Liz Mullinar – survivor of child abuse

Liz Mullinar
Liz Mullinar at Mayumarri in the Hunter Valley

Re-post: First published 23 May 2010. It means a great deal to me that I still receive correspondence from people about this story. With the NSW Special Commission and Royal Commission into Institutional Responses into Child Sexual Abuse I thought it might be timely to share again.

I don’t really believe in angels, but if I did, Liz Mullinar would surely be one.  Warm, funny, smiley … smart, tough, feisty.  A woman of two careers.  The first long and very successful career as Australia’s leading casting agent for film and television – from Picnic At Hanging Rock, My Brilliant Career and Dead Calm, to Shine and Little Fish – it is an exhaustive list of fine Australian cinema and television, and many spectacular careers, that had their start in the hands of Liz Mullinar  (I’m looking at you, Cate, and you, Geoffrey.)

Liz Mullinar’s second career was unexpected, and perhaps unsought.  After becoming ill in the early 90’s, for no known reason, Liz began a journey of recognition.  Understanding that having been sexually abused as a child was something that she would have to accept in order to become well again.  But how do you accept something as truly terrible as child sexual abuse and trauma?  How do you find the courage to accept it and admit it, when your life has revolved around feeling … inconsequential.

I left a very rainy day on the coast to drive into the hidden parts of the Hunter Valley, “We are sign-posted from Quorrobolong!” Indeed.  If you are driving from the Cessnock side, not from my side of the Watagan mountains.  “Just call if you need directions … here are my home and mobile phone numbers …”  Great.  No signal.  Sigh.  Nearly an hour late, I finally drove up the correct dirt road, around bends, up and over the hill … and down to one of the most beautiful, peaceful locations I’ve seen.  Mayumarri (now the Heal For Life Foundation).  Peace.

“If you look around you, you’ll notice you can’t see any other homes at all.  This is important.  If you need to scream as part of your healing, you don’t want the neighbours calling the police!”

Liz was one of the co-founders of ASCA – Advocates for Survivors of Child Abuse.  She walked away from her very successful business after realising how little was being done to help people, just like herself, whose lives were damaged by childhood trauma.

Mayumarri is beautiful.  It is picturesque and tranquil.  Would have made a good movie set.  I had read a PhD thesis which includes an interview with Liz in which the author describes feeling like an ‘intruder’, and it gives the impression that here is a woman who will only talk to you, tell her story, against her will.  Grudgingly.  Because she has to for a ‘greater good’.  That she is extremely guarded. Given her childhood abuse it would be easy to assume this is true, and understandably so.  And perhaps, once upon a time, she was.  But not now.  I don’t know that Liz Mullinar.

I arrive, late, at Mayumarri with my family in tow.  The kids’ soccer had been cancelled, and I thought they might enjoy romping around a Hunter Valley property, so I quickly called to seek permission for them to accompany me.  “Of course!”, said Debbie – one of the Mayumarri volunteers, “We’re expecting you for lunch!”  As I parked the car and started to remove recording equipment, cameras, kids, bags of European biscuits I had brought for Liz … a small, elegant, silver-blonde woman came striding towards me, all beaming smile and warm manner to wrap us all up in a warm welcoming hug, “I’m Liz!  Come on, lunch is ready!”

Before we knew it, we were in the enormous earthy space of the main Mayumarri building – a log fire roaring on one side, a bustle of activity in the vast kitchen, and a massive timber table set for lunch for about 30 very hungry people who were all rather pleased to see that I’d finally arrived.  They could eat!  After a communal simple ‘grace’ of thanks, each member of Mayumarri introduced themselves to me.  Carers.  Facilitators.  Guests.

I explained why I was there, and that no-one had to talk to me, to be interviewed, unless they were entirely happy about it.  Comfortable would be the wrong word, how could you ever be comfortable telling a stranger that you’d been sexually or emotionally abused as a child.  Happy is probably the wrong word, too.  I offered that we would stop our interviews at anytime.  That I would delete or edit anything they may have said to me that they perhaps wished they hadn’t. That their privacy and identities would be protected.  Yet everyone in that warm room wanted to talk.  Nearly everyone was happy to be photographed for my stories.

