In this episode of the Talking Blood Cancer podcast, host Kate Arkadieff sits down with Denise Andres to talk about her lived experience supporting her husband, Jacob, through his diagnosis and five-year journey with multiple myeloma. Denise shares openly about the shock of diagnosis, the rapid changes it brought to their daily lives, and the shift from being a partner to becoming a carer.
Exploring the challenges Denise and Jacob faced, including managing ongoing treatment, coping with the effects of chemotherapy, and navigating the emotional strain that comes with a terminal diagnosis. Denise describes the difficulty of balancing her own health concerns with Jacob’s needs and the importance of a strong support system during such a difficult time.
Denise candidly discusses the reality of caring for someone living with blood cancer, touching on topics such as the impact on intimacy, the loss and grief that occurs before and after bereavement, and having hard conversations about end-of-life planning. Providing practical advice for others in similar situations, such as writing down important wishes and being open, where possible, about emotions.
Following Jacob’s death, Denise reflects on her journey of grief and the process of finding a new sense of normalcy. She shares how she found healing through saying yes to opportunities and eventually moved into a caring profession herself, wanting to support others going through similar experiences.
This aims to provide comfort and reassurance to those living with blood cancer as patients or carers, and that support is available through organisations like the Leukaemia Foundation.
[00:00:00] Introduction
[00:02:37] Kate: So, hi there, I’m Kate and welcome to today’s episode. Thank you so much for joining in. Today, we have an episode that is truly, I think, going to impact so many people that are listening. And it is one that is a little bit different from what our usual format and our usual story. But it is a story that’s really important to tell. So I will let our guest introduce themselves and also let us know a little bit about the story that in the path that they’ve walked. So I will hand it over to you.
[00:03:06] Denise Andres: Thank you, Kate. Thank you for having me, and hello to everybody. A little bit about myself, I am currently working as an AIN at a public hospital…,
[00:03:15] Kate: Yeah.
[00:03:16] Denise Andres: …And I’ve jumped into that because I love caring for people after my husband passed away.
[00:03:22] Kate: Mm-hmm.
[00:03:22] Denise Andres: So he was diagnosed with multiple myeloma back in October 2018, and had suffered that for five years, where he passed away nearly four years ago now.
[00:03:34] Kate: Yeah, and his name?
[00:03:36] Denise Andres: Jacob.
[00:03:36] Kate: Jacob. And your name? Shall we give the guests your name as well?
[00:03:39] Denise Andres: Oh, yes. Hi, I’m Denise!
[00:03:41] Kate: Hi, Denise! There we go! So this is the story of Denise and Jacob and I would love to ask, you know, you have mentioned that he’s passed, but what led him to find out his diagnosis or what was happening around the time for both of you?
[00:03:57] Denise Andres: He was working at the film studios and injured himself and his shoulder, and it just wasn’t healing. And then…
[00:04:07] Kate: Mmm.
[00:04:08] Denise Andres: …he had injured his ribs, and nothing was healing. So that happened back in April…. Sorry, 2017, he got diagnosed. And then when it came to, around October, went to the doctor to find out what was going on, and then got diagnosed that he had multiple myeloma.
[00:04:24] Kate: And how old was he at that point?
[00:04:26] Denise Andres: Oh, he was forty-eight, I believe?
[00:04:30] Kate: Yeah.
[00:04:31] Denise Andres: Forty-seven, forty-eight.
[00:04:31] Kate: So you know, young and fit, and to then sustain these injuries that aren’t healing, I guess that must have just been quite a shock for all of you. Had you heard of multiple myeloma before?
[00:04:43] Denise Andres: No, never. Absolutely not. So we had to look it up and…
[00:04:47] Kate: Mm-hmm.
[00:04:47] Denise Andres: …It was a complete shock ’cause we weren’t expecting that coming home from the doctor.
[00:04:52] Kate: Yeah. And was that the GP that you had that…
[00:04:55] Denise Andres: Yes.
[00:04:55] Kate: Yeah. Yep, and then from that point, was it all systems go? Did you have to go to like a specialist straight away, or what did his treatment plan look like?
[00:05:05] Denise Andres: Yeah, it was all systems go. Once we processed it overnight, then it was straight to the haematologist. It was a couple of weeks before he got into chemo. But the first week was sort of processing it all, he was fine. And then the second week, he went downhill to where he couldn’t walk. So it was…, yeah, it was a real, it happened extremely quickly.
[00:05:27] Kate: Yeah.
[00:05:27] Denise Andres: And that was two weeks before my first back surgery, so it was all happening at the same time.
[00:05:32] Kate: Ooh you were having surgery yourself?
[00:05:34] Denise Andres: Yes, yeah. So it all…, all happened. So we’re dealing with everything.
[00:05:38] Kate: Yeah.
[00:05:39] Denise Andres: And then he was diagnosed as terminal as well, so we had to wrap our heads around everything…,
[00:05:45] Kate: Yeah.
[00:05:45] Denise Andres: …At the same time.
[00:05:46] Kate: And how do you do that? It’s an unanswerable question, almost, isn’t it?
[00:05:50] Denise Andres: Uh, yeah.
[00:05:50] Kate: But you did it.
[00:05:52] Denise Andres: Yeah well, at the time, I was a nail technician, working for myself.
[00:05:57] Kate: Yeah.
[00:05:57] Denise Andres: So, fortunately, I was able to move clients, that we could go to all these specialist appointments. But it was many mornings of crying…,
[00:06:04] Kate: Mmm.
[00:06:04] Denise Andres: …Of trying to deal with everything and trying to cope how I was going to navigate both of us being debilitated at the same time.
