Journey through two diagnoses: Alex Wilson’s inspiring story of strength

[00:02:36] Kate: Welcome to today’s episode of Talking Blood Cancer. I’m your host, Kate Arkadieff. And in today’s episode, Maryanne Skarparis speaks with Alex Wilson about navigating the healthcare system through multiple cancer diagnoses. Alex shares his journey, beginning with his diagnosis of Hodgkin’s lymphoma as a young adult.

Followed by both a relapse and a diagnosis of a second form of cancer. He offers valuable insights into the emotional and practical challenges of managing multiple diagnoses, and how his approach evolved with each experience. What makes Alex’s story so powerful is how he explains his transformation from a young 21-year-old facing Hodgkin’s lymphoma to someone who approached subsequent diagnoses with the hard-earned wisdom and confidence.

He shares how understanding medical terminology, preparing for appointments, and managing finances helped him maintain a sense of control during an overwhelming circumstances. We hope his unique perspective provides both inspiration and a practical guidance for your own journey. So let’s get into today’s episode.

[00:03:49] Maryanne: Hello. Today here with me for the Talking Blood Cancer podcast, I’d like to welcome Alex Wilson. Hi Alex. Welcome to the Talking Blood Cancer podcast.

[00:03:59] Alex: Thanks. It’s great to be here. I’m really excited to talk all things blood cancer.

[00:04:02] Maryanne: Lovely. Now today we have a focus on navigating the healthcare system and I know that we have a consumer engagement group where you are very generous in offering your time to share your story with blood cancer. So, to start things off, Alex, do you want to tell us a little bit about you?

[00:04:20] Alex: Yeah, sure thing. So where I am at the moment, I’m coming to you from Mildura, but I’m about three months into a trip around Australia traveling in a caravan. I’m taking a year or two off full-time work just to relax a little bit and see a bit of the country and have a bit of a mid-career break.

[00:04:36] Maryanne: How wonderful, what a great nurturing thing to do for the soul.

[00:04:40] Alex: Yeah, it’s great. I really am enjoying the flexibility of not knowing where I’m going to be in 48 hours. It’s pretty fun.

[00:04:46] Maryanne: Oh, it would be, it’d be a lovely adventure. Talking about where you’re not going to be in 48 hours, does that take you back to a time when you were first diagnosed?

[00:04:55] Alex: Haha, yes, it’s a bit like that. Although less stressful. Much more enjoyable and less stressful, yeah.

[00:05:01] Maryanne: I’m sure. Would you like to share a little bit about what happened to you back then?

[00:05:05] Alex: Yeah sure so I’m 43 now, but when I was 21, I was getting towards the end of my second year of uni, and I was just about to head off overseas, three months backpacking. But I noticed I had a lump in my neck, and I wanted to get it checked out before I headed overseas. So I went and saw the GP, and he sort of felt my neck and then asked me, “Have you lost weight recently? Are you tired?” and also “Have you had itchy skin?” which were very specific questions for a lump in the neck, and I answered yes to each of those questions, and then he immediately sent me off to hospital to get blood tests and scans.

[00:05:46] Maryanne: I would imagine at that age that was quite confronting.

[00:05:49] Alex: It was. So, at the time, I’d never really interacted with the healthcare system and then within sort of 24 hours of that GP appointment, I had been diagnosed with stage three Hodgkin’s lymphoma. Which spread in my spleen, my lymph nodes on both sides and I had a large mass in my chest as well. So, for a 21-year-old who’s never interacted with the health system, so that was a real shock. Although at the time I was less scared than surprised, I suppose. Or a bit shocked, to be honest.

[00:06:20] Maryanne: What do you think contributed to those emotions? Less scared than surprised?

[00:06:24] Alex: I think at that age you’re a bit less worried about mortality and those sorts of things. But also, this is part of sort of navigating the health system. Once the initial diagnosis occurs, it’s just a flurry of appointments and information and research and telling people, so you’re also just really busy, to be honest.

[00:06:43] Maryanne: Yes. Who was your support network at the time, Alex? Because 21 is still that vulnerable age, isn’t it?

[00:06:49] Alex: Like I’m really close to my family, so my parents and my siblings, but also my friends. So I was pretty fortunate and we’ve got a history. My mom had had cancer previously. 

[00:07:00] Maryanne: Okay. 

[00:07:01] Alex: So she was fairly familiar with the process as well. But, yeah, so I’ve always been lucky that I’ve had that support network, which has been really good. But, yeah, at the time I felt busy, rather than scared at that particular stage, I remember.

[00:07:13] Maryanne: So would you describe yourself at that time, what do you think of the attributes that you had, or choices that you had made in your lifestyle, that contributed to your ability to accept or how you felt about the diagnosis?

[00:07:28] Alex: I mean part of it is being a 21-year-old, but also I think a male as well, where you still feel a bit invincible at that age, so you don’t, it’s a bit unreal to think about mortality at that particular stage. I think that’s definitely part of it. So I’ve always been someone who’s not, jumped ahead too many steps ahead. So at that stage, it’s very early on and you don’t know quite what’s coming down the track. So it was very much focusing on one step at a time. Which I’ve used in a lot of different situations in my life. But also when I had a second cancer later on in life, a similar sort of process. So, I think it’s, it was certainly scary for family and friends because anytime someone hears cancer, although I think this is changing, there has been a view when you hear cancer that people instantly think about potentially you’re dying, right? Whereas nowadays I think there’s a lot more informed community that it’s not necessarily that. I’d say as well, those initial stages meeting with the oncologist who said, Hodgkin’s very treatable, we have really good success rate, et cetera, obviously that helped. I think that contributed as well, so there’s combination of all of those factors I think helped me at that sort of early stage.

[00:08:35] Maryanne: Absolutely, being the age of 21, you’re no longer the child. You’re an early adult. So, adapting to that environment that you’re not familiar with, the doctors, the nurses, the routines, the inpatient situation and then navigating the outpatient situation and keeping your own health check-in on point. How did you manage that time?