I conducted my interviews in the Mayumarri chapel.  An octagonal building made of rammed earth, timber and glass.  A warm room full of comfortable chairs, rugs … and tissues.  More boxes of tissues than I’ve ever seen.  If these walls could talk, they’d cry.  Yet it is not a sad place.  It’s a safe and loving space.

The chapel at Mayumarri

The youngest woman I interviewed was just 17.  The oldest was 67.  And there was Harry, too.  Harry is a big bear of a man.  Now a carer and facilitator, Harry first came to Mayumarri to heal.  Right there is another myth busted.  Mayumarri is no Dog’s Head Harbour, and Liz Mullinar is no Jenny Field.

Mayumarri is for everyone who needs it – man, woman, young, old, confused, broken, bereft. There are house rules: no drugs, no alcohol, no mobile phones (yes, really), no television, no magazines, no anger, no abuse, no power-plays.  Guests arrive at Mayumarri on a Sunday afternoon, and stay until the following Friday.  Behaviour agreements are drawn up so that everybody knows what everybody else needs to feel safe.  You don’t like people standing behind you?  No problem.

The one recurring theme in all of my interviews – aside from the obvious link of childhood sexual abuse and trauma – is one of trying to survive when feeling powerless.  Useless.  Pointless.  Unloved. “How can I care about myself when no-one else does?”  Suicide is mentioned.  A lot.  By young and old.  The dark-eyed Cassie tells me about how she would cut herself in order to feel something. Anything.  Kira tells me about her addiction to crack cocaine.  Kira?  She’s so beautiful, and smart … how could someone like Kira fall so far?  Kristina.  Her isolation from her children and grandchildren.  Harry.  Useless Harry who would never amount to much. Harry? Harry saves lives!  Tears are shed.  A lot.  I wondered why I couldn’t see the negatives these people had seen in themselves. The failings they had convinced themselves everyone else saw.  As I spoke with each one of them, all I could see were their strengths.  And there were many.  Do I live with rose-coloured glasses on?  No.  We all have our stories.  Some of us aren’t brave enough to tell them.

But here at Mayumarri, somehow, over the course of a week, or many weeks and return visits, the damage is undone.  The healing begins.  People who’ve lived their lives in pain and shame come to know their true selves, and their true worth.  And perhaps most importantly, to love and accept love.  Forgetting is impossible, that will never happen.  But acknowledgement and acceptance gives back a little power to those whose power had been taken from them.  By force.  I asked one of the two Chloes, “Is the hardest part letting people love YOU?”  I could see her fight the lifelong desire to prickle as she looked at me for a moment, and quietly said, “Yes.”  I see you, Chloe.

I had interviewed Liz Mullinar once before.  As we were having lunch she loudly proclaimed, “This is Carol.  A few months ago she did the best interview with me I’ve ever done. Ever!”  Thank you, Liz.  It is a great privilege to be able to come to your safe place, to share a meal with you and the Mayumarri people, and to have you trust me to share your stories.  I didn’t feel like an intruder at Mayumarri.  I asked my husband afterwards what he’d been expecting, and he said that he had thought he would feel like we shouldn’t be there.  Strangers.  Intruders. But I knew as soon as I saw Liz striding up that hill that we were, in fact, very welcome.

Mayumarri

I didn’t see my husband or kids for the next four hours.  They were wrapped up in warm hugs and sweet biscuits and cups of tea, venturing to the Mayumarri lake where canoes are kept by the barn.  They got rained on.  Which meant more warm drinks and sweet biscuits and hugs and throwing logs on the open fire.

I know we were welcome.  I think my boys were their own little force for good, too.  Mr 8 said to me, “Mummy, the people there are so kind, it’s like they’d never be angry!”  I don’t think my boys understand the tiny little bit of healing balm their bright, open faces, their big laughs and warm hugs offered in return.

