Graham Lewis on curiosity, mindset, and communication through his blood cancer journey

[00:00:00] Introduction

[00:02:37] Maryanne: Hello, my name is Maryanne Skarparis and together here with me for our Talking Blood Cancer podcast is Graham Lewis. Morning Graham, thank you for joining me.

[00:02:46] Graham Lewis: Good morning, Maryanne. Thank you very much for the opportunity.

[00:02:49] Maryanne: How lovely. Now, Graham, would you like to share with the listeners where you are based in Australia and a little bit about your blood cancer experience. Where were you? What led you to the doctor in the first place, and what were the circumstances of when you were first diagnosed?

[00:03:04] Graham Lewis: So, as far as where I’m located in Australia, I’m in Adelaide, South Australia, where I have spent most of my adult life. As far as my stepping into the blood cancer world’s concerned, so I’ve been in that sphere for well over a decade now. So I was first diagnosed with mantle cell lymphoma in 2010. At the time, I was 47. Married, son who is just entering secondary school. 

[00:03:29] Maryanne: Mm-hmm.

[00:03:30] Graham Lewis: And my wife and I had, I guess, really rebuilt our professional, personal lives over a decade while we’re raising our son. And all we saw in front of us was blue sky. We’re both professionals. She had retrained from a nurse to psychologist. I had moved from phys ed sport development into organisational consulting. We’re just starting to do some things that we had put aside while my wife had gone through retraining. I was a, fanatical is probably a little bit strong, but I was a very keen recreational cyclist. I had no symptoms. I just came back from a ride one day and made an observation to my wife that I had some small lumps in my groin. A month later, I had a diagnosis for mantle cell lymphoma, and a few weeks after that I started high-dose chemotherapy as a salvage treatment.

[00:04:19] Maryanne: Can you remember hearing those words? You have mantle cell lymphoma, and from memory, what was your emotional reaction to that, and were you with your wife or by yourself?

[00:04:30] Graham Lewis: So my wife, having been a nurse, was I guess very medically aware and her first words to me were ‘Graham, you have to go to your GP.’ And she’d often said that to me about various things. And I probably, like typical husbands hadn’t always, heeded good wise advice and… Anyhow, I didn’t suspect anything was out of the ordinary. All I thought was I, I had been training a bit harder and I thought it was just a little bit of muscle that was exposed. And so I’m off at the GP and there was at the local clinic who was an intern who was thinking, it was, that issue where you get your muscle poking through the skin, what do you call it? I’ve lost the terminology. 

[00:05:10] Maryanne: No, I know, I know what you mean. Like hernia.

[00:05:12] Graham Lewis: A hernia. That’s right. My wife knew it wasn’t a hernia. She said retrospectively it was something a bit more serious. However, just out of precaution, I was then referred on to some ultrasound.

[00:05:23] Maryanne: Mm-hmm.

[00:05:24] Graham Lewis And the radiographer, did the ultrasound, did a needle biopsy, and was saying… They went out of the room, came back in and said, don’t think this is gonna be good news. Then I had to wait for the report. I think it went back and got the report later that day. And it said, suspected for lymphoma. Now, I didn’t even know what lymphoma was. I mean, I’ve heard of leukaemia broadly, but I had no idea what lymphoma was. I mean, what I did know is that there had been some lymphoma in my family. I’d had an uncle. My father’s brother who’d had two instances of it, different types. And he had simply just gone on to an oral chemotherapy medication, no issues either time. And I just thought lymphoma. I knew of Hodgkins lymphoma. I think Delta Goodrem had sort of recently been through that. I think all I knew, lymphoma now that’s not serious and you might be held up for a little while with some treatment. But this isn’t gonna derail too many of your plans. I was then to learn that, no lymphomas, there is a broad spectrum from 60 or 70 of them, from some that are quite indolent to some that are quite aggressive. And I had one that was mantle cell lymphoma, was really… At the time, it was given as being incurable, whatever that means in the cancer world. But given that it had typically manifested with symptoms of with…, both indolent and aggressive features, depending on the individual. It was a particularly difficult lymphoma to treat. But I really just took the view that, look, I’ve gotta step up to the treatment. There was gonna be a five-month regime of something was called hyper-CVAD. And it was just get through that I knew I was gonna have an autologous stem cell transplant. So my background had been playing sport and cricket at a elite level, and I just looked at it as another, going through a sporting season, going through a cricket season.