[00:09:01] Alex: I think in those very initial stages, particularly if you’ve not interacted with the healthcare system much at all, a lot of your worries are actually practical. So things like, “Is it going to cost me? Like when I go and get a CT scan, who pays and how much money does it cost and what is a CT scan?” And even “What is a blood test?” You’re also at that stage, although it’s gotten better, it was still all paper referrals. So I didn’t even know what a referral was from a GP to a specialist, how that worked, you know, different types of oncologists, so you’re dealing with that and..

[00:09:34] Maryanne: Was there a time lapse there, Alex, from your GP identifying that it could be something potentially risky? From the GP to the haematologist referral, was there a time lapse there or a waiting period that was..

[00:09:49] Alex: No. Not really, it was very short order and that’s sort of an indicator that things are serious when the GP sends you straight to the hospital and you go to the front of the line for the tests and the scans. That’s an indicator and it, yeah, happened to me again later in life and it’s usually a pretty good indicator that there’s something potentially amiss. So, I didn’t have to wait too long. Seeing the GP getting the results and then seeing the haematologist was maybe a day or two from memory. So there wasn’t a lot of time to, I suppose ruminate or worry about it. And again, there was also, you know, “What happens with uni, what happens with my work, how will treatment affect my ability to pay the bills?” And, and all these sorts of things are also very much part of the consideration. And how do I tell people and how do I tell people about this and who do I tell and when? Very much, for me, I was worried that I didn’t want people finding out through secondhand or through rumour. I wanted to tell all the important people in my life myself, to give them that respect but also I think it’s a bit less confronting when they hear directly from me when I was informed with some information rather than second or third-hand.

[00:10:57] Maryanne: Being 21, did you need some support in helping you shape those conversations with friends or did you feel as if you had the ability to share freely or how was that communication for you?

[00:11:09] Alex: Look, I’m pretty confident with communication. I’m generally pretty open as a person. I remember sitting down and thinking about how I would tell people. And in terms of how I would tell them and the information that I would provide, try and keep it factual, try and keep it as open as I could. And also flag to people where I didn’t know things. People have a lot of questions, understandably, people are upset, but just say, look, this is where it’s at. And then I will know at, know more from this time and I’ll try my best to keep you informed. So I don’t remember having specific conversations around how I would deliver that, but I was very conscious that I wanted to tell people myself and make sure they heard from me.

[00:11:50] Maryanne: I think that’s lovely. It’s a funny time. I think it’s a very surreal time from what many have shared with me and some people can’t find the words and they rely on others. Yet what you’ve shared I think is quite cathartic, too. Because in imparting, you know, the messages to those that you love and it’s happening with yourself, I think it’s actually a healing thing in a way, would you think that, or?

[00:12:15] Alex: Yeah, look, I think that’s fair, but also what it does is it makes sure that you are asking the right questions of your doctors as well. And focusing on the right information because, what you don’t want to be doing is, well firstly, unnecessarily scaring people. You also don’t want to be sort of withholding information, you want to be upfront and honest, so that was all really important as well because when people hear the C word, they do jump straight to thoughts of well, “Alex is probably going to die”, all these kind of these thoughts initially because that’s what people associate cancer with obviously. So I was very keen that people didn’t jump to that and to be clear about look step one of 400, just take it one at a time. And also, it’s very awkward for people who you’re telling this to because they want to support but they don’t know how to support you know, how can I help, do I not help, and sometimes they can also be uncomfortable about asking questions. Because they don’t want to pry so it’s really important to make it clear that I was happy to answer people’s questions as well if they had questions, that was a big part of my focus.

[00:13:17] Maryanne: With that as your focus, were you someone, and also having mentioned that a lot of people who hear the C word, they instantly think of, oh, a death sentence, or, you know, a bit of a doom and gloom. At 21, was that your initial reflection yourself? Did you have to process your diagnosis yourself? And who did you rely on to help, you know, build that confidence within the regimes for treatment and feel that sense of, “Oh, I’m feeling looked after and I feel confident that this is going to be okay.”

[00:13:50] Alex: There’s a few sort of factors to think, I don’t remember at the time being particularly scared like I mentioned. Immediate focus is just the practical day-to-day of upending my life and how will it all work. You know, initially when I had the discussion with the oncologist and reassuringly, you know, this is a cancer we know well, we have really effective treatment options. Obviously the oncologist doesn’t, never guarantees anything, but, you know, visiting websites, I do remember visiting Leukaemia Foundation website and researching and doing a bit of, from some good sources. I suppose I was reassured that it’s not so unusual or difficult. That all was all reassuring as well, I think, I remember that at the time.

[00:14:35] Maryanne: Oh, that’s good. Yeah, that’s good. So, with regard to your communication with that healthcare team, did you go straight to the top, to the haematologist. Or were you someone who could identify who were the other key players within your treating team that you relied on throughout that time? Earlier on you mentioned the practical concerns that you had. Who were some of those key people that you felt helped you during that time?

[00:15:03] Alex: Sort of, particularly in those initial early stages, obviously the GP in the first instance. But then, it’s interesting because my, I suppose the, senior oncologist or my treating oncologist I met early, but I was very fortunate in my treatment that it was very effective and I didn’t have any complications. So I didn’t actually need to see him very often, which was a positive.

[00:15:24] Maryanne: That’s good, yeah.

[00:15:26] Alex: Yeah and much more the day to day was the interaction with nursing staff, or the registrars, or even getting scans and blood tests. You know, the technician running the CT scan and so on. In those, particularly those early days, that’s who you’re interacting with. I suppose the challenge is, there’s no one to interact with who helps you navigate the admin of the healthcare system. So if I had a cancer question, I could go to the oncologist, but much more difficult to find someone who can help you navigate the ins and outs of how you deal with the healthcare system, if that makes sense, the administrative side and the logistic side of all of that. 

[00:16:03] Maryanne: Do you wanna tease that out a little bit more? When you say administrative and that sort of thing? 