They don’t claim to be mental health professionals at Mayumarri.  They don’t pretend to be anything they’re not.  I found them to be so much more.  They offer everything that our wonderful Australian health services (and we are very lucky in this country) don’t offer.  Time.  Warmth.  Compassion.  Love.  Healing.  There is no prescription for what is offered at Mayumarri.  But maybe there should be.

Mayumarri
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Malcolm Turnbull. Or, too much fun.

mal.com2

On the eve of Malcolm Turnbull’s visit to Newcastle, the New Zealand parliament voted to redefine marriage as a union between two people, becoming the first country in the Asia-Pacific region to do so.

It’s one of the great privileges of my job that I get to run around inside some really interesting minds.

Politicians are a curious lot because trying to get them to tell you what they REALLY think can be an enormous challenge, but also immense fun. Of course, it is frequently their job (as is mine) to NOT tell you what they (or I) really think.

As always, we ABC folks are always accused of being ‘card-carrying lefties’ – amusing given my history of voting every which way but redneck.

I will never truly know Malcolm Turnbull, but I quite like him. He would definitely be on my dinner party list.

I spoke with him the day after the New Zealand government voted to give full marriage rights to same-sex couples.

CAROL DUNCAN: Why do we still not have this right for Australians?

MALCOLM TURNBULL: We can (do this here) but as you know the parliament considered the matter last year and voted against it. But it’s open to coming back again.

There is certainly much more rapid change in this area than many of us, including myself, had anticipated. In addition to New Zealand legislating, the UK is in the process of doing so, France has done so, there are now I believe 10 US states where gay marriage is legal so the trend is only going one way. I think the changes in New Zealand and the UK are going to have a very big impact (on same sex marriage legislation in Australia).

If you go back to the 1850s when there was a case in England called Hyde v Hyde in which a judge gave what became the classic definition of marriage for a long time which is a permanent union between a man and a woman. He did so on the basis that this was what was accepted in what he described as ‘all of Christendom’. We wouldn’t use that term any more but if you were sitting in a court in London or anywhere else today and you had to ask yourself ‘what is the accepted definition of a marriage in the western world, or in countries of a dominant Christian tradition, however you wanted to define it, you certainly couldn’t say it is a permanent union betwewen a man and a woman because there are so many of those countries, very substantial and important countries, which recognise gay marriage, so there has been a big change.

I would have said this was going to take a long time but I think it will happen sooner rather than later. It will become increasingly difficult for Australia to maintain opposition to arrangements which are accepted in countries with which we are so close, which we have so many people going to and from, so many people coming here from New Zealand. I think there has been a big seachange in this and it’s happened incredibly rapidly, within the space of a couple of years.”

CAROL DUNCAN: It is often suggested that you don’t actually believe in the policy on broadband that you are having to present for the coalition, or that you don’t really believe it is the best option for Australians.

MALCOLM TURNBULL: It is, I have absolutely no doubt about it. If I wasn’t a politician, if I was back in my old job in the business world and the government, any government, asked me to advise on what the best course of action would be, I would describe exactly what our policy is because you get the right balance between the level of investment, affordability – being able to price the internet access at a price that people can afford, and speed, giving people the services that they need. So I think we’ve got the balance right.”

The problem with Labor’s scheme, let’s be quite frank about this, Labor has said they’re going to run fibre optic cable into 93% of Australian households. We criticised it as being too expensive. We actually think this project will cost $94bn, taking a very long time, it’s running way behind schedule. After four years they’ve got less than 20,000 people connected to the fibre and they’ll be lucky by June 30 to meet 15% of their targets.

CAROL DUNCAN: In 2003, Telstra executives told a Senate inquiry that the copper network had to be replaced, that it was ‘five minutes to midnight’ for the copper network. Should we be relying on the copper network at all for such a massive piece of infrastructure?

