Let's Talk About Brain Tumours

Episode 22 - Sibling Grief

• Episode 22

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In this episode I talk to Kaz and Lauren about what it's like to loose a sibling to a brain tumour.  For those of us that having siblings we know that the relationship we have with our siblings is different from any other relatonship we have. Kaz and Lauren share what it's been like for them when they found out their siblings had a brain tumour.  They share how the loss has changed their lives and the gap that is left when a sibling dies.

Kaz has set up a Facebook group called Grieflings to help other people who have lost a sibling as she struggled to find  a space where she could talk about her experiences with people who truly understood. You can find the group here. You can also find Grieflings on Instagram here

You can also contact our support team by calling 0808 800 004 or emailing support@thebraintumourcharity.org

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If you would like to speak to a member of our support team you can call 0808 800 0004 or email support@thebraintumourcharity.org

Sarah:

Welcome to Let's Talk about brain tumours, the podcast where we'll be talking to people who have been affected by brain tumour diagnosis, either their own diagnosis or the diagnosis of a loved one. We'll also be sharing news and updates about brain tumour charity about what we're doing to halve the harm and double survival. Welcome to the podcast today I've got with me, Lauren and Kaz, we're going to be talking about a subject which I know is really important to quite a few people I speak to, and that is what happens when it's your sibling that has a diagnosis and what happens when your sibling unfortunately dies. So we're going to be talking to Lauren on Kaz about their experiences of their own siblings. So I'm going to start with Kaz to introduce yourself and tell us a little bit about herself. If that's okay with you can Kaz?

Kaz:

Yeah, that's fine. Hi, I'm Kaz and my younger sister Rhea was diagnosed in December 2018, with glioblastoma grade 4 after suffering a sudden stroke. At the time I was in living and working in New Zealand. So hopped on first flight back, I have a bit of a kind of blessing and a curse of being a healthcare professional. I'm a neuro physio. So I kind of knew from the beginning of the journey, how it was likely to end, but had the struggle of you know, having the information and not being able to talk to anyone about it. Rhea underwent a lot of treatment, including radiotherapy, numerous different chemo therapies, two brain surgeries, and we even fundraised to try immunotherapy in Germany, the treatment helped to slow the growth, but obviously, it's incurable brain tumour. So we had two years of her diagnosis. Before she died last year, in August 2021. She was 25 When she died, she was my only stippling. She's five years younger than me. And obviously, there's been a lot of focus the past few years on, you know, making her her life a good quality of life until the end. But obviously, after she's died, my whole world has falling apart, basically. So yeah, it's been eight months since she died. And I'm still trying to figure out what my life is without her in it. But I think, coming on a podcast that this is a really good start in you know, processing emotions and sharing the sibling story, which I think yes, forgotten about.

Sarah:

I was gonna say it's a long journey, but it's not long in the sense that in the space of that time you lost your sibling. So although it seems like over two years you were caring for her that's a short space of time to have your whole life changed.

Kaz:

Yeah, yeah, it was a lot of change all at once. And a roller coaster, as anyone knows, with a brain tumour journey. Your whole world is surrounded by brain tumours and the treatment and the worry of what's going to happen next. And it feels all at once a flash and the longest time in my life. Yeah, all at once. Same as the past eight months felt like that. She just died yesterday, but also feels like I don't remember here being here. It's very strange combination of feelings.

Sarah:

Thank you for sharing that. What about you Lauren do you want to tell us a little bit about how come you've come to

Lauren:

So my sister Katie, got diagnosed with a grade 4 diffuse the here? midline glioma in October 2020. We got a toldl that's more common in children, but adults usually live around two or three years after diagnosis. Katie was supposed to start radiotherapy about a month later. But she had previously had a shunt fitted so she had a lot of complications. She had around 10 surgeries on the shunt which kept delaying the treatment. So should never actually got started treatment. And then in January 2021 we got

Sarah:

and that's the thing about brain tumours you're at told that because of how rapid and aggressive it was that it spread and she died only three months after diagnosis and January 15 2021. So what all happened so so fast, both ends of the spectrum really one really really quickly, no time to process and another you've had that long time where it really altered your life because it took over your life caring for her.

