Journey of Love and Loss: Niomi's Palliative Care Story

Join us on an emotional and heartfelt journey as we delve into the extraordinary life of Niomi, a devoted wife who cared for her beloved husband Graham throughout his battle with bowel cancer. In this gripping podcast episode, we explore the profound impact of their journey, from the diagnosis to the difficult decision of pursuing palliative care, and ultimately, the heartbreaking loss.

Niomi's unwavering dedication and strength shine through as she shares the intimate details of her role as an unpaid carer, providing a rare glimpse into the daily challenges and triumphs faced by those caring for loved ones in palliative care. With vulnerability and grace, she takes us through the rollercoaster of emotions experienced during this arduous journey, shedding light on the incredible resilience of the human spirit.

As we listen to Niomi's story, we witness the depths of love and the unbreakable bond between soulmates. She recounts the precious moments, the bittersweet memories, and the profound conversations she shared with Graham, whose unwavering spirit and courage continue to inspire her.

Through Niomi's candid reflections, we explore the complexities of grief and the healing process that follows. We gain insights into the ways she has coped with her loss, finding solace and support from various resources. Her story serves as a beacon of hope for others who have experienced loss, reminding us all of the resilience of the human spirit.

This podcast offers a unique opportunity to learn about the realities of palliative care, fostering a deeper understanding and empathy for those facing similar journeys. We honor Graham’s memory by raising awareness about bowel cancer and the importance of early detection and support for patients and their caregivers.

Prepare to be moved and inspired as you listen to "Journey of Love and Loss: Niomi's Palliative Care Story." Together, we explore the depths of love, the resilience of the human spirit, and the power of sharing our stories to heal and support others.

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Transcript

Lewis  0:00  
Hi everyone. Welcome to this episode of carers voices. My name is Lewis. Today I'm joined with Cheryl Murray my co host, and Naomi, Naomi, thank you so much for coming down here today and joining us in this in this weather. Would you be able to introduce yourself and who it was that you cared for?

Niomi  0:16  
 Sure. My name is Niomi Nichol and I cared for my husband graham.

Lewis  0:21  
Okay, can you tell us a little bit more about Graham?

Niomi  0:24  
Yeah, so Graham was incredible. A Graham was diagnosed with bowel cancer in February 2021. With stage two Bowel cancer, he attended in Edinburgh for radiotherapy and everything. But in August of 2021, he was told that he was terminal. And in January of last year, we were told that they were measuring his life and weeks. So it was a bit of a journey. But Graham was he was a quality manager for Arla for UK and Europe, absolutely loved his job. He was really passionate about what he did. And he was part of the team that developed Lockerbie cheddar, so he just, yeah, he was just passionate about like, he loved life.

Lewis  1:12  
That's great. Thank you. How long? How long were you with with your husband?

Niomi  1:17  
I was with Graham for five years, and but we're only married for nine months. So yeah, it was short, but sweet.

Lewis  1:24  
Yeah, yeah. And what was the what was that journey like with with Graham, once, once you found out that you had bowel cancer? So did when did your caring role come more into play?

Niomi  1:39  
I would say it was quite quick, because so it was diagnosed in February. And in the May, he started radiotherapy in Edinburgh. And very, very early on, I didn't recognize that I was a caring role. Then it was just I was just his wife taking him to Edinburgh. So it he went to Edinburgh on a Monday, and he came home on a Friday. So I would drive him up on the Monday, I would stay with him on Monday night at work from so he was in a hostel kind of flat in Edinburgh. And I would work from there until about 10 o'clock that night. And then I would get up the following morning and drive back down to Dumfries where I worked at the time. And then on the Thursday night, I would drive back up again work from there on the Thursday night, take him to his final radiotherapy on the Friday morning and drive back home. But he he was the physical impact of the radiotherapy from very early on, as well as the fact that is his bowel cancer affected how we could sit and what we could do for periods of time. That mean that like it wasn't Graham, never had to manage medication or anything in his life, you know, so, and I worked in health and social care. So I managed this medication made sure, he attended appointments and probably from week two of radiotherapy, we were making mad dashes to hospitals and phoning ambulances and things. So it was quite quick.