[00:16:08] Alex: Yeah.

[00:16:09] Maryanne: What are we looking at, and what tips would you give to someone who’s starting off and..

[00:16:14] Alex: Yeah, sure. So, even very basic things like the different names for the different types of doctors and medical, healthcare professionals you interact with. Yeah, like I didn’t know what a haematologist was, for example, or an oncologist before I was diagnosed. And then, you know, how do bookings work when you go to a CT scan? And like I said, who pays and how much will it cost me? And then in those days, much better now, but still an issue now is simple things like, which can a doctor see a scan that you’ve had previously or your blood test results previously. Because they’re not stored centrally, so you’ve got a lot of questions about how those things work. How referrals work or so on so that actually consumed, I just remembered that was difficult if that makes sense at the time. It’s just those real practical day-to-day considerations about how you deal with that and also which comes more into it down the track, but when there’s disconnect sometimes between different doctors. You might be getting treated for different condition and how they speak together or don’t speak together, who can see what results and scans and so on is. And that sort of comes down later in the track. But in those initial stages, you just feel a bit, you’re sort of poking through the dark a little bit to work out. And, you know, even stuff like where does private healthcare come into it or not come into it? What is bulk billed and what is not bulk billed? Who covers what components of the costs? All those sorts of things. Obviously complications which in the healthcare system is very much taken for granted that people know that. But in fact in real life, particularly for those of us when you’re young and you’ve never interacted with the healthcare system. You don’t know that, how that works.

[00:17:45] Maryanne: Very, very true and very wise, and I love that you brought that up in conversation, Alex. Because you’re right, a lot of people, it’s like entering a new country. It’s a language that a lot of people who aren’t immersed in it, they don’t know the acronyms for certain things and it’s just assumed that you, well, you’ve got a low blood count. And there are a lot of assumptions that people know that they can claim this through their private health or this, Medicare can cover this or navigating that side of things. So, knowing and identifying who your key players are, you know, to help you fine-tune your administrative management of the financial side of things and your understanding around what’s happening to you, I do think is really important.

[00:18:32] Alex: Yeah. And if at those stages, you’re not actually sure what questions you should be asking. So something we learnt pretty early on, sort of my family and I was when you go into the big appoint, what I call the big appointments with the haematologist or whoever about decisions about treatment and so on. Taking a notepad and pen is like a really good administrative tip because the amount of information that’s coming out. There’s a lot of it. It’s technical, and the doctors and other health professionals do their best, but it has to be technical to a certain degree. So taking a notepad and pen also very, I always, and still do this for those big appointments, taking someone with you, as well is really important because what you hear as a patient might not be what the doctor is actually saying, for example.

So it’s always useful to have a second pair of ears also writing down questions. So think about before you go to these big appointments, writing down some questions because in the moment you forget about it. What can happen particularly, we can talk about second time around, but particularly in the public system, the health professionals are so busy. They’re under such strain. The appointments go quickly, they don’t have a lot of time. So you don’t have a lot of time to sit there and have long discussions with questions and so on. So it’s important to use your time wisely in those appointments you have. So those kind of initial things are really important as well to be able to, you know, taking a notepad and pen, taking someone else, thinking about the questions you’re going to ask before you go are all really important. Because in the moment it’s busy and it’s scary and it’s an emotional on its own. 

[00:20:05] Maryanne: I love those tips, Alex. And, you know, they should be for everyone because I think you know yourself. Even just the writing down of questions helps clarify what your need is and what you’re wanting to ask. And if you can, some instances you can coordinate with your treating specialist. Can I forward you some questions prior to my appointment? So, you have an understanding around what it is that I’m wanting to ask. Or, tapping into those cancer care coordinators in the healthcare settings to ask them, you know, these are the types of questions that I’m wanting to ask regarding my treatment. Are they feasible? Because those questions may be answered by a cancer care nurse.

[00:20:49] Alex: Yeah, and I absolutely agree because I think 95 percent of my questions when I’ve had cancer are pretty day-to-day type questions and I don’t need the haematologist to answer them. So having access to someone you can email with those questions that aren’t potentially as big, more sort of day-to-day things is really handy. And it sounds like a small thing, but it’s a big help when there are those people around who can answer those questions without having to go to, you know, potentially people who are very busy and have lots of time on their hands. And also I should say as well, not have to book and pay for a 30-minute consult with a specialist to get some very basic questions answered as well as the other part of that.

[00:21:27] Maryanne: Absolutely, very important things to say, especially for those who are embarking upon this journey you know, in the early days. And for you, at 21, did you take in with you when you went for your appointments?

[00:21:40] Alex: My parents, primarily. Although the very first, when the GP initially said to me, “I think you have cancer”. I was alone in that appointment which when you speak to other people who’ve had cancer is not that uncommon. But the second time around, I had cancer, I found out, I was sitting in my car in a car park, I found out over the phone. And this is not a, not an unusual experience for people with cancer to receive that news. I suppose in all sorts of situations that are very sort of odd is the easiest way where you don’t have the support because you might not be expecting you go to the GP for a routine checkup and news or, when I was told over the phone, I was in a car now I’m, you know, I was okay with it, but not everyone would be. So even those, those initial conversations about receiving the news, you might be in, there’s all sorts of contexts, which you might be told that news. It’s an interesting story that comes up with quite a few people who’ve had cancer.

[00:22:34] Maryanne: Goodness, I couldn’t even begin to imagine what that would be like without having someone with you.

[00:22:40] Alex: Yeah, and I think the image is, you know, you find out you’re in the specialist’s room, he’s got the big desk and it’s all very sort of, formal and somber. That’s how you find out you’ve got cancer. But often that’s, not in fact the case for lots of people don’t have that experience. And that’s an interesting thing initially as well, and there’s no real, which is not a criticism of doctors, but there’s no real. You know, after the second time I found out, I sort of had to drive to the hospital that day, and there’s no sort of check about, should Alex be driving to the hospital by himself, given he’s just been diagnosed with cancer. Or even after I left the GP surgery the first time around, you know. “Who are you going home to?” and those kind of things haven’t always happened I don’t think. So for me it wasn’t an issue, but I think for other people certainly it can be.