[00:07:13] Maryanne: What lovely and fabulous mindset. I mean, that is unique. That’s a very unique approach to something that, you know, some people have a lot of fear associated when they hear anything that’s in the cancer family. But it sounds to me that you were able right from the get go to place it into a mindset that was approachable, that was doable, that you could place your thoughts towards, okay, I’ve gotta put this time towards treatment. Did you have to step away from your paid role, your professional role? What did that time look like for you? 

[00:07:46] Graham Lewis: As far as an effective approach goes, I would say yes and no. Yes, on the surface in terms of being pragmatic and putting aside those, what could be perceived as unhelpful emotional aspects. And took a view that, ‘Look, I’m a part of this. I’ve gotta trust the science and I’ve just gotta step forward in the best physical and psychological space’. However, in doing that, and this probably took maybe, if, it’s resolved now, I’m not sure. It probably is less of a factor now. But probably took maybe a decade to really come to light, the extent to which that approach negatively impacted upon my family. ‘Cause the other side of that is this person who’s central to the family just disappears. Now, I didn’t disappear physically, but I probably disappeared emotionally. Because I was going into this battle that, you know, I’d have to go and step up every three weeks for another cycle of treatment, and they’d see me come home. So the treatment was delivered inpatient. They’d see me coming home, looking a bit green under the gills for 24 hours or so, and then losing hair and then… Altered routine and that I was very well supported by my employer at the time. They allowed me to keep working right up until just physically well, they probably stopped it before… ‘Cause I had a role where I was client-facing, so I was meeting people face-to-face. So there was issues around that and having continuity… Infection risk, all of those things were real. And then I slipped over into just some project work for a period of time and then went on leave without pay when I transitioned. Fortunately, I was very well insured with income protection. And so, you know, from that side, as far as the income continuity side of employment, which for people in this space can often be a real issue. 

[00:09:36] Maryanne: It can be, yes, causes enormous stress.

[00:09:38] Graham Lewis: Mmm. So, I was very fortunate by virtue of the understanding of my employee and probably having had the, I don’t know what it was to listen to some advice when I was young in having income protection.

[00:09:50 Maryanne: You know I love that, you touched on that you spent some time or that ripple effect of a diagnosis because you’re correct. It’s not just about the patient. It is very much about their significant others. And whilst you observed yourself, you know, maintaining a certain role in the initial times, and your colleagues and your employer, supported you in that space. You said that you had to keep yourself contained. And a lot of patients that I’m in contact with say they need to cocoon themselves, and often in that cocooning stage, because it’s all about self-preservation, and it’s all about that adjustment to their new physical self. Then your emotional self, that adjustment to what life looks like. The loss of maybe how they thought they’d see themselves. It is a massive adjustment. How was your communication during that time with your significant others to get you through that? Are there any key points that you feel were of great value? ‘Cause often I find, you know, we all know that, our connections are added element that help us with our health and wellbeing. They’re very vital. Are you able to share what connections, what communication looked like for you during that time? When you did cocoon yourself, you got on with the day-to-day routine of work, but then there was your home life, your wife and your son. What did that time look like?

[00:11:14] Graham Lewis: I guess probably the view I took was that I was stepping out. So let’s say through the first initial diagnosis, that I had six months to get myself recovered and back functioning as a father and a husband. And so what I was mindful of is that my son, who had just transitioned into secondary school, who was well supported and he wasn’t disrupted from doing the things that were important for him. Similarly with my wife, who was working full time at the moment and, at the time, and was in a very supportive workplace. So that was important for her to keep that continuity. Then, when I stopped working, I had some time at home, where I was, doing some projects. What I did is, I had been quite heavily involved in a bike riding community. 

[00:11:58] Maryanne: Mm-hmm.

