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Harry, liver cancer participant

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Chemotherapy/TACTIC clinical trialOn 29 August 2012, I was diagnosed with cholangiocarcinoma, in other words, liver cancer, at the age of 41. I was told by the doctors that I had roughly six to 12 months to live and that I should get my affairs in order.I was like ‘What are you talking about? I’m a non-drinker’. When I was first diagnosed, I was someone who wouldn’t even take a pain killer. The cancer in my liver was initially 10cm x 12cm – the size of a grapefruit. I was in absolute agony. I couldn’t eat. I went from 108kg down to 80kg in about three weeks. And it was quite bad watching the changes in my body when I was first diagnosed. Dropping down to 80kg I could see bones in my shoulders, ribs – which I hadn’t seen in quite a number of years – and face. So it was pretty emotional. It was a bloody shock.It does do your head in to be told at 41 you’ve got six to 12 months to live so go get your affairs in order, especially when you’ve got a wife and three kids. I’ve got four kids now: an 11-year-old daughter, a nine-year-old daughter, a four-year-old son and an 11-month-old baby girl. My wife was actually pregnant when I was diagnosed. She was basically told ‘Your husband won’t be around in six to 12 months’ time’.It’s been hard on the family. My kids don’t know their Dad has got cancer. I don’t want to stress them out. They know I’m sick and that Daddy hasn’t got the energy, or the strength, or the stamina.I remember going and seeing the surgeon when I was first diagnosed. And I said ‘Cut the cancer out of me’. I’m a motor mechanic by trade so when something’s broken, you repair it. Pull it out, it will regrow. And he refused to operate. I couldn’t understand that. He said ‘First of all, it’s metastasised. And second, Harry, if we gut you like a fish, one of a few things could happen. You’ll either die on the operating table, because it’s a big operation that you’re asking for. Or you could end up spending six to 12 weeks in hospital in recovery. That’s six to 12 weeks that you will not be with your family’.Then I came over and saw Dr Peter Grimison, Staff Specialist in Medical Oncology at Chris O’Brien Lifehouse, and was compatible with a trial chemotherapy drug. The chemo has been, in a way, a blessing as far as I’m concerned. I’m blessed compared to most people.I’ve been having chemo for two years and am at the beginning of my 33rd cycle. Two weeks on and one week off, six to eight hours each time. The cancer has halved and it’s now 6cm x 4cm. The doctors have put my cancer shrinkage down to the chemotherapy trial drug. So I can’t complain.The hard part coming to terms with is I don’t have the strength, the energy or the stamina I used to have. Like going out, running around and playing with the kids. I can’t do that and I’m only 43. It’s the mental game that really does the head in at times.My fishing is my ‘Stuff you cancer, you’re not getting me down’ time. I love my fishing – it’s my therapy. It’s relaxing, it’s soothing. I could sit there and not catch a damn thing. As long as the weather’s fine, the water’s nice and you’ve got good company – a few mates. We just sit there and f lap gum. Long shank, small sinker, put a worm on. Light gear, dump it out there and then off you go. You don’t think about the stuff that’s being pumped into you or the fact they say my life’s been limited to a certain extent. And that’s something that does your head in but you’ve got to be mentally strong about it and say ‘Stuff you cancer, I’m not going anywhere’. And that’s the only way I live my life these days.I think the care here at Lifehouse is fantastic. The nurses here are worth their weight in gold. The fact that they’re caring but they also sit down and have a joke with you and muck around with you. Same as my doctors. My doctor, Peter Grimison – I love the bloke. He’s already had a couple of kisses and cuddles from me. He’s a champion bloke. They’re all fantastic, seriously. I don’t have a bad thing to say about any of the staff here.I’ve got a mobile coffee van built by my own hands, which I’ve had for seven years, but unfortunately I’ve got to sell it. I don’t work full time these days. If I can work on a Saturday or Sunday I’ll do that. Occasionally I do go out on a Monday or a Tuesday and see my regular customers but they’re more friends than customers. It’s just a social event – just something to get out of the house. It was quite a good business and used to service about 120 people per day. Now I’d see about 30-40 customers per day if I turn up. But that’s fine – it just gives me something to do.I’m a massive AC/DC fan. AC/DC is releasing an album in November and will apparently be touring sometime next year. Since 1988, I’ve never missed an AC/DC concert, so I’m looking forward to it and hoping to get backstage passes from my mate.