[00:06:12] Kate: Were you on… in the same hospital at all?
[00:06:15] Denise Andres: No, no.
[00:06:17] Kate: No? Oh, wow.
[00:06:18] Denise Andres: But thankfully, we had a great support system. My sister came over from New Zealand, looked after him for the month while I was away. So he was able to come in and see me…,
[00:06:29] Kate: Mm-hmm.
[00:06:29] Denise Andres: …When he wasn’t feeling sick. Yeah.
[00:06:32] Kate: Wow. And did you have, or I should say, do you have children between you two or?
[00:06:37] Denise Andres: No, no, we didn’t get a chance. But everything happened so quickly with the chemo ’cause he went straight onto chemo straight away. The doctors sort of didn’t give us a chance to go and…, go down the fertility route. So we did try that afterwards…,
[00:06:50] Kate: Yeah.
[00:06:50] Denise Andres: But it was too late…,
[00:06:52] Kate: Yeah.
[00:06:52] Denise Andres: …With the chemo had already…,
[00:06:53] Kate: Yeah, or the effects had already…
[00:06:54] Denise Andres: …stopped everything, …yeah, yep.
[00:06:56] Kate: Yeah, wow. You said that he received that news that he was terminal. How was he when he heard that news?
[00:07:05] Denise Andres: He was good. As good as that you can be. There was never, ever a ‘Why me?’ ‘Why did I have to have this?’ Never throughout his whole…, five years. He just sort of picked up and got on with it. But, when that second week, when he could hardly walk, that’s when all the pain set in. So he was just trying to deal with daily life…,
[00:07:26] Kate: Yeah.
[00:07:26] Denise Andres: And trying to get through pain and all of that.
[00:07:29] Kate: In that in itself, that is one of the cruel things about cancer is…, is that sometimes, not only there’s the physical symptoms that come along with it, you know, whether the cancer hits themselves and, you know, for myeloma, it is a very common thing, especially if he had fractures and things like that throughout his body. But then also the physical symptoms that the chemotherapy brings, but then to bring the burden mentally as well. As having heard messages such as ‘your terminal’, or even for the fact that you’ve got cancer and your life has to stop, as how it was progressing before this diagnosis.
[00:08:02] Denise Andres: Yeah, absolutely. Priorities completely change. Your whole life stops dead. You stop working.
[00:08:09] Kate: Mmm.
[00:08:09] Denise Andres: I stopped working and cared for him. Yeah, you just appreciate all the little things.
[00:08:14] Kate: Yeah.
[00:08:14] Denise Andres: It’s not just work, work, work, where it was before. Yeah, your priorities really do change.
[00:08:20] Kate: And how did you, you know, you said you stopped…, you cared for him, and at that point I think I thought of well, yeah, you do, you do begin to care for them, and you transition into that role of being a carer from being a partner.
[00:08:32] Denise Andres: Yes, yes.
[00:08:33] Kate: Was that difficult? How did you balance those two roles?
[00:08:37] Denise Andres: Yeah, it was very difficult. It’s a very fine line between carer and wife. Like you become more a carer than a wife, really. During the, the five years, of course, he was in so much pain, like the physical intimacy completely stops. I can barely hug him because he is in so much pain. And coming to that, like when he actually passed, I gave him the biggest hug, and that was the first time in five years that I could actually hug him tight. Which was just…, yeah, a beautiful, special moment…,
[00:09:10] Kate: Yeah.
[00:09:10] Denise Andres: …But so sad that during that time, ‘ cause he couldn’t, he couldn’t sleep in bed. He was in so, so much pain. So he was on a recliner majority of the time.
[00:09:22] Kate: Mm-hmm.
[00:09:22] Denise Andres: And what got him through was playing GTA, Grand Theft Auto.
[00:09:26] Kate: Did it?
[00:09:27] Denise Andres: It got him through, yeah.
[00:09:28] Kate: Yeah. It’s something that he could do, as you said before, like so much has taken away from you, and everything just stops. And a lot of the things that you did, you participated in pre-diagnosis, sometimes it’s taken away from you. So it’s incredible that he could, you know, shift and find a joy, although it may not have been what he wanted to do, but it’s something he could do.
[00:09:50] Denise Andres: Yeah, and he could do that in his armchair.
[00:09:52] Kate: Yeah.
[00:09:54] Denise Andres: And, yeah, rule that sort of world.
[00:09:56] Kate: Yeah, and did he?
[00:09:57] Denise Andres: He did.
[00:09:59] Kate: He did.
[00:10:01] Denise Andres: Yeah.
[00:10:01] Kate: And I just wanna take you back to that moment, ’cause I think you know, it’s really, it’s really powerful, and I’m very thankful you shared about how…, in that last moment with him here, that you were able to give him that cuddle. And you said that in those five years it was something that you weren’t able to do because of him being in pain. I just think that it’s something to really recognise that cancer does take that part away from a relationship, doesn’t it? It is that..
[00:10:29] Denise Andres: Yeah.
[00:10:29] Kate: …As you said, that physical intimacy and that connection, because it breaks the care…, it cannot break, but it changes the way a carer, you know, a wife or a partner transitions into a carer. You can lose that intimacy and that connection, can’t you?
[00:10:45] Denise Andres: Yeah, absolutely. It’s very difficult, like I said, it’s a very fine line…,
[00:10:50] Kate: Mmm.
[00:10:51] Denise Andres: …Between that and you’re making all the appointments, you’re going to appointments, you’re like a secretary, you know, in a way.
[00:10:58] Kate: Yeah.