[00:11:59] Graham Lewis: And so I kept riding my bike and so I had a couple of colleagues that I’d go for rides with. So I kept that routine going. And then a group of us who had graduated from secondary school at the same time had organised reunions every 10 years. And that 10 years came up right in the middle of that period. And so there was some concentrated work organising that where I was in contact with them. And it was the very early days of being able to do things remotely via video conferencing. And so I wasn’t always able to get together as I could. But, you know, there’s a couple of things like, we were in a very supportive neighbourhood where if somebody wasn’t well, everyone would be looking out for them. So I think I felt…, once again felt quite fortunate personally, that I was supported on a number of levels and have places to go that weren’t just my family.

[00:12:46] Maryanne: That’s lovely, Graham. Yeah. And you are blessed. ‘Cause you know, as I said earlier, connections are key to feel that you’re in that buffer of support. Because life is a rollercoaster ride and there are ups and downs, and I think that’s normal for all of us. But to know that you’ve got a group of people around you I think is very comforting. So with regards to your recovery during the last 10 years, are there any key things that you delved into, embraced, chose, picked up that you feel have contributed greatly to where you are today?

[00:13:18] Graham Lewis: That’s a really good question, a difficult question to answer succinctly, because there are so many phases of this. I feel, in talking about, I don’t often talk about the first phase of diagnosis. ‘Cause then in 2013, I relapsed and underwent an allogeneic stem cell transplant. And it almost, talking about the early phase, almost feels like it’s a little bit surreal that you are in this, a bit of a fantasy world because that experience, albeit, was challenging, relative to what happened after this allogeneic stem cell transplant three years later, it is another level. So let’s say from 2014 is now over a decade, and that my wife says to me that we’ve been married 30 years now, just over 30 years. And so for her, when I was diagnosed, it was almost, that is a marker in her life.

[00:14:08] Maryanne: Yes.

[00:14:09] Graham Lewis: Okay. There’s life before transplant. There’s life after transplant, and, some of her moments it’s when she lost her husband.

[00:14:16] Maryanne: Oh.

[00:14:17] Graham Lewis: And I think also, I mean, I’ve been very active in my son’s first 10 years, 12 years. And then just by virtue of the treatment in the main, and the impact it had on me physically, particularly after 2014, that was very difficult to sustain that. And albeit, you know, children grow up and they become more independent and, he has a view of the world that when he entered teenage years, he lost a father. I don’t know that I’ve got the language to describe succinctly what that difference is, what that shift is between 2014 and now, other than I think one of the…, I always had this notion that I was very goal-driven.

[00:15:02] Maryanne: Mmm.

[00:15:03] Graham Lewis: I had this notion of where we wanted to be as a family, where I wanted to be physically, where else. And for a long time I held this view that even after the second transplant in 2014 was uneventful. So I was discharged in 15 days from transplant, which is a very short period of hospitalisation. And I had this view that I was gonna recover and get back to working or get back to these things, back to normal family life. And as time went by and the GvHD after 2017 really started to take hold…, 

[00:15:35] Maryanne: Mmm.

[00:15:36] Graham Lewis: And that just became completely unrealistic, unattainable objective that I think really peaked out by 2020, when I refer to the period of just staring into the abyss. Where for me life was, and for my wife as well, who had to abandon work, life for us was getting from one day to the next. So an achievement for me was leading from my bed to a lounge chair and then getting back to bed at the other end of the day. And so, now, from that absolute low, I certainly have recovered and regained some functionality. But, you know in terms of where I was at 2014 where I was really a 51-year-old going on 35. Now I’m a 61-year-old who at one stage was probably, well say my late fifties, I didn’t even think I was gonna see sixties. I was a late 50-year-old going on probably 95. Now I’m probably a 61-year-old mentally I’m pretty good. But physically the limitations from the disablement from the GvHD as such that, I move like an…, a late 80-year-old. 

[00:16:42] Maryanne: Thank you for sharing Graham. ‘Cause that’s actually very raw and very honest. And, a lot of people who I know, I’ve been with the foundation 31 years, so a long time. And I’m still in touch with people I met though, that many years ago. There’s a few who just spring to mind, who live stoically with that chronic graft versus host. And, you know, their ability to focus on what brings them joy has always astounded me. Yes, with limitations, but they have been able to resurrect themselves in a way, but refocus on what joy life brings them. But in saying that, it does come with an element of heartache, because it’s not just you, it’s the loss, it’s the losses of how you thought life would look. It’s the loss of having those opportunities to make choices of how you think you would like to live life, because of the limitations. Can you share with the listeners about how you choose to live with your chronic graft versus host? What impacts you most, and how you manage it?