Cheryl  3:09  
Was that just the effects of things radiotherapy. 

Yeah, so the radiotherapy made him really poorly, but because it was so targeted to something that was so close. So grahams, cancer sat really, really close to the outside of his body, and but it was that sitting position as well. So it was it just had such a strong impact. And it was really, really painful. And it made him quit poorly. So yeah, it was it was tough. It was a rough ride. It was getting had chemotherapy at the same time. So it was battling the two of them and the sickness from one and the pain from the other. So it was yeah, it was a rough ride, right? Pretty much from early on. But he then despite the fact that you had that rough ride early on, once he decided so we got married in February 22. And he decided that after that first really bad he went for back reading for chemo thing to try and extend his life and it was brutal. And he did one and he decided no more. Last summer graham to summer that you would think was like you think there was nothing wrong with them. So the care and role really changed through the whole thing went from being totally hands on to being pretty much hands off but constantly worried about things, too. Then at the end. It was me it was just me and I stopped work. I did flexible working for a while and then I stopped work to be able to care for him.

And was your work with the whole time

Niomi  4:39  
work were great, who? Absolutely incredible. I can't fault like this just was so nervous to speak to them because I'd come from toxic before. But the whole way through. My manager was so supportive of everything that I needed to do to be there for Graham. Now I started I Started at TSDG, just after Graham had been told it was terminal, they could so easily have said, No, we need that commitment. It's a full time employment. But they were just incredibly supportive from the very, very beginning. And when it came to the point that I had to work flexibly or worked with them to be able to figure out when where was going to be the right place for me, but it eventually took for Claire to go do you not think maybe you need to take some more time it was they made the move not me. So they were amazing. 

Lewis  5:33  
Yeah, that's great. I suppose being in that situation being fairly, new you'd be scared to ask a question but that's great that the people in the organization sort of made that decision for you and gave you that

Niomi  5:46  
they have been absolutely amazing and even since Graham's died  they did recognize that the caring role doesn't stop me kind of it takes a long time to get out of that mindset and that you need that time to work it through. 

Lewis  5:59  
That's great. So what what kind of things have they done after that then as you just said, the caring role doesn't stop there. Do they give you extra time? 

Niomi  6:10  
So yeah, I mean, pretty much whatever time I needed even mean let's face it, the practicalities of taking time off after somebody's passed away you know there's always a time limit on what financially that looks like but they worked with me to be able to work things like all of my entitlements all of my holidays time off you know they dug into everything that I could possibly access and eventually the you know, the financial implications it can come then comes down to me Do I go back to work or Or what happens but there was never anything from them that said, you must  right now you've you need to figure this I remember Claire question and whether it was the right time for me back because Graham had only been gone eight weeks when I went back to work. But she was she'd never, you know, she just trusted my judgment. And but they never pushed me. Never ever pushed me. And she's tied in with me so much since I've been back. And even this morning, I was just saying to  Cheryl  I've had such an emotional week. And I sat when I went in this morning Claire wasn't at her  desk. It's gonna I was sat at mine. She was like, how are you? Fine. She went what's happening. And she just knew that I needed that chat. So they have been incredible. They've they've given me the time they've given me just basically everything I've needed that support from from day dot.

Cheryl  7:39  
But you returned to work was that? Did you feel ready to return to work?

Speaker 2  7:43  
a did. But I probably shouldn't have trusted my own judgment. I, I felt that I needed to get back because I'd gone from I've done the kind of mourning. So I talk about mourning and grief as two different things. I've done the kind of mourning I've done they're absolutely depths of I can't live my life without this man. And I've moved into grief. And then kind of around about Christmas time I feel I was going back into mourning  I was like I need to do something life I need to be proactive work had been my sanctuary. When, Graham was sick. So I needed a felt I needed to get back into work. And in hindsight, I kind of went back in the January and by the February of last year, I really wasn't 100% cut out for this. What they've been patient with me. And they've given me the time, and they've given me just the support that I've needed to get to the point that I'm now for the last couple of months have absolutely been 100%. So yeah, it was it was probably a point that I should have listened to other people. One of my closest friends is also my colleague. And she questioned that all along. I clearly questioned it. But I was adamant I was coming back.