[00:10:58] Denise Andres: And just making sure that everything’s flowing and that he’s where he’s supposed to be.
[00:11:02] Kate: And did you talk about it with him? Did you talk about it with Jacob?
[00:11:06] Denise Andres: Yeah, we did, and we actually, even though it was a tragic thing, we grew so much closer.
[00:11:13] Kate: Mmm.
[00:11:13] Denise Andres: Because we were…, we were together 24/7. You know, we had our moments…,
[00:11:17] Kate: Yeah, of course.
[00:11:18] Denise Andres: …Like everybody.
[00:11:19] Kate: Every partnership does, yeah.
[00:11:21] Denise Andres: Yeah, and then you have dexamethasone thrown into the mix of it, where I just wanna move out.
[00:11:27] Kate: Yeah.
[00:11:28] Denise Andres: So it got to the point where we just had to laugh and say, okay, ‘We are at that dexamethasone time. I’m moving out.’ You know, just as a joke, just for both of us to cope…,
[00:11:39] Kate: To break the ice.
[00:11:40] Denise Andres: …Cope through it, yeah.
[00:11:41] Kate: Mmm.
[00:11:41] Denise Andres: Yeah, because it’s, yeah, very difficult time going through that.
[00:11:45] Kate: It is. I’ve had conversations with people like, ‘Oh, they’re completely changed, or their mood’s changed, or they’re more snappy, or they’re just up all the time.’ And then I’ll go, ‘Hmm, are they on Dex or are they on a steroid?’ And then they go, ‘Yes.’ And you go, ‘Yep. That’s really common.’ It’s almost like you have to track it, like a woman’s menstrual cycle to go, ‘Ooh…,’
[00:12:05] Denise Andres: Yes.
[00:12:05] Kate: Yeah, okay, they might be a bit prickly this week. Right? We’ll note that for behaviours or just to be aware of.
[00:12:11] Denise Andres: Yeah. And it was difficult for him too ’cause he didn’t wanna be like that.
[00:12:14] Kate: No, yeah.
[00:12:15] Denise Andres: So it was difficult for him as well. But the, uh, specialist wanted to, at one stage, up it to 40 milligrams. And I said to him, ‘Do we really have to?’, like, is it really something…,
[00:12:25] Kate: Yeah.
[00:12:25] Denise Andres: …We have to do?
[00:12:27] Kate: Yeah.
[00:12:28] Denise Andres: It was just relentless, ’cause it was every…, oh, I can’t remember the…, when he had to have it done, but it was all the time for the five years. So it’s not like we ever had a period that there was no dexamethasone.
[00:12:39] Kate: Yeah, it was something that was constantly….
[00:12:42] Denise Andres: Yeah, we were worried.
[00:12:43] Kate: Yeah. And so you mentioned he passed four years ago, and you mentioned also at the beginning of his diagnosis, he was told he was terminal. Was there a point you know, when he did leave this earth, that you knew was there a prep time in a sense, as best you can? Or was there conversations around treatment is needing to stop, we are nearing the end, or was that his choice?
[00:13:06] Denise Andres: Yes. So six weeks before he passed, we got told that there was no more treatment available. But we had…, the specialist had actually asked consent from the states for one of their chemo tablets. So we tried that and yeah, everything had failed. Six weeks beforehand, yeah, we got told that, and it just happened pretty quickly. Like the specialist had said that, yeah, “That’s it… no more…”, we don’t need any more appointments with him, and just left us. So we were in a state of ‘What do we do now?’
[00:13:41] Kate: Did they refer you to palliative care?
[00:13:43] Denise Andres: No, there was nothing. There was no support, palliative care, there was no oncologist. And throughout the time, people had asked if we had an oncologist, and I was like, ‘No’, and I didn’t even understand what really an oncologist was. But I presume that to have one would’ve probably helped us in the end, final stages. The only thing that I pretty much thought he would last about six weeks was that, a couple of years prior, just before COVID hit, he was gonna do a trial…, a CAR T-cell trial. So he had to be off the chemo. So he was off the chemo for six weeks, and he was just…., he went back to the beginning where he couldn’t walk. He couldn’t do anything, so he had to go back on. So that was my sort of baseline where I could judge that six weeks was gonna be about it. And then it just happened really quickly. He was wobbly when he walked. He was sleeping 20 hours out of the day. He was just gibberish, and for four days he was like that, and then just sleeping constantly. And so I’d ask him, ‘I think we need to go to the hospital.’ He’s like, ‘No, no, no.’ So, we left it for three days and then by the fourth day, I said to him, ‘We really need to go.’ And he is like, ‘Yes.’ And then…,
[00:14:55] Kate: Yeah.
[00:14:56] Denise Andres: …That’s what happened all quickly. And then four days later, he passed.
[00:14:59] Kate: And had you had conversations with him before he passed, and the lead up in those five years to what his wishes were or how, if he did get to that point, what he’d like it to look like?
[00:15:12] Denise Andres: Yeah, thank goodness we did, ‘cause we were doing our wills. I had forgotten a lot of…, when the time came, of what he wanted, but thankfully, I had pre-written all the questions out and what he’d like before I had written it out officially. So I had still a few bits and bobs, but he wanted to be cremated and scattered in the ocean.
[00:15:33] Kate: Mm-hmm.
[00:15:33] Denise Andres: So I knew that, and he wanted to be at the funeral in his wedding suit. So all those little details, I’m so glad that I had remembered, and I think it’s so beneficial to talk about all of that, even though it’s such a hard topic at the time, and to write it down. Write everything down, because when it comes to that time, you forget. We forget so much.
[00:15:56] Kate: That is some really, really good advice you’re so right. Write it down.
