided.

    Second, in the Royal Marsden in London, the Cancer ward had two types of character, those that refused to give up even when they felt frightened, or sick or really off colour, all survived.

    The others that curled up and gave up didn’t.

    My brother decided that even though the tumour was inoperable he would do something about it. Every morning and evening, he went somewhere quiet and imagined his body attacking the tumours. He practiced so long and hard that his head ‘tingled’ where the tumour was.

    A review was scheduled 3 months after diagnosis, but after just six weeks the tumour had shrank to a quarter of its previous size.

    They operated and cut it out. He passed the 5 year point without any relapse or increase in tumour markers in 1989. He’s been clear ever since, but he’s still a pain in the arse 🙂

    I wish you all the best and my thoughts go with you

    Simon

  4. franmolloy says:

    Thanks so much for posting your story here Jonty. I sincerely hope it all works out well for you.

  5. Cancer Council says:

    Hi Jonty,

    Thanks for taking the time to share your experience. Few people realise bowel cancer is the most common internal cancer affecting men and women in Australia simply because it doesn’t get the attention of say breast or prostate cancer. So, if your blog encourages just one person to get their symptoms checked out or speak to their doctor about screening, that’s fantastic because bowel cancer is also one of the most treatable cancers.

    Once your cancer diagnosis is out in the open you will probably receive well-intentioned advice from family, friends, fellow bloggers, the media, medical professionals and health therapists. Some information will be helpful and some will be misleading or confusing. We recently published a fact sheet titled Complementary and alternative medicine: making informed decisions: http://tiny.cc/ocoz9 to help people make sense of the advice they are given.

    You, and readers of your blog, might also be interested to know you can call Cancer Council Helpline on 13 11 20 and speak to a qualified and experienced cancer nurse about any cancer-related or treatment queries you may have. We also have a range of support groups and programs for people coping with cancer – either their own diagnosis, or like Max, dealing with the diagnosis of a loved one.

    Thanks again Jonty, we wish you all the best and our thoughts are with you and your family.

  6. Nic Halley says:

    thanks for a great post Jonty. Wish you the very best.

    Nic

  7. hazedanddefused says:

    All the best Jonty and yes, this is a brilliant form of ‘therapy’.
    There are so many support services out there to access but to me, people who already knew me was a much better fit.
    I created my own ‘Therapy Circle’ when I was diagnosed – I emailed all of my closest girlfriends and told them they were about to be the people that I could sound off to – good or bad, strong or weak, hairy or bald.
    I wasn’t as brave as you this early in the piece.
    I kept it to private emailing and only blogged once I had finished treatment and decided to create my own ‘defining moment’ by running in the City2Surf (what was I thinking??!)
    I look forward to keeping up with how you are progressing. Not every thought will be positive but every thought needs to be strong.
    I hope this isn’t bad e-tiquette, but here is a link to my blog. Hope it gives you some insight into the mind of another cancer patient.
    All the best
    Fiona
    http://fiona-runningfromcancer.blogspot.com/

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