Cheryl  9:00  
Because that felt right for you to do at the time.

Niomi  9:03  
It did. I mean, I don't regret coming back. I'm really grateful that I had a supportive network of work. And if I hadn't have had such a supportive network of work that could have gone so definitely, you know, I decided to come back but potentially if I hadn't have had Claire and Jane and Norma and Natalie and everybody else kind of going you know, what do you need from us? I could really easily have gone back off. But they just made the whole return. So you easy.

Cheryl  9:33  
 that's good that you have to support.

Lewis  9:35  
It was Yeah, I can't fault  Anybody that's been a part of that journey with me has been incredible.

Cheryl  9:41  
And how did you find going to like, I presume there will be lots of hospital appointments and things like that. How did you find them?

Niomi  9:49  
So when Graham was very first diagnosed, he was just post COVID So Graham found out he had cancer on his own. I remember him getting back into the car. It was the fourth February 2021 World Cancer Day, believe it or not, and he just his friend's wife had been the person. So Fiona Darroch had been the, the person to do the scan, and has said, Look Graham, you got a road ahead of you. And I remember getting back into the car and he was like, Well,  I'm gonna be busy for the next five years? And I was like, just totally, I think had convinced myself that you maybe have a constipation or something. And that it was all going to be okay. But yeah, he was. So the first few appointments, I wasn't allowed at. And then radiotherapy, I wasn't allowed to support him to any of that, that five weeks in Edinburgh, I wasn't allowed to be a part of that I wasn't allowed to support him to it. I wasn't allowed to hold his hand when he was terrified. So that was really, really hard.

Cheryl  10:56  
So you could only be at the hostal?  waiting on him coming back?

Niomi  10:59  
Yeah, I could drop them off at the hospital. That's all I could do. But the the appointments after that they were I don't know, they were strange. I was a part of them. But there was no consistency in the the person you saw. So there wasn't that kind of continuity. Yeah, so that was quite difficult. But I was just grateful to be able to be there and ask the questions, because Graham would Graham was the type of person that would come away and then go, I should have said, so we could hammer eight questions, and I could see him sometimes it would nudge me and go shut up, stop asking so many questions. But all of those questions helped us to build a better picture of what was happening. So yeah, they were always difficult because it felt as if we didn't every one we went to, it was bad news. Every time we went to one. It's always got worse when it's grown. You know, it's no, we're not going to be able to cure this it's stage four. And then in the January like I say it was we're measuring your life and weeks. And that totally took the wind from a sales because I went into that appointment and say to the female consultant. Can you have a word with him? Because he is utterly convinced that was his last Christmas. And I was ready for her to go. I can understand where you're coming from. But don't worry about it. but she went well, it probably was, you could have picked me up off the floor. Just I couldn't believe it. I just was we had been told that it was stage four, but it could probably be managed for a few years. But she was like, No, we're managing your life and weeks. And nobody had explained that but to us yet.

Cheryl  12:42  
So that feels like a drastic jump for you,

Niomi  12:44  
it did, because he'd we knew he was going to have more chemo, we knew he was going to need more chemo, we knew that it would always be managed with treatment. But we'd gone from probably five to seven years, you don't know. But you were going from looking at years to maintain at stage four, to then measuring life in weeks. And then we were really lucky. It wasn't weeks, we had months. But it was the most horrendous news. I'll never forget the day that I stood in front of him. And it was around about that Christmas that I stood in front of him and said I just losing is not an option. And he was like, you don't you're not gonna it's gonna be okay. And it's dark and graham was 20 years older than me. So I always knew there was always going to be a day that I just didn't think it would ever be then, but didn't think it would be so close. And then just a few weeks later, we'll be told that life was short, and we were engaged. We were going to be getting married in August of last year. And we pulled the wedding forward. And we planned the wedding of a lifetime. We'd have a weekend of wedding celebrations in three weeks. We just killed it altogether. And the people that made it happen were just the most amazing people in our photographer was She should be a wedding coordinator actually, she just pulled everything together and made it all happen and phenomenal people that provided services for free and make things happen. So yeah, it was that the appointments. The appointments were to know we were you just feel as if you never got a positive one. They just were always worse and worse and worse. But we were included in them. You know, we definitely were you know, we every decision along the way was grahams. Yeah, I remember even emember Barry Collins, one of the consultancy saying to Grahamm. A really wouldn't recommend another round of treatment and he was like, Well, I'm doing that. And he tried it and it was just too much for him. up, it absolutely was always his choice. So, yeah,

Speaker 1  15:04  
you're always supportive of his choices or was there a few you dis agreed with?