Lauren:

Luckily at time i was on furlough, so I could be there to help care for along with me mom and her husband.

Kaz:

One of the only blessings of COVID isn't it that you have the opportunity to send that quality time with them

Lauren:

I would've been at work every day, I wouldn't have had the chance and with how fast it all went over I wouldn't have been able to see her.

Sarah:

And seen seeings as you're both now, you've obviously had your journey of them having been diagnosed and treatment and stuff. And obviously that took over your lives. But what happens when the fateful day comes when they do die? And siblings is a very, very different relationship. What's that, like when you find out your sibling has got a diagnosis, and you get told this is untreatable?

Lauren:

A sibling to me, like, it's someone who you begin your life with, and should be there all the way to the end. So with my sister getting diagnosed at 38, getting told she might live two or three years what hit 40. And then I was only 30. At the time, you just like everything, it's just all took away, like I don't have any other siblings to like, share your life with your past your childhood memories, everything that you've done when you're a child, because obviously, you have your relationship with your parents, but you experience everything growing up with you with your sibling around. So it's all it's all took away from you like, your past life and then your future also with your sibling

Kaz:

Yeah, I feel the same Lauren and I feel like there's now two parts of my life. There's like the part where Rhea was in it. And then there's the second half of my life without her in it, it does completely kind of separate those times in your life? Yeah, the memories, the childhood memories are a big thing, because nobody else knows them. And you, you tell a story about them. You don't have that person that experienced it with you, and was there in that moment and relate to it. And I found that really hard in you know, reliving those memories, especially because I've got a really bad memory I'm really worried about you know, that I'm not remembering them accurately enough, and that the memories are going to fade. And I have a massive fear that once those memories fade in my brain, then they're lost forever.

Lauren:

Who carries them on

Kaz:

Yeah and you're your mum and dad might have a kind of a vague recollection of them, but they don't they didn't live it. And they were

Lauren:

Yeah, totally, like different experience of that memory they had cos obviously they're your parents. I have a terrible memory and my sister literally remembered every little detail every little thing where we like, when her kids have their kids or when her kids get older and they as things about when we were little and I like, forget them. And I'm like, Oh, no one thought like, that feeling is just horrible. And I won't be able to tell them what she was like, or any little stories about our childhood and things like that.

Kaz:

Yeah It's not evenmemories is it is more than what they were like, and the little things that do fade quite quickly about their mannerisms, things they used to say that even the tone of their voice and things like that, but it's really hard to like conjure that back up that smell of them the sound. Whereas you know, a memory sometimes you can kind of remember it more like if there's a photo and you can speak it. But yeah, the whole there being is difficult to remember. I remember really early on after she died, I was in kind of a bit of a shock phase. And I couldn't remember anything about her I could only remember literally the past two and a half years when she was ill I could only remember her as a unwell person. I couldn't remember what she was like as a you know, normal. It was a really horrible feeling. But they've come back slowly those those memories and I think anyone out there that's in that phase at the moment and just be reassured that it will come back slowly, because I was really panicked that I would never get those memories back.

Sarah:

Whether you get on with them or not I think sibling relationships they're the one person who can really argue with

Lauren:

my sister we're like complete opposite people. That it's a joy like having a sibling because no mother should didn't agree with her probably 99% of the decisions but she was still there and supported us 100% on everything.

Kaz:

Yeah, and I feel like partly when someone dies they are you know immortalised in in their all of their positive traits which obviously they had so many. And I think as a sibling, you know them inside out And you know, that like annoying traits and you can't deny that they were annoying or a bad trait in them. And I think I struggle with that, that everyone remembers all of the good times and all of the positive things. And I actually want to remember it all, like at once, because otherwise you're denying that aspect of that person. And so I find it difficult to find people that I can talk about that stuff with,

Sarah:

I think also must be hard. If no, there's this perfect person that understandably, like you said, people, they want to remember the best of the person or that's the memories that they want to reflect on when they think that person, but then that's really difficult standard to live up to as the surviving sibling.

