Simon: G’Day guys, and welcome to another episode of The Mindful Men Podcast. I’m your host, Simon Rinne, and today we’re getting mindful about bowel cancer. And joining me for today’s discussion, I’ve got Jake Usher from Perth wa. How you going, Jake? 

Jake: Good, thanks mate. Happy to be here. Excited. 

Simon: It’s good to see you out of bed.

It’s pretty early over there. We’re on opposite sides of Australia, so thanks so much for getting up early and jumping online to have this discussion. I think it’s gonna be a really interesting discussion, a really much needed discussion. I think for so many of us know someone who’s going through cancer or have had cancer or even had cancer ourselves.

And so I think, you know, looking at my family and friends at the moment, I’ve got a number of people that come to mind going through cancer at the moment. So I think it’s gonna be a timely discussion, particularly in terms of sharing your story and promoting it so that people aren’t blindsided in their own lives.

They can maybe get some support earlier than they think. So really keen to chat about this today. But to introduce you and this is what you sent me in the bookings. So you think you’re an everyday normal Aussie bloke living a relatively normal life. And I’m interested to know what normal life looks like for you.

And you were diagnosed with stage four cancer at the age of 31, and you’re 32 now. So before we get started, define what an everyday normal Aussie bloke living a relatively normal life is for you. 

A “normal” Aussie bloke’s life

Jake: That was probably a bit of a cheap answer, that one. But yeah, so growing up, I’ve basically lived in WA most of my life .

I grew up down south in a place called Harvey that’s mainly known for, its, I guess, dairy farms and Harvey, fresh milk, orange juice, Harvey beef, Harvey cheese. It’s like a real sort of farming community. When I was about 14, I moved up north with my old man up to a place called Exmouth. Probably most well known for swimming with whale sharks, but it’s basically, you know, sun sea beach, fishing, surfing, that sort of stuff.

Bit different to the farm life. So yeah, I finished my high schooling up there and then I did an apprenticeship as well as a chef. I fast tracked that, so I was qualified just after I was 18 and then that didn’t last too much longer. I think it was about another six to eight months.

And then the, split shifts and the mediocre money sort of, Gave to the shits and so I decided to try my luck and try and go sort of offshore and, you know, work on an oil rig or work on one of the rig tenders or something like that that didn’t exactly go to plan. But I did manage to get a job working on the boats out of Dampier which is in the Pilbara , north of Exmouth, in WA pretty close to Karratha if people might know that a bit more.

So yeah, I basically did that for almost 10 years. And that job gave me the ability to do a fair bit of traveling and stuff like that cuz I was working four weeks straight and then four weeks off. So I was basically having six months off of the year to do whatever I wanted with which was travel.

So I did a little bit of traveling in my early twenties. Through Europe a few times, Southeast Asia, Thailand, Cambodia, Vietnam actually trekked through Mongolia for a bit, which I could probably talk about for over an hour, just that one trip. And also I, I guess New Caledonia and Vanuatu and New Zealand.

But the main trip, the sort of life defining trip was actually when I went over to the States. I went on a Contiki tour there. And I actually met my wife on that tour. So that was probably my most life defining trip. Like I say, it was, it was probably the trip that I was almost least looking forward to.

It was just something I did and yeah, obviously came out with well at the time, a girlfriend would eventually turn into my wife. We actually got married in Vegas at the end of the trip as well. But we got married for real about five years later. So yeah. And then we went on our honeymoon after obviously getting married and then we went straight up to live up in Karratha and Dampier.

So that was basically the first time we’d sort of lived together and I was coming home every night from work rather than you know, working away for four weeks at a time. So that was really good. But again, that didn’t last too long because I got off at another job which was almost, too hard to turn down.

It was a bit more money and a bit more time off but the main thing was it was working with a really good bunch of crew who I’ve worked with before. But the, the problem was, it was, is again, working away.

So we decided to move from Karratha down to Perth cuz there was no point paying the, the higher rents of Karratha if I was not gonna be there. And I think that move potentially saved my life in some ways, which I guess we’ll probably get into a little bit further down the track.

But I mean, when I say a fairly standard Aussie bloke outside of all that, I go to the pub with my mates and, you know, have a few beers, watch a bit of sport. It’s a fairly standard sort of thing, but also probably I guess quite advantaged I had a good job, great wife.

She had a good job. Like life was, life was good. 

Simon: I would say there’s anything but the average, normal life. Like, there’s so much travel that sounds wonderful. Talk us through the Contiki tour and how you actually met your now wife. Did you have a sleazy pickup line or something like that? How did that work? 

Jake: I actually pretty much went to a bar in Washington DC and it was something stupid, like a $10 entry fee. And we’re all like, oh, this is stupid. Like we, there’s plenty of free bars we got in there and it was free drinks for two hours.

I was like, well, that’s worth $10, even if it is US dollars. And so I just went straight to the bar and I think I ordered like five vodka soda waters or something like that and then I just turned around and she was there and I said, I bought too many vodkas. Do you want one? So that was pretty much the first thing I said to her.

And yeah, so, so it kicked off from there. But I’d done a few Contiki tours before that through Europe mainly. And the first Contiki tour I actually did. I made really good friends with the bus driver. And he messaged me after the tour a couple of months after that saying, I’m going to the States on a Contiki tour as a guest.

Do you want to come? And I just booked it and I thought, yeah, we’ll just do it. Put it on the credit card. We’ll, we’ll figure it out later. Cuz I’d only just got back from Europe as well. So I messaged him back and said, I’m coming. Like this is gonna be awesome. And he didn’t message me back for three days.

I thought he was stitching me up or something. I thought, now I’m going to America by myself. And yeah. But it obviously all turned out great. 

Contiki Wedding

Simon: Talk us through the Vegas wedding. I’m interested to hear about this cause we only see it on things like the hangover what did it look like for you? 

Jake: It is a lot like it is in the movies. We didn’t do it there, but we went past like a drive through wedding where you can get married at a drive through. But yeah, where you got the fairly standard Elvis Presley wedding it was a bit of a stitch up really the bus crew sort of organized it all and yeah, well I guess we were named the Contiki couple, so it was just, it was gonna be us the whole time. And yeah, so we did that and I mean, it’s obviously not a legal thing. I think they put it down as a commitment ceremony or something like that.

