Facing young loss: Lauren and Jake’s blood cancer journey

[00:02:36] Kate: Before we begin, we wanted to acknowledge that today’s episode is a little different to the ones that we usually share. This podcast episode touches on themes of grief, loss, and the complexities that come along with the emotional healing after the passing of a loved one. We encourage you to listen with kindness towards yourself.  And if you are feeling overwhelmed, remember that it’s okay to take a break or skip ahead to another episode that feels right for you. Your wellbeing matters, and we are here to explore these topics with empathy and understanding. 

Hello and welcome to the Leukaemia Foundation’s podcast, Talking Blood Cancer. I’m your host, Kate Arkadieff. Today, I am honoured to share my conversation with Lauren Smith, who at the age of 21, stood beside her husband Jacob through his brave journey with stage four non-Hodgkin’s lymphoma. Unlike our usual patient story, this episode explores the profound experience of a young woman who, after saying her heartbreaking goodbye to her husband, Jacob, found herself navigating life as a widow at the age of 22.

Lauren opens her heart about their experience as a young couple facing cancer, from the confusion of early symptoms to the frustrations of seeking answers and ultimately facing the difficult reality of their shared journey together. Their story reminds us of how precious every moment becomes, and how a strong support network carries us through our darkest hours. What blossomed from this deeply personal loss was something truly meaningful. Lauren’s work on Gather My Crew, an app designed to coordinate support for those facing life’s toughest moments. It is a beautiful testament to how love continues, even through grief, transforming personal pain into comfort for others. With the remarkable courage and tenderness, Lauren shares her path through the complex landscape of grief after losing her beloved Jacob. The vulnerability required to ask and accept help, and how she found ways to carry his spirit forward while rebuilding her own life.

This conversation reminds us that even in our deepest sorrows, the power of connection and community can gently guide us back towards the light and hope. I’m truly grateful for Lauren entrusting us with her story and Jacob’s story, and I hope their journey touches your heart like it did mine.

Hi there, and welcome to Talking Blood Cancer. I’m Kate, your host. And today I have a really special guest with me, and I cannot thank her enough for coming on to the podcast. We have Lauren here today, and her story is a little different to the usual patient story that we have on the podcast. And Lauren, I will let her introduce herself and share a little bit about her story first off. So you, the listeners, can understand where this episode will go today. So, thank you, Lauren. Thank you for coming on.

[00:05:38] Lauren: Thank you, Kate. It’s an absolute pleasure to be with you today. I’m Lauren. I am based in Toowoomba in Queensland, and my late husband, Jake walked through a blood cancer journey in 2019, and it was my absolute privilege to walk through that with him. And go through that together and be each other’s rock through that no matter what the day’s brought.

[00:06:03] Kate: And can I ask you, how old were you and Jake at the time of his diagnosis and what was happening in life at that point in time?

[00:06:11] Lauren: Absolutely. We were both 21 at the time of diagnosis. We had only been married for four months. So, at the time the world was our oyster. We were both working full-time, we loved travel. We wanted to start a family at some point while we were youngish, so that was always in our minds as well. But really just soaking up that first year of marriage and enjoying all that life had to offer.

[00:06:35] Kate: Wow. So those vows, sickness and health, I’m sure you’ve heard that before, got really tested?

[00:06:40] Lauren: Yes, very quickly. It went beyond the gastro on our honeymoon.

[00:06:44] Kate: Did you get gastro on your honeymoon? Gosh.

[00:06:47] Lauren: So we thought we saw the best and the worst of each other within the first, week or two, but yes, a few months in, it took a whole different meaning.

[00:06:54] Kate: So after the honeymoon and the gastro, what kind of happened for you got, was Jake feeling unwell? What kind of prompted him to go to the doctor?

[00:07:02] Lauren: Yeah, it was around Christmas time, and we were away around that Christmas to New Year’s period. And he had a lot of, sort of muscle pain in one of his legs, and walking a long distance was proving to be painful. And he’d also about a month earlier had some pain around one of his ribs. He’d been to the doctor for the rib pain and they’d said it was musculoskeletal, just take some codeine and you’ll be a-okay. And he’d done that and it was still lingering. And then whilst we were away yeah, walking was becoming the main concern. Assumed at 21 that perhaps a visit to the physio would sort that out and we just needed to wait until everything reopened after Christmas time. So, didn’t really do anything about it for that first sort of week or two, but it did progressively get worse and worse. And then once we arrived back home It got quite bad. 

There were lots of GP visits. There was the leg pain, but then there was whole body movement was becoming difficult. You don’t know what to do with that at 21 you just assume that your muscles aren’t doing what they’re meant to, but you don’t assume it’s anything more than that. And so the GP didn’t really know what was going on and there were a number of weeks where he was getting progressively worse. He was struggling to sleep, struggling to lie down, he was having fevers and all the general symptoms. And nobody could really figure out what was going on. He didn’t get a diagnosis till the first few days of February. So it was quite a long time of severe pain and not being able to sleep in a bed. So he was sleeping in a recliner and that was the extent of his lack of the pain. And then eventually got referred to a brilliant GP who could make the referrals onto a lovely haematologist. And they started putting all the pieces together. So the leg pain and lack of mobility was due to a tumour that was really rapidly growing in his leg. And then similarly, there was one near his ribs as well. So he was diagnosed with stage four non-Hodgkin’s lymphoma and it was sort of on the extreme end of that.

