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The need for coordinated care
In this video, Justin, a cancer survivor shares his experience of being diagnosed with colorectal cancer.
You talk about the moments that matter in your life– you know, weddings and death and getting a diagnosis– an MTM, as I call it– a Moment that Matters.
And so we went and saw him 8:00 AM the next morning.
I was diagnosed at 4:30 the night before. So that night I got to know Dr. Google very well and learned that– well, I actually learned what a colorectal was for the first time. It’s not part of your collarbone. It’s actually part of your colorectal. Started texting my friends who were senior execs, who were on the board of Alfred, and then navigated my way– the informal way of navigating the health system– rapidly did that. And then went and saw this guy the next morning. And he said to me, so Justin, I will be your surgeon for the cancer. And this will be your radiologist, your oncologist. And as he was talking, I found myself starting to burn with fury inside.
And I said, can I just cut you off, mate? I’m not trying to be rude. But as I sit here right now, I’ve got a 50/50 chance of living. I checked with Dr. Google, learnt I’ve got to write you a lot of cheques, despite the fact I have the platinum BUPA private health blah-blah-blah membership. And fairly, I don’t even know who you are. I said, where I come from, you don’t do that. You pitch for work. So we should talk about your credentials and why you are the rightful owner of my body and all the things that’s going to happen to me that I’ve learned about in the last 12 hours.
He said, that’s very noble, Justin, that you should want to do that. But that’s not how it works. And I said, mate, you’re just annoying me now. I want to know who they are. And I had some tips from people who they were. And we’re going to see the best radiologists, oncologists, and surgeons in the City of Melbourne in the next 48 hours. Then we’ll come back and we’ll decide who’s the rightful owner of my chequebook and my body. And so we went off and did that process.
And I was very fortunate enough to get beautiful support from the Public Health at the Alfred and then also at Cabrini and met some wonderful people, who are now at the VCCC on the way through, that were invaluable to me. And that was my introduction. That was my training to go into cancer. I found it quite harrowing and quite confrontational, the way that it’s imposed on you, because– I’ll go back to my words– no choice and no control. It’s something that’s done to you. There’s no training. There’s no text message the week before. It’s just something that’s done to you.
And that, for someone that’s used to a little bit of choice, at least a little bit of control in my life– I found that quite invasive. So for me, I felt a strong compulsion to try and give back to other people who might not have the same disposition or idiocies that I do. I found it quite important to talk about my journey and my experience, to try and inspire others not to go it alone. I was diagnosed, three months of radiation and chemo, then surgery– do all the rehab– learned to walk, et cetera, et cetera. Then I went to seven months of chemo, which was once-a-week versus before– it was a catheter. That was probably the hardest part.
And then you get to this weird period where it starts to end. And you realise that you’re going to be OK. I had this meeting with my oncologist in October, about 13 months after. And it was the end of it. I’d just done my chemo. And I walked up, like a zombie, to his– and he said, so you’re all good now. Off you go. And I remember it vividly– still talking to you now, walking out of the hospital, going– [STAMMERING] I don’t feel great. But I feel really unprepared and really quite insecure about the time ahead. And while I was very– because I have a stoma.
And the chemo caused a real strong reaction of foods going inside to re-build my whole diet. And even now, three years later, I still see nutritionalists, trying to work out the infections that– I just cramp. I just double over for a couple of hours. I just can’t– based on some foods or even some environments. The statement, listen to your gut– I’ve learned what it actually means. And when you cut part of your bowel off, you do cut part of your second brain or third brain off. So I’ve learned that the hard way. So for me, I went quite alone. I was very blessed to have a very strong psychologist.
And so I deferred to them for a lot of conversation, because it’s quite a fast-paced job I have. And even coming back for part-time, the expectations are probably quite demanding. So I found that quite a really lonely and challenging time– probably the hardest time, if I’m honest. Before it was this physical pain, just trying to get through each day. And you’re sort of, like, walking through a bomb site. And you just get to the end of the day and starting again the next bit. This was more about– well, jeez I do need to think about five years ahead, because I am going to be on planet Earth in five years.
And so the mental aspect, for me, was very difficult and then just trying to learn with this gut and go and see a specialist and all that. So actually, I went and saw my GP, but the role of them– and he’s a good GP in Hawthorne, where I live. But he sort of just checked out on his ability to help me. It’s like, the exam question was too hard. And I found that I needed a little bit more– in his defence, I felt I needed quite specific support– like, real complications happening here. I got readmitted two or three times afterwards, because the stoma had problems in there. And so GP does stand for General Practitioner.
