A family’s battle with leukaemia

[00:02:36] Kate: Welcome to Talking Blood Cancer. I’m your host Kate Arkadief and in today’s episode it is one that truly touches on the heart and we share how this family faced one of their toughest challenges head on. When Bhaskar heard the words acute lymphoblastic leukemia, his world and that of his entire family shifted in an instance.

[00:02:58] But what unfolded in their story is nothing short of extraordinary. And I had the privilege of sitting down with Bhaskar and his remarkable daughter Urvi, whose bond grew even stronger through one of life’s most daunting challenges. Their story goes far beyond the medical journey of a diagnosis and treatment.

[00:03:19] It’s a profound testament to love, sacrifice, and unwavering family unity. When Urvi stepped forward to become her father’s stem cell donor, she wasn’t just offering cells, She was offering the gift of hope, of future, and of life itself. Together, we delve into their emotional journey. From the heart stopping moments of diagnosis, the anxiety filled days of treatment, from Urvi’s powerful decision to donate, and to the countless moments that tested this family’s resilience.

[00:03:52] And through it all, Bhaskar’s wife Suti and his daughter Medha stood as a steadfast, creating unshakable circle of love and support that carried them through their darkest hours. And what emerged is more than just a story of survival, it is a beautiful testament to the extraordinary strength that we find in ordinary moments.

[00:04:17] The incredible power of family bonds and the unexpected blessings that bloom in life’s most challenging seasons. So join me for this deep and moving conversation about challenge, hope, courage, and the kind of love that knows no bounds.

[00:04:36] Kate: Hi everyone and thank you for listening to our podcast Talking Blood Cancer. Today we actually have a really unique episode where we’re having two guests on this episode and I will have them introduce themselves first. So first of all we have the patient Bhaskar and he will tell his story and then we also have his daughter Urvi who is here.

[00:02:57] So we’ll start with you. Bhaskar.

[00:03:00] Bhaskar: Thank you all for, joining to listen to this podcast. I, hope I am able to share some unique insights. So my name is Bhaskar Majumdar. I’m roughly about 64 years old. We have lived in Melbourne for the last 25 years, but out of that, no, I was, I had gone to Canberra and, during the Covid time, so it has been almost four years back that I went to Canberra to take up a job with defenc-e and so we left Melbourne. But I came back I think the end of 2022. Yeah. Back to Melbourne. Because the particular type of leukemia that is the ALL (acute lymphoblastic leukaemia) variety.

[00:03:36] That is not treatable, like they don’t have the treatment for it in Canberra. So I came back to Melbourne to avail that treatment. And since then, I’ve stayed in Melbourne because of the complexities that have arisen and found that, the treatment here is, excellent.

[00:03:52] So just to minimize my risk, I’ve stayed back in Melbourne.

[00:03:56] Kate: Yeah, wonderful. Thank you. And Urvi,

[00:04:00] Urvi: Hi, I’m Urvi and I’m Bhaskar’s daughter. I’m 31 now and I was born in India and we moved when I was six to Melbourne. So I’ve lived here since then.

[00:04:09] Kate: And can I ask you, what special role do you play in your dad’s treatment, diagnosis, blood cancer journey?

[00:04:16] Urvi: Yeah, so my dad was diagnosed with ALL leukaemia, so acute lymphoblastic leukaemia. And we were told that he needs a stem cell transplant after the first few rounds of chemo. So we did testing and I actually was my dad’s stem cell donor.

[00:04:31] Kate: Oh, wow. So it’s a really unique story because usually sometimes they’re unrelated and they’re not children. They could be a sibling or they could be sometimes unknown. So you hold a unique story to this.

[00:04:44] Bhaskar: I just going to add that Urvi was very proactive. I mean, like the day I got admitted to the hospital in Canberra the very next day I think she went on, if not the very next day, maybe the first two days itself, she know, went and got her blood test done to check how good is the match with her.

[00:05:04] Kate: Yeah.

[00:05:05] Bhaskar: She has been over proactive. We never asked her to be my donor or anything. But ah she has done things on her own.

[00:05:13] Urvi: It was good. I feel like at the time, actually, when my dad first got diagnosed I listened to this podcast a lot um, because I found that the resource on Spotify, so all of the stories here really helped me get an understanding of what the next few months and years would look like. So, yeah, just thankful for this resource.

[00:05:31] Kate: Well, I think it’s a really important resource because people, I mean, as you know, Bhaskar, you could have been laying in bed or over, you could be laying in bed at two o’clock, three o’clock in the morning and just seeking information and seeking to know that somebody else has walked this path and that’s why this came about and that’s why this was born because we know that people want to connect and hear similar stories.

[00:05:52] So to be able to share on this platform, the journey, because as listening to all the podcasts and meeting people in wait rooms. Everybody’s journey is different. It doesn’t matter if you have the exact same diagnosis, same treatment plan, same doctor, your outcomes, your journey can be so very different.

[00:06:09] So,

[00:06:10] Kate: I really am a storyteller in the fact that I like to go back to the beginning. I think that’s a really nice place to start. So can you tell us, Bhaskar, what was happening for life? For you around this time, just before you got diagnosed, were you unwell or how did it all, cascade and unfold for you?

[00:06:28] Bhaskar: Yeah. So, life was very normal for me. I mean, I used to do a annual blood check, and I did that at the end of November, 2021. And no, my hemoglobin was 158. My platelet was something like 120 or something like that. So it was very normal that I consulted the GP, and he said that there’s nothing to be worried about. So I went on, after that it was Christmas time and was happy, you know, just doing my own work. And then the government started advertising that it is, now is the time for people above 60 to take the COVID booster shot.