[00:09:04] Kate: And at 21, and as you said, like you’re newly into your marriage, what were you thinking during that time of finding out the diagnosis? Because I do know, usually with the way of lymphoma sometimes it can be a delayed diagnosis, it’s not like the acute leukaemias that you get a blood test and you have the results quite quickly in a picture. Were there moments that you guys got to have together to discuss, oh God, don’t think this is what just your normal leg pain or were you able to share and connect your fears I guess or worries during that time?

[00:09:35] Lauren: Yeah. What stands out to me is he was admitted to hospital around the Australia Day weekend. And he had all of the scans, lots of tests and they were trying to put pieces together. And it was a teaching hospital, so, you know, the interns would come around and they’d be groups and ask the same set of questions over and over and it, it just didn’t feel like it was adding up. So it, very much felt like something was really wrong, but it felt like there would just be a solution. Whether it was something needed to be drained from off his chest or it didn’t feel like something horrendous. And it wasn’t until it was that Friday night just before a long weekend and one of the interns came in and bent down and said there’s not really much we can do for you over the weekend. Like everything will shut down, there’ll be limited services. So you’re better off going home and waiting. But then he said, try not to think about the C word. And until that point. We hadn’t really thought about the C word. Um, being cancer sure, it had drifted in and out, but it didn’t, no one had said anything that would lead us to believe that’s what we were dealing with. 

So we left the hospital that night and we had a week’s wait before the next biopsy and test would happen. And that weekend was pretty torturous, realising the extent of what we might be up against. And not knowing what that looked like, not knowing for sure what it was and just, and just completely foreign world to us. So that weekend, we really had to hold on to each other and guess it did reinforce that, whatever we faced, we would do it together and, we would deal with it as it came. But that weekend really stands out to me as the only processing time because later when the diagnosis came it’s into treatment very quickly and your whole world’s upside down very quickly.

[00:11:16] Kate: Yeah, and there’s no denying, whilst you don’t have that answer of what this certainly is, there’s still that possibility of hope that, oh no this might be something else. It might be, as you say, they’ll drain it, they’ll fix it. You might need an operation and then it’s done and dusted. But, until you found out that definite diagnosis. I envisioned that would have been a really tough weekend. I always say, why do things happen on a Friday, a long weekend and leading into a weekend? It leaves that space for worry during that time and uncertainty. And then I do know, and I think some guests may be able to pick up that, things didn’t unfold for Jake the way that we would always hoped and that everybody does get to survive a blood cancer. And Jake unfortunately did pass, but I think leading up to his passing, there’s a story in that. I think it’s great to kind of acknowledge maybe what kind of happened for Jake and yourself during that time. Once you did receive that diagnosis, were you able to stay at home or did you need to travel for treatment?

[00:12:14] Lauren: So when the diagnosis came it wasn’t even a concrete diagnosis. They’d narrowed it down to a couple of different things that it could be, that it was likely going to be. And so they were confident they could make a decision on what chemo was best suited despite not having the exact diagnosis. And the turnaround from that conversation to starting chemo was about 24 hours. So he was in hospital in Toowoomba and his haematologist gave the news that treatment would need to be in Brisbane. We would likely go there for six months and the ambulance was coming to get us that afternoon. And this was on Valentine’s Day, so..

[00:12:50] Kate: What a gift.

[00:12:52] Lauren: Just to, yeah..

[00:12:53] Kate: Oh.

[00:12:53] Lauren: Add to it all. So yes, we were waiting for the ambulance to move to Brisbane for what we thought was going to be six months. Thankfully, there were none that afternoon. It was postponed until the next morning. So I could at least go home, pack up our house, pack some stuff and pack our lives into sort of our car and not know how long we were leaving for. And then mum down to Brisbane for us. So yeah, we were on the ambulance the next morning and once we arrived in Brisbane Jake was started on chemo within an hour or so. So, really, really fast-paced to get him on treatment. It was quite a rapidly moving cancer. At first, we thought it was going to be about six months down there. As he got settled into chemo it ended up being only a few weeks and then we could transfer care back to Toowoomba and have shared care between Brisbane and Toowoomba. So, that was really beneficial. Being away from home is a lot and particularly for Jake’s mental being it was much nicer to be at home. We were back and forwards between Brisbane for the 10 months and then things like his stem cell transplant were completely in Brisbane. But yeah, really grateful that it could be shared care and we didn’t have to be down there permanently.

[00:14:02] Kate: And you mentioned too, about his wellbeing, but I also think it would be about your wellbeing as well to be home and be close to your support network. And what did that support network look like for you around you? Did you have great support worker around you?

[00:14:18] Lauren: Yeah, we did. We were really blessed to have lots of people who really wanted to help us. And we certainly needed the help. It was all very unknown to us. And in those moments, we probably didn’t appreciate how big it was and how long it was going to go for. I have a beautiful family. They were fabulous. But I think whilst there was a really beautiful community around us and we really needed the help. What we really didn’t have the skills to do was to ask for help as much as we needed it, and learn to accept help and coordinate help. So those were things we just didn’t know how to do. And very much my personality was to just… but that wasn’t particularly sustainable for a really long time.

[00:15:01] Kate: How did that go for you Lauren?