[00:16:00] Denise Andres: Write it down.
[00:16:01] Kate: You know, there’s research that say that when someone loses their beloved, that their brain changes…,
[00:16:08] Denise Andres: Yeah.
[00:16:08] Kate: …And functions differently. You to call on, potentially a conversation you had two and a half years ago would be really hard to do in that moment.
[00:16:08] Denise Andres: Yes.
[00:16:16] Kate: Yeah, that’s really pivotal advice, really great advice. And as you mentioned, it is really hard to have that conversation. Did you bring it up? Or was it…, he brought it up? Because I know people, they do, they dance…, or we know we need to have it, but we don’t wanna have it because…,
[00:16:35] Denise Andres: Yeah.
[00:16:35] Kate: …We don’t wanna upset them.
[00:16:36] Denise Andres: Yeah.
[00:16:37] Kate: How did you enter into it?
[00:16:38] Denise Andres: It…, I think we both brought it up at different times, and it was just little bits at a time. It wasn’t a…,
[00:16:44] Kate: Mm.
[00:16:44] Denise Andres: …Full conversation because you sort of…, it gets too, gets too hard, too difficult.
[00:16:50] Kate: Too much, yeah.
[00:16:50] Denise Andres: So it’s just little bits at a time. And then doing the wills and your advanced health directive. Doing all of that sort of brings up a little bit more…,
[00:16:59] Kate: Mm-hmm.
[00:16:59] Denise Andres: …Conversation about it. So yeah, that helped. But just little bits at a time, is my advice.
[00:17:04] Kate: Yeah. And that’s some beautiful advice. And sometimes it is…, we, here at the Leukaemia Foundation, we can help guide those conversations. But also the social workers and things like that at the hospital are also able to help support some of those conversations in regards to advanced healthcare directives and things like power of attorneys as well. And…,
[00:17:25] Denise Andres: Yeah.
[00:17:25] Kate: …You were mentioning that it began once he came into hospital, he passed is it…, was it within four days? Is that what you said?
[00:17:33] Denise Andres: Yes. Yeah.
[00:17:34] Kate: Yeah. How did you treat that time? Did you allow people to come visit him? Did you just keep it wholly and solely for yourselves or…?
[00:17:43] Denise Andres: Yeah, no, he had visitors come, family, friends, the first couple of days because he was quite delirious when he went into hospital. So, I found out calcium leaks into the brain, so it makes them delirious.
[00:17:59] Kate: Mm-hmm.
[00:17:59] Denise Andres: So, I wasn’t there at the time ’cause that was overnight, and apparently he just wanted to jump out of the bed and wanted to call the police on the nurses and things. And that’s what happens when you’re delirious and you don’t know where you are. So then I stayed with him the next day, and I just brought him blankets from home, and he just thought there was knocks on the door, and he thought he was at home.
[00:18:24] Kate: Mm-hmm.
[00:18:24] Denise Andres: So there were little times where he would wake up briefly and, he said, ‘I love you’ to me, were his only words in those poor days, which I just, yeah, completely cherished. But the rest of the time he was just laying in bed. So family came. And I knew… I think we had spoken about…, or I just knew that he just wanted to pass, just him and I. So I would sleep in hospital, and when…,
[00:18:49] Kate: Mm-hmm.
[00:18:49] Denise Andres: …Family were there, I would go home, feed the cat, come back. So the family came on the last day, and then we watched a program that we always watch together…, um Pawn Stars. It’s P-A-W-N.
[00:19:04] Kate: Yes, it’s about auction. Yeah it’s about…
[00:19:07] Denise Andres: So, put that on and fell asleep. And then I just jolted upright, and it was like eleven past one and he had passed. So, before he passed, actually, I said to him, ‘Please gimme a sign that you’re okay when you cross over.’ And then the dawn of that morning, he’d passed, I went outside, and there was a shooting star, and it was the most beautiful shooting star I’d ever seen. Like it was red, blue, white, and I was like, yep, that’s my confirmation.
[00:19:41] Kate: Oh.
[00:19:41] Denise Andres: And it was just so beautiful.
[00:19:43] Kate: Wow. That is incredible.
[00:19:45] Denise Andres: Yeah.
[00:19:45] Kate: Well, they say ‘Signs a wink from heaven’ and…,
[00:19:49] Denise Andres: Yeah.
[00:19:49] Kate: …That’s their way of still communicating.
[00:19:52] Denise Andres: Yeah, it was very beautiful.
[00:19:54] Kate: Did you say you woke at 1:11? Is that what you woke?
[00:19:57] Denise Andres: Yeah. I’d bolted upright. A couple of minutes afterwards, and I sat upright and went, ‘Yeah’. That’s when he passed…, well a few minutes beforehand.
[00:20:05] Kate: And then that…, they do say all the ones are the angel numbers, so…
[00:20:10] Denise Andres: Yes.
[00:20:10] Kate: Don’t they?
[00:20:11] Denise Andres: Yeah, they do.
[00:20:12] Kate: Mmm. Did you call the nurses in straight away, or did you just have a moment with him?
[00:20:17] Denise Andres: I was sort of shocked. So yeah, I called the nurses straight away.
[00:20:21] Kate: Yeah.
[00:20:21] Denise Andres: And then I called his nephew. He had come, like a few hours before, and he was just on his way home. And…,
[00:20:21] Kate: Mmm.
[00:20:28] Denise Andres: So I called him to come back and, yeah, we just stayed with him after that, yeah.
[00:20:33] Kate: Yeah. And I know that it wouldn’t have been an easy step walking out of that hospital without him, you know, on that last time. And to know that, that was it. How was that moment for you of leaving the hospital?