[00:23:22] Maryanne: It’s interesting how you say for you it wasn’t an issue. What do you think contributed to you being so resilient?

[00:23:28] Alex: I’ve always been just a really independent person. So my whole life I’ve always been really independent around that and pretty comfortable with, I suppose challenging or difficult circumstances like that. So it was less impactful I think than maybe other people, which is not to say there’s a right or wrong way to deal with being diagnosed or having cancer, everyone is different. Part of that as well, my mum had cancer and got through it, which is fine. When you know people that have survived cancer, I think that can help as well. It’s less intimidating, I think it’s certainly part of that. 

[00:23:59] Maryanne: You had that exposure to a lived experience. How old were you when your mum had cancer, Alex?

[00:24:04] Alex: Very young, I think I was around 5 or 6. I just, can only just remember, so.

[00:24:11] Maryanne: I was going to say what was your memory of that time?

[00:24:14]  Alex: Very little. I can, I think I remember visiting her in hospital when I was about the extent of it. Everyone is different, and it’s a different experience. Now clearly the second time around I was already an experienced operator at cancer. So it was more of a, less shock and more of a roll of the eyes and not again. Which sounds kind of funny but it’s very true. It’s certainly much less scary next time around, so.

[00:24:35] Maryanne: You said that have touched on you’ve had cancer a second time around. In that time between your initial, when you were a 21-year-old man, what was the word that you used earlier, you know, young men, they’re invincible. Wanting to travel the world, ready to just take hold of the world and have an adventure. Wasn’t quite probably the adventure you were looking for, but I hope that you had the adventure that you had planned.

[00:25:02] Alex: I did, absolutely. Post-chemo. It was the first thing I did.

[00:25:04] Maryanne: Did you? Good for you. You celebrated that. Good for you. 

[00:25:08] Alex: Yep. And good goal, right? Important to have a goal and something to look forward to. So yeah.

[00:25:12] Maryanne: I will actually ask you to tease that out because I often sit with people when they first are diagnosed and invite them to have a vision or a goal. And I do think that that’s very important. I do think it’s important in your subconscious mind to create something so strong that you’ve got to work towards. Something that you’re looking forward to. Something that you can immerse yourself in. You see yourself as a healthy self. You see yourself in your mind’s eye, but then that mind’s eye vision becomes the reality. Would you say that that was your experience by still holding on to the dream of going overseas?

[00:25:53] Alex: Yeah, I think the broader dream during treatment and post treatment was my overarching goal is to affect my life as little as possible. That was my fundamental driver about you know, the delayed overseas holiday is one aspect of that, but it’s very, very much strongly for me. Even during treatment, is I wanted it to affect my life as little as possible. I wanted to concede as little as possible of my life to cancer or the treatment. Even if that, particularly during treatment, say, I probably worked too much, for example. But that was more important to me. That was a, physically, it might have not been great, but it was great mentally to maintain routine. To do as much as possible and cede as little as possible to the cancer that was the overarching sort of driver.

[00:26:39] Maryanne: So that was a choice, that was actually a cognitive choice that you made to immerse yourself into something that was so strong and powerful it took your thoughts and worries and connection to the cancer.

[00:26:51] Alex: I mean, part of it is just annoyance. I was just really annoyed at having cancer many times around. So cancer is not a conscious thing, but it’s life, this thing I just don’t want to, and now not everyone is fortunate enough to do that because everyone reacts to treatment and so on different ways. But that was very, very important to me. And I wanted life to be as normal as possible during and after, as if that was my main overarching goal. And then part of that was going on the overseas trip. But even simple things like pre-chemo I would go to the pub every Wednesday night with some friends from work. I continued doing that except I was on the lemon lime and bitters, not the beers when I was on chemo. You know and I said to my friends for example when we go to the pub, no one is to talk about cancer or ask me how I’m doing. Can we just like, be normal? Can we just like, play pool and have some drinks and talk about everything? And that was great, that, simple things like that but again, that’s part of that broader mission of just maintaining as much as possible a normal life.

[00:27:45] Maryanne: So that was the choice that you made cognitively to help you through.

[00:27:49] Alex: Yeah, absolutely.

[00:27:50] Maryanne: How long was your regime for, Alex?

[00:27:52] Alex: So, six months of chemotherapy. ABVD was the regime which is still used today. And then I needed, it was about six weeks of radiation therapy afterwards. So I had a residual mass in my chest which was all clear in the scans but they still treated with radiation therapy to make sure it was all dead.

[00:28:12] Maryanne: When you’d finished that last bit of treatment, what was life like for you?

[00:28:17] Alex: Well, I mean, wind it back a bit because half, it’s sort of been halfway through chemo, three months into chemo. That’s the first scans you have to see has it worked? Because it doesn’t always work. People get halfway, do the scans, and it’s had no or little effect, which would be hugely devastating, I imagine. I got to that halfway point, I had my three-month scans, and they were completely clear at three months, completely clear, so there wasn’t a sign of any cancer. That was sort of one of the, probably the most emotional time I think through the whole, like getting to that point was a huge emotional relief and release at the same time. So I think that’s when it started. That’s when recovery started. If that makes sense. I still had three months of chemo to run. And I remember I had the scans and the technician, now the technicians are not supposed to tell you the results there, but the technician broke the rules and told me the results there and then. That they were all clear, which is naughty, they’re not supposed to do, but yeah I was extremely, and I cried, I had a happiness cry, and then like phoned the family straight away. But I think that for me was the start of moving on, because that’s obviously a massive thing then with the treatments.

[00:29:24] Maryanne: Absolutely, then also a sign of relief for that technician as naughty as they were. It’s also a mirror like a sign of your interaction with your health care team.

[00:29:38] Alex: Yeah, yeah, absolutely. Just a little, little moment of kindness.