But yeah, it was definitely an experience. 

Simon: So you’re over in WA big AFL state, , are you into the afl you like your sports? Tell us a bit about your sports interests. 

Jake: Yeah. I love AFL A actually, since being diagnosed with cancer, obviously I’ve had a fair bit of downtime and I’ve watched more sport in the last nine months than I ever have.

And I’ve always loved sport, but you just don’t get time to, like even the NBA stuff. I started watching that a little bit because it’s on in the mornings when you’re usually at work or something like that. So, I mean, I didn’t get into it too much. Watch a few games. The playoffs are obviously on now, but yeah, AFL’s definitely the, the big one.

But I’m actually a Collwood supporter, so really not not something you usually hear coming from someone in WA, especially someone who’s grown up here. 

Simon: I was gonna ask you how the West Coast are going at the moment, but obviously Yeah, you’re on the top of the ladder at the moment. 

Jake: I’m good, mate.

I’m good to go. And I just started going when I was kid because my whole family hated them. Yeah, 

Simon: I love it. It reminds me of my household. So I grew up in Adelaide and we’re all Crow supporters, and my little brother decided to go for port just for the same reason as well. Oh. So yeah, a little bit of Collingwood in our own house with the Port Adelaide magpie. So anyway. Yeah. You, you mentioned before that you, moved to Perth and essentially saved your life.

So we are talking about cancer today, even though the first few minutes probably didn’t sound like anything like cancer. Yeah. 

Jake: This is a travel podcast, 

Simon: travel and footy. But yeah, like talk us through like leading up to the diagnosis, like what was happening and can you talk us through you, what prompted you to go see a doctor and get something sorted?

What prompted Jake to see his Doctor

Jake: So I pretty much defined my life as they did in, I guess, the olden days with BC and AD. BC stands for before cancer and AD after diagnosis. So I guess just before I got diagnosed, I was actually at work working on the boats.

And it must have been a bit of a down day because I was just on my phone scrolling through Reddit. And I saw a post on there and it basically just said something like, you know, I’m going to the bathroom four to five times a day. Is that normal? And then I read through the comments and all the comments were like, you need to go and see a doctor, go and see a doctor now, blah, blah, blah, all that sort of stuff.

And I sort of thought to myself actually, like, I’ve probably been going to the bathroom like five or six times a day recently. So I thought I should probably listen to the comments and go and see a doctor. And I guess that part of my life, I, I had never used to see a doctor for anything. And, and I always, if I did go and see a doctor, I’d make sure there were like two things wrong with me to get my value for money, which I also had a bit of, a bit of an itchy bum as well.

So I thought, well, there you go. There’s my two things. I’ll go in and see the doctor. And so basically that’s what I did. I, you know, swung off and then made a doctor’s appointment as soon as I got home. Went in there all I said to him was, listen, I’ve got a bit of an itchy bum. And he said, oh, we’ll send you in for a colonoscopy.

And I was thinking, wow, that’s, you know, that’s a bit overkill for an itchy bum. Like, I was expecting him to say, go and get some cream, maybe have a week or two off the beers and eat a salad or something, you know, it felt like overkill to me. And I thought, yeah, either way we’ll go in and do it.

Colonoscopy identified tumour

Jake: It’s just another experience, isn’t it? A colonoscopy. So, yeah. That’s basically what I did and. Went in for the colonoscopy, woke up and a nurse came to do a blood test. And I’d been sort of sitting in the waiting thing, just watching everyone go in and out and they’d come out and they’d get some sandwiches and then they’d be off and no one else had a blood test.

So I, I thought, hang on, something might be a little bit off here. And it wasn’t long after that that the doctor actually came out and basically just said, listen, we’ve found a tumor a large tumor and about 30 centimeters up your colon, which is, your colon’s probably about two meters. So it’s sort of right at the start and they couldn’t even get the camera past it to check anywhere, further on.

So yeah, that was obviously a fair bit of a shock, but like I just said righto, like, cool, like what are, what are we gonna do about it? Tell me how we deal with this. And I got sent off for some fairly urgent scans and stuff like that. He referred me to a colorectal surgeon who I actually spoke to that afternoon.

While I was getting the scans, I had a message on my phone. It was the receptionist saying, listen, the doctor really wants to talk to you, even if it’s like seven 8:00 PM tonight if we can get a call. And I thought, wow. Like this is pretty serious if a doctor’s willing to talk to me at 8:00 PM at night.

So yeah, that was, that was. Pretty full on. And I actually , cuz I was still at the hospital getting the scans, I actually got in between a couple of his appointments to have a chat with him. and this whole time my wife didn’t know, she was just sitting there waiting to come and pick me up from the colonoscopy, which had gone about five hours over time.

And I’m just sort of texting her saying, you know, I’m just going in for some scans and stuff like that. And obviously didn’t, didn’t tell her until she sort of got there and basically as soon as we walked outside, like I just sort of broke down and said like, they think I’ve got cancer. And she was just obviously fairly shocked as well.

And it was only about 10 minutes later we were in with a colorectal surgeon at least I’d had almost the full day to sort of process it. I’ve just dropped this bomb on her and, and then we’ve gone in and, and we’re talking about it. So yeah, that was sort of what sort of led up to the diagnosis and, and stuff like that.

And then it was basically straight in for treatment as soon as possible, 

Embarrassment talking to Doctors

Simon: Wow. Like it sounds so fast. And I take you back to the GP though, like, I’ve gone to the GP with, you know, itchy bum as well and, and worried, you know, a bit of blood on the poo 

and it’s very shameful. Like, I felt a lot of shame, I felt embarrassed and, to even talk to the doctor about that. Did you feel any of that embarrassment having to talk about your privates with the doctor and, and then, you know, to deal with the colonoscopy as well? Like what was that like? 

Jake: Yeah, I guess a little bit, especially to start off with now, I, I couldn’t care. Like there’s, there’s been cameras up, me bum and stuff like that. I’m open, I’m an open book to anything now, but I was definitely a bit nervous going in or, a bit embarrassed about, talking about it.