[00:20:49] Denise Andres: It was bittersweet because I knew he was out of pain. And that was my driving force through it all because it is…, he was just in so much pain, but there was no amount of OxyContin that could relieve his pain.
[00:21:01] Kate: Yeah.
[00:21:02] Denise Andres: Yeah, I mean it’s the toughest thing you can do because when I took him to hospital, you always have that hope that he’s coming out. But deep down, I just knew this was, this is it. So, yeah, it’s tough. And then coming home to an empty house and seeing his chair there and, and then all of a sudden, you don’t have to think about setting up his tablets and hospital appointments and specialist appointments. It was…,
[00:21:30] Kate: Mm-hmm.
[00:21:30] Denise Andres: Yeah, it was tough, but then it just rolled into funeral arrangements. So it was just quick. There was always something. And then it’s…, once the funeral’s finished, then everything stops, you know? And then that’s the hardest part is when everything stops.
[00:21:43] Kate: Mm. And what did you do during that time?
[00:21:47] Denise Andres: When everything stopped, you’ve gotta sit with yourself a lot and just cry. Just whatever emotion comes up, and you just go through the emotion. I took solace in going to the beach, and then a month later, we scattered his ashes on the beach. So every day, I just went there and…, that just to be with him, and…,
[00:22:09] Kate: Mmm.
[00:22:09] Denise Andres: I would throw in a crystal just to…, you know, that was just my way of trying to release and,
[00:22:13] Kate: Your ritual.
[00:22:13] Denise Andres: You know, I’d cry…, My ritual, yeah. I would cry on the beach.
[00:22:17] Kate: Mmm.
[00:22:17] Denise Andres: Yeah, just be there with him, and that was my comfort.
[00:22:21] Kate: Yeah, and you’re so right. It is…, you do have to feel those emotions because I know sometimes when people, they do lose a loved one, they don’t get those moments, life still has to go…,
[00:22:32] Denise Andres: Yes, yeah.
[00:22:32] Kate: …You know, 10 force, I have to get back to work or whatnot. But it is important to find those moments that you can release. And it can be, I mean, I haven’t lost a partner, but I can envision, I’ve had people close to me that have that it can almost feel like if I let my wall down and I break, that, that will be it.
[00:22:52] Denise Andres: Yeah.
[00:22:52] Kate: That I won’t be able to put myself back together. But it’s almost like just letting a little bit of water out of the bucket, so it…,
[00:22:58] Denise Andres: Yeah.
[00:22:59] Kate: …Doesn’t overflow and cause a bigger flood.
[00:23:00] Denise Andres: Yeah, absolutely. And I had the best support team with my friends and family. They would always, they would get me outta the house. I just, I felt like I needed to just leave and do things because for five years, I had to say no to everything. I couldn’t leave him…,
[00:23:18] Kate: Yes, so very true.
[00:23:19] Denise Andres: …Leave him really on his own very often. So even going and doing the groceries was, you know, always in the back of your mind it’s, has he fallen, has something happened? So there’s never any…, there’s never any downtime, and people always say, you know, ‘You need to look after yourself.’ Which is great to say, and I know that someone, or people that haven’t been in this situation, like he would say that…,
[00:23:44] Kate: Mmm.
[00:23:44] Denise Andres: But it’s very hard to find that and to do be able to do it.
[00:23:47] Kate: The reality of that, it’s like when people say to new mothers, well, ‘You just sleep when the baby sleeps.’
[00:23:53] Denise Andres: Yes.
[00:23:53] Kate: …, and it’s not helpful. ‘Cause it doesn’t work and it doesn’t always align. And it’s…,
[00:23:53] Denise Andres: Yeah.
[00:23:58] Kate: And I’m sure you would’ve heard also a number of silly comments. Well, not silly, but potentially silly, but you know, some comments that are handed…,
[00:24:07] Denise Andres: But they mean well.
[00:24:08] Kate: But they mean well, thank you. That, that have happened to you post losing Jacob as well, right? I’m sure you would’ve heard some doozies as well.
[00:24:18] Denise Andres: Mmm yep, yeah, I sure have. And then COVID hit, and it was sort of like a little bit of relief that we had to stay home, that I didn’t have to say no to things, and not go out.
[00:24:25] Kate: Mm-hmm.
[00:24:27] Denise Andres: Scary at the same time.
[00:24:28] Kate: And to preserve your energy as well.
[00:24:32] Denise Andres: Yes.
[00:24:32] Kate: And being locked at home, sometimes we did have lockdowns here in Queensland. Was that difficult being alone? ‘Cause you’ve obviously lived with him for such a long period of time, but then to be locked in and be alone and not have him there.
[00:24:46] Denise Andres: No, because he was playing Grand Theft Auto a lot,
[00:24:50] Kate: Yeah.
[00:24:50] Denise Andres: No, it wasn’t difficult. It was difficult sort of going out and doing the groceries and things ’cause I just would never be able to forgive myself if I brought something home, because he would not have been able to…,
[00:25:01] Kate: Yeah.
[00:25:01] Denise Andres: …To cope with that. His immune system was, yeah, not good. So that was scary, and just not being able to… or feel that I could see people,
[00:25:12] Kate: Mm-hmm.
[00:25:12] Denise Andres: …See my friends and family as well.
[00:25:15] Kate: Yeah.
[00:25:16] Denise Andres: Yeah, it was hard.
[00:25:18] Kate: And have you needed to seek any mental health support or any support counselling or from a psychologist during this period of time? Or you had a great support network?