Lauren:

Oh, definitely. Yeah. Like, y'all was have little thoughts because my sister like, had her full life planned out, she lived her dream. And then for me, I'm the complete opposite. Like, I'm so laid back, I don't make any plans and have like a feeling like, God, like should have been me that like, did the wrong sibling die? Like, should it have been me because my sister had so many plans and so many, like, different traits to me and things like that?

Kaz:

Yeah, I have the exact same feeling as you, Lauren. And I think it comes and goes that feeling I think logically, you know, that it's not really an accurate emotional response. You can't help entering your mind did the wrong one, go. And I think you go backwards and forwards with it. And I think it's easy to spiral into kind of looking at your, you know, self perceived bad traits, or things that you know, you don't do and they do just because you're completely different people. Even as small as that I'm really untidy, and cluttered. I Rhea was completely OCD really tidy. And I just even think with my parents, like, you know, they prefer things tidy, like, I'm not, I always feel myself comparing myself to her. I think you're doing anyway.

Lauren:

Katie would like it was more tidy than me because I am so untidy really bad. And she was the complete OCD.

Kaz:

Yeah, it's hard because you it is the small things, but you can go down that kind of spiral of, you know, should I have gone instead of her? You know logically like it's not

Lauren:

Yeah, definitely

Kaz:

Yeah I also think sometimes on that, that I wouldn't want her to go through the pain that I'm going through either. So it's like, it's just a lose lose either way, because I wouldn't want her to be alive. Now, where I am now, without her and having gone through this traumatic experience, but equally, I don't want her to be dead either.

Lauren:

yeah I'm the same cos I think like, god like because my sister was like, really stressful and emotional and I always think like god. I wonder like, what she would have been like, in my situation, having a watch her little sister go through something like that yeah

Kaz:

Yeah, it's just, yeah, it's bad either way. But you just have to focus on the fact that you can't change it. And just accept it as an emotion like of grief

Sarah:

Yeah, cuz you say that, that you have those feelings? Do you think that sometimes that other people around you think that? Does that ever sort of pop toto your head sometimes that? Oh, I wonder if my parents preferred it If it was me? Do you ever get those feelings? Or is it an internal feeling of yourself?

Lauren:

I don't think personally, that me parents will think that but I think it definitely crosses like my mind. Think, God, I wonder because of like the untidiness an the my unorganised life, like, do they ever think ahh I wish it have been like Lauren and not Katie and things but or even l more like when you talk about it out loud, it sounds silly but it's like a feeling or a thought, like you do actually cross your mind of course

Kaz:

Yeah, I have the same I don't think that my my dad would think it but it has crossed my mind. But you know, when you logically think about it, it's not a reasonable thought. But I think that is grief, isn't it? It's irrational and unpredictable. These thoughts and emotions aren't going to be normal. So I just try and focus on that they're actually some things that I'm thinking aren't necessarily true otherwise I think you go a bit crazy.

Sarah:

I would say a lot of people have experienced losing somebody, you know, they they have experienced the death of somebody whether it's a grandparent or but I think very, very few people have experienced the loss of a sibling. And I think that must be quite a lonely, isolating place to be because some of those conversations I know we met a couple of weeks ago before we recorded this, just have a bit of a chat. and you two were like, yeah, that's how I feel that's how i feel but probably wouldn't feel comfortable to have said that to somebody else because they wouldn't understand those feelings but you both immediately were like, yeah, exactly that I totally understand that.

Lauren:

Yeah, like you can you can talk to your friends who maybe have siblings but haven't lost any or like, even when I've talked to my partner because he doesn't have any siblings at all and like you think yes like people are there for you. And you can talk to people about but they no the can't truly understand how you feel, feeling and they just can't.

Kaz:

Yeah, I feel that I can only be really open and honest with people that I know have been through a similar experience. And I think even losing a sibling is one thing, but also losing a sibling to brain tumour is a very unique experience in itself. And the emotions and the journey that you go through with with caring for someone with a brain tumour is really unique. So I think it's difficult to find people that have been through that. But I know as soon as I talk to someone that has experienced it, I can be totally open and honest. And there'll be no judgement, no kind of shock about what I'm going to say. And I think it's really hard to find, but when you do find it, it's really helpful in making you feel, you know, understood and, and less alone in this.