No one really likes to talk about their bum and stuff like that, so, yeah, it’s a bit embarrassing and I’m sure a lot of people go through it. My surgeon actually told me that, Probably about one in 10 doctors would’ve sent me in for a colonoscopy with just those small symptoms. And I’ve actually had a couple of mates who are older than me and have had probably worse symptoms than me.

And they’ve gone to the doctor, one of ’em actually had a family history of bowel cancer. They’ve both gone in, asked for a colonoscopy, and both got sent away. The one who had family history eventually, got in and got it sorted. But my other mate, the doctor, actually laughed at him.

And I, I was thinking that’s, that’s ridiculous. Like, if, like you’re nervous enough and embarrassed enough to come in and do it. And then the doctor sort of just laughed at you. I was thinking that’s, that’s yeah, it’s no good. And, they’re both living up north. And that’s sort of why I say moving to Perth is potentially what saved my life.

Because I mean, like I say, I wasn’t a big fan of going to the doctor early on. And I think if, the doctor had basically done what I said and just given me some cream and said, you know, fix your diet or something like that, No matter how bad any symptoms got, I don’t think I would’ve gone back to the doctor for like three months or something, you know, like it, it was just one of those things, if things get worse, you go, no, I’ve already been to the doctor, I’ve just gotta deal with it for a while. Which is definitely something that I’m promoting against doing these days. One of the biggest things is yeah, obviously listen to your body and if, if you’ve got any signs and symptoms, just go to the doctor and if that doctor doesn’t listen to you, Go and see another doctor, cuz you know your body better than anyone else does.

And I think actually one of your previous guests Ange, I think it was with the A D H D said the same thing. 

Bowel Cancer the “older persons” disease

Jake: If you’re not getting the answers you want from the doctor, go and see someone else because especially when it comes to bowel cancer and stuff like that.

Because unfortunately the stigma is that it’s an older person’s disease. Like the government doesn’t start testing for it until 50 to 75 when they send out the screening kits, which is a great, great initiative, but it just adds to the stigma that it’s an old person’s disease. Like if the government’s not worrying about it until 50, why should I be worrying about it at 30, or 31 or younger in some circumstances.

So it’s just one of those things. And, and doctors are unfortunately, you know, part of it as well, they’re not looking for bowel cancer in people. and a lot of the times, a lot of the symptoms of bowel cancer are very similar to irritable bowel syndrome and stuff like that. So it’s easy to get misdiagnosed and my story is one of luck.

Like everything has just been amazingly lucky for me. And I obviously since getting bowel cancer, I joined a lot of communities and stuff online and the amount of stories that I hear from young people just being misdiagnosed for so long and that’s the reason a lot of young people are diagnosed with the later stages because they’ve been misdiagnosed for, you know, 12 months more, 18 months.

Where if they’d just gone in and got a colonoscopy to start with, it might have been stage one or two. And stage one or two bowel cancer , it’s almost a hundred percent survival rate. So, it’s very important to get checked and get it found early. That’s the main thing. Early detection is key. 

Bowel Cancer in young people

Simon: I was interested there cause I always think of bowel cancer as an old person’s disease. And to be diagnosed at 31, and in talking with the communities that you’re involved with, like how prevalent is it for younger people to get bowel cancer? Do you know? 

Jake: I think the stats are about one in 10. I think the average age is about 65, give or take five years or so. I think it’s a little bit different between men and women, but yeah, it’s around that age. So the average age is, , older.

But yeah, one in 10. And unfortunately those stats are increasing while, while the older generation that are obviously getting tested and stuff, that’s, that’s actually decreasing. So yeah, it’s, it’s pretty worrying. I think. One of the biggest stats and it just still blows my mind thinking about it, is bowel cancer is the biggest cancer killer in Australia between the ages of 25 and 44.

Like, that’s, wow. That’s ridiculous. That’s crazy. And, and it’s still. Thought of as an older person’s disease, yet it’s the number one cancer killer in, basically young people really. So yeah, it’s pretty full on to think about really. 

Simon: That’s really interesting. Cause living in Australia, like we have hot summers and, and over in wa you guys have very hot summers. I used to live in Adelaide, we used to get the WA heat a couple days afterwards and, and I would’ve thought, yeah, skin cancer or something like that might be higher, but to know that bowel cancer, that’s just phenomenal.

Jake: Yeah. I mean that’s the same thing. Like, I’m not even sure if I’d heard about bowel cancer before. I definitely didn’t know anything about it obviously prior to diagnosis and I mean, I did a little bit of Googling of my symptoms just before, which I don’t recommend at all. So I sort of knew it was a possibility before I went in for the colonoscopy, but, Definitely wasn’t something that I actually thought might happen. I remember sitting on my bed the morning of the colonoscopy, we had to get up early at like 4:00 AM to finish off like the bowel prep stuff.

And I remember sitting on the edge of my bed just thinking this could be as normal as life gets for a while. And I have no idea why I thought that, but I was spot on. Life took a turn for the hard a few hours later. So yeah. But it’s like I say, the stats are crazy. And that’s probably the main thing.

 That’s almost my main message. There’s plenty of stuff around awareness and trying to reduce the age of screening and there’s heaps of different things that especially Bowel Cancer Australia is advocating for. But the simplest and probably the best thing is just raising awareness.

It isn’t just an older person’s disease, so you know you need to get checked out. 

Colonoscopy to Surgery

Simon: Yeah. And so they found the tumor and said that you were at the hospital talking to the surgeons. Did you have surgery pretty quickly from there or like what was the next few days like for you?

Jake: Yeah, so again, I was pretty lucky. Like a lot of people even just getting wait times for a colonoscopy. There’s a huge wait time I think on the east coast as well. There’s something like three months or something like that, let alone being able to see a colorectal surgeon. So I think there was only about a two week wait between doctor’s appointment and colonoscopy.

And then from colonoscopy to surgery, I think it was only probably a two week wait as well. They were pretty keen to get it sorted because it was. Basically blocking up my whole colon. So there was a chance of a blockage, and that would just increase the problem.