MALCOLM TURNBULL: You’ve got to remember that under our scheme we are replacing almost all of the copper. The only copper that would remain in the customer access network is the last four or five hundred metres to the premise, and the reason for not replacing that is that as long as it is in good condition, as long as the length is short, you can deliver very high speed broadband – up to 100 Mbps – so you can deliver very high speed broadband, certainly more than fast enough for what people want and what people value, but you save a gigantic amount.

The depressing thing about these networks is that it’s really the last mile, it’s actually less than a mile, that costs all the money because it’s so labour intensive.

CAROL DUNCAN: What about those areas where the existing copper network, in some cases up to 100 years old, will not be good enough for the job?

MALCOLM TURNBULL: If that’s the case, your area would be a candidate for either having that copper remediated at the time of the build, and we’ve taken account of that in our policy, or if you’ve got areas that have got endemic problems in terms of maintenance and water penetration then you may replace them with fibre and do so now.

So you just have to be pragmatic and practical about it but the changes are literally, you’re talking about saving $60bn.”

CAROL DUNCAN: In January 2013, Bloomberg’s list of international internet speeds indicated that large parts of the world are already accessing speeds faster than 25Mbps, so is cutting the fibre at the node to save money now simply a false economy if over the longer term we have to continue to make very large investments in the very near future to upgrade the coalition’s alternative NBN?

MALCOLM TURNBULL: No, I don’t believe you’ll need upgrades in the very near future.

Most people will get by 2016 on the fixed line upgraded network 50Mbps or better. We’ve said 25 Mbps is the minimum, that is the direction that we will give NBNCo as the minimum, so they have to do it on the basis that nobody gets less than that.

Our goal, and our direction to NBNCo will be that by 2019 to ensure that at least 90% of the people on that network have not less than 50Mbps.

CAROL DUNCAN: Singapore offers a download speed of about 50Mbps on average, Japan is rolling out a 1Gigabit (1000Mbps) network …

MALCOLM TURNBULL: Which is useless by the way, for a residential customer, it’s a marketing gimmick.

CAROL DUNCAN: Should we be building two networks, one for industry and research, the other for domestic users or simply investing one big network to cater for all needs?

MALCOLM TURNBULL: If your question is ‘should you be providing higher rates of bandwidth to industry and research and businesses than you do to residential consumers’ the answer is obviously yes, because they’ve got market for it.

You can spend a gigantic amount of money, $94bn, and connect every cottage, every flat and every townhouse in Australia to a fibre optic cable that’s capable of running at 100 Mbps or ultimately at 1Gb, the vast majority of those customers have no use for, no value for and will not pay you for those very high speed services. So you’re making a gigantic investment upon which you can get no return and as a consequence you end up having to charge people a lot more.

You’ve got to remember that under Labor’s plan, this is not my figure, this is what they have said in their own documents given to the ACCC and their own corporate plan ‘wholesale prices will treble over the next 10 years for broadband access’. Now they’ve (prices) been coming down for the last 10 years and it’s no wonder they’ll go up because if you’re investing so much money in the network then you’ve got to get a return on it.

“I think a very important thing to bear in mind is that we’ve got to be practical and hard-headed about this. This is serious money. We’re talking about all the other infrastructure investments we need to make in Australia. The great virtue of telecoms networks is that, unlike a bridge, you can expand them incrementally, bit by bit.”

CAORL DUNCAN: Could it be expected that to delay the full roll out of fibre will increase future cost of completing the equivalent work as designed into the government’s NBN? We often see major cost blow-outs with delays in major infrastructure construction across the country.

MALCOLM TURNBULL: Let’s assume that we can spend $900 on average to get a premise up to the most part 50Mbps but no-one less than 25Mbps, and we can do that now. And let’s assume it’s going to take us the best part of another $3,000 to get them up to 100Mbps and up to 1Gb with FTTP, but let’s assume that there’s not going to be any demand for that very high speed in those residential areas for, say, 10 years, I’m saying you would be better off postponing that investment, keeping that extra $3,000 in your pocket, earning a return on it somewhere else or not having to borrow it, and then when the demand is there making the investment then. It’s just labour costs, labour costs will rise with the price of inflation but so will everything else.