Sarah:

And you've actually set up a group, haven't you Kaz?

Kaz:

Yeah, and it's based, or it's based around this concept, really, it's called Grieflings And I met a, just a mutual friend who lost her brother to glioblastoma, as well, and kind of we met and as soon as we met, you know, we were talking about things that I would never discuss with, you know, any friends or family. And that connection that you that you build straight away is, is really deep. And you can build a really good relationship on that. And we really benefited from that, that relationship, both of us in terms of our getting through our grief. And I think we both realise, you know, everyone needs this everyone needs the people that you know, I call it their grief tribe, you know, people that both do the same thing to connect with each other is so helpful to get that support. So yeah, we set up the Griefings a few months ago, and we've just done on Instagram and Facebook. But we're setting up meetups, virtual meetups, and we had our first one. And they've been really, really successful so far. And I think the people are out there that need it. It's just trying to connect those people together in a type of network or community. So I'm excited for Yeah, where that will go where that will take us.

Sarah:

That's absolutely amazing. You're absolutely right, that there are brothers and sisters are struggling. And I think it's amazing that you've done that Kaz and we will put all the links in the show notes so that people can find you. And they'll know where they can do that. I know when we talked one of the other things that you said was that people often when once you lose a sibling, people often ask how everybody else is you know how your parents, but they don't necessarily ask you how you are people kind of connect with the fact your parents have lost a child. But not necessarily that you've also gone through a really, really unique personal grief yourself.

Kaz:

Yeah I had this a lot like, obviously, because we had a long time throughout our journey. So I even had it when Rhea was alive. Obviously, she was the main focus of everyone's attention because of what she was going through so it would be how's Rhea, and then I would say and then hos's your mom and dad, I'd say and then the conversation would just go and I didn't really mind too much, obviously, because my main focus was Rhea and my parents as well. But there is a sense of just being a bit lost within the whole situation. And I think I've noticed that a lot since Rhea died as well that a lot of people ask me, How's mom and dad? And you know, have to try and formulate some sort of answer that I don't really know how to answer that anyway. And then you know, it's rarely asked, you know, how am I specifically not that I you know, I want that all the time, but it's just that feeling of just being a bit you don't really have your place in that situation and I I totally get it. There's a part of me that knows that the grief of a parent, you know, losing a child I can't even fathom that. I don't have children. But I can see you know, I've witnessed it and I know that it is you know the worst pain you can ever experience but there is a place for the pain of losing a sibling as well. And it does get a little bit forgotten, I think in in the support that you get. And when after someone dies.

Lauren:

Yeah, definitely like, like I've said before, like, to me losing a child. There's nothing like worse, you could go through in your lifetime. But as well as that, like, not taking anything away from Sibling loss, because when you see someone, the first thing someone will say to me is, how's your Mom? How's your dad? That's fine but you're speaking to me, like, you know what I mean? Like, no one no one has ever said how are you? how are you? You know, I mean, and then like you say like

Kaz:

Yeah, when asked how your mom or dad is like I find myself now Like, I can't just say that to someone oh they're not good you know liike Yeah, it's cut the conversation off.

Lauren:

You're gonna go into detail of like, how bad the grief and then

Kaz:

and imagine if you answered it, honestly, I will sometimes catch myself answering honestly. I'd be like, oh, yeah, they can't get out of bed.

Lauren:

But yeah, like, was nothing like that's the first thing anyone ever says, How's your mom? How's your dad?

Kaz:

And I think the thing it makes me feel it when people say that is that, that I don't deserve? I know how sad I feel inside. Like, I know my emotions, but it kind of doesn't fit with. It seems like I'm not worthy to experience these emotions.

Lauren:

You shouldn't be grieving as much or hurting as much as your parents. Well, when you are just as much as them you lost the same person.

