At 19 years old, Jon Oogjen has been on more adventures than most of us will in a lifetime. He’s also got terminal cancer – and plans to “go out in a blaze of glory”. Here’s how Jon’s living to the extreme, G-tube in tow.

How did tube feeding first come into your life?

When I was five I was diagnosed with EoE [eosinophilic esophagitis] and anaphylaxis. I got a nasogastric after a couple of years, for about a year, and then I went on to a G-tube when I was eight, and had that for about eight years. That one got removed when I was in highschool, but recently I’ve had to get another one put in because of other health conditions causing problems.

How are you feeling about your new PEG?

It’s interesting. I know that it causes a lot of good things and gives me the energy to do what I need to do. But the physical aspects – the visual stuff – can get into your head a little bit.

Yeah. When we were told my child would need a PEG, I was a bit grossed out by the prospect. Is that how you felt about it too?

I was familiar with it. Because I was eight when it was first put in, I thought it was normal. At the moment it’s not so much that I’m grossed out, but I’m very aware that other people can get grossed out by it, because it’s a foreign object. It’s not ‘normal’.

What does eating look like for you right now?

I’m 100 per cent formula fed. I still eat, as well, but there’s not that pressure for me to eat orally. I pump overnight – a litre over 10 hours – and I do one gravity feed during the day.

How recently did your PEG go back in?

It’s only been a couple of weeks now – I’d say a month or so.

And how is it going? How was the surgery? How’s the wound?

Yeah, good. So the first time I had a really good stoma – the skin around the tube – and I very quickly swapped to the low-profile feeding tube. But now that I’m in the adult system, I’m stuck with the long one and fighting to get the MIC-KEY [low-profile G-tube] one again.

My son has a low-profile G-tube. What does yours look like by comparison?

The tube goes down below my waist, and it’s constantly like that. It’s like the attachment that you put on the MIC-KEY, to then put on the syringe – that tube connection part – but it’s always on it. So it gets caught on stuff. I have to tape it to move it out the way.

What kind of tape do you use?

I use elastic sports tape, just because it moves with the rest of my body. I have quite an active lifestyle, so I like to use the elastic one because it moves with me and doesn’t get stuck.

So you stick your tube to your body with the tape?

Yeah, I just kind of loop it around itself onto the other side of my belly button, and then that seems to keep it out of the way. It makes it look like I’ve got a little bit of a belly going on, but that’s fine.

You keep yourself fit – you can afford to have a little bit of a belly going on there.

Exactly.

You’re feeling the health benefits of putting the PEG back in, but emotionally speaking, did it seem like a setback?

Yes. Absolutely. It was almost like admitting I was sick. When the option came up, all of my logic said, ‘yes, you need this to make you feel better’. But all of my other emotions were like, ‘are we sure we want to do this? Because this is like letting the health issues win’.

But now that it’s been put in, and I’m feeling better after the surgery and used to it again, I’m very happy it’s there.

You go on lots of outdoorsy adventures. What's the most extreme scenario you've tube fed in? I’m imagining you abseiling off a cliff and pausing to do a gravity feed at 100 feet…

I don’t have very crazy tube feeding stories, mainly because when I go on those adventures, I always do my feeds when I get home. So instead of doing the bolus feed during the day, I’ll wait until I get home and do catch-up feeds. This makes me feel a little bit sick and bloated, but it still gets the food in.

The craziest tube-related thing that’s happened was when I was in the playground at school. I had just had my feed so I had a full stomach, and I was a reckless child, so I jumped off something in the playground and landed flat on my stomach.

I remember looking down and my button feeling weird, and seeing it had pushed to the side. I’d say it was dislocated. Then all I did was put my thumb behind it and pull it, and it made this really hollow pop noise, and then was fine again.

That is hardcore - like a tube-fed Macgyver. Do you have any tips for people who want to stay active and don’t want this way of eating to hold them back?

Go for it. Because the only thing people are going to do is praise you. I go to the gym with my feeding tube and have people coming up to me saying, ‘Hey, I’m impressed you’re here today’. People acknowledge that it's a hard thing, especially at gyms and in sporting scenes.

That’s lovely, but is there a tiny part of you that gets pissed off when people find you ‘inspiring’?

A little bit. It does get a bit annoying but it’s also very reassuring, because it means I must be doing something right. And when people acknowledge that other people have problems, and that they’re still doing what they’re doing, I like that.

Outside of the gym, is body image something you struggle with?

There are so many negative thoughts about body image that can come with having the feeding tube. It can be a bit much. When I went snorkeling recently I was walking down the beach and I had my wetsuit half on, so it was just on my legs, and my feeding tube was swinging in the wind as I was walking.

I walked past a group of travellers who were just sitting there, having a great day, and I very quickly rolled up my wetsuit a bit higher, just to tuck the feeding tube away, and make it not so obvious. They were having a nice trip, they didn’t need to be looking at gross feeding tubes.