[00:15:03] Lauren: Definitely could have been better. I, very quickly, I became Jake’s full-time carer and that meant that I couldn’t just pop to the shops when I needed something or I couldn’t just go and do something on the fly. Everything needed planning and someone to be pretty close by to Jake. So I remember very vividly one moment in particular that I think people will resonate with because we’re not good at asking for help. And I remember needing, we ran out of washing powder. And when you’re washing cytotoxic sheets, towels, all the rest of it every day, that really mattered. And I’d run out of washing powder and I remember standing in the laundry and thinking about all the people who had said to me, “Let me know if you need anything.” And I, I knew they would probably help if I asked, but the thought of being brave and asking and reaching out with the possible outcome of them not being available or not being able to help, then questioning they said that, but did they really mean that?

And I think in the context of colleagues from work, I really felt that because they were beautiful people, but I’d worked with them for about a year at the time. And I thought, I can’t ask them. I didn’t know what our friendship looked like outside of work too much. So I remember having all of those thoughts and really selfishly wanting something that could make that easier for me. And wanting a tool that could take all the second guessing out of it and just really streamline asking for help and people offering help and connecting that and bridging that gap.

So that came from a place of me being really bad at asking for help, and it’s still something I have to be really conscious of because it is really hard. And so that sparked an idea for a tool that could do that, and the way I had visioned it was in the form of an app that had real-time notifications, that if someone needed something at, Wednesday at nine a.m that their help and support community could see that. And whoever was around and available could action that. So that started the dream of a tool and beyond Jake’s passing, we couldn’t find anything like it. So we worked towards bringing that to life. 

And along the journey discovered a beautiful charity called Gather My Crew who were working on the same mission. And it was an absolute privilege to join forces with them and jump on board what they’d already created, which was pretty much the same as what I had been dreaming about and hoping existed. I now work with them and I get to spend my time chatting to communities and people about that tool, and how it can help in tough times. And for the listeners of this podcast, that’s likely blood cancer, but for everyone in life, we’re not immune to life’s challenges, unfortunately. But there are always tough times and there’s always times where people need a helping hand. And it’s a tool that can connect those things and just make it a tiny bit easier for people walking those journeys.

[00:17:59] Kate: It is an incredible app and it was one of our first things that we promoted on this podcast way back in ‘21 when we launched it and one of our beautiful guests did actually speak to the app, Gather My Crew and how helpful and useful it was. Because as you said, Lauren, it’s those moments where you’ve heard, let me know how I can help you, and this and that. Where do you funnel all that energy and where do, you’ve got as a carer and as a patient, you’ve got so much already going on in your plate to then focus that energy to organise the people around you and your tribe and your community. Energy I’m sure you don’t even have. But it’s something that you truly need. You need that beautiful support system around you and something as simple as laundry powder to the everyday person isn’t a big deal. But for you in that moment, standing in that laundry, it was huge. It would have been life changing to be able to have someone bring that to your door.

[00:18:58] Lauren: Yeah, absolutely. It’s ironic that the phrase “let me know how I can help” comes from such a good place, but actually causes so much overwhelm and it’s not helpful. Typically, it’s sort of putting the, I guess the burden or the job of thinking about what help is meaningful and then articulating that and then coordinating that. It’s putting all of that on that person going through that time. And it’s all too much generally.

[00:19:23] Kate: And I think too like, we’ve jumped ahead and back and forth, with Jake’s passing, that it was also the same essence of when somebody’s grieving. That to say to the griever, let me know how I can help you or let me know what you need. You speak to it Lauren, you’re, you’ve been in it than I have, but your head is just not in that space to be able sometimes to form a sentence or to know what you need, I envision.

[00:19:48] Lauren: For me, anyway, the first year in particular of grief was very much autopilot. I think our society is quite, we’re not particularly good at dealing with grief, and we don’t really know what to do with it, despite it being the one thing that we all have in common. We’re all going to have experience with it at some point. But there’s a lot of I guess expectation on someone who’s grieving and what that looks like. There’s misconceptions that it has an end date, and that you’ll get through it and out the other side. And that it’s linear and it will follow this nice, a few different stages and that we’ll, we’ll, see an endpoint and you’ll be okay then. But grief is really messy. Grief isn’t all bad because it only comes from love. If we didn’t love them, we wouldn’t grieve. That’s something that I always remembered in the thick of it. Whilst it hurts and it’s really difficult to navigate, it’s also a privilege because I got to experience the love that made me miss it. And in that first year, I think I tried to probably keep on with life and try and get back to normal in quotation marks, because that is, what even is that? But yeah, tried to do all the things that I thought were perhaps expected of me at different timelines and different stages.

[00:21:04] Kate: Because how long did Jake have to go through treatment until he did pass? How old was he and you then?

[00:21:10] Lauren: Yep. So, 10 months he went through treatment and battled that. And so when he passed, he was 22. And I was just shy of 22.

[00:21:19] Kate: I think I know the answer to this question, but did you know any other widows that were 22 and had lost their husband or wife?

[00:21:26] Lauren: No, and still don’t. Um, yeah, it’s certainly not common and I’m glad it’s not common. But it is quite isolating and not having anyone to talk to who gets it at a really deep level, was really challenging. And you feel quite isolated from, I guess everyone else around you while people have, provide different supports and I’m so grateful for that. It is quite isolating to not be able to share experiences with someone who has walked that path before. So, yeah, quite unique. We also didn’t have children, so that was another layer to it. And there’s different things that come with that either way, whether you do or don’t have children.

I didn’t come across anyone who was young and widowed and didn’t have children. And I almost felt like perhaps my grief needed to be different because I didn’t have children to look after that.