[00:07:02] Okay. So I had previously taken two AstraZeneca shots and nothing happened to me. I was fine. But as soon as I took the Pfizer mRNA, then within 10 days I was really struggling, so with fever, stomach upset I visited the doctors, like the GPs quite a few times and they thought that, it might be COVID or might be viral fever.

[00:07:27] So, almost a month I lost trying to figure out what has happened suddenly. Eventually I called a home doctor. I was alone in Canberra at that time. My Urvi was in Melbourne and then visiting Adelaide for the Fringe Festival.

[00:07:41] My younger daughter, she was in US on a scholarship at Yale and my wife, she had gone to India to support her mother. She was at the end of her life almost. So, there was nobody actually there with me when all these things happened. So I went into the Calgary hospital in Canberra.

[00:08:01] I went to the doctors, like the home doctor who was a very young chap, he said that don’t waste any further time. You, next day you go into the emergency of this hospital, Calgary, which was closer to where I was staying, and report yourself and see what happens. So I went in there the next day morning and waited there for, it took a bit of time to get in, but no, they immediately, they did a blood test and they, told me that, your blood’s white cell count is 300 times that of a normal person.

[00:08:34] And the lady doctor in charge, she said that, Bhaskar, you know, I have got this very sad news for you. And uh, what we have found is that you have got leukaemia or blood cancer. And I know that you will go through some terrible times for the next six months at least.

[00:08:50] Wherein you have to go through chemotherapy and other things. But keep it in mind that this is treatable. It is not that it cannot be treated. I’ve never been to a hospital before or, even very rarely visited doctors. I had, you know

[00:09:05] Kate: What an introduction

[00:09:07] Bhaskar: Yeah, I had gone to the hospital and, you know, I had thought that, you know, they will, they will just see me and let me out in a few hours time.

[00:09:14] But then they said, no, we can’t, we don’t have a haematology department in this hospital, but it is there in the Canberra hospital, which is a bit far. Then they organized an ambulance to send me over to the other place. And then again, I was thinking that maybe I’ll just, they will let me out in a few hours.

[00:09:34] And then I was surprised to know that actually I’ve got to stay there for a few days. -That really surprised me that I’m going to be admitted to the hospital in the first place.

[00:09:45] Kate: Absolutely. And I think too, like when you hear those words, blood cancer or leukaemia in your case, acute lymphoblastic leukaemia (ALL), had you ever heard those words before or even you know what it was?

[00:09:56] Bhaskar: I mean, I’ve heard it, I mean, leukaemia, obviously I’ve heard of it, but not, I’ve not probed into it not understood that there are so many varieties of it. And the lady doctor, she was wanting me to get on to a family member. The only family member was Urvi in Australia at that time.

[00:10:14] And no, I said that, please don’t do that because, you know, I can keep my head cool and face whatever is coming. If my family suddenly hears they will panic and they won’t know what to do. So please hold on. I will tell them once they arrive. I will obviously tell them what’s happened.

[00:10:33] Urvi: Yeah, I was confused. I guess the first few, we didn’t really initially know what it, type of leukemia it was. So for me, the memory of the first few days were really really tough. So every day there’s new tests and it was sort of like a whole, really what’s it like, I guess, thorough testing of everything to determine what type of leukaemia it was as well.

[00:10:52] So, those first few days for anyone experiencing it is like a lot of new information and um, variety of information every day.

[00:10:59] Kate: So were there lockdowns at that point? Could you have people come freely to and from the hospital or no?

[00:11:06] Bhaskar: No, we were lucky to fly from Adelaide into Canberra. And uh, another good thing that was available in Canberra hospital is that they had a extra bed for a carer. So in the leukaemia…

[00:11:20] Kate: Oh wonderful.

[00:11:22] Bhaskar: In the leukaemia sort of the ward. I know they could sleep in the same room as me. So it was very assuring that, I have got somebody close to me. So that, was very helpful in a way.

[00:11:35] Kate: And I have no doubt, like you mentioned before, that you had never been in that hospital environment, let alone spent a lot of time with doctors. And then as you said Urvi,, you’re getting so much new information at the beginning. And as a patient things happen to you, you don’t walk with it because it has to happen so fast. And I can imagine that just being really overwhelming for both of you,

[00:11:58] Bhaskar: Yeah, so I would also say that, it was an eye opener of a lot of things that I realised, you know. What happened is that what the doctors is that they flooded my system with saline. So I was on continuously a couple of days, always on saline because they were trying to flush out those baby cells, the baby cancer cells from my system.

[00:12:19] And in the process, what happened is that my lungs got over flooded. So I ended up with breathing difficulties and all that. And I ended up in the ICU for a couple of days.

[00:12:31] Kate: Wow.

[00:12:32] Bhaskar: When I was in the ICU, I realised that how much the doctors actually care, you know, how much effort they put in. So the ICU in Canberra Hospital like they had beds separated by partitions. Like those blue partitions, you can pull them up and create partitions. And then the doctors and nurses work throughout the night. They would put off the main light and they would have a band on their forehead with a small, tiny torch.

[00:12:58] . And they, throughout the night, they used to work through that. And I also, I saw that, all the information about me is actually captured in a terminal. I’m an IT person and I could see that the application of IT in health in terms of, all the, everybody could access my information, know what has happened to me, what was the last treatment done, what did the nurse in the last shift, what was her observations.

[00:13:22] Then for each session, the nurse would actually do a handover to the next nurse and uh, you they would go through that entire history and keep the new nurse updated. And, so that was all very new to me. I’ve never been in this environment at all.