Niomi  15:08  
And I still think it's that I disagreed with any of his choices. I think he just sometimes.  Graham was a wait and see man. Like, let's just wait and see sometimes it was only when, these days that they were measuring life and weeks and they shouldn't maybe have another round of treatment and he went no I'm doing it. Quite often if he was poorly, and it would be me that go, I don't care what you say we're going to the hospital. But is its decisions around about his treatment. There were his decisions. I was gonna essentially I was going to be the one that was here afterwards. There weren't many decisions to make. But quite often would just take up the hospital against his wishes.

Cheryl  16:05  
And was that to easy your mind sometimes?

Niomi  16:07  
No, it was normally because there was something wrong. I remember him lying on the on the bathroom floor. One day. I came home. I can't remember Id bought my wedding dress It was the day i bought my wedding dress. I came home and he was lying on the bathroom floor in agony. And I was like I'm phoninig an ambulance. No, no, it's fine. Just pass me the paracetalmol. I was like no no We're gonna phone an ambulance. it was nuts. My daughter was having her 16th birthday party upstairs. There's Kids raving up the stairs. That ambulance turned up and thought they'd been hoax called the most bizarre he was adamement he wasn't going to the hospital and ended up in hospital for 4 days. 

Lewis  16:49  
What was that for? 

Niomi  16:51  
So sepsis Graham was like, by the time Graham died, it was like sepsis nil Graham five. He battled sepsis five times. And he just but it seemed to be the one thing that kept coming back. It was just I guess I think that's just the nature of things like chemo that takes away your resilience, doesn't it?

Lewis  17:11  
I don't think paracetamol was going to cut that is it

Niomi  17:16  
 Well, not at all. He was writhing bless him

Cheryl  17:21  
was when he asked if he'd had any moments during your carer journey that would make you laugh, but I think you've just described one of them

Niomi  17:28  
there was loads. I mean, oh, my goodness, Graham had this thing where I mean, yes, it was bowel cancer. But it had this obsession with talking about poo with anyone that would listen.  And I remember would met his friends, friends of his art. My son plays football for saints and Kirkcudbright. And we were playing  at Gretna, and he met these friends of his. And he was like, how are you doing? And they were like, how are you keeping grim news? They were you know, I've got this growth and Arse  I was like, just swallow me up. I remember just walking away, and he just did he really did spill it all out to however would listen. And having my son Struan, Struan is not much of a talker. But he would come home from sschool and do the kinda so how's the arse growth going on. You know, there were just there was you had to, we had to laugh our way through it. Even in Graham's last days, I have videos on my phone of him walking up the hallway at home, with a zimmer frame dancing to Proud Mary Tina Turner with nothing on because he couldn't get dressed. He was so sore and so bloated with nothing that fitted down. And this was like five or six days before he died. And it was the first time we've walked in about a week and a half. And he's getting up the whole dancing to Proud Mary. Also when these last few days as well, I've got a video got videos, singing and I can't actually say it on video. You know, Beyonce's if I were a boy. And he reworded the boy bit. Okay, so yeah, I'll leave it to your imagination. There was there really was loads. He just his way of takling his cancer was humor. That was humor. It was

Cheryl  19:26  
just the way coping technique.

Niomi  19:27  
Yeah. Yeah. And he loved the attention of the nurses as well. There was a few kind of funny ones and amongst all as well, so yeah, no, it was it was definitely there was lots of laughs It was it was where it's as a couple it's,

Cheryl  19:45  
is that what you're like your family dynamic is always laughing  and joking. 