And he was able to give me general advice. But even things like drugs and morphine didn’t really work, because I was so immune to– I’d been taking such heavy, heavy painkillers to get through. So for him, other than he was a good guy– we got on well– I really didn’t defer to him for much and all. And that’s not to divorce a second point. I think they got an absolutely massive role to play. And Thrivor, the institution that I’ve started– we absolutely look to the GP, because it’s such a important linchpin in the process and of communication and that. So for me, my journey– probably not as optimal as I would have liked.
But that doesn’t divorce from the fact that they’ve got a massive and strategic role to play. So at a horizontal across all the parts of the chain connecting, there were breakdowns. But in terms of my radiologist and in terms of him transparently communicating to me and my surgeon– really good– really, really good– and particularly my radiologists. Because radiation does quite freaky things to you. He was really sound, really measured, could tell that some days it was just all on top of me, and was able to just give me practical tips and things like that. So the number one thing that I would say, above everything, is communication.
The thing that I think there could be a step change in– a real opportunity– is the disposition of the person sitting in the environment– the patient or the caregiver– they’re going to retain, maybe, 5%, 10% of the meeting. And so you get into all these weird things about recordings and stuff like that, which I think absolutely have merit. But if you were to ask me, after most of my meetings– I would always just take a second person, because they could say something that would make me hugely anxious or something I felt was inconsistent with an earlier– so I’d always take a second person just to document. The specialists, for me, were really good.
And then the ability to lift out of there– the person that had a great impact on me, the radiologist, was able to lift out of the technical vernacular and translate it to Dumb Justin that could sort of go, OK. That makes sense. I see what that’s happening there. I found it invaluable conversation. So that empathy to the mindset, whether it be physical challenge driven or just anxiety driven– that ability there is just absolutely invaluable– having that empathy and then also understanding that they are a layperson. And so if you say really long words that I’ve just– I’m going to tap out, which means I’m probably going to lose the next two minutes.
Because I’m trying to work out what that meant back there. And it happens in all professions– banking and consulting and everything like that. People do get quite excited by their discipline. So it’s not like it’s something new. But to me, that communication would be the number one thing. Because you really are hanging off every word.
It was so thrust on me. It was so forcefully thrust on me. Well, actually, I went from this individual– I rode 152 kilometres the day before I was diagnosed– to then having this event thrust on me. And I had a two-year-old, a four-year-old at the time. And just– those boys– I would walk on hot coals for. And you’re looking at them in the night, saying, am I going to be present for you going forward? and so all of those really ill-prepared parts of it– for me, I found it quite harrowing. I don’t want everyone to react like me, because I was quite stupid the way I reacted, in terms of the way I behaved and that sort of stuff.
But it was my training and my upbringing– all those sorts of things– that forced me down to respond to that. And Thrivor– there is a response. It’s my anger and my passion and my empathy all wrapped up into one big ball that I feel I should hand on to others that– God forbid– they go through it.
As mentioned in the opening section of the course, each week, you will be encouraged to watch and listen to real patient stories. These patients have been asked to contribute to this course to help you consider and reflect on how various aspects of cancer survivorship care impact on patients. There is no doubt that patients are central to survivorship care and it is essential to hear the patient’s voice throughout the topics we cover. We hope it brings everything you learn back to what is most important.
As you will have seen after watching the video above, Justin is a 40-year-old fit and successful businessman in the prime of his corporate career. Justin’s life changed significantly following his diagnosis of colorectal cancer in 2013, and his journey wasn’t a positive one:
“The best way to describe cancer is an analogy of bankruptcy. Imagine if you worked all of your life, was not extravagant, saved your money, and on the eve of retirement, there is a knock at the door telling you that you have lost all of your savings. You are bankrupt and they are not sure why. That’s cancer. No dialogue. No preparation. No forewarning; just a decision from someone, somewhere that you are up. A hugely disempowering experience. That’s what kept coming back to me as I was told I had cancer and in the days that followed, I have been robbed.” (McLean, n.d.).
Justin’s story is paramount for all of us in the roles of caring for those diagnosed, treated and living with cancer. Communicating with those affected, listening to their stories, empathising with what they are going through and helping the patient to feel at ease so they can gain trust and confidence in the healthcare system. Nobody wants to feel like a number when going through such a life-changing experience.
Text reference: McLean, J. (n.d.) Justin’s Story. Retrieved from: https://www.thrivor.com/justin’s story
Reflecting on Justin’s story, how do you think his experience could have been improved? If you were Justin’s General Practitioner, what would you have done differently?
This article is from the online course:
Cancer Survivorship for Primary Care Practitioners
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Cancer Survivorship for Primary Care Practitioners
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