[00:13:38] And that was something that I really appreciated. The amount of effort, planning and, and execution that, the hospital system did for all these patients. And the amount of no sub precautions that they took. So, they kept me one or two extra days in the ICU.

[00:13:55] Just to monitor, even though I was okay. Still they kept me in the ICU for a bit more time to make sure that I’m good enough to go back to the ward. So the care factor was a bit overwhelming in the sense that, you know, we are not used to seeing such things. I mean, we generally just go to the GP and ask a few questions and get a prescription and come out.

[00:14:15] Kate: And away you go

[00:14:16] Bhaskar: When you are in the system, you really appreciate so much, that the people around you, the services that they provide. It was really amazing for me.

[00:14:24] Kate: Yeah. That’s, and that’s incredible that you feel that because not everybody does have that experience and they can see that. And no one likes to feel like a number, everybody likes to feel like a person. And I think also too, from a carer’s perspective, that’s your person, that’s the person you love. So to be able to trust in your healthcare team, to trust that as you say, they’re using that word care.

[00:14:46] They’re caring for you. and they’re caring for your treatment and your loved one. I think that there’s a different, you can say the word, but then there’s the doing of the word and the patient and family feeling the care. I think that’s so powerful and Builds a lot of trust from the beginning.

[00:15:03] So, and so I envision if you were in Canberra, as you’ve mentioned, you’re back now in Melbourne, that Canberra, it’s a beautiful space in the world, but their hospital isn’t equipped to do a transplant, which I believe that you may have needed, or you wanted to return to Melbourne for more family support.

[00:15:22] Urvi: They told us that um, so eventually I think when we first heard, I think that I was just with my dad. It was just us two for the first few days because my mom and sister were still traveling back from the different countries. So I think I feel like I broke down. I think I was like pretty good.

[00:15:37] And then when the doctor said that he’d need a bone marrow transplant. I feel like that’s when everything collapsed and I felt really overwhelmed and in my head, the only thing I could think of, I guess you don’t really know what that is. And you just think that it’s going to be some really intense procedure.

[00:15:52] But yeah, and then finding a donor and everything. So that was probably the most intense part of that journey of discovering what it was. After that, I think my dad had like what six rounds of really intense chemo. And in that process, they said that we could do the transplant either in Sydney or in Melbourne.

[00:16:08] So that’s when we started to make plans to move here.

[00:16:12] Kate: And then I guess, did they explain the process or the likelihood of being able to find a donor? Did they, was that a discussion or,

[00:16:21] Bhaskar: Yeah, they did explain to us, so a specialist nurse was assigned to us and she explained in detail what does this treatment mean? What are the different stages? So, actually I was prescribed eight rounds of chemo to start with. And my condition really, I became pretty weak by the time it was six rounds.

[00:16:41] And then the last two rounds were stopped. But coming to the point about what is the difference between Canberra and Melbourne because, I think I read one of your surveys or a report that you had published in terms of the chances of survival depends upon your postcode, which is interesting. So the challenges of a smaller place is that, we are just thinking about leukaemia. So they do have a haematology team and they are doing a good job. But the challenge is that when you have complexities that need other departments. So in my case, you know, I had the infectious diseases team, the cardiology team, the respiratory team.

[00:17:20] So there are at least another four or five departments who are involved in your treatment because it has become so complex to deal with. Then it is difficult for a smaller hospital to get all that aligned and get the right specialist in place. So that way I was lucky that I, came back to Melbourne and, like after I have been ICU a couple of times and, had some intense treatment and all the specialists, they get together on a weekly basis or like every Thursday they have a conference between themselves and monitor each of the patients about what is the progress or what are the challenges they are facing and they take a collective judgment about what should be the next step.

[00:18:01] I mean, I’ve not challenged them any time that, you know I mean, every time they have come back to and asked me whether we should ahead with this, because that is part of the protocol. I think they have to get a confirmation from me before doing anything. I’ve just left my entire faith with them because they are the specialists.

[00:18:19] What can I really say whether to do it or not to do it? So I’ve just gone with the flow and let them decide what is necessary.

[00:18:30] Kate: And then with that did they, was there discussions, I don’t know if you have brothers or sisters, because usually generally when somebody is diagnosed that they will begin to have that discussion about, especially for leukaemia patients, okay, you may need a transplant. Who are your family members? Who’s still alive?

[00:18:44] Who, who are you still connected with that potentially could be a donor? Was there those types of conversations?

[00:18:51]Bhaskar: Yeah sure, those types of discussions were there. So first of all, my own sister she’s a specialist, her cancer and a research specialist in her own right. And she has worked for so many decades in the US. She’s a senior person in a hospital in New York.

[00:19:07] She was identified with development of, just a tiny speck of Breast cancer. And that was removed about 2 years back. So it was not possible for her to be a donor.

[00:19:20] Urvi: Because of the chemo that she had to have. 

[00:19:22] Bhaskar: Yes

[00:19:23] Kate: Right of course.

[00:19:24] Bhaskar: That ruled her out. And then, Urvi and Medha, my younger daughter. Medha and my wife both came back very quickly and joined me in Canberra. So Medha and Urvi, both of them, took those tests to see what is a good match.

[00:19:39] And Urvi had a better match, so that’s why it was, decided to go with her. The hospital actually checked the International Donor Registry. And so they spent quite some time to figure out who could be the right donor. But eventually they came back and said, no, we would like to go with Urvi.