[00:29:42] Maryanne: Yes, if you look at the house of mirrors, it’s what we bring to the table is often what we get in return.

[00:29:49] Alex: Yeah, exactly. So that was that. And then I remember the issue for me then on during chemo. I had really bad panic attacks when I would go for my chemo sessions are extremely distressing for me. And I had real problems with my veins, which I still have to this day. But extremely distressing the actual sessions themselves. That was the next thing that’s been done with those, so I didn’t have to go through those every two weeks, which was really upsetting. 

[00:30:16] Maryanne: Having had that experience, did you have any pre-anxiety? Did you work yourself up and what measures did you take to try and either defuse that reaction, or are you someone who just soldiers through?

[00:30:29] Alex: My third chemo session, I was given an anti-nausea drug that I had a bad reaction to. Not a physical reaction, but it induced a panic attack. So then there was a really powerful association for my brain between being there in that situation, so subsequent sessions when I’d go for my chemo, I’d be extremely anxious in the morning. We’d drive into the hospital car park. I would vomit. Once I got into the foyer, I would smell that hospital smell and I would vomit. And then for the sessions themselves, I would be vomiting the entire time for about eight or nine hours straight. And also, my veins around that time sort of stopped cooperating so it would sometimes take seven, eight, nine attempts to find a vein. Which obviously then you become more distressed and more anxious, so that was extremely tough, yeah.

[00:31:18] Maryanne: It would have been. Had you identified any healthcare team member who did it better than others? 

[00:31:23] Alex: Finding veins, it wasn’t a physical thing. It was all about in my brain and the incredible, it was even to the point where if I saw a cannula or a drip on TV, I’d vomit. I mean the brain’s an amazing thing, right? 

[00:31:34] Maryanne: Powerful, too. 

[00:31:35] Alex: Yeah, exactly. So I did see a psychologist at that stage to try and help with the anxiety, but it just, it didn’t help. And the doctors also prescribed some medication to help. But it just, it was, the brain just overrode all of that. So those sessions were all, the actual chemo sessions themselves were very, very upsetting. And, I speak to my parents or anyone else who came on to the sessions and they say it’s certainly the worst thing they’ve had to see or go through in their life, was in me and those sessions. 

[00:32:02] Maryanne: If that was your experience when you were early twenties, when you had the recurrence of cancer 20 years later, did you still have that association with the smell walking into hospitals and the cannula and you wanted to vomit?

[00:32:17] Alex: No, it’s all gone, fortunately. My veins do not cooperate, but that’s more of a physical thing now. There’s a lot of scarring and tissue issues and the veins collapse. So, no, actually, which is, a lot of that association is gone. The second time around, being back, I went for a PET scan. Being back in the room, cannula in, was upsetting. It was upsetting to be back in that context, not the specific, if that makes sense. I was upset at having to be back and angry about that. But, yeah, those associations are incredibly powerful. And it’s an interesting connection to when you’re navigating the healthcare system, in hindsight, I probably would have been more assertive around different options. Because there are other options pointing a vein using a cannula every time. There are more sort of semi-permanent options to make it a lot easier and, in hindsight I would have been more assertive, I suppose, at pushing some of those options. And exploring some of those options and it can be really tricky when a patient, because you don’t want to be that patient that’s questioning the doctors or the nurses or the professionals who are the experts. You have to also represent yourself right and about, that’s a very tricky thing to navigate about not being that person, but also making sure that you’re looking out for your best interests. Particularly, you know, for doctors and nurses and others, when you’re one of many, many patients as well, you’re not the only one there, so how you navigate that is extremely difficult. 

[00:33:40] Maryanne: Navigating that is very difficult. Managing the appropriate communication lines with your healthcare team, when you want to explore other options, a little bit of knowledge, having had a previous cancer experience, and then fast forwarding to an older gentleman who, I think as we get older, we become more confident in being able to question or challenge situations. Because we’re more mature, we’ve had a lot of life experiences. Whereas the 21-year-old boy is still quite a vulnerable. But fast forward and you’re in your 40s, did you find that you were a lot more vocal about putting forward what your needs were when it came too different? 

[00:34:22] Alex: Yeah, so I suppose to introduce that or to flesh that out. When I was, little over 18 months ago now, I had a ulcer on my tongue that wasn’t healing and had been there for about a month. I went and saw the GP, initial consultation with the GP, she said, “Look, we’ll just leave it and see how it goes. It’ll probably heal.” Two weeks later, it hadn’t, and it was very painful. So, I went back to the GP and then we had a biopsy and then was diagnosed with tongue cancer or squamous cell carcinoma on my tongue that was the second time around. But, like I said, it’s really interesting difference because, my initial reaction was one of annoyance that I had cancer again. But I was much more comfortable because at that time when I went in so I could have got the phone call in the morning saying the biopsy has come back for cancer. I want you to go to see the specialist team at hospital today. And I felt much more confident and prepared for that initial discussion with the specialist. I had the notepad and pen. It was less scary, list of questions and, I think also perhaps for the doctors, I felt much less intimidated by the context. I think my questions were much better that time around, much more focused on what they needed to be.

And then during treatment, certainly more.. It wasn’t really a need to be assertive on anything, but just looking out for just understanding again, where the questions and where to challenge. I’ve never really needed to challenge doctors, but I think sometimes I’d needed to be a bit more forceful the first time around. The other thing that I have, so I, find the science of medical treatment fascinating. So I want to ask a thousand questions because I’d love to know what they’re doing and why. Although sometimes it can come across as me, when I ask why are you doing that to the doctor the doctor can say well, as if it comes across as me questioning them somehow or like what’s the science of this? Why are you doing that? Because I’m interested. I find it fascinating. So yeah, that second time around, I was certainly far more assertive in approaching that. And I felt much more confident in that healthcare system. So it’s less. I suppose less intimidating. The family obviously were fully experienced as well. So when I rang and phoned them, everyone knew what to do. I’m very fortunate that I have lots of family and friends to support me. Also, I’ve, you know, both times I was living in big cities, so I don’t have the challenges that people in rural and regional Australia have with access to healthcare. So you know, I’m very fortunate that that’s the case. 