Niomi  19:48  
You've got to. You've absolutely got to with teenagers. You've got to 

Cheryl  19:55  
I get that

Niomi  19:55  
 when you've got a caring role that no matter how intense it is you know, like, I think whether your role is really into something that is low level, or whether it's related to something that's terminal, or whether it's related to something, that means you're picking up shopping for somebody, whatever it is, sometimes I think if I introduce my daughter's term  if we deep it too much, so easily ended up down that rabbit hole of how awful it is. And that was just, yeah. Some days, you've got to recognize it. And it's pants. And today's been one of those days recognizing that he's, he's not here. And as pants, and he's not coming back.  But if you sit in that position, you really struggle to pull yourself back out of that.

Cheryl  20:09  
Are you ok?

Niomi  20:26  
Yeah yeah I'm fine.  He just should be here shouldn't be having these conversations. So yeah.  But you know what, it was an honor.  Because I don't think I could have watched somebody else do that for him. 

Cheryl  21:11  
Yeah. If there's gonna be anybody it was going to be you.

Niomi  21:14  
Yeah, it had to be. I have such an ingrained memory of like, husband back end no wife should ever have. No one's husband or wife should ever have such a detailed image of their partner back end. But I have, and I'm glad that it was me that had that. And I'm glad it was me. That made sure that he had his cream on.

I'm glad it was me that made sure that he was bathed properly. I'm glad it was me that made sure in those last few weeks, that he had everything he needed. And on that last night that we got dressed and his favorite pajamas and, and all the rest of it and he leave with a smile on his face. I wouldn't put anybody else doing it. I just couldn't have and the other memories. Oh, hold on to

Cheryl  22:06  
DId you know that was going to be the last night?

Niomi  22:09  
No, no, no. So maybe other people did, but I didn't. The kids were going off to visit the dads for the week, the dad for the weekend. It was a little brother christening. And then on the Friday, Gra Graham had kind of stop responding around about the Wedensday.  The Driver was in and he just was so kind of bothered constantly. He was he was constantly kind of in a state of agitation. So it was quite heavily dropped from a waiting list. And the only thing you really got from him was about the grant or whatever, if he really agreed or disagreed or something you were saying. And on the Friday before the kids went to because the dad lives in Belfast, and before they went to the boat, we were sitting in their bedroom, and that was just the two kids and me and Graham. And they were just getting sick of it all, everybody wanted to make sure they were OK. So the folk are constantly saying to Struan ah you don't eat enough. You need to eat more come on Struan you need to eat more. And then he would have his dinner and he'd have crisps and yogurt. And we'd have something else and they go oh my god you never fill that boy.

And everytime somebody came to visit they got the kindness that day to your coat off, do you want a drink, take your jacket off your fine. And every time somebody new come in to the room, they told them to take the jacket off. So one of Grahams close friends Scott, every time he came to visit, about six different people told me take his jacket off, and it was six different people asked him if he wanted a cup of tea.

So we were setting laughing the kids and I about how they were just ready for a weekend. No, I having to liste to that. And Graham was laughing. So their last with Graham was him laughing and but when they went for the boat I was they said Will he still be here and I was of course he'll still be here. Because I was convinced he would still be there on Monday when they came home. And on the Saturday, Scott had the rep ball. And he had, I said to him just go to it you know, him and his wife were due to go to the ball and I was like go to just, you know, come and see us in the Sunday and you'll be absolutely fine he's not going anywhere. And even during the day I was pretty adamant he wasn't going anywhere. But around about four o'clock. He had started with that kind of rattle the gargle. And they'd started to administer medication to alleviate that. And I think about I don't know what time it would be at some point in the evening. I kept talking to poke him. Graham breathe, Graham breathe and he did he responded every time. But just about every few breaths your were having to okay Graham breathe and then At 12 minutes past 10, he didn't breathe and he just stopped.  And to this day I don't know if that any of the things that happened were normal. And I think that's my only regret, is that the support that's there for carers for end of life? That's really poor.

Cheryl  25:22  
 Right? 