[00:19:55] Kate: And were they, encouraged you Urvi to go on to like, to go get the blood test or was that off your own back that you’re like,

[00:20:02] Urvi: No, they, I remember when we, I think they had said like we should get tested when my dad got diagnosed. So both of us obviously went and were happy to get tested. And then I think I was reading and also at the time for, and talking to the other patients as well. It was sad to see that there is a big under representation of South Asian people on the registry as well.

[00:20:25] So I think that was daunting to think about as well, if we were just to depend on, I mean, we’re lucky that we could use a haplo transplant cause some types of leukaemia, I think you have to have an exact match and then that’s really tricky to find if you’re from a South Asian background.

[00:20:39] Kate: Absolutely, and I think that it’s true that it is a really sad fact that genetics do come into play. We get so many people that do call through our 1 800 number saying, ‘Oh, my friend’s just being diagnosed.’ If I jump on the registry, does that mean I could be a possible benefit for them?

[00:20:53] And it’s, it’s a perfect, it’s a beautiful gift to give somebody. But it’s when you hop onto that registry, it’s nationwide, it’s worldwide and it’s a gift that you can give anybody and it doesn’t necessarily mean you’re going to be a match for your friend. I know I’ve heard of people who have had so many people in their family, seven plus people, and none of them have been a match

[00:21:15] Bhaskar: Yeah, in my case as well, my sister’s son he’s born and brought up in US. So he registered there and sent his report to the hospital here to see if he could be, a good match as well. The hospital felt that Urvi is a better match compared to him. So, ultimately we went with…

[00:21:33] Kate: And what a gift.

[00:21:34] Urvi: Yeah. It…

[00:21:35] Kate: And how did you feel to hear that news that Urvi is in fact your match and um…

[00:21:42] Bhaskar: It was, I was more uh, concerned about Urvi that, I didn’t know what kind of a process this will be and how painful it would be. So I was, both me and my wife, we were very very afraid or apprehensive of what is going to happen to Urvi. And because we were still living in Canberra, Urvi was here and, for the donations, she drove up to Royal Melbourne Hospital, she was all alone doing all those things.

[00:22:08] And we were scared that, whether it will have any side effect on her or whether it’ll make her too weak. So we were always worrying about her rather ourselves.

[00:22:19] Kate: And did you know these worries?

[00:22:21] Urvi: Yeah, I think they were worried and I guess we didn’t know at first, but then the doctors at the Royal Melbourne were really helpful and they talked through the whole process and I knew from listening to, I knew from the other resources that.

[00:22:33] We’re lucky now that the donation process is a lot easier. It’s pretty much so simple for donors to give stem cells now. So there’s actually a good podcast I was listening to called The Straight and Marrow. It’s like a, it’s like a history of bone marrow transplants podcast. So it was interesting learning about how it first started and then the huge advancements that have been made.

[00:22:55] So yeah, when they explained it to me, pretty much they said. I just need to do these injections for five days to extract, the stem cells would come out into my bloodstream and then they extract from the bloodstream itself so it’s just pretty much like a blood donation.

[00:23:11] Kate: Yeah. Were you nervous?

[00:23:13] Urvi: Yeah, I think I was nervous that we wouldn’t get enough or that maybe though or like I’m trying to stay healthy and because if I had caught COVID or something in the week leading up to it you can’t take the donation.

[00:23:24] So I was trying to just be careful with my health and isolate a bit during the lead up to the donation.

[00:23:31] Kate: And can I ask you know just more so out of curiosity, and it’s not a question you have to answer, but the pressure too, like the pressure of, as you said, you had to isolate, you had to protect yourself and knowing A) Why you’re doing this because it’s to save your dad, an opportunity to save your dad. And I envision it would have been a moment and I don’t want to put words in your mouth, but holding so many emotions of the pressure just wanting to do it and out of pure love, I imagine.

[00:24:00] Urvi: Yeah, definitely. And I think there’s a lot of I think a common thing is if someone donates and then it doesn’t work or there’s complications in the transplant that can feel like a big emotional weight on the person that’s donated as well. But all of that is so like out of your control and you know that rationally, but at the same time you really want it to work.

[00:24:18] And the nurses were really great. Like they gave me their number to call them whenever I was having doubts or feeling stressed out. So I did call them a few times just to see that it was all going in the right direction.

[00:24:28] Kate: Yeah. And what about you Bhaskar? Like I can imagine just as the same questions I asked Urvi is to around, that guilt, that’s your baby. I think no matter what my parents always say like, no matter how old you are, I’m still going to look at you. I look at my children like that as well.

[00:24:43] Like still going to look at you as the baby I brought home. So I can imagine you would have been as a father feeling, a lot of mixed emotions as well.

[00:24:51] Bhaskar: Yeah, both me and my wife, till the collection was done like till Urvi had made the donation and said that enough amount of stem cells have been collected. We were very tense that, you know, that about her welfare, really. Yeah.

[00:25:06] Kate: And it would have been hard being in separate states as well. Like that your wife, I imagine would have felt very pulled as well. She couldn’t be with both of you at the same time either.

[00:25:18] Urvi: Yeah, I think, yeah, but I had a good support system, like a lot of friends that around me and yeah, just like support around me. So it didn’t feel too, it wasn’t really very hard for me.

[00:25:28] Kate: Yeah. So I guess, they talk about transplant as a new birth date and that big moment. Did they explain to you, I mean, some people think it’s going to be this big extravagant process and that I don’t know what sometimes people think, but then the bag of cells is hooked up and you go, huh? There we go. It looks like a blood transfusion.