Sarah:

Yeah, absolutely. And and that feeds and again, is where there's that of that feeling of did the wrong sibling die? Almost. They're not even recognising how difficult that that is. Everyone does have a certain place or a certain role within a family and it suddenly isn't there? How does that affect the family dynamics, your role within the family?

Lauren:

Yeah, like my sister, because she was so organised. She like anything we're done as a family, she organised it for us all. So now when we do like, family gatherings, it just doesn't just doesn't feel right anymore. Just I don't know, it just makes you feel like you, you shouldn't be taking her place of doing all of that. And, yeah, it's hard to put into words.

Kaz:

Yeah, that is completely changed. I think it's, it would be strange if it didn't completely change your family dynamics, or even that external family or friends, you know, that whole community and network, your support network, for me is completely changed. And that's, I think, hard to accept sometimes. Because I feel like I've already lost her, you know, and then now everything else has to change. But it's inevitable that it will, because people love loved that person. And, you know, it would be odd if it didn't all change. But I feel that, you know, within the family dynamic, the your parents are grieving their child. So I feel like they don't really have the space or time for your grief to support you. And then equally, I feel I'm so deep in my grief, I actually can't support that. I wouldn't even know where to start with supporting them. As a parent that's lost a child like there's just above my, my qualifications as a daughter. So I feel like you become a bit detached from each other. And I don't know whether that changes over time. But for me, yeah, particularly, I feel like there's a little bit of a detachment and you kind of have to relearn your roles in the family or your responsibilities and how you relate to each other. It's like a complete like relearning process for me.

Lauren:

And everyone like me, me, mom and dad, like everyone are in different stages of grief, where like now I try to have a positive outlook. And I try not

Kaz:

Oh gosh yeah to think about what my sister went through. Whereas I think my mom's struggles with that like to get past. Like, what what she experienced what my sister went through, and it's hard to have a conversation with someone who just wants to speak about the sad times when you're at a place where you don't want to do that and as much as you want to be there for them. Like, I think you don't want to hurt your mental health as well. I've realised definitely with that, that, you know, you have to just look after yourself. Because if you're not feeling stable in yourself, there's no way that you can help anyone else. So I think especially that, you know, Rhea was ill for so long, and I did a lot of the kind of management of her, you know, medical side of things. So I feel like there's no way for us to support each other now. And the acceptance of that is kind of slowly coming. And as you say, Lauren, we are all in such different stages, we just can't relate to each other, like even the only thing we relate to each other in is like, we all still really want to talk about Rhea and want to, you know, think about memories and share those together. So I think that is nice. But in terms of our own grief, we all kind of ships passing in the dark and not really able to relate to each other. But I think that's fine. For now.

Sarah:

Has this changed how you view the future in terms of your family dynamics, you plan a future where you expect that sibling to be there, like you said, Lauren, right at the start, this is the person that you you've gone through your whole life up to this point with them, and you expect them to be there for your entire life.

Lauren:

Yeah, see, my sister, our kids are very similar, our oldest, there's only 16 months between them and then our youngest I think 14 months so we've done a lot with like the kids all together and we always made plans when I think about the future like we would have went on like more fun, big family holidays all together would have done a lot more with the children so having that memories not being able to make memories as hard. Even trying to do things now include her children without her is hard. And aside from that, the fact that when you have to say goodbye to your parents in the future, like when we lose a parent, like I have to do that on my own, I guess I'll have people around as me partner and everyone, but I don't have a sibling, which was our, my little family of four me, mom and dad, me and my sister, like, I have to go through that on my own. Like when you think of funeral arrangements and anything like that, in that, for me, it's horrible.