Niomi  25:23  
Nobody ever taught me what was what I should expect. Nobody ever told me that would be a death rattle. Nobody told me that he would open his eyes and look at me. But that's not because he was desperate it was because that's what happens. Yeah. You know, nobody told me that. We had nobody there.  Marie Curie couldn't make it because there was no consultant to sign the prescription that they were due to bring. I didn't know what to expect. I didn't know the end was gonna be brutal. And it was traumatic. And I think that's the bit there's a bit missing from services, that tells people what that's gonna look like.

Cheryl  26:04  
Do you wish you had asked they questions looking back?

Niomi  26:06  
I did. But I did ask those questions. But nobody ever answered them. Yeah, like, I get that there's a need to protect what's going to happen? Yeah, I get that you can't always predict it. But for some carers for me, I needed to know what the worst case scenario would look like. I don't know if we got the worst case scenario. But for me, that was the worst, I wouldn't want anybody to have to go through that not knowing what was coming. It's the worst.  The things I had in my head that he would just stop breathing. And then at one point, you would breathe in, breathe out. And then he wouldn't take the next one. That wasn't the case at all.

And nobody prepares you for the fact that that's not the way it can happen. Nobody explains that actually. He might fight it erhm. Yeah. The worst thing to watch. I think anybody that loses somebody to watch somebody die,  is horrendous. But I think there's something that needs done to support carers to more to understand. This is what you need to prepare yourself for that actually, you need to consider the fact that, yes, you want to be there and of course, you'll be there. But it might not be easy to watch. Nobody ever says that. It doesn't matter how dramatic it is, it might be that they just don't take the next breath. But nobody ever says to you, that that might be really, really difficult. They're very much a kind of, he'll be a Peace, course he's at peace. But let's stop with the stereotype. And let's stop with the namby pamby stuff. We need to tell people what's coming. We need to tell people that's tough. We need to have real, honest conversations.

Cheryl  28:04  
To be more prepared,

Niomi  28:05  
I think there's a need to be prepared. But there's a you know, I've I started seeking counseling through relationship Scotland. And I don't think I'm on my own, needing trauma support after somebody's died. But we talk about anticipatory grief. But none of the none of the services that support palliative care, support, palliative support, anticipatory grief, that grief that starts when you find out somebody's dying, that grief that you find out when somebody with dementia is no longer the person you fell in love with, or the the none of the services within D&G, at least that I could find, supported, helping you to understand that trauma that was gonna come and the grief that was going to come, it was very much that you can't do that until that person's died. And even now, I can't receive counseling through any statutory services until games go on for six months. I have to access that through third sector, because six statutory services believe that you need to grieve first. So for that for six months, you've got a certain question. You've got to ask yourself those questions over and over again. Was that normal? Did he drown? Was that right? Because nobody's willing to have that conversation until they're gone for six months. That's a brutal thing to consider. 

Lewis  29:31  
I think thats a bit unfair considering you've been grieving before that. Yeah, no, you did. More than six months. Yeah. So in my mind, you've you've already grieved for six months. Yeah. So that seems really unfair. 

Niomi  29:44  
It's really tough thing. I think I have a place and I get it. I'm not professional there's maybe professional reasons for all of that. I think people need something really early on and that's what I'm really grateful for Relationships Scotland they have been incredible. I've had to stop it beacuse I wasn't ready, I don't think to just spend once a week every week crying, because that's what it became. I just went every week for a week for an hour and and cried at the lady that was visiting. And I think I need more time. Before I do that before I have structured grief. But there's definitely something missing there about. Those that know the end is coming how do we prepare them for the end coming.

Lewis  30:30  
So do you think that should be something in place before that they pass? And how soon in advance? Do you think obviously you've I suppose you can't really tell in some cases, but maybe when you start that journey, somebody could tell you,

Niomi  30:43  
I think when when think if you're on a palliative pathway, and I get the palliative can be anything, that palliative pathway starts from the moment you find out that that illness is not curable. But when you get to end a life, that needs to be something that's more than just the person is going through end of life. Because this sounds brutal it sounds absolutely brutal, but when that person reaches end of life, they don't have the after effects to sit and think about the people that are around them that do so think when that end of life pathway starts when anticipatory care plans are starting to be kicked into place when all those things start. There needs to be something there for the person that's doing that journey too and a lot of that comes to resource I get that it comes through resource. You know the Macmillan nurses there's two for the whole of Dumfries and Galloway. So they can't do the job that they want to be able to do support people like that. We need to we need to find that from somewhere. We need to give people that dignity, not just for the for the person dying, but for the person going through it with them and their family. And they're 

Cheryl  31:53  
The people that left behind?