[00:25:48] Bhaskar: Yes. I’m an engineer by profession, so no, I could understand what they are doing in terms of de-freezing the stem cells and then, putting it through IV into me. And it took couple of hours. I saw that they had taken a lot of there were a lot of nurses involved in that process, so they were taking it very seriously and going through the process.

[00:26:08] So, I didn’t have to do much. I was just lying down and watching all the others being busy with all this. The process as such, doctors actually had told me that, if you, when it actually happens, you will see that there’s perhaps the least worrisome day, all your anxiety and everything is before that.

[00:26:26] And So once you receive it, the only thing that crosses your mind is that, you’re sort of, told that there is this chances of host versus graft disease, which many patients face. So that is the anxiety that we lived with, whether I’m going to be affected by that or not.

[00:26:43] And I have seen some patients like, because I stayed in the Leukaemia Foundation Apartments. I’ve seen people who have such things have happened and I have seen the reactions on their skin about how it demonstrates itself. What I can say, have been sort of a bystander, looking at all that is happening around me and there has been so many other patients. Who have gone through much worser experiences, so know, I mean, nothing happened to me. I didn’t have, to date, like touch wood, nothing has, I have not been affected by this host versus graft disease. But I have seen how difficult it can be for certain patients. And I’ve also seen that people have actually have got, received a donation from people from overseas. Like another gentleman who was staying with me, he received his donation from an unknown person in Germany. So I know, I just felt lucky that the chances of receiving the stem cells from my daughter was a much safer prospect than receiving it from somebody that is matching cell wise, but with whom I have no connection at all. And the stem cell part, I think has been a quite a pleasant journey as far as I’m concerned, but no, I have seen how complex that can be for some other people whom I have met.

[00:27:57] Urvi: Yeah, I think we. I didn’t mention before, while my parents were in Canberra and we started to plan the move to Melbourne that’s when, I mean I was already sort of working with Leukaemia Foundation as an ambassador at that point and doing like the World’s Greatest Shave and just different publicity stuff, but that’s when we were able to sort of link up more and apply for the housing that the Leukaemia Foundation provide near the hospital.

[00:28:21] So that was a massive relief for us as well. So my mom likes to cook a lot, so she’d be cooking and bringing that every day. And it was over Christmas period for three months, you have to be in hospital when you get a stem cell transplant. And just having that accommodation just helped us so much. For me, the process felt like there was a lot of butter, I remember there was a lot of butter, it was like the season where all the orange butterflies are around that area. And the ward 7B at Royal Melbourne Hospital is amazing and they gave us like a really good room with a view as well. So it felt as much as we were very lucky that it felt as homely as we could. We had a lot of support around us, which is great.

[00:29:00] Kate: Cause you’re right like it’s not just the stem cell that takes place. And I think this is a really beautiful episode to highlight in the same conversation that whilst a patient is going through something in a perspective, and I know not a lot of people don’t like the word journey, but again, I’m stuck for another word, but journey or experience, that the carer and family are too. Though it’s different and it’s from a different perspective, but each has, there’s still the labor of life that goes on. There’s still the stresses of life that go on alongside a blood cancer diagnosis. And I mean, we here at the Leukaemia Foundation, we recognize that wholly, and that’s why we like to be able to provide the range of different services that we can. Accommodation, we know people, as you say, they, not all the treatment is at each hospital that is located in Australia.

[00:29:47] So, what we can provide, we will. So,

[00:29:50] Urvi: Absolutely, I think straight after transplant, it became, like the actual process was a few hours and, but I think the main thing was, and I can’t remember exactly, but it’s like your neutrophils completely drop to zero and then waiting for, it’s like a few days of waiting for it to start to pick up and you know that it’s starting to work when the new stem cells are being adapted. Those were sort of tense days.

[00:30:13] Kate: Yeah. And you as daughter watching your dad go through this is, how were you feeling? I guess you’re just waiting on bated breath, right? As you say, for those stem cells to engraft and to see everything fold. And you’re looking at your dad, but then I envision you’re looking at your mum and your sister.  It’s a big wait

[00:30:29] Urvi: Yeah, definitely, and I think I’m really, like my sister and I are really like best friends pretty much, so it was really great to have her being able to support, like we just supported each other and helping our parents. So my mum as well was really great and she’s just been, just, I don’t know how she manages, for me it takes a long time to cook even just one thing, but she manages to cook.

[00:30:50] I think at the Leukemia Foundation apartments they would always say they can smell all the curries that she’s cooking. She maybe made like four a day or something crazy. So I feel like for us the whole process, even though it was really, wouldn’t wish it on anyone and it’s a terrible disease it helped us grow closer together and be able to support each other in different ways.

[00:31:10] And for me, I guess it helped me get to know my dad more throughout, cause he was explaining sort of, all the things like passing down knowledge of like our finances and just general family life and helped me have a new respect for like how hard they’ve worked. Cause yeah we just came to Australia with not much and no support. So, it was a, big learning process for me as well.

[00:31:31] Kate: Well, now you guys are more similar and connected than ever before. I mean, so many people can say they’re close to their father, but you have, that means something else for you now.

[00:31:42] Bhaskar: I should say that we have got our own disputes.

[00:31:45] Kate: That still happens.

[00:31:47] Bhaskar: It is not, rosy every time that we meet each other. Because we do have differences.

[00:31:51] Kate: It’s good to hear. It’s still a normal father daughter relationship, and it’s

[00:31:55] And did blood type have to change throughout that process, Bhaskar? Or were you guys similar blood type already?

[00:32:02] Bhaskar: No, I think we, I was O positive. I think that has remained same through the process. Like, it has not changed in any way. 