Kaz:

Yeah, I have the same as you, Lauren I have that thought a lot of the time. And I think that comes with, it's very unique in terms of being the only one left. Because I think a lot of some other siblings that I've spoken to that I do have other siblings that are still alive, they don't have that same worry and I think for us being the only one left, I think that brings a huge pressure, I feel pressure and that responsibility of massive responsibility. This is up to me now, you know, I'm going to be the one you know, has to manage things as they age, yeah and I also just feel like same as you that those kind of different life stages that you imagined experiencing with them, they're completely gone now. So it's kind of both sides. It's them not being able to experience their life so that their unlived life in terms of you know, what they would have done in the future like Rhea, she was only just starting out in her career, like she hadn't really lived her life yet. And I feel sadness for her unlived life in terms of milestones and things, but also, for her not to be with me in my next, you know, milestones, whatever I'm going to do in my life I just imagined us doing that together, you know,

Lauren:

Yeah, experiencing whatever together, even that, you know, as we got older, and I remember like thinking like, oh, we'll probably be in the same care home like causing havoc with our walking frames or something. That's quite sad, isn't it that not being there for your life moments, as well as a Yeah a big one for me is I get married next year I always had silly little thoughts about because my mom and dad were quite often quite older but they were older when the had me so I always used to think god I hope my dad's still here to like, walk us down the aisle, but that would never have crossed my mind. I think oh my sister will not be there by the side at me wedding, because she would have like had it all planned out because I don't have a clue about weddings or things like that she would have had it fully planned out and it's like the realisation of she won't be there.

Kaz:

Yeah, that must be really hard.

Sarah:

Yeah. It's those things that people don't necessarily even think about when they think about losing a sibling and you're right, Lauren you know, most people think that they'll lose their parents before they even contemplate losing a sibling.

Kaz:

Yeah, and you wouldn't really plan like, I don't know, because they're your parents. They're older you wouldn't really plan your future together with them. Whereas with your sibling, you're planning your future together in your own head about you know, how you imagine things will be. It's just taken away from you. It's really sad.

Lauren:

Yeah,

Kaz:

I also have a really strange fear of in my life that trying I have like a pressure of trying to keep myself alive. I don't know whether you have that.

Lauren:

I'm like I hope I don't die before me Mom and Dad's after all they've gone through now. I couldn't imagine them having gone through it again and be like,

Kaz:

yeah, Same I yeah, I really think that Oh God, I need to keep myself alive now.

Lauren:

Yeah, like, I never thought about funerals or anything like that so I've actually, me and my mom and dad actually, where me sisters buried we've actually bought our grave plot

Kaz:

Same so we're right next to her

Lauren:

And I've got a funeral plan set up that I pay month for so that will all be paid off cos it's just like, I didn't realise how like expensive funerals were and things like that. And I'm like, God, I would hate for my children to have that worry, so and all the details, because obviously, I never spoke about every detail of like, how we would have want, like, my sister would have wanted her funeral because obviously, she was only 38. So

Kaz:

Yeah even obviously, Rhea knew her diagnosis, but she was very kind of positive and she never really spoke about, you know, the fact that she was going to die, but I think she did know it but you know, she was kind of fighting right to the end, and we never really had those conversations. And I think they would have been too hard she wasn't in a place where she was ready for that. I found that really difficult, because my parents were completely in shock. And so I took on a lot of the kind of organisational side of the funeral and everything like that. And it was a lot of work, especially not knowing what they wanted, because I could guess to the best of your abilities as their sibling, but really want to get it right for them, which is strange, because they don't really know. But you want to honour them in their the way that they would have wanted without knowing any of the details what they wanted. We've gotten our lucky USB with all of our plans on it, because it just takes out that extra kind of pressure and worry after they've died.

Sarah:

or not. She said people are really resistant to bring up the subject of advanced care planning, but because it's traditionally only brought up when people get a life limiting illness, that people do it. But everybody should do that as standard because nobody knows when they're gonna go out and get hit by a bus. Nobody knows when something's gonna happen with them. And anybody can have an accident at anytime. So she said, It's just good practice, every body should have their plans written down. Quite often, like you said, once this happens, suddenly you're left trying to figure this stuff out and you want to do the best and it's one of those things that people feel a lot of pressure and guilt and what should I do? Did they want to be buried? Did they want to be cremated? What songs would they want played? All those things? Like, people stress out about it at a time when it's probably the most difficult time of their life anyway

Kaz:

Yeah, your brain can't even process you know, anything in a normal day to day, you know, life to make all those decisions in that heightened state of emotion is very difficult. And I think yeah, definitely everyone should talk about it more. But death is such a taboo subject, isn't it in our culture, I really finding that, like, I've had someone close to me die. I don't mind talking about death or dying because I've experienced it and I'm not scared of it but a lot of people are, that would be really good to try and break down those barriers in our culture.