But the big difference is if you build a bridge you cannot build a bridge with demand just 10 years ahead because you can’t just keep adding lanes every 10 years. You’ve got to think ahead 30, 40, 50 years.

With a telecoms network, you’ve got the ability to build it for now and the foreseeable future, and you’ve got the ability to upgrade it progressively over time as demands change, and you don’t really know what the demand’s going to be, and above all as technologies develop. And so while postponing investment until it’s needed may seem a bit hard-headed and sounding too much like a canny accountant than a visionary politician, it actually makes great sense because if you postpone that investment until it’s needed the opportunity cost on the money that you haven’t invested and that would have earned no return in that time, so you’ve got your investment in your pocket or doing something else, but also when you do come to invest you’re using the latest technology and that’s a powerful argument to take a more steady and businesslike approach to it.”

All politicians are susceptible to grand gestures, but this is a case where you can actually be heard-headed, pragmatic, make the network affordable for both the taxpayer and the consumer and have the advantage of the best technology when you need it.

CAROL DUNCAN: Why do you think that a lot of social media commentators suggest that you don’t actually believe in the broadband policy that you are having to sell as Shadow Communications Minister?

MALCOLM TURNBULL: I have no idea. I think they’re transferring their own views to me.

I can assure you that I do (believe in the coalition broadband policy).

I’ve been involved in the internet in Australia since it really got going, I was one of the co-founders of Ozemail. I’m digitally connected, I’m online a lot, I’m not a luddite, but I’m just saying to you that you can achieve everything you want to do, get everybody online quickly and affordably, I mean remember this – people in the bottom 20% of incomes are nine times less likely to be online than people in the top 20%.”

CAROL DUNCAN: Can those in the bottom 20%, however, afford the $5,000 being suggested to connect to the coalition’s alternative NBN?

MALCOLM TURNBULL: No, you don’t need a fibre optic cable. This is the great fallacy you are labouring under is the notion that to have access to the digital economy you need to have a fibre optic cable into your house. It doesn’t matter what the technology is as long as you have the speed that enables you to do all the things you want to do.”

Now, you talk about 25Mbps, and I say that as a minimum, with 25 Mbps you can stream, download simultaneously four high-definition video streams. That is a lot. You can do all of your e-commerce, all of your tele-conferencing …

CAROL DUNCAN: But there’s been a television released this week that requires greater speeds than that.

MALCOLM TURNBULL: The real issue is, are people prepared to pay for it. Are they prepared to pay for that investment.

The answer is that you will never get a return, at least I don’t believe, I cannot foresee a time when you can get a return from residential consumers for those very very high speeds. If I’m wrong, and it doesn’t matter whether I’m right or wrong, because the flexibility is in the network.

We will build it so it is capable of being upgraded to FTTP as and when demand requires it.”

CAROL DUNCAN: Do you believe there is a perception that women don’t like Tony Abbott very much, that women aren’t comfortable with him.

MALCOLM TURNBULL: I’m not sure that’s right. I think that’s something that’s asserted and I know one woman who doesn’t like him very much – that’s his opponent the Prime Minister – but you look at Tony, I mean there he is, he’s got two lovely daughters and he’s got his wife and he works with plenty of women in his office.

The proposition that Tony Abbott is a misogynist I think is just wrong. You can make a lot of other points about him but the idea that he is a woman-hater is just nonsense.

CAROL DUNCAN: I often see comments about the September federal election along these lines, “I wouldn’t vote for the Liberal Party under Tony Abbott, but I would vote for it under Malcolm Turnbull.”

MALCOLM TURNBULL: That’s very flattering and I’ll always accept a compliment, you don’t get a lot in politics. All I can say is that I am part of the Coalition collective leadership team. We are not electing a President. Tony Abbott is the leader, he will be Prime Minister if we win.