[00:22:17] Kate: Oh did you?

[00:22:18] Lauren: It was almost like… yeah. And I think that’s probably just a, whether that’s something people would say, they would say, at least you didn’t have kids. Or ‘at least’ this, and the ‘at leasts’ aren’t helpful. But they do feed into what’s going on in your head and when you’re isolated in that can just go around and round. But yes, definitely could have, and if I had my time again, would and be a bit more open to support and asking for help in that season.

[00:22:42] Kate: Yeah. And reflecting on that now, and you look at the Lauren back then when you were going through it. Can you recognise potentially why you didn’t reach out or, can you reflect back on that moment and think, “Oh, yeah, that’s why.”

[00:22:56] Lauren: Yeah. It’s amazing how quickly everyone thinks you’ll just get back to life. And I don’t think they mean to, but very quickly conversation was “When are you going back to work?” And “Why aren’t you back to work full time?” when I went back part time. And that sort of narrative that really makes you think that you’re not back to how you should be and how what people expect of you. 

[00:23:22] Kate: Isn’t that interesting?

[00:23:23] Lauren: So there was a constant tug of war between these ideas of holding space and not trying to jump back into things and ignore grief. Because you might be able to ignore it for a hot second, but it’s going to come back at some point. Like bearing it down, it’s only going to rear its head at some point.

[00:23:39] Kate: And at night, you had Jake there at night and then now all of a sudden he is no longer there.

[00:23:45] Lauren: Yeah, my sleep was quite terrible and that lasted a number of years just not getting it, I’m completely sleep deprived. And so trying to be back at work and all of those things when you’re not functioning physically, particularly well was really difficult. And I think that’s something else with grief that I don’t think it’s spoken about hugely is the physical impact that it can have on you. And that looks different for everyone. But it is emotional, mental and physical. It’s all of those things in quite a significant way.

[00:24:14] Kate: Do you think too, Lauren, like thinking about and also knowing that you explained how fast Jake’s diagnosis and treatment process was, and then until when his life did unfortunately he did pass, it’s very quick. I mean, envisioning that you wouldn’t even have had time to process and gain psychological support around his diagnosis and then all of a sudden he’s passed. So then you’re almost left with these two sets of trauma as well that no wonder why you’re exhausted and for people to go, “Why aren’t you back at work?” “Do you know what I’ve went through? Do you know the experience of it?”

[00:24:53] Lauren: Yeah, absolutely. And you’re very right. We didn’t have any psychological support throughout his journey. It all happened very quickly. We were between here and Brisbane. It was just chaos and chasing our tail a bit. Yeah, that didn’t happen while he was still here. And I did find someone pretty quickly after he passed. I knew that I would benefit from that. But it was unpacking a heck of a lot. The ups and downs and an absolute rollercoaster of a treatment journey and then yeah, also navigating grief and what that looked like. So..

[00:25:29] Kate: And the loss of life. Like literally four months before you’d stood at an altar and said your vows and you had all these dreams. To then, four months into your marriage, it’s completely changed and you’re grieving the loss of the life that you dreamed of.

[00:25:44] Lauren: Yes, and some of that had started to happen throughout the journey. Particularly when it came to kids we had to sort of grieve that, because we knew that was going to be unlikely for us to have kids after chemo, particularly after a stem cell transplant. And so that had already started but then it was, that’s okay. We can deal with that. If this gets you better.

[00:26:05] Kate: It’s the bargaining, isn’t it?

[00:26:07] Lauren: Yeah, but then after his passing, trying to, yeah, reconcile both of those things is really difficult.

[00:26:14] Kate: Yeah. Wow. I can’t even imagine to be able to do that also at the young age that you are and grief is also very invisible to the outside world. You can walk along and see you in the street and go, “Oh you’re a young woman living your life,” but then not having, if people not knowing what’s underneath for you as well. That in itself is very draining, holding up that mask to the outside world daily and hourly.

[00:26:41] Lauren: Yes. You get very good at wearing a mask, the greatest thing. But that’s almost the narrative that’s pushed that we should still be able to do all of these things and continue on. And it is important to move forward with life, but that doesn’t mean you move on from grief or what’s happened and your person who you loved. Of course we miss them. Of course we want to honour them and hold space for who they were and what our life looked like whilst continuing on with the life in front of us. So yeah, it’s holding both of those things in tandem.

[00:27:12] Kate: And that’s what grief is always, isn’t it? You’re constantly juggling two emotions at the same time, and Jake is, he’s not was. He is. He is. And I’m sure in your life that you bring him along in the journey. And having heard you say that what sparked that tool of that’s now grown into Gather My Crew, that I am sure is in light of him and it is your experience with him that has sparked that tool as well.

[00:27:38] Lauren: Absolutely. And it was such a gift in the thick of his treatment and that cancer journey. There are a lot of hard days and to have this idea and to dream about that together, that perhaps this is something we could do at that point, it was when you’re better when we can get back to life. We’d love to help other people who are in tough times because we would have benefited so much and we wanted to be able to pass that on. So it was a real gift to sort of have something beyond that cancer journey to dream about and to talk about together.

[00:28:12] Kate: So powerful.

[00:28:13] Lauren: Yeah, I remember late nights we dragged the mattress into the dining area because that’s where it was air-conditioned. And just lying on there talking late at night. There was a week there where that happened a few times and that’s really special to me because it did just feel like we had something to look forward to and to dream about.