[00:32:10] Kate: Yeah, which is really cool. Some people, they do change if the recipients were something else, they actually then end up taking on, the patient end up taking on the donor’s new blood type.

[00:32:20] Urvi: Yeah, that’s, yeah. I know my blood type, but I think it is the same.

[00:32:25] Kate: You do now. And, I guess, throughout this, I know, as we’ve said, the stem cell transplant is only like that day, it’s a small day, but then there’s so many days after. And how has life been post transplant for you?

[00:32:42] Bhaskar: Yes post transplant, like the transplant part, as I said, has not been a problem at all. But what has been the problem is that like the first time I got over flooded, like my lungs got over flooded, ended up in the ICU. There was fluid accumulation in my lungs. And that stayed from, perhaps March 2022 to August 2022, so almost 10 no, six, seven months. That fluid sat there. And then when I had come for a checkup to Melbourne, then suddenly one day, somebody came, like one of the doctors came and suddenly made a hole behind, on my back and drained out the water. So they did ask me, but the concern, I didn’t know that it’s going to happen or anything. They just arrived with some instrument and then made a hole here and took away some, 1.4.

[00:33:32] Kate: You’re a fountain.

[00:33:33] Bhaskar: Yeah, 1.4 litres of fluid. So I do not know whether that fluid staying such a long time, that contributed to some infections or there was something else. But I came across a number of infections in my lungs, so there was the Aspergillus, I think. 

[00:33:48] Urvi: It’s like yeah, it’s a fungal infection, which I think that’s the one that, if anyone else is going through it, that’s the hardest one, because it, he wasn’t really having any symptoms.

[00:33:58] Bhaskar: It was very common one. It is just an organic, like it can be coming from some plants or something like that, so it is an organic fungal infection. There was also another infection called Mucor, which is very difficult to get rid of, and I went through a lot of treatment. Like there is very strong medicine available that is injected in you every day and it continued for four months. So every day I would have that IV (intravenous) transfusion three hours for the actual, it was called Ambisome, I think.

[00:34:28] And so that was going to be for three hours and one year, one hour in preparation for that, because it can’t be given on a normal body, so you have to hydrate yourself. So one hour of saline and the three hours of this and it continued for four months. But eventually they found that they are not sure whether the infection has been treated or not. And the doctors finally decided that they are going to take surgery to remove my top right lobe. So that was…

[00:34:55] Kate: Wow…wow.

[00:34:58] Bhaskar: Yeah, sometimes I, you know, in hindsight, I think whether I made the decision to go ahead with it, whether that was right or not, but I just went with whatever the doctor said. And it has had a significant effect on my well being, in terms of my ability to breathe naturally and do anything heavy.

[00:35:18] So it has had, quite compromised because of that, but it was not just that. You know, after the surgery, then I was okay for two months or so, but then I again had severe chest infection and ended up in ICU and I was put on life support for one week with, with ventilator and so my eyes and everything was frozen, so I was just lying there being fed through whatever liquid I was, I didn’t have consciousness. So I laid like that for one week or so. And then I came out and then all my muscles, became so weak that I couldn’t stand or do not even sit up in bed. So it was quite an experience I had to go through and gradually tried to recover from there. I mean, I even now I am not, you know, my muscles are not strong enough to deal with the day to day work. So these kind of, you know infections have really marred the shore.

[00:36:11] I mean, what could have been an excellent journey through just through leukaemia has all these side effects that create problems.

[00:36:20] Kate: And I think it’s a really good thing that you have highlighted. So many people talk about GvHD. They talk about graft versus host disease and that, being one of the biggest side effects that people walk with post a bone marrow transplant. But I think what’s really unique to your story and important to highlight is that some people can go through not having any issues with graft versus host, but then they face so many other challenges post transplant. And some people are here, and I’d love to hear your perspective, is they find that post transplant they had this vision that things would be different, or that life would help be able to return to what it was, or that you wouldn’t keep having to face these challenges.

[00:37:01] But that sometimes actually isn’t the way that it is. you’re still reminded of the imprint that blood cancer has brought to your life.

[00:37:09] Bhaskar: So one, thing I could mention, you know, that could be useful to other people as well is that. First of all, I realised that, no, there’s too much information available and so as soon as I was diagnosed with leukaemia. Then there is, you know, I received so much information from Leukaemia Foundation, in the hospital.

[00:37:24] Urvi: It was like a mix. It was like the hospital just gives you a lot of information, but for me I was liking reading it, but for my dad, it’s not.

[00:37:34] Bhaskar: No there was all this, various booklets on various topics. And it was really overwhelming for me to try to read through them and try to understand them and, and relate to myself.

[00:37:45] So I. I just felt that, if I have no choice with my treatment, I mean, whatever, I’m going with what the doctors and specialists are saying. So why at all do we need all this information and, be scared of all this? What I did is that I actually didn’t go any further with it.

[00:38:02] There was too much to, absorb and all that. So I just concentrated on my work. So I didn’t know all through my treatment, I have actually worked through it. Apart from the few days here and there that I was totally knocked down or, there was some procedure being done.

[00:38:16] So I have, whether I was in hospital or whether I was at home or wherever I was, I always tried to work through that. And the later on, I found that the doctors really appreciated that. They said that one of the major challenges that people face, especially men in fact, that, as soon as they are identified with cancer of some form, they think that, they have to give up their work.

[00:38:37] And once they give up their work, then they are in a desperate situation, not knowing what to do. Because they’re always thinking about their illness and know whether this blood count is going up or down or whatever. Our things that we have absolutely no control. Me working through and being associated with my work all through really helped me not to think about cancer.