Niomi  31:54  
Yeah, that I'm so grateful that my kids weren't there that weekend, because I can't imagine asking them to wait six months before they're allowed to talk about that with somebody if they'd have been there. So I think there's something missing there. But I don't want it to also take that away from the people that absolutely were because McMillan they did everything they possibly could. And the Marie Curie nurses that were there are night upon night, they were incredible Graham. So Graham had, so from the September he was the Alex unit, in and out of the Alex unit. And then he decided he'd always wanted to go and do our kind of splurge trip to London, top hotel, eating at the Ritz. And what else difficult wasn't just the Ritz it was it'll come to me by the Savoy, we did the Savoy, and they were amazing. The phoned us and they were like, What do you want to do? How do you want to do it? People went above and beyond to make that happen for him. And his consultant was just because I had so I was so concerned that was taking this man who was end of life to London, on a train. And she was like, You know what, if this is the thing that finishes him off, is it not better but this is the thing. So I can't remember the point I was making off we went to London. Yeah. On the way back from London. It was it was when the train stikes were happening. So we it was standing room only the whole way from London and Graham was exhausted, we phoned Marie Curie. And they were amazing. They were just like phone us when you get to Lockerbie we'll meet you in Kirkcudbright when you get home, and they did they met us in Kirkcudbright they helped Graham get in, they helped him to unpack what he needed. They helped him get his medication, get into bed, get a shower, everything that he needed. And they despite the fact that it wasn't always the same nurse, they built this rapport with him. And they were incredible. Just I couldn't fault them. They were amazing. So yeah, I could talk about him all day. We had amazing times. It doesn't matter that it was dying. We had amazing times. So yeah,

memories are they things to keep you going. 

Yeah, well, 100%  We, we didn't have a lifetime together. We should have. But we didn't. But the memories we made were far and above. Just we knew in that 18 months that they were the memories that were going to take me through life so we had to make the most of them so we went on holidays we took the kids away for the week. We went to London we did the massive splurge and he absolutely had the like He just loved it. Yeah, there's the things that will always stay with me, my wedding day. And those memories those those times that we had not even just away but you know, there's times are old and he loved to dance in the kitchen. I'll, hold on to them forever.

Cheryl  34:57  
So do you have any top tips or anything or what, what could you give to somebody else that's maybe at the start of the pilliative care journey, anything that you could recommend that they should try and do for themselves as a carer.

Niomi  35:11  
Remember, you can't do all! You can't do it all you want to do it all. You want to make everything okay? Of course you do. But you can't, can't do it on your own. You've got to reach out to people, you've got to use the resources that are there. Understand that it's not, you don't have to be there. 24/7 Sometimes you need to go and grab an hour with a friend, or just yourself. Whatever it might be. Don't feel the guilt. I mean, it's easy. It's so easy to feel guilty for taking that time. But you can't look after anyone else if you're not looking after yourself. Just make the memories. As the most important thing, make memories don't disguard don't disguard anything as a memory. They don't have to be massive holidays. They don't have to be London, London was Grahams wish but they were you know, it can be the the dancing in the kitchen. It can be the putting up Christmas decorations, whatever it is don't disregard the memories, they are the things, but look after yourself. Because one day somebody might not be there. And you've got to do it on your own.

Lewis  36:23  
Okay. Throughout your caring jourey looking after Graham was there any thing that you had to learn that you didn't know before that journey started?

Niomi  36:33  
Oh, gosh, probably loads. I was really lucky that I had worked in health and social care. So I understood medications. I totally bamboozled the nurses by creating my own mar charts and stuff. But I think the big things were so moving in positioning, it was a big thing for me, because I had always thought, you know, I've got this i worked in health and social care, I've done moving and positioning training, I've got my, we had our set of stuff, like our own slide sheets, totally different when it's your own. It is so different, when it's your own, all of a sudden, all of those things that you know, that are practical i think take the time to get the advice. I at the time, didn't know about your moving and  positioning training. But what I did do was ask the Macmillan nurses when we were in at the Alex unit  to show me how to do it. Because I was pretty adamant that it was it was fine, and i know how to move and position I can do my own. Graham wasn't a small man. So moving them across the kingsize bed on my own and needed to understand that I needed to understand how to do that properly. So we'd see probably move in possession.