CAROL DUNCAN: For better or worse a lot of Australians do actually vote on personality.

MALCOLM TURNBULL: Yes but there is more than one personality in a government and there is more than one personality in an opposition, too, and so we are a team.

So you might prefer Malcolm Turnbull to Tony Abbott or you might prefer Tony Abbott to Joe Hockey or Julie Bishop to all of us, but the fact is that we’re all part of that group. We’re a package deal.

So all I can say to those people who say ‘I’d rather have Malcolm Turnbull than Tony Abbott’ is thank you, very much for that generous sentiment but I’d still urge you to vote Liberal because I will be there. I am part of the leadership team and it is a collective leadership team.”

CAROL DUNCAN: So for those people who aren’t comfortable with Tony (Abbott) you’ll be there to rein him and make him behave in the ways that perhaps they wish?

MALCOLM TURNBULL: Well I’m not sure what they want me to rein him in on? When you ask people about that they keep on talking about his swimming attire. I don’t know that that’s my responsibility.

CAROL DUNCAN: Are people perhaps concerned that his obviously strong faith will interfere with his policy-making decisions?

MALCOLM TURNBULL: Well, I don’t think there’s any evidence for that. He’s a very practical person. He recognises the Liberal party and indeed Australia is a very broad, diverse community.

We use the expression ‘a broad church’ not to express that we’re all religious but that there’s a wide range of views, and as the leader you’ve got to accommodate all of those views and I sought to do that when I was leader.

CAROL DUNCAN: There are lots of points that you two differ on, how hard is that?

MALCOLM TURNBULL: Well we differ famously on the question of the republic but that is, in effect, a free vote issue in the Liberal party so there are plenty of Liberals who think we should be a republic, Peter Costello comes to mind, but there are plenty that don’t – John Howard and Tony Abbott are staunch monarchists so the Liberal party survives notwithstanding differences of opinion.

We have a common purpose in restoring capable, competent government that seeks to enable people to do their best rather than telling them what is best. So we’ve got a philosophy of government but we don’t agree on every issue.

 

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Immunisation and a preventable cancer

On the Friday night before Christmas 2012, I spent six hours in an operating theatre with a dearly loved friend. The only time I’d ever been conscious in an operating theatre was during the caesarean births of  my sons.

When someone tells you something like “I have cancer” it’s probably a fairly common response to feel both scared and helpless.

But if I was to write a list of ‘things I love about my job’, then being able to do stories like this and share them with others, maybe making a difference, would be right up there. I call it ‘using my evil powers for good’.

Brad and his wife felt that in doing this story it would help others in the future who might be faced with the terrible decision he had to make. It’s a story with a bit of a twist, too.

As for me, if just one boy gets vaccinated against HPV that might not have if it weren’t for this story – then I’m happy.

brad and birdBRAD KEELING: I started smoking when I was 17 and I gave up when I was 24 so I smoked for about eight years I guess, and not very heavily, but yeah, I smoked. I’ve been around smokers all my life. My Dad worked for WD & HO Wills but that didn’t really mean that I took up smoking because of him, he was the person most against me smoking.

Both my parents smoked all their lives and both of them died from cancer, but neither of them died from a cancer which was caused by smoking. My father was a blender of tobacco. A buyer of tobacco originally for William Butler tobacco company, then WD & HO Wills which became British American Tobacco.

As a buyer he eventually became a blender and then he effectively was the chemist who put together the cigarettes in the way they were compiled – flavours with different leaves and things.

He travelled lots of places from Mareeba in Australia to Rhodesia in Africa and just like somebody would create perfume with different blends, my dad created cigarettes. I remember one interesting one, Port Royal roll your own tobacco, which smells great. To this day I think it smells great when I smell it in the pouches. It was sweet and fruity.

Anyway, he created all those things. He’d travel around and look for leaves from different places, if it rained too heavily in South America, he’d have to find somewhere else in New Guinea that had the same type of leaf or whatever. Today, of course, cigarettes are not created by blenders, it’s all created artificially by computer programs.