[00:38:59] So I never thought about cancer, whatever came through, I dealt with it that day. And, like next day I would be again back in my work and try to do whatever I can. It’s not that I was 100 percent all the time but my employer supported me. I have been allowed to work from home and move to Melbourne, relocate myself to Melbourne.

[00:39:18] So I’m really grateful to Defence to allow me to do that. So I think my journey is a bit different from others because I’ve seen a lot of people in the hospital as well as staying in the Leukemia Foundation apartments who have a different experiences and different stories, like dealing with the situation has been quite different from what I have gone through.

[00:39:41] Urvi: Yeah, I guess it kind of highlighted how even within our own family, like how we dealt. My sister was really good at dealing with I don’t know, like the realist, just like the sort of more forms and things that make me feel overwhelmed. We’re sort of trying to support my dad with all his work.

[00:39:55] And then my dad dealt with it with work. But for me, it was really, I really found it helpful to talk to the other patients and hear people’s stories and listen to this podcast as well as getting as much information so that I could start to understand the disease a bit more and what was coming.

[00:40:11] So we all kind of reacted in different ways, but also with the workplace support, I think that’s the, yeah, where my dad works, I have a good policy of supporting people through illness and being flexible. So I’d just say that’s a really great thing to enforce in all workplaces as well.

[00:40:26] Kate: Absolutely, because work is, although sometimes we roll out a ban and go, oh gosh, I don’t want to go. But it’s a sense of purpose and contribution that I think when it’s taken away from you, especially with no choice, you then begin to realize how impactful it is in a positive way in your life. And you, Bhaskar, it sounds like you brought that along in the journey and it wasn’t that you were burying your head in the sand, but you were stimulating your brain, you were giving yourself purpose. It ignites your passion, no doubt. Like if it’s a field you love, and that is so important through recovery as well.

[00:41:07] Bhaskar: Definitely. I mean, otherwise, in the hospital, you are just lying in your bed. I mean, if I know that I have to start work at 8 or 8. 30, I have to get up and have a wash and get ready, have breakfast and be ready for it. But if it is not, then what I mean, I just keep on lying in the bed and, you know, lazing around and, worrying about what’s going to happen. Being engaged with something is really important because otherwise, you can be drowning in your own sorrows and worrying too much than what is really necessary.

[00:41:36] Kate: Yeah, it helps your focus. It really helps your focus, not to forget about what’s going on, but it helps our brain to, and as you say, it doesn’t need to be work, but a project. It’s a passion. It’s a connection. And it helps us, not take away, as I said, our brain from what’s going on with the reality of the blood cancer, but just ignite it with something else.Feed that brain with a different topic and a different challenge and goal. 

[00:42:03] Just being very mindful of everybody’s time, but Bhaskar your daughter Urvi has now become a National Ambassador for the Leukaemia Foundation and we are just, I think you’re an honorary one as well.

[00:42:14] Um, she wouldn’t be the ambassador if you, if it wasn’t for you and for what you’ve walked through, but how does that make you feel? With her taking on this role, given your personal experience?

[00:42:25] Bhaskar: Yeah so, maybe I will go back a little. So when Urvi was born we named her with the word Urvi. Urvi is a Sanskrit word in India like, it means Mother Earth, who is always giving something to someone. In a way, Urvi has been, true to her name, so to speak, that she often does things for others. I mean, she’s not a money minded person who is thinking about her own things.

[00:42:57] I wish she did more and looked after herself better. But she’s often, putting others or doing things that are in common good. And that way I feel privileged to have her as my daughter. And whatever chances, I think we named her rightly as Urvi.

[00:43:15] Kate: You absolutely did. And it’s, that is also, children not of course they’re in their own being, but they are a reflection of their parents. And I’m sure that most likely, you know, will say that it’s the upbringing that she had as to why she didn’t give it a second thought to donate or get that blood test to see if she’s a match for you.

[00:43:34] Urvi: Definitely. I think it’s a sense of just a closeness and it’s been just so great to meet all the other families and stuff in this process as well. And just how everyone’s is there for each other. And I think people ask often, like, how do you, not to me personally, but just generally how do you have the strength to go through something?

[00:43:51] Like, even if you were to ask, how do you have the strength to go through leukaemia? And we were all so scared, but I guess you just find the strength as you go through it and trust that it’s there.

[00:44:01] Bhaskar: My family has been really, put their lives on the line, so to speak, supporting me at each and every step.

[00:44:06] Like whether, whenever I was in hospital or whatever my, or not able to, have food or going through illnesses. My wife has always been very, like she has cared for me every moment. Yeah, and my younger daughter, Medha, yeah. They have taken turns to be with me all throughout this journey.

[00:44:23] I have had that support, even though we are a small family, we do not have any relatives in Australia. It has been really, a fight that we have fought together. It is not that I alone did anything. All of us has contributed to this game.

[00:44:38] Kate: Yeah, absolutely. You’re the true definition of family, and families are made and look up and are made and look, very different to so many people. But what it is, is that you’ve come together to support each other from the moment of the creation of your family to then these moments here where life is throwing something that’s completely out of your control.

[00:44:56] And you can see, and as we’ve had this conversation, people deal with things differently. They process things differently. And they all contribute in powerful ways towards each other in the family unit. And that is exactly, it sounds what your family has done. So, you should be very proud that even though that this situation out of your control and sometimes not the best, you know, a blood cancer has given you the moment to really show the fruits of your labor and your family.