[00:17:49] Graham Lewis: So I think, you know, personally, things really came to a moment. I couldn’t say a specific point of time, but 2020, I had been in rehabilitation after having been to Melbourne for some treatment for ECP. Had to abandon that, due to COVID. Spent some time locally in hospital in Adelaide, this was treatment for the cutaneous GvHD and also the muscular involvement. I then went through rehab and arrived home in a wheelchair, having lost probably 70% of my body strength. And so the next six months were, just probably even where we, even longer, maybe six to 12 months were just survival. And the thing with this that was just the most difficult to bear, was seeing the impact on my wife in particular, who had no escape. My son, who was studying at university. He was still living at home, but he had an independent-ish life. But for my wife, there was just no escape. And so she lived this nightmare, every single day. She had until 2020, mid 2020 had the relief of her work where she had a really supportive group around her. But then, you know, just the psychological and the physical strain of all this, she needed to abandon that. And so I saw the suffering that she had, and it was just, my mindset was, how can I relieve her of this? If I could just take myself out of her life so that she could continue to live independently, financial stability, with people around her. And I could do that without impacting negatively on anyone. That’s what I would’ve done. But of course, there’s no straightforward decisions. I mean, I had never had a suicidal thought in my life. I just went, well, what can I do here? And I think, you know, just not in the end, I think I got to is that I didn’t want to leave a legacy of the guilt, whatever goes with people who take matters into…, or those around people who take things into their own hands. And I just, once again, it wasn’t a decision in a moment, it was this decision that evolved over a period of time. But fundamentally, I was just gonna try and find something positive out of this train wreck of a medical disaster.

[00:20:02] Maryanne: Absolutely. And you know, I can see the emotional pain that has impacted you and I can only imagine, I mean, you know, I know because of the love that you hold for your wife, you are wanting to make things different for her. But you are the love of her life and her choice was to be with you regardless. So I would imagine having not met your wife, but relationships are intertwined and often I try to encourage people ’cause it is hard and it is tough. Because chronic graft versus host and living with the impacts and the debilitation is really difficult and quite challenging. But at the end of the day, I often encourage the patient to recognise that partner, that loved one, wouldn’t choose to be anywhere else. And it’s the disease and it’s the two of you living with that disease. So in saying that, Graham, you just mentioned that you tried to look for ways to bring some positivity. There would’ve had to have been in that low, because it was a low, around the time of 2020 you mentioned, which was of course those dreadful lockdowns that left a lot of people isolated anyway. So even those who did not have health issues, they too were isolated. So we actually all lived in an existence that was quite sorrowful, fearful, a whole range of negativity. How did the two of you navigate that time and is there one moment that was the turning point?

[00:21:29] Graham Lewis: Yeah, once again, a really good question. My sense, I say this tongue in cheek, but COVID for me personally, I mean all that did is brought everyone else back to my level.

[00:21:38] Maryanne: Right. Yep. A lot of people have said that. 

[00:21:41] Graham Lewis: Now I would not wish that on anyone. However, when I think what it did for lots of people, put pressure on relationships because it just intensified things that people’s escape…, not escape isn’t the right word. The places they went to renew, refresh, to have other experiences, and they were just, there. And I think my wife and I, we’re sitting in our lounge. We’ve got two-story place, couldn’t go upstairs, bedroom’s on the ground level. And we’d do our morning routine things and I’d be sitting on the recliner, 10 o’clock in the morning, we’d have a conversation. We talked about what we had to share, and it was like, God, what are we gonna talk about for the rest of the day? What are we gonna do for the rest of the day? And it was like two stones and we had our own places that we just went mentally. For me personally, and I think there’s also once again a bit of a bittersweet for my wife in that, I mean I’ve always been quite driven by causes, justice, seeing things improving. I think we knew sort of late 2019 before we get to Melbourne that there had been some shortcomings in our treatment, particularly the Gv…, GvHD and my wife was medically trained. She’s very research aware. I’m not medically trained, but I do have academic experience, and I come from a health sciences background. And so want to be driven by the facts so I had done a lot of reading. I had also done a lot of journaling. And we’ve been raising concerns within the treatment fraternity for probably three or four years. About, not in an aggressive way, or confrontational way, but really in a way, let’s use our experience to improve things.