My every inner fibre is screaming, no! You shouldn’t feel the need to hide it! But I can understand not wanting to invite stares and questions.

They didn’t say anything because I controlled the situation, so they didn’t see anything to say anything about.

Isn’t that annoying, though, to have to check yourself like that?

I guess it’s sort of like having a lookalike. So one of my friends looks like a Hemsworth.

Lucky bastard.

Yeah, I know, right? What a problem to have. He says he always gets told he looks like a Hemsworth but he has to pretend it’s the first time every time. “Oh wow, thanks, yeah, I’ve never been told that before”, because he doesn’t want to hurt the other person’s feelings.

I guess you can’t really say, ‘Oh yeah, I get told I look like a Hemsworth all the time’, because then you sound like a wanker.

Exactly, so he just has to respond in a nice way. Don’t get me wrong, it’s not a problem, but at the same time, he wishes people would tell him that less.

It’s the same with my feeding tube. I’d prefer if people didn’t say anything - not because it’s a bad thing, but just because I don’t want to have that conversation again. I’m not embarrassed about it or anything, I just don’t want to have to give the full story again.

You mentioned health issues as the reason you got the PEG put in, and I know that you received a cancer diagnosis – a terminal one, with a four-year remaining life expectancy. Can you tell me about this?

I was only diagnosed in October last year, so I’ve still got quite a bit of time, but my cancer is very temperamental. For a week it may have extreme growth and cause problems all over the place, and then for the next six months, it could do absolutely nothing. There’s no way to tell.

The doctor said, judging by your condition right now, you have four years. However, that could be less, that could be more. It could go dormant for the next four years and not do anything.

Well that’s hopeful...

It’s got a little bit of hope in it, but also a dash of salt, where at any moment it could just turn volatile.

It’s a type of blood cancer, isn’t it?

Yes, it’s a vascular cancer called epithelioid hemangioendothelioma or EHE. The liver version of it is called HEHE, which to me just sounds like a very bad Michael Jackson impression every time I go to the doctors. It’s a mutation in my red blood cells and it just forms wherever it wants. It’s really hard to get a handle on – really hard to control.

Your diagnosis inspired your Bucket List project, which has seen you setting off on kayak-powered camping trips, cliff diving and, just recently, snorkeling with sharks. What’s next to tick off?

I’m still trying to get my lungs back at 100 per cent after the snorkeling. Mitchell and I – the friend that I keep on going on most of my adventures with – both have our motorcycle licences, and we were both thinking of doing the Great Ocean Road or possibly a tour around Tasmania. If we go with the Great Ocean Road, we’ll probably end up doing sky diving as well.

Have you always lived fearlessly, or only after you were diagnosed with a terminal condition?

I’ve always gone out and done that reckless thing and figured it out on the way down. But recently it’s just been one adventure after another after another, and that has been quite an exciting way to live.

How do you make peace with knowing you have limited time?

I’ve always wanted to go out in a blaze of glory, so the way I see it, it’s either going to happen when I’m cliff diving or when I’m bouldering, and I would enjoy that.

You’ve got an incredible attitude toward all of this, but I’m sure you have your dark days with it, too.

I find the easiest way to deal with it is through talking to people, and there are health benefits in doing physical activity. I find that helps a lot. Just moving clears my head, so I get stuff done.

Something has just occurred to me. How did you go snorkeling when you’re not meant to go swimming for six weeks after you’ve had a PEG put in?

That’s actually a good point. I probably did it too soon, to be honest.

You broke the rules!

Yeah, I broke the rules. I was also told I should stop bouldering. And I do a combat sport, even though I shouldn’t, because of my cancer.

So you make your own rules.

A little bit. You nod and say yes to what the doctors are saying, but sometimes it just takes that little bit of inside knowledge of what your body is telling you that you need, and then going with that. Because as much as the doctors know, they don’t know everything.

Not to sound cocky in any sense, but you know what your body needs. I was confident with the position that my feeding tube was in and I felt that I could go swimming – and no problems have come from it.

What advice do you have for young people who are new to tube feeding, thinking this is going to destroy their social and love lives?

In terms of relationships, the people who care won’t give two hoots about it. I guess the main thing is to not let it control you. When you first get it, you’re in pain, it’s getting in the way, you’re trying to get familiar with this new dynamic and the way you move and all that kind of stuff, but then, eventually, you end up not even acknowledging it’s there.

The only thing that’s reminding you that it’s there is the way people are looking or the occasional look in the mirror, or the fact that you’re feeding yourself. But in those moments in between, it’s not a prominent feature in your life. Hold on to those moments, because in those moments, you are forgetting that it’s there, which is making other people forget that it’s there.

When you’re pretending that it’s not there, it’s kind of obvious something’s going on, but when you genuinely forget you have that feeding tube, then everyone else forgets it’s there.

I guess it’s a bit like… we don’t go around all day thinking about our belly buttons, do we?

No. And even though everyone has them, no one is thinking about someone else's belly button.

Unless it’s really cute.

Or really weird.

The Bucket List