I think there has been an element of passive smoke around me all my life, no question about it, certainly in my childhood and twenties. In those days people smoked in the house, bars and restaurants and all sorts of places. It was really only in the eighties that we publicly stopped smoking in places like aeroplanes and offices and so on, so I’ve had passive smoke around me all of my life because of my upbringing and the general community. It was just what we did.

My cancer is throat cancer and one of the causes of throat cancer is smoking, but I’m not a smoker. There are other potential causes but we just don’t know, and may never know, what caused my cancer. I guess they’ll have some pathology eventually and will know. I like a beer and alcohol is another cause.

Smoking and alcohol are the most prevalent causes but another is HPV (human papilloma virus) which apparently people can have, and not know, for decades. I’ve since found out this is why they now want to immunise young teen boys against HPV with the cervical cancer vaccine.

I went to the doctor back in September for a persistent sore throat that was quite persistent, I’d had it for what seemed like months. I’d put up with it and it seemed to come and go but actually it was always there. Eventually I gave up whinging about it and went to the doctor. She looked in my throat, saw it was a little red so prescribed antibiotics which I took religiously for two courses and then went back to her and said, ‘No, I still have a sore throat’. She was wondering then if I had some post-nasal drip. I felt like I did although I couldn’t quite work it out but I now know that the lump in my throat that I’m constantly trying to swallow is actually attached to the back of my tongue but I didn’t know that at the time so we put some steroids up my nose for a few weeks to try to dry up my nose.

That didn’t help the throat and I still had that feeling (of wanting to swallow something) and so I went back and saw her late November. At that point she decided to have me see an ear, nose and throat specialist that Saturday (24 November). He had a look down my throat and told me I had a lump and sent me off for an MRI on the Tuesday. He then phoned me on the Wednesday to say he wanted me to have a biopsy on the Saturday (1 Dec). He rushed through the pathology and rang me on the Monday night to say I had a tumour, cancer, and that there was more than likely a secondary cancer in my lymph glands.

I went on the Tuesday to a cancer specialist head and neck surgeon, Dr Jonathan Clarke, who confirmed that I had cancer and that, again, most likely that there was a secondary cancer. He ordered a PET scan that showed that I have a cancerous tumour in my throat and also one of the lymph glands in my neck.That afternoon I saw Professor Milross at RPA and discussed the treatments available. I’d also discussed the treatments with Dr Clarke.

The other interesting thing that I now know, having read about throat cancer, there’s not a lot everybody tells you that’s interesting but I now know that throat cancer often first presents as an ear ache. I went to the doctor for an ear ache back in February. Of course, I had an ear ache and my jaw was a bit sore so we just thought that maybe I slept with my mouth open or maybe I held my head strangely so I had some jaw exercise to try to relieve the pressure. There was nothing wrong with my eardrum it just looked like I was putting some pressure on a nerve or something. I didn’t, of course, couple the ear ache with the sore throat until reading about it now.

It was only the radio-oncologist who asked me when I first got the ear ache. He was trying to analyse how fast the tumour was growing. So given that I’ve had the ear ache since at least February the tumour is not growing terribly fast. That’s a good thing. Even so, I’m going to have to have it out. I had to decide between surgery and chemotherapy, both of which would probably be coupled with radiation therapy. That’s been pretty difficult. It’s not like going to the doctor and finding, ‘You’ve got a sore throat and this is what you do – take this pill and lie down.’

The text book treatment, I’m told by the radio-oncologist, for throat cancer is chemotherapy and radiotherapy combined and that surgery, in the past, has been a drastic measure only taken if necessary because to get to the back of your throat the surgeon needs to cut through your jaw, split your jaw open, and then excise the tumour, close your jaw up and join it back together again. Apparently that’s not always that successful and affects all sorts of things from speech to swallowing to goodness only knows what.