[00:23:15] Maryanne: Yes. Which with your knowledge base and your connections, why not? If you can be the voice for others, why not?

[00:23:23] Graham Lewis: And so then it was a question, okay, what are you gonna do about this sort of knowledge? Who cares? And, well, I’m not really able to do much about it. One of the things when I went to Melbourne for ECP, it was just a revelation on so many levels. So firstly, getting axed. I was based in Melbourne for two months across the road from Peter Mac. I’d had probably two years of just continual ulceration, upper body, back, waist, face, that was for large periods it was daily wound dressing. And nothing was working within three weeks of starting ECP that had essentially resolved. But it was also stepping into another sphere of healthcare that was like, it was just a revelation.

[00:24:02] Maryanne: Mmm.

[00:24:03] Graham Lewis: It was just like a breath of fresh air. Things that were hard to get done happened easily. And there was many facets of it because by that time, my confidence in the treatment team was pretty much non-existent…

[00:24:14] Maryanne: Mmm.

[00:24:15] Graham Lewis: And this really helped to turn that around. And then the other thing that I…, was stuck in an apartment for site at ECP a couple times a week, and I had other appointments. I had some time in my hand and I just made the decision, I’m gonna get hold of my notes and I’m just gonna document our experience. And I didn’t do anything with that until early 2021. It was sort of, there was this thing going in my mind. If I don’t know anything about it, I probably should do something now. I didn’t really have a plan, and it was just two accidental conversations, really. One was with a colleague I’d studied with, his husband was a journalist who said, ‘you should speak to my husband’. He then referred me on to an MLC, who was chairing a committee into the future of healthcare. So me and my wife appeared before a parliamentary committee. The other conversation with a neurology consultant, I was seen just on a watch-and-wait or follow-up, 12 months cycle, six months, 12 months cycle. Just asked me at the end of a consultation how I was going psychologically, and I said, look, I’m doing okay. My wife’s really struggling. The thing for me was that what I said to her was that living with the fact that particularly this muscle condition was probably preventable, she said, ‘look, I’ve had interest in quality and safety. Would you like to do something about it?’ And that then led to a clinical review of the stem cell transplant service. And there was so many other little things that then, stem from that, those two themes in terms of advocacy work. And I guess always the question is, probably an issue is, probably in the last couple of 12 months or so to 18 months that advocacy work has been much more focused. Prior to that, it was, reactive isn’t probably the right word…, but it was more just responding to opportunities that came up rather than being strategic. And it’s probably happened organically…,

[00:26:00] Maryanne: Mm-hmm. 

[00:26:00] Graham Lewis: Whether, you know, I guess always the question is what impact does it have? The other side of it, while it does give me a sense of purpose, that maybe your experience and other insights can be useful for improving the experience of others. It is something my wife does find difficult because it takes her back to reliving the experience again. So we need to be very careful around, you know, she’s respectful of what I do. I’m respectful of the difficulties she has. And so, it becomes one of those things where with any relationship, there’s things, it’s not about avoiding things, but it’s just about being sensitive to other people’s needs.

[00:26:40] Maryanne: I think open communication and sensitivity to having an understanding around what people can manage themselves. So obviously, the two of you have that ability, also with your son, to really know each other and have a great appreciation of how you both tick. You know, what you both can manage emotionally, yet you give yourself that lovely space to pursue what brings you strength. With your investment in that advocacy work Graham, I would imagine that that gives you a lot of comfort. ‘Cause in some ways it may be meeting a need of you wishing someone had that advocacy in place for you at a time when you are vulnerable. Because any patient, I think who is happy to step up and step into the space where they’re invested in their disease outcomes, reactions, you know, better care. I think they’re not only looking for themselves, but for the broader personnel who are also impacted, ’cause they understand what it means to the person living with a condition.