So yeah, so I went in and got the surgery, a lower anterior resection it’s called, where they basically just chopped that section of colon out and, and stitched it back together. There’s about a 50% chance of needing a colostomy or ileostomy bag. I was lucky enough to avoid that. But I was, you know, fully prepared to get one, like I’d seen the stoma nurse and stuff like that.

I, you know, marked it out. This is where it’s gonna be but yeah, like I said, I was, I was lucky enough to avoid that. And then surgery all went great. Like, I recovered in hospital for about six days after that which is pretty quick. And then it was another six weeks of recovery at home.

But in the time between colonoscopy and surgery, I’d had all those scans and stuff, and that’s where I found out that it had metastasized or also spread to my liver as well. There were two suspicious spots, which were confirmed as lesions as well.

Cancerous lesions. So I guess the idea was then after the surgery, had my six weeks recovery from that, and then go in for another surgery, which would be like a liver resection where they just, same thing, cut out that section of liver. Unfortunately, within that six weeks recovery time, the lesions had grown from two to 14, so it was spreading quite aggressively and quite quickly.

Chemotherapy

Jake: So surgery was canceled and they sent me in for chemotherapy like a few days later. Because the idea was we need to. We need to hold this up, we need to slow it down or stop the spread and then, take a breath and see what we can do here. So that’s what we did and I did some pretty high strength chemotherapy.

It’s called FOLFOX Erie for anyone that might wanna know. But like, that’s pretty high. So I think most people, I don’t know what the exact numbers are, but I think a lot of people are on either FOLFOX or Fol Fury. Put them together and that’s what I was on my, my oncologist basically called it the kitchen sink of chemo.

So it’s pretty high streak as well as immunotherapy as well, which I was doing. And then chemotherapy, I guess to explain how that works. It’s a two week cycle and the plan was to do 12 cycles . And so, basically a cycle was.

Monday going to the cancer center I was there for about six hours getting pumped with chemo. And then I’d go home with like a little portable pump, which is like a, just a little bottle basically. And that was on for 46 hours. So Wednesday a nurse would come to the house, take that off and then I’d have a week and a half to recover.

The weird thing was the worst days were probably like Friday, Saturday, Sunday of that first week, like chemo stopped. But also all the drugs and steroids and stuff that I was on to mitigate all the side effects had stopped as well. So that was, they were definitely my worst days. As far as side effects go.

And then, yeah, and then pretty much have a good week. And then as soon as you’re starting to feel like you’re almost back to a hundred percent, you’re back in and doing chemo again. So that was pretty full on. 

Simon: So how far along are the treatment cycles? Said 12 bouts of the chemo, are you, have you finished that now or is that still ongoing? 

Jake: So I’ve finished that now. I finished that probably about two months ago. So after six cycles I got an updated scan and that scan showed that I’d gone back to two lesions.

So the chemo had knocked out 12 of the lesions. Now it doesn’t mean it’s killed him or anything like that. They can still be there. They’re just dormant. Which is, I mean, it’s not a great thing to think about that it still might be there. But at least, they are gone for now.

The chemo had beaten them into submission, and even those two that were left there, they’d shrunk by about half, I forget the exact sizes now. But that also opened up a potential for another procedure called micro ablation which is basically where they stick a probe into your liver and then into the lesion and then just burn it.

 Which is an experience in itself. I was actually awake for it, which I wasn’t expecting. Obviously on a fair bit of painkillers, but yeah. And it’s hard to explain. But anyway, that was all done, but I was also still doing chemotherapy. There were another six cycles, I got another scan, which like I say, I probably only got the results for about a month and a half, nearly two months ago.

And that came back basically clear, like, I’ve got no active cancer cells in my body, which is, that’s amazing news. I can’t say how good that feels, but there’s always a chance of recurrence and the probability of that is, is quite high. So I am still doing chemotherapy to try and mitigate that and try to reduce the chances of recurrence.

So, but it is a lot lower than chemotherapy now. So I’ve only had about two cycles of that. And one of those cycles I actually ended up getting an abscess on my bum. And that wrecked me, that’s been almost more debilitating than the chemo recently. It’s been pretty full on, so I’ve only just been able to sit down comfortably.

So I had no idea how that first cycle really affected me chemo wise, but this the most recent one. It felt like almost a holiday. Like I was a little bit tired and still, you know, a bit nauseous in the first few days, but by Thursday I was almost back to normal. So I’m nearly getting a week and a half of good time now rather than just a week.

And, and even those first few days are a lot a lot easier to handle at the moment. 

Chemotherapy side-effects

Simon: Can you talk us through actually going through chemo and for anyone who hasn’t been through it or seen it I remember TV is my go-to is a lot of people like throwing up and stuff like that. 

Jake: That’s exactly what I thought. Like my first round of chemo when I went into the cancer center, I was expecting to be thrown up and I had to throw up things that you get on planes. I bought a few of them for the car cause I was thinking on the ride home, I’m gonna be throwing up, I haven’t thrown up this whole time.

So it’s not exactly what you see on the tv. Like it’s still bad. And this is just my experience as well. I know other people are affected by nausea a lot more than I am. And like appetite and stuff like that, a lot of people don’t eat. It hasn’t affected my appetite. Most people you think, you know, are vomiting and losing weight.

I haven’t vomited and I put on nearly 17 kilos Oh wow. Like in nine months. And that’s not just because I’m eating badly and not doing anything. That’s also to do with the drugs. Well, that’s what I’m blaming anyway. So yeah. But fatigue a hundred percent, like you see that a lot of fatigue.

It’s crazy. Like I was having to sleep pretty much every single day. Even in my good week, it might just be a sort of half an hour nap in my good week, but in my bad week, I’d probably sleep in about maybe three or four hours in the afternoon. And that wasn’t affecting me sleeping at night either.

Like I was still sleeping fine at night. But yeah, there’s a lot of little things and it’s different for whatever chemo you’re on, which is something that I didn’t know. I thought chemo was just chemo, but there’s different chemos for different cancers and stuff like that. And even though the cancer is in my liver, it’s not liver cancer, it’s still bowel cancer that’s spread to my liver.

So I’m still being treated for bowel cancer, I guess. So that’s, that’s I guess something that I was surprised about in the beginning. But yeah, there’s heaps of side effects and stuff. Mainly physical neuropathies, one like your hands and your feet basically go numb and tingly.