[00:25:29] Denise Andres: I did have a great support network, but I did phone Carers’ Gateway. They helped me immensely…,
[00:25:36] Kate: Mm-hmmm.
[00:25:36] Denise Andres: …The last couple of months, just to be able to find some peace within myself…,
[00:25:41] Kate: Mm-hmm.
[00:25:42] Denise Andres: …And just compartmentalise and just, even while I’m at home, just sort of do me a little bit.
[00:25:48] Kate: Mm-hmm.
[00:25:50] Denise Andres: Rather than trying to organise everything for, for Jacob.
[00:25:52] Kate: Yeah, and give yourself that permission as well.
[00:25:55] Denise Andres: Yes.
[00:25:56] Kate: And how have you been now? So you said…, are we heading into year four, or are we in year four?
[00:26:02] Denise Andres: We’re heading in, 28th of July.
[00:26:05] Kate: 28th of July.
[00:26:08] Denise Andres: Yes.
[00:26:08] Kate: And you know, sometimes people describe the first year as a living hell and then…
[00:26:12] Denise Andres: Yes.
[00:26:12] Kate: …Other people go, ‘Well, it’s year two.’ How have these past couple of years been for you?
[00:26:18] Denise Andres: Yeah, I agree. The first year, especially with all the firsts. The first birthdays without him, Christmases and things. I also just said yes to everything, whatever my friends suggested. I was like, ‘Yes’, I need to do it even if I didn’t feel like I wanted to do it. Like I said, yes to going away, going and seeing concerts and just anything, just to be able to say yes. ‘Cause for five years I’ve had to say pretty much no to a lot of things.
[00:26:46] Kate: Mm-hmm.
[00:26:46] Denise Andres: So it helped me just be out in the world. For starters, out of my, my house, the first time I actually went out at night, because I very rarely went out at night. It was…, I went to the pub and had a few drinks, and it was just overstimulation. I was like, ‘What am I doing? Oh my gosh.’ It was, it was a lot. So it took a good year to get back out socially amongst everybody.
[00:27:11] Kate: Yeah.
[00:27:13] Denise Andres: And yeah, try and live.
[00:27:14] Kate: Yeah. You know, you mentioned that it is, it’s that big scary moment of stepping back into the world and being overstimulated because your world is so very different. You know…,
[00:27:23] Denise Andres: Yes.
[00:27:23] Kate: When you are going through hospitals and appointments and caring for someone, or even treatment, to then step back into life, you go, ‘Oh, it’s a different pace.’ And it’s a different,
[00:27:32] Denise Andres: Yeah.
[00:27:32] Kate: It’s different vibration almost, that you need to run in.
[00:27:36] Denise Andres: Yes, absolutely. Yes. It was tough.
[00:27:41] Kate: Yeah, I was gonna ask, did you find it beneficial to say yes to everything? Or in hindsight, do you go, ‘Oh, I wish I capped it down a little bit. ‘Cause did you burn out at all at any point or?
[00:27:51] Denise Andres: It was beneficial, but, I wasn’t wholly present, if that makes sense.
[00:27:58] Kate: Mm-hmm.
[00:27:58] Denise Andres: Like I was excited to go, but I wasn’t excited to go. I just…,
[00:28:03] Kate: Yeah.
[00:28:04] Denise Andres: …It was a tug of war internally, all the time.
[00:28:07] Kate: They do say that about grief, and it’s the things that I’ve experienced that you are always constantly holding two emotions. I mean, correct me if this wasn’t your experience, but you’ve got the joy of almost going and the excitement, but then also the grief of going, ‘whew’.
[00:28:24] Denise Andres: Yeah.
[00:28:24] Kate: But I’ve got all this trauma that I’ve been through, or I’m missing my person, or they’re feeling sad as well that they’re not here, and things like that. So it’s a constant pull between two very different emotions.
[00:28:37] Denise Andres: Yeah, absolutely it is. And it’s hard talking to people that haven’t been through it. So it’s nice when you sort of meet a person that has, that you can sort of connect, and they understand like every aspect of it all.
[00:28:53] Kate: Absolutely. And did you find people, you know, being a young widow, there’s, generally in the community, there’s not many people think of a widow as, you know, somebody that’s in their eighties or nineties who’s lost their partner. But did you come into contact with many people your age that had lost somebody?
[00:29:10] Denise Andres: Not a lot. I was already a part of a Facebook group, multiple myeloma facebook group. So that helped a lot…, but it…, no, it was just a lot of trying to deal with it on your own and reading things…, like things would just pop up like on Facebook or just come into your hands…,
[00:29:27] Kate: Mm-hmm.
[00:29:27] Denise Andres: …At the right time, that sort of spoke…,
[00:29:29] Kate: Yeah.
[00:29:30] Denise Andres: …To me, and I needed at the time…,
[00:29:32] Kate: Mm-hmm.
[00:29:32] Denise Andres: …Yeah, to help me through it.
[00:29:34] Kate: Yeah. And you mentioned that you were a nail tech when he was first diagnosed, but now that isn’t…, not your chosen path of career.
[00:29:44] Denise Andres: No.
[00:29:44] Kate: Did you say you’re an EN? Is that what you are now?
[00:29:47] Denise Andres: AIN, Assistant In Nursing.
[00:29:49] Kate: Assistant in nursing, I’m sorry. And it was that you mentioned that was sparked from that did you undertake that training after Jacob had passed?
[00:29:58] Denise Andres: Yeah, so I’ve been doing this now for two years. So two and a half years ago, I started my course, which was six months. And I didn’t know I wanted a change. I didn’t know what I wanted to do, but sort of being…,
[00:30:12] Kate: Yeah.