[00:27:43] Graham Lewis: We are very fortunate in Australia because we have universal healthcare. And that I’ve got an idea, I haven’t got the specifics on what say the public investment had been keeping me alive or keeping other… And it is, significant. You know, we are fortunate to have that. And I think many people, and I go through this a bit too, in that, well, okay, now there’s certainly clearly aspects of our post stem cell transplant care that were not of a level you would expect in Australia. 

[00:28:09] Maryanne: Mmm.

[00:28:10] Graham Lewis: And so it’s very easy to have a critical mindset. Then the other side of it is that well, you know, maybe I should not say you’re not grateful, but maybe I should just let go of that completely and have a mindset, I should be totally grateful for the life that I have. Now I don’t think I’ve completely reconciled those. 

[00:28:31] Maryanne: No.

[00:28:32] Graham Lewis: However, I do think, I do feel, and this is something that I think went through my mind in making a decision whether we could have just set, stayed, done nothing, stayed and done…, just focused on myself, family, et cetera, and completely ignored what went outside of our sphere. But I think something that was really deeply embedded in me and probably best expressed in, ‘the standard we walk past is a standard we accept’. And if there was something that I could offer that would improve the experience for others. And I think this goes a bit both ways because I think we’ve heard the.. the concept of someone asking for somebody who’s at a later stage of life, being asked the question, what advice would they give to their younger self? So, reframing that question, what advice would you give to your pre-diagnosis or pre-transplant person? And, you know, there’s been a huge amount of learning and probably things that we could have done. That might not have completely changed the outcome, but may have lessened it. I think a lot of that was around just being more curious, not being as trusting, not being suspicious, but I try to pride myself in stepping up. Well, I’ve gotta become a haematologist, because I had the view that I’ve gotta do my part. So across the medical terminology, I’ve gotta be, you know be able to have an intelligent conversation. And I think always the question that my wife and I’ve often had this, not as often now, fortunately, the conversation, ‘what if we had this? What if we had that?’ And I think one of the things for me more generally, I think my philosophy to life is that I don’t want to ever have, be able to look back and go, what if I’d done this? Or I wish I had done that. And I think that drives me a bit now in that okay, I mean, I can see some things that would…, in Australia, in the blood cancer stem cell transplant arena, that there’s some issues that do need addressing that could have an impact on the outcome for others. With that, you know, within the scope of what I can physically do, what financial capacity I have supporting my family. I don’t want to…, when it’s all said and done, I wanna be able to walk away and say, ‘look, I gave it my best shot’.

[00:30:39] Maryanne: Yeah, you contributed well. I love how you used the word curious. ‘Cause it is a word that was recently shared in another conversation that I held, and it’s an interesting word, remain curious. And I think curiosity is also that investment in self. I don’t know how, like if you look at the components of an individual, you’ve got their physical self, their emotional self, and their spiritual self. Some may say they place their physical trust in the treating team of who they’ve engaged with, and they trust that they’re going to provide the right treatments. However, there is a physical component of self that’s within your control that you can choose to do certain things yourself. Those being, you know, maintain a certain physicality, looking after your physical self, nutritionally, all of those sorts of things. Then you’ve got your emotional self and what does that look like? You’ve used the word mindset and the importance of connection. And I think they’re really valuable things. And of course, there’s your spiritual self, whatever form that may take. Some people find that a spirituality of whatever nature provides that strength when you are in those low stages. I love how you mentioned the word journaling. I do think that provides an avenue to either release difficult thoughts and processes or create pathways. You’ve obviously been in a role prior to diagnosis where you were a planner. You obviously set different standards and goals for yourself with your cycling and your connections. You’ve got some lovely messages to share, Graham, from what you’ve shared just now. So with advocacy, how do you go about that? Who do you reach out to? 

[00:32:18] Graham Lewis: I guess where I’m now is having far more ideas than I have money or people…

[00:32:25] Maryanne: Not real. 