That sort of affects you more and more as the chemo sort of builds up in your system. There was a time there probably around about cycle seven ish or something like that. I, I pretty much could not feel my hands on my feet 24 hours a day and I was just tingly and it was just, It was a pretty bad feeling.

But I ended up doing some acupuncture, which has helped at heaps. Like I still do have it, especially in my fingertips, but it’s not my whole hands and my whole feet anymore. And also it hopefully should be getting better. Now I’m on this lower strength chemo, so that’s, that’s another thing a lot.

Others like cold sensitivity, which you can deal with. It’s not debilitating, it’s just really annoying because you can’t just grab stuff out of the fridge, you gotta put gloves on. You go to the toilet, you’ve gotta wait 30 seconds until the water heats up.

You can’t drink anything cuz , they say it sort of feels like razor blades. So basically you can only drink tea, coffee, and hot water really for the first, at least sort of four days or something like that. Which, Your body’s just been pumped with a bit of poison and all I was craving was like a nice cold, fresh juice and a salad or something, you know?

It’s sort of like you hung over a little bit, but yeah, so there’s all those things plus obviously stuff that you don’t even think about really, like reproductive stuff, like, that’s, that’s gone. That’s which obviously I’ve taken steps before starting chemo to sort of mitigate that as well.

But there’s all those things, and that’s not even getting into the, the mental side of it, you know, that’s just completely physical and you get a headache or a little pain in your neck, and you’re immediately thinking the worst. Before I get a pain in the neck, oh, I’ll just, you know, stretch it out.

I might go and see a physio or a chiropractor later if it stays there. Now I’m thinking, oh, Like, I’ve got an infection, I’ve got sepsis. It’s pretty full on. Not to mention the low immune system as well, which is something that it is, I’ve always had a pretty good immune system, I think.

And I just thought, you know, chemo will bring me back down to everyone else’s levels. But it’s ridiculous how bad it was. Like I got an infection in my tooth, which I used to probably get like once every two months. Again, I don’t like going to the dentist, so I’d just deal with it.

 Just like a bit of food. Get caught in one of my back teeth that happened while I was on chemo and it just didn’t go away. And I had to actually skip a week of chemo because I had the infection and it wasn’t going away. So in that sort of week off where I’m supposed to be resting, I actually went in and got three wisdom teeth out.

So that was not my idea of a holiday, but it’s just stuff like that, you know, stuff that just doesn’t normally affect you. And same with that, the ab absence thing, like, I’m pretty sure my body probably would fight it. No dramas, nine months ago or something. But just yeah.

 Your body’s obviously getting cooked by the chemo. The chemo’s not your friend really like it. It’s, it’s poisonous, it’s going into your body. It’s just that chemo hates cancer more than it hates you sort of thing, so I think the saying is that the enemy of my enemy is my friend.

So I guess, you know, me and me and chemo are. Like this at the moment, even though it’s, you know, frenemies maybe. Yeah, that’s it. That’s it. A hundred percent. 

Mental health impacts of cancer 

Simon: You mentioned there’s a lot of physical aspects of this and trying to, to beat the cancer with a lot of, as you say, poison , but, you touched on the psychological components of it and, I remember you saying right at the start, like you had the colonoscopy, they identified a tumor, then you had to wait two weeks. That in itself, those two weeks must have been hell psychologically. And I guess thinking back to that stage , and that first discussion you had with your partner, how did it impact you mentally as well? 

Jake: I’ve been pretty good mentally for the majority of this, I guess ordeal.

I don’t like to say the word journey, but it’s hard to find a word that isn’t journey sometimes. But yeah, definitely telling my wife and then that evening, telling my parents, calling them and telling them, That’s still probably the hardest. I think I’ve had like I called my mom, she was at work and I was like, well, maybe call me when you get home.

And I think she must have just left work straight away cuz she knew something was up. But even calling my dad, like, I reckon for about 30 seconds to probably more than a minute actually, like I was on the phone to him and I couldn’t, I just couldn’t verbalize it. I couldn’t say it like it was, it, weird.

All I wanted to say was, ah, G’day mate. Yeah, listen, I’ve, I’ve got cancer. But you, just verbalizing it and saying those words was so hard. Not just to my family, but to anyone. But as soon as I knew someone knew it was fine. No dramas. It was just sort of like, I feel like I didn’t want to be just dropping bombs on people because no one’s expecting you to say it.

Even if you told someone, listen, we need to talk and you need to sit down. No one’s expecting you to go. Yeah, listen, I’ve, I’ve got cancer like that’s, that’s full on. And I think I, I just didn’t. I didn’t want people to feel sorry for me and, and stuff like that. So I think that was probably, yeah, definitely one of the hardest parts there.

There have been hard times after that, but that was, I think, just because I didn’t know either what was going on. And like you say, in, in between that sort of waiting time again, something that I probably shouldn’t have done. I was googling a fair bit and other than speaking to my family, probably one of the, the other worst days, it probably knocked me around for about two days.

Mentally I was sort of in bed and just not motivated to do anything when I googled the survival stats or survival rates and Yeah, that, that knocked me around a fair bit. Like I’ll, I’ll say them, but I’ll probably put a warning out there that if there is anyone dealing with bowel cancer, especially stage four, or you know, someone and, and you don’t know the stats or you don’t want to know them, maybe skip ahead a few minutes because like I say, it did, it did knock me around a fair bit.

So, the stats that are basically out there are for stage four bowel cancer if you’ve got a 14% or one four survival rate for five years. So, you know, you’ve only got 14 people in a hundred that are going past five years now. That’s still something that plays on my mind. It’s not, not as bad as those first few days because I think

After laying in bed and feeling sorry for myself for a couple of days, I sort of came to the realization that righto. Let’s do everything we can to be in that 14%, you know? And obviously I’ve got support and stuff around me as well, which has helped along the way sort of mentally and stuff.

But it was just sort of one of those things where I thought, hang on, like I’ve also just read this stat. And that’s all I’ve read. I’ve just read that stat. I haven’t read anything about, you know, what leads to that stat. Like I say, the average age of someone with bowel cancer is 67. So technically I’ve already got age on my side.