[00:30:12] Denise Andres: …In the caring field and it sort of all just fell in my lap, and, I love it. I’m caring for dementia patients and high falls risk patients. I find it tough to be in the oncology ward.
[00:30:23] Kate: Mm-hmm.
[00:30:23] Denise Andres: It just brings up a little bit too much at the moment. But…,
[00:30:27] Kate: Yeah.
[00:30:28] Denise Andres: I’d love being there with the families in the oncology ward.
[00:30:30] Kate: Mm-hmm.
[00:30:31] Denise Andres: As well as of course, the patients. But just to know that I’ve been through that…, just to console them, support them.
[00:30:38] Kate: Yeah, and you’ve walked that path before.
[00:30:41] Denise Andres: Yeah.
[00:30:42] Kate: And you know that journey and that fear all too well, unfortunately, and I would envision has being, you know, you mentioned absolutely caring for people that are going through a haematology or a solid tumor journey, I have no doubt would be triggering, but has there been elements of it and in care that’s also been healing as well for you?
[00:31:02] Denise Andres: Yeah, absolutely. Even in the oncology ward, it has been healing because I’ve been able to reflect on everything that I went through, and knowing that the families are going through the same thing, and I can talk about it, it heals me to talk about it and try and help other people.
[00:31:19] Kate: Mm-hmm.
[00:31:21] Denise Andres: That’s how I get my healing from it.
[00:31:23] Kate: Yeah, yeah. And how do you, in the past four years since Jacob’s left, is there a way that you and your network, you honour him? Or do you encourage people to talk about him and share stories or say his name? Because I know there’s other people that I’ve spoken to and they’ve been on this podcast that have said, they’ve had it times where their loved one has passed, and then people stop bringing them up to that person.
[00:31:49] Denise Andres: Yeah. No, no. All of us openly discuss him, and yeah, talk about stories. Yeah, no, his family are fantastic. Like they still embrace me and invite me to functions and things, and then we, we talk about him and…,
[00:32:06] Kate: Mmm.
[00:32:07] Denise Andres: Yeah, celebrate him. And then on his anniversary, I…, I go to the beach and…, just me.
[00:32:13] Kate: Mm-hmm.
[00:32:13] Denise Andres: Like, I like be alone and just be with him.
[00:32:16] Kate: Yeah. Have that time with him.
[00:32:17] Denise Andres: But I still get lots of support from everyone, yeah.
[00:32:21] Kate: And have you thought of connecting with, you know, or moving forward like connecting with a partner, or have you had any other partners come into your life, or that’s not something that you are at that point yet?
[00:32:34] Denise Andres: I have, I’ve had partners, but nothing substantial or, you know, long term…,
[00:32:40] Kate: Yeah.
[00:32:40] Denise Andres: …Or anything. I’m still processing a lot of emotions and, yeah, I don’t want anyone. I’m enjoying being on my own at the moment.
[00:32:51] Kate: Yeah.
[00:32:51] Denise Andres: But I do have lots of male friends, you know, that you can chat to and things, but, no. If someone comes in, someone comes in, I’m not, I’m not there…,
[00:33:00] Kate: Yes.
[00:33:01] Denise Andres: … Looking for the next love or anything, yeah.
[00:33:03] Kate: It is a really different space to enter into a relationship. You know, once you’ve become widowed or lost someone because your love hasn’t ended because your person…,
[00:33:14] Denise Andres: No.
[00:33:15] Kate: …Is no longer here. It’s not like a divorce where that relationship has broken down. Yours was taken from you, not chosen…,
[00:33:22] Denise Andres: Yes.
[00:33:23] Kate: …Not a choice. So it is that love…, you still carry that love into your next relationship.
[00:33:28] Denise Andres: Yeah.
[00:33:29] Kate: And they’re almost like an invisible third person, aren’t they?
[00:33:32] Denise Andres: Yeah, yeah, exactly. And what really hit hard was, I asked my solicitor, like, do I have to go through a divorce or how does it work now? Because no one’s…,
[00:33:44] Kate: Yeah.
[00:33:44] Denise Andres: …Spoken about this, so I have no idea. And he is like, ‘No, once they pass, your marriage is dissolved.’ And it was like, wow, okay. Yeah, that was very difficult. ‘Cause like you said, there’s no divorce proceedings, there’s no…, nothing to sort of finalise things and that really hit home.
[00:34:04] Kate: Yeah, it would’ve been…, can I ask if for you, I am assuming…, it didn’t feel dissolved, because it’s still, I’m sure he’s still at that point, and it still is very much, is…
[00:34:16] Denise Andres: Yes.
[00:34:16] Kate: He still very much is here. He still very much was there at that point in time and, yeah.
[00:34:21] Denise Andres: Yeah, because you’re still like ‘my husband, my husband.’ Whereas if you’re divorced, it’s ‘ex-husband, ex-husband’, you know…
[00:34:28] Kate: Mmm.
[00:34:28] Denise Andres: It’s…, you refer to them, you, you’ve got that line.
[00:34:31] Kate: Mmm.
[00:34:31] Denise Andres: Yeah, no, that was difficult.
[00:34:34] Kate: And I think the heavy thing of grief as well, is that it really takes a lot. Like you know, you semi-conscious know that they’re right, they’re no longer here, but it’s almost like your brain has to align, come into a line to go, ‘Right? yeah, no, they’re not coming home’ or ‘They have passed’ or…,
[00:34:52] Denise Andres: Yeah.
[00:34:52] Kate: It can take a lot to almost recalibrate yourself.