[00:32:25] Graham Lewis: …lined up ready to do something about. So, probably where I’ve got to is trying where possible to be… Probably just some of the stepping stones of this underlying curiosity you made reference to, how important it is for people to be curious and it’s a psychological theory, identifies that openness to experience is one of the big five personality constructs, and some people are just open to experience, to exploring things. Now, in the extremes, these are people who want to go and climb Mount Everest and go on…, not quite in that class, thank goodness. But you know, there’s certainly an interest in sort of knowing what’s over the next hill or what’s over the next river. And I… that once again, probably not more following your nose than anything that’s been carefully planned, has just accidented me into insignificant pathways, being some of the work I’ve done with some of your colleagues in the Leukaemia Foundation.

[00:33:16] Maryanne: Mmm.

[00:33:17] Graham Lewis: And just being able to see things more broadly on a national perspective, which helps, with centering, helps making sense of own experience. And so one of the things that I, established more generally within blood cancer arena, but certainly within stem cell transplant that your outcomes are heavily determined by your postcode. And so, you know, that comes down to there’s many things that, variables then that go around the postcode. And so for those people who may, away from the population centres on the East coast or then away from urban centres, getting access, you know, whether it’s diagnosis, whether it’s treatment options, whether it’s follow-up care, those things can be much more problematic. 

[00:33:59] Maryanne: Mmm. Can I just ask you again, who is your donor?

[00:34:02] Graham Lewis: My donor was my sister.

[00:34:04] Maryanne: Your sister.

[00:34:04] Graham Lewis: Who, at the time, sort of the narrative was that you have a matching related donor. And so that is a good thing. The subtext, the fine print of that, that probably only really become clear later on is the exceptions to that are if they’re a female, if they’re older in years, if you’ve had multiple pregnancies and if the donor and the recipient are CMV. And so in that instances the risk of GvHD go up and make it a much higher risk procedure for GvHD compared to matching unrelated donor, particularly male to male.

[00:34:37] Maryanne: Do you think you would’ve gone forward with transplant if you had that information?

[00:34:41] Graham Lewis: Well, I think, in retrospect, decision making is easy. But about 70% of stem cell transplants are done for AML. So in those instances, majority of cases, people don’t have time.

[00:34:52] Maryanne: Mmm.

[00:34:53] Graham Lewis: I was relapsed mantle cell lymphoma, so I don’t have time, meaning to muck around finding a donor.

[00:34:58] Maryanne: Yeah.

[00:34:59] Graham Lewis: Okay, gotta find a donor. We get the best we can and we make do. Mantle cell lymphoma, there isn’t that imperative. So there were months and what once again, there’s no certainty of this, but there is the probability of a probably 89% chance that going to a donor registry there would’ve been a matching related male donor. That doesn’t necessarily mean that GvHD wouldn’t have been a factor. But it certainly would’ve changed the mindset. Once again, this is probably whether it’s naivety, taking at face value what you’ve been told, should you be able to trust the medical fraternity to be across all of that? You would hope so. However, you know, once again, not easy question to answer.

[00:35:38] Maryanne: No 

[00:35:38] Graham Lewis: But you know, I think on hindsight you might have made a slightly different decision.

[00:35:42] Maryanne: Do you know where you are at today, Graham? ‘Cause I’m just aware of the time, given that, you know, everything that you’ve shared here, would you say that there would be three pieces of advice or three recommendations, or one life choice or we call them, you know, pearls of wisdom, that you would like to give the listeners, that you feel is something that grounded you, something that kept you going.

[00:36:08] Graham Lewis: Probably that’s, once again, a very good question, a difficult question, but I’ll try and be as succinct as I possibly can. I guess what happens is under pressure or under difficulty, we revert to our basic selves. I think we’re hardwired for survival. And I guess for me, when it really got tough, I was so fortunate that I had a wife who stood by me and I had some people that I’d had experience with school, sport, not massive numbers, but just were there at critical times. And invariably it was probably just down to incidental things that I had done enough for them, that they felt…,

[00:36:43] Maryanne: They were there for you.

[00:36:44] Graham Lewis: …,I was worth rallying around. And those things, you know, were just so important when you don’t think you’ve got any value, you know, somebody feels that…, What’s the advice? Probably thinking outside yourself, perhaps. I think what’s the other advice is probably around curiosity, really. And don’t underestimate what you bring to the conversation in a medical sphere. There was some advice, I can’t take credit, I mean for this, but a long-term survivor said to me, and she’s like 1999 bone marrow transplant, not stem, said to me in the last couple of years…, Look, what she recognised early on is she had to assemble her own team. 