There’s so many different variables and yeah. The stats are, the stats are the stats, and that’s, the survival rate. But there’s a lot of things that are on my side, obviously age physical fitness, which might not, not a specimen of, of physical fitness, but. I wasn’t always like this.

And you know, there’s, there’s of other things obviously how treatment is, is affecting you and if it’s working obviously family history and, and there’s, there’s so many different things and I think once I sort of got that into my head, like I said, it still does play in my mind, but once, once you sort of think of that and, and just sort of more so, just be more determined to, to be in that 14% rather than feeling sorry for myself, which is fine as well.

Like people feeling sorry for themselves. You’ve got a decent excuse. it’s not that you shouldn’t feel sorry for yourself and you shouldn’t cry every now and then. Like my wife and I will have a bit of a discussion, once a month or every two months where it’s, just a bit, bit emotional and we both have a cry.

And by the end of it we’re feeling better. And I think that’s sort of the thing. Like, crying’s fine expressing yourself, that’s fine, but as long as you’re sort of feeling better after it, if you are if you know, if it’s, if it’s knocking you around more and you, and you’re still feeling bad, it might be time to, you know, have a chat to someone and, and stuff like that.

So yeah, it’s definitely The mental side of it is nearly, if not more sort of worse than the physical side of things. It’s just, you can see the physical stuff, I guess. But yeah, like I say, I’m also in a pretty good position. I’m part of these communities where I hear stories from other people and like even financial stressors, that’s something that I haven’t had to worry about too much.

Like my work’s been amazing. My wife’s work’s been amazing. Like I haven’t had distress about work. Like I’m by no means financially set up or anything like that, like, I don’t own my house or anything like that, but like I’ve got insurance. I think my health insurance would be almost about to crack a hundred grand claims in the last nine months.

So I’m definitely getting my premiums back from them. And you know, I’ve obviously, you know, got a little GoFundMe campaign which is just there to sort of fill the gaps in, in the medical costs that the insurances aren’t picking up which has been amazing.

Family and friend support

Jake: And, just that in itself, not just the donations , but this whole experience, one of the things that I’ve sort of found out is how many genuinely good people I know, like, you know, I’ve got a fair few mates and, they’re good, good mates, but I didn’t know how good, like, how genuinely nice these people were.

And that goes for family members as well, like the amount of support I’ve had has. Absolutely, made this whole experience a lot easier for me, like just especially my wife 100%, but also, other friends and family come around and do a bit of gardening and, drop off some meals and stuff like that.

Meals are amazing and, and if you’ve got someone who’s dealing with cancer and or something like that and you dunno what to do, giving ’em some meals is a pretty good thing because it not only helps me, but it, it sort of takes something off my wife’s plate as well. , and that’s something that people don’t really realize as well.

It’s like, my wife’s going through the exact same thing I’m going through, but she has to work full-time and, and just act like life’s normal as well. So definitely I think a lot of people underestimate how hard it is on your family, and that’s, that’s almost the worst thing for me, like is, is knowing, I mean, I know it’s not my fault and everyone will say, you know, you know, it’s not your fault.

You can’t do anything about it, but. Just knowing how much stress and pressure I’m putting on my friends and family. It’s something that sort of gets to me a bit, I guess. But yeah, , I was gonna say , these communities I’m part of, like some of the stories I hear about people completely stressing about work and finances it’s really sad to hear because you’ve got people, no one expects to get bowel cancer, especially at a young age.

So you just find out, you get it. You’ve got cancer, you’ve gotta deal with it. But life doesn’t stop. Like your bills don’t stop. Like nothing, nothing stops. Telstra isn’t calling up and going, listen, I heard you got bowel cancer. Don’t worry about your bill for the next 12 months. or, you know, your rent or power bills and everything’s a pretty big thing at the moment, and none of that stops.

So a lot of people are just stressed about their work or losing their jobs and, and something that’s probably even more sad is people that continue to work at the detriment of their treatment. That just makes me, oh, it just makes me feel really sad for those people. And like parents as well, like myself and my wife don’t have any kids or anything, but just the thought of that and, and having, especially single parents and 

so, like I say, it’s, I’ve had it pretty lucky. Sounds like a weird thing to say when you’ve got stage four bowel cancer, but my journey has been completely lucky from finding out the processes through treatment and then also like all these other things that I don’t have to have to worry about.

So yeah, something that I’m pretty appreciative of. And I think that’s another thing that sort of helps with the journey is I guess knowing that you’re in a bit of a shit situation, but there are, there are worse people out there. I actually had I feel like it’s sort of like imposter syndrome, especially when I started the GoFundMe thing.

Like I started it like three months before I actually activated it because I just felt like there’s so many people out there that are worse off, like financially and, being parents and having to deal with kids and stuff like that, whilst also on treatment and, , I just felt like , I didn’t wanna start it because like I say, I’ve just felt like a bit, bit of an imposter sort of thing.

But then I sort of came to the realization that just because there are people out there that are, that are worse off, doesn’t mean my problems aren’t there. And I think that should be for everyone. You know, like it’s good to know and recognize that, there are people out there worse than you, but.

It doesn’t make your problems any less relevant so I think that’s probably a good, good thing to think about. 

Simon: I’m glad you said that because as a therapist myself, so I’m a social worker and therapist and I often say this, to people who come into therapy, it’s like, , there might be worse people in the world than of going through, than what you are going through, but it doesn’t make your experience any less important as well.

Yeah. And there’s also, when you compare yourself to somebody else you might be worse off than the next person as well. So it is a bit of a spectrum and, and I’m glad you said that because yeah, for anyone who’s listening, he’s going, oh, you know, I’m not as bad as that single mom or anything like that.

That could be the thing that stops them from going and getting that colonoscopy and going to see that GP. But I think it’s really important that they just go, you know what? We’re all important. I’m important. I need to get this sorted. Let’s go and start the conversation.

I love how you are having this conversation, on this podcast for one, but also, you know, I came across you on TikTok and Instagram as well. So I follow you on both those platforms and thank you very raw and real on those platforms showing what it’s like to go through stage four cancer.