However, there is a newer option for surgery these days which is a robotic surgery option where they don’t need to split your jaw, they essentially send a little robot down your throat. It makes no choices of its own, the surgeon manipulates it remotely, and it chops out the tumour. But I had to choose between surgery and chemotherapy and I’ve chosen the surgery route.

I think surgery for throat cancer now with this robot (Da Vinci machine), whilst new, I gather this robot has been used by all sorts of people from the US military to people using it here. We have one here in Australia at the Macquarie University Hospital. I’m going to go with the robotic surgery because I think it’s going to be less of a strain on me and my body than the combination of chemotherapy and radiotherapy.

There’s not enough data at the moment but for some people the robotic surgery result is complete cure and no need for radiotherapy, but I’m in stage three cancer where I have a secondary cancer in my lymph gland. They can’t use the robot for that, they’ve actually got to cut me from my ear to the middle of my throat and extract lymph glands. Because of the possibility of microscopic cancers being elsewhere in the lymph glands the likelihood of radiotherapy following surgery is pretty high for me.

But for others who have throat cancer and no secondary cancer, to excise the tumour with this Da Vinci robot would be pretty good. I’m told the current data says that 60% of those people don’t have any follow-up radiation needed. I don’t think I’m going to be in that category because of the secondary cancer but that’s neither here nor there, and it’s most unlikely that I’ll require chemotherapy post-operation. I’m confident that this is a curable cancer. Both the surgeon and the radiologist separately and independently said that the outcome of this is most likely that it will be cured and it will be gone.

CAROL DUNCAN: What is your main worry at the moment?

BRAD KEELING: I don’t know that I’m really worried about much. The things that worry me mostly are family and friends worrying unnecessarily or more than they need to. I’ve found that to be a very interesting process, talking to family and friends, saying ‘Look, I’ve got some news but it’s all OK really. I’ve got cancer.’ Nobody really takes that very well so I’m mostly worried about getting other people worried.

As for surgery, I don’t like the idea of it, never really have, but I don’t like taking a Panadol! Why would I like surgery?! I’ve already had the needles stuck in my arms for the various reasons like the biopsy and PET scan and while I can deal with needles, I don’t really like it. (Laughs) Post-operative care, I’m told, is basically pretty simple. The throat should heal quite well, the stitches in my neck will heal like any other operation would and it will be fine.

I’m having part of the back of my tongue cut out so there’s the potential for an impact on swallowing and my voice but we’ll wait and see. We don’t really know what’s going to happen there. Assuming I have to have radiation therapy after the operation, the impact of the radiotherapy is such that I will lose part of my taste buds and the ability to taste things, and I will have a reasonably dry throat because I’ll lose some of my salivary glands.

The other interesting thing about choosing the operation as opposed to the combination of chemotherapy and radiation with no operation is that the operation is drastic but a kind of triage for the radiotherapy. I’m told they can target much more accurately the radiotherapy post an operation than they can if I don’t have the operation. In the simplest of terms they said, for instance, ‘We’d have to target the radiotherapy on your neck and both sides of your neck and therefore both salivary glands and all of your tastebuds will be affected,’ whereas post the operation they’ll only have to target the radiotherapy on my left side and therefore the impact will be considerably less.

CAROL DUNCAN: Why do you want me to tell your story?

BRAD KEELING: Recording this story is, I think, something that people will be able to listen to, read, look at photos and make an informed decision about the choice between chemotherapy and the operation. The operation using this robot has really only been done in Australia a dozen times or so, we haven’t had the robotic surgery capability here, so when I was given the choice, the necessity to choose between chemotherapy and the operation, I had to do my own research on the robot, read about it, find out what it was.

Now, this little story is something that other people can read and hopefully it will help them weigh up the choices between chemotherapy and radiation, and the operation. But I’m not qualified to give anybody any medical advice, this little story is really just my story. Anybody reading this, listening to this, really should go and get their advice from their own medical practitioners.

** You can read or listen to all of the interviews I conducted for the radio series on the ABC Newcastle website. A documentary version will go to air on Radio National soon.

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