[00:37:21] Maryanne: Mm-hmm.

[00:37:22] Graham Lewis: So the learning, I think is that we don’t have to do these things on our own. 

[00:37:27] Maryanne: No.

[00:37:28] Graham Lewis:  But we’ve gotta do our bit. And that decision as to who’s in your team will be a critical one. And for someone to be in your team, it goes both ways. You know, it goes, what I said before too, you’ve gotta be given something as well. And probably the last two things I would say… You’ve touched on this point before Maryanne. That around mindset and my humble opinion in dealing with these long-term chronic conditions is probably 75, 80% mindset is that mindset of, well, when you think the relationship’s all over, just step away, hang in there, go again. Or when you think, you know, I just couldn’t possibly get up tomorrow morning, just that mindset of, I didn’t ever think I’d walk again. I didn’t approach it with this zest that I’m gonna, you know, do rehabilitation four hours a day and I’m gonna be…, but I just sort of had a schedule of going to rehab, gym and that just kept open the possibility. Now I’m not out riding my bike again, but I am able to walk distances unaided that you know, in 2020 were just beyond any comprehension.

[00:38:29] Maryanne: So you made a commitment, Graham, even with the ability that you have, you make a daily commitment to invest. Investment in time, investment in a relationship, commitment. They’re all words that I think can be adapted to all aspects of life. And I look at investment and I think, you know, okay, relationships, we have to invest in our relationships because if we don’t, they lose interest. You know? If you are someone who’s a figure-thinking person, it’s the same as our energy levels. We invest in wanting to improve or maintain or sustain, but it’s investment to get up and at least participate or engage. 

[00:39:09] Graham Lewis: You’re very wise, Maryanne. I feel that the people that you serve are very privileged to be able to interact with somebody who brings such a long experience in this area. 

[00:39:19] Maryanne: Oh, thanks, Graham. Can I just say it’s meeting people like yourselves that have been my greatest teachers. You know, and none of us see it in each other, but it’s in these conversations that draw out really good conversations that may plant a seed for someone else.

[00:39:34] Graham Lewis: In relation to just one other, couple of things to finish off with. That one, towards the advocacy, one of the things we’re working on at the moment is a gathering of stem cell transplant recipients from South Australia are looking to replicate some of these gatherings that have been going for a long time in North America. And number of things motivating, but not the least of which so many of people, and this is my experience, so many people, who’ve…, stem cell transplant recipients I’ve spoken to have made the comment that there’s no one, like another recipient ‘gets it’ to the same extent. And you know, I guess I would extend to you, I mean, you are not a survivor, but you are working with survivors and you are by osmosis, being taken into their inner worlds of what they’re actually experiencing. And so one of the, I did through probably about 2018, the Leukaemia Foundation’s Blood Buddy Program, introduced to an individual in Perth. I was looking for someone who had GvHD. He’s just became a very close friend. We don’t talk about stem cell transplant. We talk about all the various phases and challenges we are going through with other things, but we often will say, look, no one else gets it…,

[00:40:42] Maryanne: Mmm.

[00:40:43] Graham Lewis: …like you.

[00:40:43] Maryanne: Well, that’s the value of what we hope Talking Blood Cancer achieves. You know, having that opportunity for people who are listening, listening to people like yourself and what you’ve shared and there’s a resonating because of, you know, that you bring forward in conversation something that they have had the lived experience. And even in just hearing that there is a comfort in knowing that you’re not alone.

[00:41:07] Graham Lewis: Stories are powerful in that people see themselves in other stories…, 

[00:41:10] Maryanne: Yep. 

[00:41:11] Graham Lewis: …where everyone has their own story, but we can learn so much from…,

[00:41:13] Maryanne: Each other. 

[00:41:15] Graham Lewis: …listening carefully tells us so.[00:41:18] Maryanne: Well, thank you, Graham. I’ve really valued everything that you’ve shared here, and I thank you for your time.