[00:45:23] So. I would like to ask just before we wrap up. Urvi, you have listened to this podcast yourself and as a carer, as a daughter, as somebody who is been in that moment where they’ve heard the news that their loved one is unwell, is there anything that you would like to share or you feel that would be helpful

[00:45:41] Urvi: Yeah.

[00:45:42] Kate: For somebody to, to hear or draw on?

[00:45:44] Urvi: For me, really, to have the support of the Leukaemia Foundation and a network of people really changed the experience for me and made me feel like I could connect. And that was something, there’s other people going through it, so this podcast is great. I’m always available, like anyone that, I think any of the ambassadors, I’ve met them all, I’ve been so, they’ve all come from really different walks of life, and all so generous. So, um always happy to speak to anyone and, actually, it’s been a way to connect someone that I went to uni with had messaged me when she saw me posting about the Leukaemia Foundation and then connected to the organisation and sort of shared her story. So for me, stories sort of change our experiences and that’s why it makes it just a bit more bearable. So I think just really leaning on the people that have gone through it before and just asking for help when you need it.

[00:46:30] Kate: That’s wonderful. Thank you. I, look I, the power of story and power of connection should never be underrated. And it’s amazing when you do ask for that help, how many people do put their hands up and sometimes it’s those hands that you never would have thought are up to help you. And Bhaskar, can I ask you, is there anything you would like to leave the listeners with?

[00:46:50] Bhaskar: First of all, I acknowledge the enormous help that Leukaemia Foundation has provided us. If we didn’t have the accommodation available to us close to the hospital, it would have been a really different story. The amount of difficulties that we had to face been quite challenging for my wife in particular. Being able to stay close to the hospital, you know, going to the hospital even at night, 10 o’clock or something like that and, going to the emergency or to the ICU at middle of the night. All those things wouldn’t have been possible if we not had the support of Leukaemia Foundation.

[00:47:23] There is also, the staying there, we saw the lives of so many other people who are going through this journey. And, sometimes it is just the young kids. Sometimes it is, aged people. Sometimes, I’ve come across a person who was going through leukaemia and then his wife also became a leukaemia patient while he was there.

[00:47:42] So two of them being treated at the same time, all this unique situations that you come across and you are left very humbled thinking that, you know, what you are going through is, perhaps very mild, so to speak. People go through so many challenges, so no, don’t feel that, you know, you are the worst, like you are facing the worst of the lot.

[00:48:01] There are other people that, face so much more problems than yourself. And what we go through, we should be really lucky that, God has given treated us well in a way towards some successful outcome. I mean, obviously we are still in the journey, still have a lot of challenges, but, I don’t think that we face the worst situation of all the people that we come across. That is a good learning and also the appreciation that I have for the health workers. Like I’ve come across so many nurses from different countries. So no, you won’t really understand that how culturally diverse is Australia.

[00:48:36] So you have, nurses from Philippines, from Hong Kong, from China, from Japan, from India, from every part of Australia itself. So there is so much variety within that workforce. That really you are surprised that, they, how come they are all, coming and serving you?

[00:48:54] The healthcare system itself is so much better. We don’t realise that how good it is actually in Australia. So, as I was mentioning, my, my sister, she’s like a very high official working the US in the healthcare system. And she says that, in most situations in America, a person would not go in for the fifth round like they will stop at round four of chemotherapy because they can’t afford to go do the next round at six or whatever.

[00:49:20] Kate: Yeah.

[00:49:21] Bhaskar: Even when I was in the hospital, last week, she called me and said that her hospital is overwhelmed with patients. There were 90 people on the corridors, like 90 people waiting for a bed. Many of them were private patients. Whereas we can get into, like if I have a real emergency, I can get into the hospital almost in a few hours time.

[00:49:43] Like we don’t really know about all these things and gradually get exposed through this. Only when we compare certain things with other, so called, advanced nations and see the disparity, now the, like, the healthcare system is so, much better here that there’s no real comparison to that, with the US.

[00:50:01] Kate: No.

[00:50:03] Bhaskar: We should consider ourselves really fortunate that we are in this country. Which cares so much for us when there is a real need for it. 

[00:50:11] Kate: I absolutely agree.

[00:50:13] Urvi: Yeah. Oh, sorry, I just said I think it’s approaching it with some gratitude because it is, it is really hard and it is tough, but we do have a lot of resources and we’re grateful for that.

[00:50:23] Kate: We absolutely do. And I think too, to be able to be given the choice that we can access a lot of our things for free, and not have that, of course there are fees and there, there are medical expenses, but in some countries they walk away, as you said. Some stop because they can’t afford and, the goal here within Australia is that everybody has equal access to treatment and it doesn’t matter where you live, that our hope is, especially here at the Leukaemia Foundation, that you are able to access equity of care, no matter where you are located in Australia.

[00:50:56] Although we are a small nation, but a very vast nation and spread across many different areas of the country. I think that, we’re very blessed still to live where we do and to have access to the doctors, healthcare and nurses that underpin that, treatment and that care. So,

[00:51:12] Urvi: Yeah,

[00:51:13] Kate: Well, I can’t thank you both enough. It has been an absolute joy to have you both on the podcast for this very special episode. We’ve never had two people to share their story at the one time. And I think it’s really enriched the story that you’ve been able to share, your perspective alongside each other and it’s beautiful to see your relationship and to hear your story and how you both came together.

[00:51:35] And it’s love. That’s all I can say, and it’s beautiful and you’re a part of our family here at the Leukaemia Foundation and you both hold such a special role and we can’t thank you enough for being on the podcast today. So thank you.