Why it’s important to talk about cancer

Simon: Why is it important for you to share this story? It is quite a personal story, but why is it so important for you to do that? 

Jake: Yeah, so I basically just started doing videos because I was sick of copying and pasting the same message to everyone who was asking how I was going. I might as well have a group chat and just, just let everyone know that way. So that’s why I started the videos just to give everyone an update sort of once a week or something like that.

Because as much as I appreciate all the messages of support and all that sort of thing, like I was also very fatigued a lot of the time. So it was hard to get back to people. And to be honest, probably in the first month or two, my phone was blowing up and I would’ve missed and probably not returned close to 90% of those calls, which I still feel very bad for.

But it was just something that I couldn’t, I just physically couldn’t do it. So yeah, so I started making these sort of videos on TikTok and, and a little bit on Instagram and the response has been amazing, like, Just, I’ve had quite a few messages of either people who are going through things and then sort of, it’s put it in perspective for them and then also I’ve had a lot of people message me and say, you know, since watching your video, I’ve booked in for a doctor’s appointment or a colonoscopy.

And that’s what, the first time I got one of those messages, I was blown away. Like, I went and told my wife straight away, like, I could be saving lives here. You know, so, that was awesome. But you know, it’s, it’s just one of those things that, again, like I, I put it off for a little while.

I was probably less imposter syndrome, but it was more just. Opening up on social media is a bit of a risk because there’s obviously a lot of trolls and stuff out there and, and I thought, you know, that’s no dramas. I can handle trolls. I can block people, I can delete comments. That’s no drama.

But the thing that sorta was getting to me and, and stopping me doing it is thinking, right. My wife and my family are probably reading these comments and they might not want to hear what people have to say. So that sort of is what stopped me for a bit. And I’m glad it hasn’t stopped me doing it because, since doing it, the amount of support, there’s still a few little sort of trolls in there every now and then, but it’s nothing.

It’s like probably less than 1%, to be honest. The amount of support from complete strangers has been ridiculous. Like no way the, the videos gone viral or anything, but there’s still a lot of. Interactions as well. It’s not just people liking the video, but a lot of people just commenting and saying, you know, like, thanks for the video thing.

Because the other thing was after I sort of got it going, I wanted to sort of be a support for people who are not just going through it themselves, but the family members who have questions that they don’t specifically want to ask, their family member or whoever’s going through cancer.

Like, but you can ask me anything on there as long as, as long as it’s respectful and, you’re not trolling me or something like that. I’ll, I’ll answer anything . So I would say probably more so family members contact me and not just, asking questions about the cancer itself.

But like I say, the people messaging me and, and asking. What they can do. Like, how can I help my friend that’s got cancer now? And because like you say, no one’s got any idea. Like I say, I had no idea anything about bowel cancer beforehand. And I’m by no means an expert now, but obviously know a lot more than I did before.

And, just that feeling of helping people out is probably the second best thing that I’m doing. And the main thing is raising awareness. That’s, that’s easily the, the main thing and, and getting people to, to get checked out And I’ve been in contact with Bowel Cancer Australia and stuff and there’s a few little A few little projects that I’ll be, that’ll be doing over the next month or so.

 June is Bowel Cancer Awareness Month, so that’s a big one. So I’ve got a few Tik Toks just in the bank ready to, ready to fire coming up. So, yeah, it’s good. It’s really good. And, like I say, the community aspect of it all also helps me, I think answering these questions and stuff.

A lot of ’em are, well, not a lot of ’em, but some of ’em are, are pretty hard questions to answer. Like people have, asked me about survival rates and stuff like that. And like I say, as long as it’s respectful, I got no dramas, people asking those sorts of questions. And it’s also allowed me to be in contact with a lot of other people, that are on TikTok and, and trying to do the same thing.

I think a few people have even got sort of inspiration from me doing it, and, and now they’re doing it as well, which is amazing because everyone that’s raising awareness is just another person that might tell someone else that might, save someone else’s life. So yeah, it’s, it’s been, it’s been an experience.

I think. I have one there that In high school, I was voted most likely to become famous for no specific reason. That was one of the things I was voted for in high school and, and I always thought I was gonna turn into a rapper or something like that, but turns out I just got cancer and now I’ve got 12,000 followers on TikTok.

Simon: I saw that you did a video on this. Didn’t your mate have some other like comparison as well? 

Jake: Yeah, so I, there were a couple of things I was voting into. One of the other things was to be mates. With my mate of 20 years on or something like that. And, and he still is, he’s, he’s still my best mate.

But he was voted most likely to become famous because he was a bit of a musician and stuff like that. And yeah, I checked and he doesn’t have 12,000 followers, so 

Simon: It’s like mic drop bang. 

Jake: Yeah, shout out dmc. 

Normalising discussions about cancer

Simon: But I mean, when you’re on the social media and I was very similar with my mental health journey, so I’m on social media for mental health , and to normalize discussions around mental health , and what you’re doing through social media is normalizing discussions around, you know, bowel cancer, but also going to see a GP when something’s not quite right, or getting a second, or third or fifth opinion 

and the more we normalize it, the more we can take away some of the shame that a lot of normal, average Aussie blokes might feel, you know, similar to you. Like you’d go to the doctor if you had two things. Maybe we can bring that down to one thing or just even going in for tuneups along the way and just checking, you know, that’s the whole purpose of a checkup is just to make sure everything’s working as it should be.

Jake: Going for the annual service, you know? 

Simon: Yeah. Like we do our cars. Exactly. Right. Yeah. And it’s an amazing thing that you are doing in the face of adversity. It is an amazing thing. You are, it takes a lot of strength to just open up and share your deep and meaningfuls with the world.

So I’m, I am thankful that you are doing it. I’m not thankful that you’ve got cancer or have had cancer, but the fact that you’re voicing it and giving voice to this, this cynical, terrible thing in a lot of people’s lives is a testament to your strength as well. 

Jake: Thank you very much. Yeah, no, it’s, it’s like I say, I think it’s also helped me along the way as well.

Like another thing, it’s given me something to do when, you know, obviously I don’t have a lot of energy to do too many things, but prior to, sort of two months ago when I was still on the high strength chemo, I wasn’t doing anything except watching sport. Like I was just sitting at home and with a lower immune system, I didn’t want to go out anywhere and stuff like that.