[00:28:31] Kate: And working together as a couple, and when you are young and in your marriage and if you’re renovating a home or working towards a goal you didn’t have those normal milestones in a sense. So I wonder if that’s what you were grabbing to, you know, that although you’re projecting and hoping and wishing that’s what your future, you guys are going to do it together. But yeah, it sounds like you were creating and fostering an idea and hope as well. Like we as humans, we love hope. We love to be able to dream. So it sounds like you had some really beautiful moments doing just that.

[00:29:05] Lauren: Yes, it was really special.

[00:29:07] Kate: Yeah. And, you know, you mentioned that there were some really hard days, especially that first year when you were doing what you thought was expected of you. Was it in that time that you began really honing into this idea of the tool. Was that finding a purpose in that year really helpful or was it post the year?

[00:29:27] Lauren: Yeah, it was really helpful. And I think because that’s something that cancer robbed a life. And I didn’t want it to rob mine as well. I wanted to honour Jake well, I wanted to grieve in a way that was authentic to me and not try and rush that. But I also wanted to make sure that my life was working towards something meaningful and not letting my life be lost as a result of a cancer journey as well.

I really felt that deeply. So yes, I was working towards that. And I, I knew that I only had my experience to work on and I wanted to hear from lots of people and find out if other people were experiencing those same things. And would benefit from the same things. And it was abundantly clear that it could be a tool that was very much applicable to any sort of tough time. If you want to call it that, and that it could be really versatile for whatever people were facing. It was really meaningful to be able to think about that and think about perhaps intercepting in people’s own journeys at that initial diagnosis stage or when crisis hits and not leave them hanging and give them a tool that can help.

[00:30:31] Kate: Yeah, and it’s incredible and I think that, would it be also, thinking as you were speaking, is it about also it gave what the experience you’ve gone through purpose? As to this hasn’t been for no reason and you, as you beautifully said you’re helping people in that moment, in that crisis point or diagnosis that Jake’s life wasn’t lost for no reason, that there is truly a purpose behind what’s propelled you post.

[00:30:57] Lauren: Yeah I always thought there has to be some good that comes from it. There’s devastating parts to it, but there has to be some good that can come from it as well.

[00:31:05] Kate: And I think you’ve done that beautifully. With the work at Gather My Crew and with as you said, coming into the moments of people’s lives that is usually the worst time that one is experiencing in their life and to have a tool and you’ve, lived and breathed that. So you know how impactful this tool is and can be for somebody. How do we feel I guess and talk to you like this is about grief, the impacts it could have when someone’s loss is it, we know that the one’s brain is so overwhelmed and completely in a grief-stricken mode. Is it something that a friend can begin to organise? Cause as you said, like you can’t think about it, you don’t have the mind space to do it yourself. So does it need to be actioned by the person or themselves or can it be someone within their crew doing it?

[00:31:53] Lauren: Yeah absolutely. So yes, if the person in need isn’t up to it, somebody who’s close to them can organise that for them and run that for them. And I think that’s, sometimes that’s a real gift as well to their community. I think if you had a best friend who was going through the worst time of their life, you would want to be doing things you would want to be helping. And so for them to be able to run that and identify what might be meaningful to you and make that happen is a real gift to both people. And yeah, I think that is important as well. When we think about that, asking for help or accepting help is not only a benefit to you, it’s also a gift to the person offering often. 

It’s a really nice way of framing it. And then also meaningful help will look different to everyone and it can also change throughout someone’s journey. So, one of the uses of the app is also to keep socially connected. So maybe somebody needs a lift to their hospital appointment and someone’s happy to drive and that’s also giving them some social connection as well on the way. So little bits here and there or popping over just for a cup of tea. And maybe you don’t talk, maybe it’s just having company and um not feeling alone or someone sitting by you at treatment or all of those sorts of things that just hold space for people wherever they’re at. And know that they’re held throughout it, whatever that looks like.

[00:33:15] Kate: And did you feel held through your experience? 

[00:33:18] Lauren: I would say yes and no. I think I really lacked the skills in knowing how to be open, accept more help, ask for and accept help. I think emotionally, yes. I think very much, very grateful to family for really showing up and some friends as well. But yes, practically, I think could have been supported more, but I didn’t know how to identify that or to communicate that.

[00:33:43] Kate: And do you think that sometimes to the practical things are the things that we can control in a moment of chaos in some sense. So sometimes they’re really hard to let go of and hand over to people cause you’re like, getting the laundry and detergent and going to Coles is something that I could do before and it’s a sense of being able to hold on to what was. And to hold on to what you can and you can’t control.

[00:34:08] Lauren: Yeah, that’s probably very accurate. Thinking about my personality, I think that’s probably something that I definitely tried to do. And I think the other thing is typically people, if people don’t know what to do, they’ll show up with meals and flowers. And both of those things come from a really lovely place of good intention. And so probably because there was some of that, I felt like I was being ungrateful if I asked for something different. And for us, meals wasn’t ideal, there was a lot of things he couldn’t eat. There was a lot of smells that were really triggering. So we were eating no smell, dry food yeah, no hot meals really. And there’s also only so much pasta and rice we can eat. 

[00:34:50] Kate: We know it freezes well, but…

[00:34:52] Lauren: Yeah, we know, we know it freezes well, but if that’s not your normal, then it is difficult to get through. So I think, if I could have swapped out some of that for, you know, someone cleaning the bathroom while we were at treatment, because the smell of chemicals and the smell of cleaning products just wasn’t able to be in the house while Jake was around. So, during that I didn’t know how to communicate. It wasn’t for lack of good intention and it wasn’t for lack of people wanting to, it was just not knowing how to make that all happen.