Cheryl  37:43  
And was that just to take the pressure off of where the growth was?

Niomi  37:47  
 Yeah, because he couldn't move himself properly in the last few weeks. So slide sheets were really the only thing that was turning him over in bed. But also, because every now and again, he maybe would move himself but he wasn't aware of where he was in the bed. So we had kind of got ourselves to the point where the best place for him was right in the middle of king sized bed. Just to keep him safe. He had grab rails at the side, but it was even still It was just to kind of try and keep him safe. So then trying to move him to provide personal care, to give him a wash to be uses creams to whatever it might be was backbreaking to try and get across the bed to get to him or to pull him across the bed. It was a massive task. The district nurses thankfully where they came in maybe I think they were twice a day in the end. But you know, those in betweens and understand and think as well, not just the moving and positioning, but also the different that you can ask for different things. So like the different aids that are available, how do you use the different aids, like continence care, things like that. They were things that I hadn't I didn't work, incontinence care didn't understand the different needs that could be used. So I think those those I needed to understand what I could ask for or how they were all used. So yeah, I think it was I was I was lucky, I worked in health and social care, but I cannot imagine how it must feel for somebody who has never encountered medications has never encountered having to move somebody, has never encountered having a feed that information to a nurse. So I was able to relay information to a nurse that made sense to her. But even then there's this they still struggle to understand how I was putting it compared to how they would understand it. So I can't I can't imagine how it must feel for somebody who doesn't have that knowledge. So yeah, I think I was an awful long way of saying that

Lewis  39:47  
nah na it was useful information. Thank you. 

Niomi  39:52  
its a journey, still a journey.

Cheryl  39:55  
And how are you coping with life? Not being a carer anymore? How long did that adjustment take or are you still adjusting?

Niomi  40:01  
I'm still adjuster. I'm still adjusting. Yeah, Graham has been going seven months. And I still I don't know, you spend so long getting yourself into the frame of mind that you are now  a carer And actually, I think it was probably in Graham's last month before I recognised that I was a carer. But I suppose it's actually how do you define the what's the difference between recognising and you're not a carer and recognising that your partners gone I don't think that a different you know, somebody said to me the other day, but you're not married anymore? Of course I am! Yeah. And it's the same with the carer thing. Your not carer anymore But only because he died. Yeah. Do you know what I mean? I'm not not a carer because I don't need to be a carer. I'm not a carer because he died. So I think that's when that responsibility comes to an end. I don't know how it is for people who come to the end of that journey and it's because somebody hasn't died but maybe you've come to the end of that journey and somebody's died you don't lose that mindset. But if I'm brutally honest and was to see something that probably a lot of people don't want to voice there's a bit of relief there is a bit of relief that actually somebody's wellbeing and survival is no longer on your shoulders

Lewis  41:30  
I think it works both for you. Graham's no longer suffering and you've got that relief as well. 

Niomi  41:34  
There is there is a I did everything I could and I know that.

Cheryl  41:41  
And that gives you comfort?

Niomi  41:43  
Yeah, it does. Wait, everybody around Graham did everything that they could you know it just, Take that bowel screening!! When it comes in the door. Graham got his and was just offended that anybody was going recognise that he was 50 and he refused to do it. If he'd have done it he might still be in here. Right. So but we all did everything we could and I don't think anybody could have done any better by him. And there's definitely a comfort to be taken there.

Cheryl  42:25  
Is there anything else you want to add? 

Niomi  42:27  
I don't think so. 

Cheryl  42:29  
Can we just say thank you for coming in and sharing your story. What you've just shared with us will resonate with so many other people people and help so many other people

Niomi  42:39  
hope so.

Thank you for the chance to talk about it.

Cheryl  42:45  
Thank you. 

Lewis  42:46  
Thank you.