[00:34:55] Denise Andres: Yeah, exactly that. Yeah, that’s a good point. That did take a long time, that I just had to think for myself that I didn’t have to think for somebody else that took a very, very long time.
[00:35:06] Kate: Yeah. How did you work through that? Was it almost just I don’t wanna say practice, but it was just moving through life?
[00:35:14] Denise Andres: Just time, ‘cause every time…,
[00:35:15] Kate: Mmm.
[00:35:15] Denise Andres: … ,I was like, ‘Oh no, I have to go home’. And then I’m like, ‘No, no, I don’t need to be at home anymore’. Like I can stay out…,
[00:35:23] Kate: Mmm.
[00:35:24] Denise Andres: Or I can go and do whatever.
[00:35:26] Kate: Yeah.
[00:35:26] Denise Andres: Yeah, that took a, a long time.
[00:35:28] Kate: A long time, yeah. And you know, I am aware that we’ve been talking for a bit, and you know, throughout each episode we always ask people if there is any words of wisdom or golden nuggets they’d like to share with the listeners. So you’ve said some really lovely and powerful things through this episode that I think will really resonate with a lot of people. But is there anything that you would say to someone that’s sitting newly in your position or a couple of years post, like yourself, or someone that’s heading into this new normal?
[00:36:02] Denise Andres: Yes, I would like to say to just tell your partner as much as you can, ‘I love you’.
[00:36:10] Kate: Mm-hmm.
[00:36:11] Denise Andres: And any important information that you wanna share with them, because you just never know from one, one minute to the next, like they’re incomprehensible and you, you can’t say it anymore.
[00:36:23] Kate: Yeah.
[00:36:24] Denise Andres: So I wish, I wish, I had have…, yeah, had that chance to just tell him things and tell him ‘I love you’.
[00:36:30] Kate: Mm-hmm.
[00:36:31] Denise Andres: I say that to everybody. And I do that now to everyone.
[00:36:34] Kate: Yeah.
[00:36:35] Denise Andres: I say, ‘I love you’. ‘Cause you never know.
[00:36:38] Kate: You never know, do you? And I always say that, we don’t always get guaranteed…, and you know, Jacob is that story that we don’t always get guaranteed we’re gonna live until we’re 80 and die silently in bed.
[00:36:49] Denise Andres: Yes.
[00:36:50] Kate: And we’re gonna have lived a fulfilled life. And the one thing I know in life, and the one thing we are guaranteed in life, is that we will pass at some point, and the thing that we know is that time is borrowed and it’s never promised.
[00:37:02] Denise Andres: Yes.
[00:37:03] Kate: And I think that that is really fitting to what you’re saying, is you’d never live. And you don’t live a day without having something unsaid
[00:37:11] Denise Andres: Yeah.
[00:37:12] Kate: Because you just never know, mmm.
[00:37:12] Denise Andres: Yes, and life’s too short. So when you pass, life’s too short. Like do what you want, when you want, when you can…,
[00:37:19] Kate: Mm-hmm.
[00:37:20] Denise Andres: …And build memories.
[00:37:21] Kate: You said, say ‘yes’ as well. You…,
[00:37:24] Denise Andres: Yes.
[00:37:24] Kate: …Said yes a lot of times it sounds like.
[00:37:26] Denise Andres: Yes. Even if you don’t feel like it, say yes and get out there and do it.
[00:37:30] Kate: Mm-hmm, yeah.
[00:37:32] Denise Andres: Yeah, you’ll look back on it and go, ‘I’m glad I did it, even though at the time I wasn’t completely feeling it.’
[00:37:37] Kate: Yeah, yeah. Anything else? I think you’ve said some beautiful things, but is there anything else?
[00:37:43] Denise Andres: Just to talk about the hard things like we’ve said, just talk about, you know, the wills. Yeah, how the end of life…, they would like it to look like, and talk about those hard conversations, even if it’s in little bits. It’s just extremely important.
[00:37:59] Kate: Yeah, absolutely. That’s some really sound advice. I can’t thank you enough for sharing your story and also Jacob’s story. It’s not, you know, he’s a part of this too, and he forever will be. And, I…, unfortunately, this is an experience that some people who are diagnosed with a blood cancer that they will experience, and their loved ones will walk this path that you’ve walked as well. So I thank you for opening up and sharing the story, and how you have made it through the past four years, because, well, and even before that, because it’s not an easy road.
[00:38:32] Denise Andres: Thank you.
[00:38:34] Kate: My pleasure. And it’s one that I’m sure you never envisioned you’d walk on without him, you know?
[00:38:38] Denise Andres: No, no, absolutely not, and thank you so much that I’m able to share my story, and I hope that it touches one person, at least, that I can help.
[00:38:49] Kate: Absolutely. I think your resilience and your ability to say yes and show up for yourself post his passing is incredible because it is not easy. And I…, you know, I’m sure there were days that you went, I’m actually just gonna stay in bed, but there was a lot of times you said yes to…,
[00:39:13] Denise Andres: Oh, yeah.
[00:39:09] Kate: And that I’m sure is where it’s placed you in today.
[00:39:13] Denise Andres: Yes, absolutely. Yeah. There’s a lot of days that I went, ‘I can’t do this’, but…,
[00:39:17] Kate: Mmm.
[00:39:18] Denise Andres: You pull your socks up, and you do.
[00:39:21] Kate: Yeah. Well, you’re an incredibly strong person. I know this wasn’t your choice, but you’ve risen to the challenge and the card that’s been presented. But I thank you again.
[00:39:29] Denise Andres: Thank you so much. Thanks, Kate.[00:39:31] Kate: My pleasure.