[00:36:47] Maryanne: Can I ask, did you have the same GP throughout both of your cancers, or has a GP been someone who has been a significant pivotal point in your treatment in your health?

[00:36:59] Alex: Look, the first time around the GP really didn’t play much of a role at all. Because I didn’t really have any complications or anything that needed. Really the only thing I needed a GP for was referrals when they expired and blood tests sometimes or prescriptions that was very occasionally. So I must admit no not really and even the second time around not so much either. Because it was again pretty straightforward. I think the GPs for me have been more critical around their ongoing surveillance. That’s where the GPs have played more of a role. And you know, when I have..

[00:37:35] Maryanne: And these you have confidence there or?

[00:37:37] Alex: Yeah. And look, I think the second time round I was very assertive when after an ulcer that hadn’t healed in a month and initial consultation with the GP saying, “Don’t worry about it, it would heal.” When I went back to the GP the second time. I was very assertive. I said, “It’s really painful, I don’t mind what happens from here, but sending me away is not something that I’m prepared to accept. So you’re going to have to do something. I don’t care if you put stitches in it or if you get a biopsy.” So I was very assertive with the GP. I’m absolutely not critical of the GPs. You know, for tongue cancer, I’ve never been a smoker, I’m not a big drinker, I’m too far too young, I don’t meet any of the risk profiles, so that’s the issue there, but.

[00:38:14] Maryanne: I like that you’ve said that, and I will actually just repeat that, because I do think It’s very important to be proactive in your own health care, and having that ability and confidence to say, “Actually, I’m not going to accept you sending me away, because instinctively, I’m the person living with this feeling, and I know it needs further investigation.” I think that’s very key, because I often hear a lot of people saying, “Oh look, I was misdiagnosed, sent away with some antibiotics.” Whereas they knew instinctively that something still wasn’t quite right. So I love that you said, I’m not leaving here because I want to have further investigation. I think that’s very important. 

[00:38:57] Alex: Yeah, and there’s a way to do it, right? Like I don’t get angry. You know, you need to be respectful on those. Respect the expertise, but there does, sometimes that is required and more broadly as well. One thing, so you should never self-diagnose because it’s extremely dangerous. But nowadays I’m really, like I can read my blood test results. I can read my CT scan results. Because you get experienced at that. And you can, you know, there’s been a few times when I’ve got blood test results back for whatever, where I’ve read it and go, “Oh, that’s a bit, that’s a bit out.” And then having the conversation with the GP about like, “Oh, I noticed this count or whatever was a bit low. Can we talk about that?” So even that kind of engagement, that’s a confidence that you have. Unfortunately, you’ve had a lot of, you’ve had to read a lot of your own blood test results. Also, I just find them interesting as well, but that kind of engagement. 

[00:39:46] Maryanne: Well, you’re invested in your own health. 

[00:39:48] Alex: I think that’s really important because it helps you have a sense of, you’re not just a passive person along a treatment river, just floating down the river while people do things to you. You’re proactively engaged in your treatment. You’re understanding. Sometimes, you know, healthcare professionals are under the pump. So sometimes they miss things. Sometimes they forget things. Being able to notice that and they’re also a bit disjointed. So, you know, I’ve used oncologists, I’ve had specialist surgeons for my tongue, I’ve got a GP, I’ve got a physio, and they don’t, you know, we’re still not at a stage in Australia where everyone can see test results that other doctors have ordered and reports and so on. So you’ve got to be kind of a connector between all that as well, right, to make sure that each of those healthcare professionals can see that. 

[00:40:31] Maryanne: Do you, Alex, keep a folder of all of that together or, how do you collate that for yourself? I mean, you know who your key players are. What’s some advice for other people starting off?

[00:40:42] Alex: I mean, there’s an interesting big difference between sort of 20 years ago, all my scan results were all hard copy. So you were carrying around folders of hard copy scan results and blood test results sometimes and stuff. Things were getting faxed around and all the rest of it. It’s much better nowadays, but I try as much as possible to put everything on My Health Record. I try and keep everything there. I found that really, really useful for that. You know, by and large now when you have scans and blood test results, you can access them electronically. So I’ll keep those emails, all those links, so I’ve got them, yeah, so I’ve got a record there, you know, I try and collate that somehow. 

The second time around I was treated in the ACT system. And in Canberra there’s an app and it’s all kind of there when you’re treated in the public system, which is great, which helps. But again, if I go have a scan ordered by the GP from through private, it doesn’t show up on the, and so you’ve got make sure all the healthcare professionals are linked in. And that’s not about second-guessing their decisions. It’s about you need to be proactively engaged to make sure that everyone in your healthcare bubble is seeing what everyone else, needs to see. 

[00:41:47] Maryanne: So in saying that too, with your first experience, a haematologist would have looked after your lymphoma. But in your second tongue cancer experience, a medical oncologist and a radiation oncologist. So they’re all under the oncology umbrella, but quite significant different pathways within oncology. 

[00:42:07] Alex: Yeah, well, so, second time around, they’re in fact not oncologists, so they’re specialist surgeons. So they’re Specialist Head and Neck Cancer Surgeons. They treat all sorts of conditions to do with the head and neck, but the type of operation on my tongue. So they’re not specialist oncologists or cancer doctors, they are specialists, extremely highly skilled and specialised surgeons for the head and neck region. When they’re reviewing my case, they do include oncologists, sit in the room with them and consult, and make those decisions. So, that’s another interesting little point there, right? Now, all I needed, I mean major surgery for my tongue. But I didn’t need follow-up radiation or chemotherapy for my tongue, which I was fortunate. I had to have the surgery was massive was huge. But that’s a great example of, you know, they’re head and neck cancer, or they’re head and neck surgeons, not oncologists. So, where they need advice on treatment of cancer. But second time around, I didn’t meet with an oncologist once through my whole treatment, and who knew..