[00:35:21] Kate: And I think it has to do with society, like, I didn’t want to seem ungrateful. And it’s the same conversation I think we’ve had in regards to grief, you know, it’s the society’s expectation and not wanting to offend anybody. So you’re not wanting to ask and be articulate as to what you truly need. And I think it’s so important that we try to change those narratives, especially while people are in a traumatic situation that, just because you say no to something, say no to that quiche and ask for a bathroom clean. It’s not rude. It’s just really quite open and having that open communication as to what you need. But I know that’s so challenging to do and then in the same way of grief as well. That is also a topic that isn’t handled well in society.

[00:36:04] Lauren: Yeah. And I think we just as people who want to help as well, we just, we don’t know where to start. We don’t know, our brains revert to meals don’t they? Because we all need it. But I think just taking some time and thinking outside the box. Is there a job that I can just tick off for someone every week? Can I put out my neighbour’s bins every week and just tell them never to think about it for the next however long they need? Or is it that I can, if a friend’s going through something, can I take the kids to their extracurricular activities every week and just wipe that off the mental load. Or things like that, that we just need to be a bit more specific and offer something that they can just easily say yes to instead of trying to think of a different way or… 

When the app was being developed, there was a pilot group who tested it provided feedback and everything. And there were a group of breast cancer patients and the question was put to them. “What is the thing that you need help with the most if you could exchange all of those meals and whatever else it is for what you really need?” Do you know what that is? And there are a number of single parents in that group and what they all said was someone to help change the bed sheets.

[00:37:15] Kate: Wow.

[00:37:15] Lauren: As a breast cancer patient who, they couldn’t carry heavy, wet laundry, they couldn’t lean over beds in the right way to be able to make them how they needed to be and for many of them, them and their children were sleeping in sheets that probably needed to be changed a while ago and they just weren’t because it wasn’t easy and it wasn’t doable. And for someone who loves to help. To think that I could just help someone change their bedsheets and that would be meaningful to them. How easy! What a simple task! But that’s not where our brains go. So yeah, helping is a skill and I think the more we think about it and the more we just be a bit more intentional and sit with it and think about what’s meaningful to that person in these circumstances. And what can I take from them that doesn’t require more mental load from them.

[00:38:00] Kate: Yeah. Because when the mental load is also lifted, it allows the opportunity to deal with the emotional space of what’s going on. While that mental load that is there, but the mental load come and goes, but that emotional trauma and the emotional heaviness stays with you until we deal with it really. So to be able to pull off those practical tasks leaves room for looking after your wellbeing, your mental being.

[00:38:23] Lauren: Yeah, absolutely. I remember quite early on. I was, yeah, in peak do-it-all mode and try and get everything done and organise all of these things. And Jake had said to me, “Can you just sit with me? Can you just spend a bit more time sitting?” And that was really eye-opening for me. Because I had been doing all these things that were still caring for him, but it wasn’t in the way he needed in that moment. And they were things that could have been delegated, or someone could have helped me with. Whereas me sitting with him, no one else could do that. No one else could swap out for that. And so that really grounded me.

[00:38:58] Kate: That’s your role is that you were playing as a wife, as a lover. Whereas what you were doing is being that role of a carer. But what he needed you is to come back and be that emotional support and connection, his person.

[00:39:11] Lauren: Yeah. So I am grateful that happened very early on, and that was something I, I really tried to keep in mind throughout the rest of the journey. But yeah, it was eye-opening to see how easy it is to get caught up in all the practical and all of those things when the emotional is just so important as well.

[00:39:27] Kate: Yeah.

[00:39:28] Lauren: You’d not get that time back.

[00:39:28] Kate: You don’t, and you know that more than anybody, don’t you, now that you’ve, now that Jake has passed and was he aware that he was going to, were you able to set up have conversations and things like that, or did it come all far too quickly? 

[00:39:42] Lauren: Yeah, really grateful that we did have a little bit of time. So a number of treatments were tried and pretty much anything that was on offer until nothing was working. There were no more options available and from the day that sort of there was, yeah, we were told and it was confirmed no more treatment options and we went home. There was 11 days between then and when he passed. So not a huge amount of time. But yeah, I’m really grateful that nothing was left unsaid and that we knew that was coming. We were very realistic, if a miracle had happened, how beautiful what a story and how incredible. But we also knew the reality of what we were dealing with. And so we did have really hard conversations, but really important conversations. And it was such a gift after he had passed for me to know that I knew exactly what he wanted, what his wishes were. I knew how he felt about me. I knew what he wanted for me in my future. So many things that I didn’t have to guess about or wish that we’d talked about. It just, we had really done all of that. And it was also really, those 11 days, I would probably describe as a really sacred time. Yeah, there’s just so much weight to everything you say and do. And yeah, I think as much as the palliative care time can be, it is really devastating. It’s also a really beautiful time and a really special time. And I think what happened in those 11 days it’s been a real gift to me in grief.

[00:41:09] Kate: Yeah. Cause it’s an honour to care for somebody in their final days and to death. Like it’s a true honour to do that and to hold when we’ve said this a number of times through this podcast, to hold space for people. And as you said, it’s sacred. You know, that time is limited. We, we live knowing that time isn’t guaranteed, but you knew that time is finite and to create beautiful memories that last you into life post-Jake, it’s an incredible piece of advice to give to people.