So literally I’ve just been sitting at home for probably eight, nine months. And other than watching sport, I’ll get my little fix in the morning of sport and then it is just something to do, whether that’s creating videos and, and or just coming up with ideas or just, speaking to people, messaging people and, and stuff like that.

So, I definitely think it’s, it’s been a good thing for me. I mean there’s a lot of people who are maybe not anti-social media, but. There are obviously a few bad things with social media and, and there’s a few issues with it, but it’s been an amazing journey . It’s sort of helped me out and, and helped me help other people, which just still blows my mind about us, so.

Yeah. 

Supports for Cancer

Simon: So aside from your TikTok and Instagram pages, which we’ll put the links in the show notes and I’m gonna put your link tree in cuz it’s got an amazing list of different support information. It’s also got your GoFundMe page as well. But for anyone who’s listening who maybe they’ve just been diagnosed or they’re not sure, what some of the supports are available, you know, around the country you know, for people to tune into.

Jake: Yep. So there’s obviously Bowel Cancer Australia. Along with the Cancer Council, both of them have phone numbers that you can call. And you don’t have to even have cancer. You can be a carer or just know someone who’s got cancer. You can call them, just have a chat, ask questions.

I am not a hundred percent sure about this, but I think Cancer Council can sometimes assist with financial things. Like I believe it’s something like they might pay one utility bill or something like that, which isn’t huge, but, you know, it might be enough to, to get someone outta out of the shit there.

 And then they’ve also got advice and stuff that they can give you financially and say, we can set you up with this person to, Help you out and get a bit of a plan going even like riding wills and all that sort of stuff. Like that’s something that I, I actually I should look into, but just stuff like that, they can help you out a fair bit there.

 Even put you in contact with Centrelink if that is something that is available for you. But I also like superannuation and stuff like that. A lot of people might even have income protection or something like that, that they don’t even know about that they’re already paying from their super like accessing your super potentially, there’s quite a few rules and regs behind doing that, like accessing it early and. Permanent disability insurance, so there’s a lot of little things that you might not even think about that you might be able to access that can help you along the way. 

Chemo Comfort Items

Jake: Like you say on my Link Tree Link, I’ve created a thing called the chemo Comfort Items, which, when I first got diagnosed, or, when I first knew I was going in for chemo, I just, I was searching online like, how can I make this better? Like, how can I mitigate a few of these? How can I make this as comfortable as possible to go through this awful time?

And there was just nothing. Or there were little bits here and there. Like I was going on Reddit, I was going on forums. I was going through the cancer council and there were little things here and there. But no, just a full list. So that’s what I did. I’ve sort of created a bit of a list which has got things from like port access shirts, which sort of zipped down so that you can access your port there to slippers, to like hand massages.

Just things that may have just helped out along the way. I just made it a little bit more comfortable along the way because I mean, that’s, that’s one thing that I would say if you can and you are doing chemo, just try and make it as, as comfortable an experience as you can because if you don’t, it, it’s gotta be uncomfortable.

So you know, do that and obviously rest as much as your body needs to. Don’t, don’t try and push yourself. That’s probably two. Very small. Things that I’d say about chemo or recommendations I guess. So yeah, just those things. And also on the link tree there, there’s a lot of stats , and facts and stuff about bowel cancer. What else have I got on there? There’s a few things. There’s a lot of links on there that I just think will just help people out. So that’s, that’s another, another just sort of gateway to maybe not raising awareness once you’re at that stage, but at least helping out people that have mainly just started.

Simon: Yeah, I’ll put the link in the show notes for people to access. So it is a really good link tree. I was there earlier this morning having a look. Yeah. Jake, I really appreciate you coming on the show, sharing your journey, and you’re awesome to chat with as well.

Jake’s feel good plug

Simon: The last thing I like to leave my listeners with is my guest plugging something that makes ’em feel good. And the reason we do this is because we do talk about some pretty heavy things on the show. Whether it’s cancer, mental health, physical health, disability, we talk about it all.

And so I love leaving this little plug at the end. And it could be anything that’s not related to cancer, but just something you’re listening to, watching, reading. Is it a self-care activity? Favorite coffee, anything that just lights you up at the moment to make you feel good and pay that forward for the listeners out there.

Jake: Yeah, a hundred percent. So I mean, like, the easy answer is my family, especially my wife, is. Makes me feel happy. But that’s every single day. That’s not just at the moment. So I guess like I do listen to a lot of audiobooks, but that sort of does pass the time. But I guess something especially that’s getting me going at the moment is just anyone that’s raising awareness and anyone that’s helping out anyone, obviously June being Bowel Cancer Awareness Month, just not just me raising awareness, but when I hear other people whether that’s just raising awareness, doing a fundraiser , for, Bowel Cancer Australia or or just donating to Bowel Cancer Australia.

Just, just anyone that’s doing anything, just having a conversation. And I think people underestimate how far a conversation goes. Like a lot of charities and stuff say that, oh, just, have a conversation. I think it’s.

I don’t know. It’s probably overused a little bit. And, and I think that’s why people are a little bit less inclined to, to do it or they just say, oh yeah, no worries. It’s just another one of those things. But it is amazing that one conversation that you can have with your friends or family could make them go and get checked out and go, oh, actually, because we’d like to say, no one’s discussing these things with their family.

No one’s saying to their, you know, dad or daughter or whatever that Oh yeah, I’ve got an itchy bum, and all this sort of stuff. So just having that conversation might get something going in, in one of your family member’s heads and that could save their life. And if, if you have the chance to save anyone’s life, especially a friend or a family member, that’s amazing.

So that’s sort of what’s getting me going at the moment. Yeah, just, just people raising awareness and, and I thank you for having me on here because this is just another forum and a way that I can raise awareness and yeah. I really, really appreciate you having me on. 

Simon: Love it mate. And all the best with the journey or not journey if you don’t want to call it a journey.

And I can envision the pies are gonna do pretty well this year as well, so that’s probably light in your boat at the moment. But yeah, thanks so much for coming on, really appreciate your time this morning and, and all the best for the future. 

Jake: Thank you very much mate.