[00:43:04] Maryanne: And that’s again, as we touched on these are the assumptions of the medical world. You know, assumptions we make, we hear the word cancer and we make all sorts of assumptions. 

[00:43:15] Alex: Yeah, absolutely. 

[00:43:16] Maryanne: As lay people. 

[00:43:18] Alex: Yeah, and even then you’re sort of navigating. I’d had surgery for the tongue cancer and I was seeing my surgeons and that were my treating doctors at that stage but when something else pops up, you’re having a side effect or something. Generally that’s not their bailiwick. They sort of refer you back to the GP and say we’ll speak to the GP about that not because they are trying to shirk but ultra specialised and their surgeons and that’s what they’re focused on.

[00:43:40] Maryanne: That’s when you rely on your confidence. 

[00:43:42] Alex: Yeah and also you’re just not clear whether like what do they treat versus what do my, you know, it’s all mushed up in the same tongue cancer. But they’re not my GP, they’re not my day to day healthcare provider. And so how do you know where that line is about what they are involved in or what your GP should be or other specialists should be involved in, yeah, interesting. 

[00:44:03] Maryanne: Another thing about you that you’ve shared with me on email, but I think the listeners would love to hear about. From the very young man that you were at 21, what choices did you make to shape you as an individual, and what do you feel has contributed to your ability to face challenges, to be strong, has there been anything that’s helped shaped the way you are?

[00:44:26] Alex: Yeah, look, I think, already spoke about family and everything, having all those things, which is really, really useful. And then, after I’d always wanted to join the military. But I had to wait five years after having blood cancer. So, I had five years where I did other things while I was waiting to join the military. Then I joined the army, at 28.

[00:44:46] Maryanne: Let’s go back to that. You had to wait five years, but it was passionate thing you waited. 

[00:44:51] Alex: Five years to the day. So I was harassing them on the five years to the day that I was eligible to join. And I did question on occasion, but I was very determined that I was going to join the military. So for those five years where I had to be in remission, I was very, very focused on that. It was basically to the day, which is, pretty funny, but yeah, so that was another goal as well was achieving that again around just to not. I didn’t want to cede anything to cancer or give away anything, or miss out on opportunities and, you know, part of that was staying healthy. Had to get reasonably fit to join the military, all that kind of stuff was all part of it.

[00:45:24] Maryanne: And that’s what appealed to you. So a lot of the choices that you made as a 21-year-old. If you look at rehabilitation post any type of treatment, post-hospitalisation, you are disciplined to want to get out of bed, you set yourself goals and you improve on your strength and agility. You set yourself standards of you know, the food that you eat, you know, the activities that you participate in, the challenge, how you challenge your mind, all of those sorts of things that I think also possibly drew you to that military side of things. Where it is the military, well that’s discipline, isn’t it? That’s challenges, facing challenges, conquering different challenges. 

[00:46:04] Alex: Yeah, and I think, so military people are very pragmatic about fixing the problem. So military people, when there’s a challenge or a problem, they’re not the types of people to sit around pondering it all day. Or thinking about how did this come to be, or, how unfortunate am I, and so on. And again, there’s no right or wrong way to approach cancer, but it’s very, like, military people are very outcomes-focused, and like, how do we fix the problem? Give me the list of what I need to do to fix the problem, as opposed to pondering the problem, if that makes sense, or thinking about it all day. So, we’re very, you know, just approach it like that. And I’ve always been like that, but which is obviously, there’s a cultural match there to the military and certainly, approaching things like that. Also, not getting too far ahead, right? So, you’ve just had the call, you’ve been diagnosed with cancer. Don’t worry about step 82. Don’t worry about X, Y, Z, just one step at a time and try and focus as hard as that can be sometimes. But, you know, you’ve just been diagnosed, you don’t know a lot of things. So just wait for that doctor’s appointment. Wait for that next step. Wait for the next test result. 

[00:47:06] Maryanne: Which keeps you busy for now.

[00:47:09] Alex: Yeah, absolutely. I think so. Although interesting, I’m not necessarily like that in a lot of the rest of my life and a lot of other things where I tend to have anxiety about stuff that I can’t control. But for whatever reason, cancer and those kind of situations, I don’t particularly have that worry. I mean, particularly the second time around, because I knew, last time worked out fine, so let’s not jump to conclusions or steps down the track as well. I think that’s, they’re kind of very, familiar things to military people. I’d say something else. So I’m a, I’m an army intelligence officer and something that we spend a lot of time is learning how to, critical thinking and thinking about approaching sources of information. So collecting information from all different sources and identifying what is authoritative information versus what is garbage information. So I found that really helped. Like the second time around is like, well, I’m interested, I want to engage and learn about this illness and the treatment options and so on. And which websites should I be paying attention to and which websites should I not be paying attention to?

Do I go on the Leukaemia Foundation website or, Head and Neck Cancer Australia website? I’m probably going to do that instead of listening to the influencer telling me to take some turmeric for my cancer. And so, that’s much more difficult nowadays than it was, say, the first time around I had cancer because there’s so much information now on cancer. So, those critical thinking skills that I’ve used are really, really useful. How to ask questions, how to think about questions, has been really useful as well the second time around but for people. And there’s nothing wrong with researching and understanding the illness. You just got to be so careful nowadays about which sources of information you place value on. 

[00:48:52] Maryanne: Absolutely.

[00:48:53] Alex: There’s a lot of garbage. There’s so much garbage out there. 

[00:48:57] Maryanne: So much garbage and also be aware of who you are as a person. I believe it’s all about timing, so knowing what your needs are in a given moment. Even identifying when you said earlier, not gather your crew, but you had your family with you when you were initially diagnosed as a 21-year-old and you leant on them. But you were also assertive enough to ask your own questions and have a conversation, you had that open ability. You also identified to know what worked for you. Those lovely tips on ask, take a pad and pen with you. Ask the questions. Identifying and respecting the specialist’s time. So shaping that knowledge in knowing what time you had to ask what you needed to know at a given time. I think they’re really key things. They sound simplistic, but as you also touched on, when you’re in the moment, it’s very surreal. People go into appointments and they don’t give thought to it’s just, it’s all happening and they know it’s happening.