[00:41:41] Lauren: Yeah, I think I reflect back, I was probably the best I’ve been at asking for help in that time. Because there was no way I was going to let some errand or practical thing that I could delegate to interrupt those 11 days. I wasn’t going to be anywhere else. Yeah, in a perfect world, I would have applied the same thing, through the journey. But there’s just, there’s nowhere else you would want to be. And time is really sacred. Yeah.

[00:42:07] Kate: And how have you gone, as we said, moving forward with Jake? How have you kept, you know, you’ve done this beautiful Gather My Crew and I feel like his spirit would be living in that. But how has life looked post and moving forward with Jake, how have you managed those two?

[00:42:23] Lauren: I think trying to hold space for grief, just ongoing. Life is full. Life gets in the way. But for me, I carved out about three times a year. So around his birthday, around our wedding anniversary, and around the anniversary of his passing. I take myself away, generally to the coast. That was sort of a happy place and somewhere I really love. I find the ocean grounding. And it also means that I’m removing myself from my day-to-day responsibilities. And for me, that’s really important to have space to just be, and that looks different each time it changes year to year. But I can’t distract myself with cleaning the house or working or whatever it might be. I just get rid of those distractions so I can just be and maybe I’m okay. Or maybe it’s where it all comes out. And it’s, I really need that release and reset. But yeah, for me, that is one thing that I do all the time. It’s been just over 5 years and I still do those things.

[00:43:24] Kate: It sounds like you set yourself up really well for those moments. You said you’re very aware, you know you’re cognizant of course, grief, I always think markers and anniversaries. They’re a knowledge to the outside world that this person’s left you, you have that every day. But it’s highlighted more so in, with that date, but it sounds like you’re just very aware of your emotional state around those times and you protect yourself.

[00:43:50] Lauren: Yeah, try to, and it’s come with learning. And the other thing about those milestone dates is typically I will feel, it’s almost like I’m anticipating the date so much that almost the lead up is just..

[00:44:04] Kate: Just as bad.

[00:44:06] Lauren: Excruciating. And then the day comes and it’s like you hold your breath until the day comes. And then the day comes, it’s always a bit different, but sometimes I don’t even know what to do with myself. Because there’s so much emphasis on the date, but it comes around and it’s a day and that always looks different. But then the day after, I often feel absolutely exhausted. Just like I’ve been hit by a bus because there’s been so much lead-up, and the day.

[00:44:29] Kate: And adrenaline..

[00:44:29] Lauren: And it’s like, “Oh, I can breathe again.” And so yeah, when I do go away, I try to carve out a bit of time either side just to have that as a whole. And other people will remember that milestone date only, whereas you have it all round, it can be quite exhausting. 

[00:44:46] Kate: It’s like bruising, isn’t it? You’ve got the bruise there, or got the hit, we should say, and then it develops over time. It might look not so big or it might look, you know, a different colour, but, hangover of grief, I don’t think people can understand.

[00:45:00] Lauren: No. And in saying that milestone days are hard, but so can any random Tuesday, you know, grief comes in waves and it comes whenever.

[00:45:09] Kate: Yeah.

[00:45:10] Lauren: There’s no control around that. And, yeah, it will happen because like I said, you grieve because you loved and because something meant a lot to you, something or someone. And so that’s important to give it space.

[00:45:22] Kate: And has it changed? I’m thinking of someone who’s potentially just lost and those emotions and feelings and triggers, let’s say, are really big and hurtful at the beginning. As you mentioned, you’re five years post, how do they compare now, say if it’s when you heard a song or something triggered you, to then how you react now? 

[00:45:44] Lauren: Yeah. I don’t know if you’ve ever seen this analogy. It’s a drawing and grief is a ball and the ball stays the same side, but perhaps the square around it changes. So your capacity to hold grief changes. So the grief is always there and it’s the same size, but it probably looks different day-to-day. But your capacity to hold it and carry it changes. So as there’s that shock initially, and that can last a year or more or however long it lasts. But as that wears off, and then as you settle into what life looks like now, and then you sort of keep swimming, I guess through it. Your capacity to hold it grows and the way you carry it changes. And so there’s a little bit of getting used to it as we’re triggered by things, the first time might be worse. Maybe the 3rd time’s worse. I personally found the second year of grief harder than the first. 

[00:46:37] Kate: I have heard that before.

[00:46:38] Lauren: Yeah, because everyone thinks the first year is full of all those firsts. It’s you know, you’re getting used to it, all of that. And then once the one-year marks hit, you must be a bit better now. Um.

[00:46:50] Kate: Now the cortisol is just coming down and now the grief is really coming out.

[00:46:55] Lauren: Yes. And that’s exactly, it’ll be different for everyone, but that’s really how I felt. And it was, oh my goodness, everyone thinks that I should be okay now, but this is worse than what it was. This is just so hard to navigate. And so it will ebb and flow and it will change, but there’ll be days where something happens and you realise it didn’t trigger you the same way. And you realise that you’ve not moved on, but just developed a different way of carrying the grief. And it is really hard in the early days, though, and it’s hard to imagine what it’s like to not feel the triggers so deeply and, not be completely bowled over by it.

[00:47:32] Kate: Did you ever think you’d be on a podcast, say month one, grief to now being able to sit here and beautifully articulate your love for Jake and the journey that you were on and still are on together.