[00:49:59] Alex: It happens so quickly because you’re so seriously ill. It’s not like a lot of other illnesses that it’s like, well, we can get you in for a CT scan in three months. And then when you’re seriously ill, everything happens very, very quickly. You’re straight to the front of the line for everything and that’s just the medical side. That’s not including “How am I going to earn money? Where am I going to live?” Like these practical day-to-day considerations, which you’re also grappling with, you know, 21, like “What happens with uni? You know, I’ve got exams in three weeks. How does that work?” All these things. And they happen in a super compressed time frame. 

And when I was diagnosed initially, there’s a discussion about fertility. So I’m a 21-year-old and I had to go see a fertility specialist about “are you going to get a semen sample frozen? We want a donation before you have chemo because we don’t know if it will impact.” And so I’m a 21-year-old in a fertility clinic, four days after getting diagnosed with cancer and making decisions about that kind of stuff. Hugely. Very and just rapid fire, right? Like it all comes at you very, very quickly. And that was, second time around from getting the phone call saying I’ve been diagnosed to being in a 12-hour operation. That was seven days in between those two. So it only took seven days turn around from being diagnosed to going into surgery. And again, you know, at that stage I was working in the private sector, so “What happens with my job? Do I need to activate my income protection insurance? Where am I going to live?” How, you know, et cetera, all these practical considerations that you’re not only making big decisions and dealing with lots but it’s an incredibly compressed time frame. 

[00:51:38] Maryanne: Do you ask someone to navigate that on your behalf, or do you create a list and just approach it one at a time, or?

[00:51:47] Alex: For me, again, this is a very, it’s a very military approach. It’s about things like delegation, so, it’s really important when you talk about not only being confident and assertive as much as you’re able in the healthcare system. But with family and friends, because the instinct, obviously, of family and friends, they flood you with assistance. They want to help everyone. And sometimes you just need to be assertive and say, can you all just just take five for a minute. I just need a, you know, need some time to gather my thoughts. I’m a list writer as well. That’s how I approach things. Breaking up those tasks into what needs to be done and then sort of, delegating them out to family and friends to be able to take care of things. But also, being clear about how much or little help you want.

I’m a super, super independent guy so it can be a bit tricky for my family and friends to know when it’s too much or when it’s too little. I also find that difficult. Generally I like to do things myself. But you know, I make a list, I look at delegations. Sometimes you might appoint someone you know, the second time around I said to my sister “Hey, can you manage the family for me. Can I just have one point of contact with the family and I’ll go I can just send you a message about how I’m doing and you can send it out to the family” to save me having to send seven or eight, you know. And when I was sick about the roster of who would come and be with me or be around.

I said to my sister, “Can you just, can you make a roster?” I didn’t care how the family sorts it out. You just make the roster. Uh, and this is very military again and not everyone is like this. I’m very confident and assertive in doing that, but also not rejecting that love and warmth from the family. Because everyone wants to help and that comes from a place of love, but it can be a bit overwhelming sometimes.

[00:53:26] Maryanne: That’s a great tip for people. Because it just takes away that too much and then you’re having to address many people. And, yeah, delegating and then just going, “Oh, okay, well I’ve done that”. You’ve told them all that you’re very grateful that they love you and all of that. But, that communication isn’t an overwhelming thing for you during such a difficult time.

[00:53:48] Alex: Also things like, you know, both times around, I said to people, look, if there’s a big change, I will let you know. So there’s no requirement to constantly text or call to say, to ask and say, look, if there’s a big change, I will tell you. And again, it comes from a place of love, but look, if there’s a big change, I’ll keep you updated as much as I can and I’ll let you know if there’s a big change or there’s something that’s gone wrong or, or whatever that being reasonably clear about that. And something that, I encounter too, is people comes from a place of love telling you, saying, when you’re going to want to do things, they’re like, “Oh, are you sure you should be doing that, given your state of health?” Which is fine, but it’s like, I might be having chemotherapy, but I haven’t lost my mental faculties. Like I can, I can decide and, you know, sure I feel like absolute garbage, but I’m going to go and hang out with my mates because that’s far better for me than sitting around home.

And look, it’s probably not best physically, but, a great example the second time around, I work for a company called Predagast Australia, a bunch of my army intelligence mates, I work for them. I was back at work very quickly after surgery and they let me go back to work before I probably physically should have been back at work, because they saw how important it was to my mental health to be back at work. So, they were very, very you know, that helps working for your friends, but they were very, extremely supportive of me. Physically, I probably shouldn’t have been back at work, but it was more important mentally for me to be feeling like back to normal life as soon as, as was possible and not sitting around the house, bored, staring out the window all day. 

[00:55:19] Maryanne: Being idle.

[00:55:21] Alex: Yeah. Correct. 

[00:55:23] Maryanne: Look, Alex, I’ve loved a lot of what you’ve shared today. I think you’ve got some lovely messages for many people. I am aware, you may not be aware, but we’ve been chatting for an hour and five. I know that you’ve probably got more to share. We might have you back again, but I’m also aware that sometimes listeners like to listen for a certain amount of time. And, I think you’ve captured some really valuable gems here this afternoon. So, I’d like to thank you for spending time with me today. I think you’re an amazingly strong gentleman who’s got a really special story to tell and you’ve been very honest. So, thank you, Alex. 

[00:55:59] Alex: Yeah, thanks very much for having me. I always feel like there’s a lot of knowledge and experience rattling around that I really hope can help other people navigate what is a tricky time and that, you know, the patient perspective, which is sometimes different patients tend to be focused a lot more on the practical than the big picture in the day to day navigating this as well.

[00:56:17] Maryanne: Absolutely. Well said.