[00:47:44] Lauren: Yeah no, I didn’t. I hate public speaking.

[00:47:49] Kate: You’re so great.

[00:47:50] Lauren: But this is the exception. When I speak about Gather My Crew and I speak about Jake and I can share our story to whether that resonates with people. Or that they can pluck something from that, that’s when I’m happy to share. But no, if you asked me way back then there is no chance..

[00:48:09] Kate: Yeah.

[00:48:09] Lauren: I would’ve thought I’d be sitting here today with you.

[00:48:11] Kate: Yeah. As you say, it’s that beautiful analogy that you gave, the grief is still there. But you’ve grown around it and you’ve changed and grown and developed. And it’s, I think you and I have had this conversation and I think as until you’ve lost and you’ve loved and you’re really grieving somebody that you’ve lost, that you don’t realise how important it is to speak it to the community and change the narrative in society because we don’t do it well. We don’t do grief well in society.

[00:48:39] Lauren: No, we really don’t. And yeah, I’d love to see us get better at that. Because it is something we’re all going to have to deal with at some point. And I think it’s important that it’s not labeled as a bad emotion that we must move past because I don’t think that’s accurate. I think that it’s a privilege to grieve because it meant that we experienced something worthwhile. Um, and yeah, we need to hold space for that in our communities and around people.

[00:49:05] Kate: And I think to also be able to see someone who is grieving that they can hold two emotions at the exact same time.

[00:49:14] Lauren: Yes.

[00:49:15] Kate: And it’s okay.

[00:49:16] Lauren: You can be deeply devastated that you’ve lost someone and also experience great joy, and both things exist alongside each other.

[00:49:25] Kate: Cause I think society’s judgment is not needed. That griever and someone who is grieving is already judging themselves and struggling potentially within themselves of, “Oh my God, I’ve got this emotion that’s so happy or I’m loving again and I’m open to new.” But then also holding that grief of, but my person isn’t here and I’m deeply sad and I miss them. So there, as we said, there’s that push-pull that griever already is dealing with themselves. They don’t need society judgment and expectations put on them.

[00:49:54] Lauren: Yeah, that’s right. And our hearts are pretty incredible. They grow, their capacity to love grows as well. We can love our person 100%, and then also grow and let new in as well, yeah.

00:50:05] Kate: Absolutely. You know, and I think, just given the essence of time, I would really, I can’t thank you enough for sharing your story and what you and Jake have achieved. It’s incredible. And the purpose that you’ve really run with and how many other lives you are now continuing to help. I think it’s incredible. I would like to ask, usually we ask for golden nuggets. And I’m going to be a bit cheeky and ask you to give two sets of golden nuggets. And that is for the griever, and the person who has lost someone. But then also golden nuggets for somebody who is nurturing and caring and holding space for someone who has lost. What would you talk to them?

[00:50:46] Lauren: Yeah. If you’re the person who’s holding space for someone who’s lost, I think don’t be afraid to say the person’s name, whoever has passed. Keep them alive in your memories and don’t make it awkward by avoiding it or not saying their name. I think there’s this misconception that “Oh, but if I mention them, I might be reminding them.” We don’t forget. You can’t, you cannot forget that you have lost your person. So you won’t be reminding them, but it’s really lovely to hear their name and hear you speak about them and, and know that they haven’t been forgotten.

[00:51:19] Kate: Because would that be your worst fear, is that your person is forgotten?

[00:51:23] Lauren: Yeah. Absolutely. So yeah, I would say that to the people holding space and just continue to show up and remember those key dates. But also check in on the random Tuesday and just yeah, stand by them as much as you can. And they may withdraw it sometimes, and they may lean in at others, but no, it’s probably not a personal reflection on you and your friendship. It’s that they’re navigating something really hard and they’re doing the best they can. Yeah.

[00:51:47] Kate: And check in post year one.

[00:51:49] Lauren: Yes please. Yeah. Yes. No, that’s really important. And then the other question that was for the grieving, wasn’t it? Yeah. Be kind to yourself. It is a really hard road and there’s no comparison. Don’t compare yourself to anyone. It doesn’t matter how similar the circumstances. Your grief for your person is unique. And I think honour that in the best way that you know how and carve out space for that. And don’t let society tell you that you should be something else. Just do it the best you can and be authentic to yourself and hold space for that cause it’s a really difficult thing.

[00:52:28] Kate: That is some beautiful set of advice. And one I think that can be applied to anybody. Whether they’re going through the journey or not, is to be authentic to yourself and to be kind, right? Like all in society and all across the world, we do need a dose of kindness and just be aware that people are daily, going through some really tough moments. And although they might not look and they may be holding a different emotion that underneath that there may be a lot going on, much about their feet.

[00:52:55] Lauren: Yes.

[00:52:56] Kate: Yeah well, Lauren, I cannot thank you enough for sharing your story and sharing Jake’s story as well, because this is just as much about him as it is you. And to also beautifully highlight Gather My Crew and what an amazing tool and app that you guys have created and that you’re a part of and we can’t thank you enough for your work that you do.

[00:53:17] Lauren: Thank you so much, Kate. It’s been a great honour to have a chat with you today and really grateful for all the work that you and the Leukaemia Foundation do. It’s invaluable.

[00:53:26] Kate: Hmm. Well, it’s an honour to do. So, thank you so much.

[00:53:29] Lauren: Thanks, Kate.