Sarah:

Do you think people find it uncomfortable to talk to you two since your siblings have died. Do you think that people avoid those conversations or avoid you even?

Lauren:

Yeah, I think people probably think if they mention like my sister's name, they're like, it's going to hurt you or it's going to make you feel sad whein fact, it's the opposite like, I love for people, like talk about her, and like, it's all about, like keeping her memory alive, like I want her name to be spoke about all the time.

Kaz:

Yeah same. and I think people don't realise when they say that, oh I don't want to upset you. It's like, I'm already upset you just I'm just hiding it from you. I'm putting on a face and pretending the whole day you know, you're just acting like you're acting being in normal society because you need to live and function. But um, I don't think people realise it's literally right at the tip you know, it's just beyond the surface. Even if you do get upset, you know, when you're talking about them. It's not because of them, it's just you already feel like that. And I try and say that to my friends, because same as you, I just want to keep talking about her and keep her memory alive.

Lauren:

Yeah, definitely.

Sarah:

You're doing amazingly well, like you said, you have good days and bad days, I'm quite sure. But for somebody that's going through this and may be struggling, what advice would you give?

Kaz:

I think for me, personally, as I said earlier, it's finding others that are going through similar similar situations, because that's the only way you're going to find your support system, you have your existing support system in terms of your friends, family. But as we said, all the way through, they're not going to resonate with this exact experience, I think finding some people that really know exactly how you're feeling can really make you feel less isolated. And this gives you a bit more support to get through. And I think people should really consider, you know, professional help if they need it. I've had, I'm having counselling through Rhea's hospice that she was associated with, and they have a bereavement support team. So it's specific bereavement counselling, which I know, you know, isn't available everywhere. And obviously, emotional support in grief is really not as well, kind of supported in the country as it should be. But I'm finding it, I wouldn't say helps. It's not really a, you know, it doesn't make anything better, but it just helps you get through the week, you know, and offload certain feelings that you wouldn't really say to anyone else. So I'd say to people to consider professional help if you are really struggling. And I know people, lots of people don't really feel they want to but for me, it's been really, really good.

Sarah:

Yeah, I think a lot of people feel like almost like, it's scary to go to counselling, because they feel like they're going to pop, it's taking the cork out of a bottle, that they're already struggling and the emotions feel too huge, too big to overwhelming, they're frightened that if they go to counselling, they will just be overwhelmed by the emotions, but actually, it's a way of helping to process those emotions.

Kaz:

Yeah, and I think the emotions are so huge, that they're going to come out in other ways and I could sense that kind of happening to me that you know, it's not going to stay inside as much as you try and keep it in, it's going to find ways to come out because it's such a huge you know, life change, and so many emotions going on so I think yeah, it's scary the first few times but as you say, that the way the only way to process your emotions by talking them aloud.

Lauren:

Like in the beginning for me I was in like a really dark place and when it happens it's hard to comprehend having your life without them, like what's your life gonna be like, like you feel guilty, like, for being happy and hard to get past that. But like doing things like this helps me raising awareness me and my best friend Cheryl set up, like a little page on Facebook, and we do raffles every week, and all the money goes to the brain tumour charity so, doing little things like raising money has helped me like I do a little interviews or stories with magazines on me sister story just to keep her keep a memory alive and charity nights like it would have been a 40th birthday in June coming up. Like we're in the process of organising a charity night for it with everyting going to the brain tumour charity so have a little thing, which is helping other families with the money raised and raising awareness just makes me feel like I'm making a tiny little bit of difference, if anything, for other families and for things in the future, as well as telling my sister story and keeping her memory alive. I just think you have to like for me personally, like I have two children and obviously my sister had two children and it's just like, I have to have that positive, positive look on life, like, oh, what kind of life are the kids gonna have? So yeah, I just try, like, have happy outlook. although it's never. It's always in the back of your mind but my sister would not have wanted us to be unhappy forever. She would have wanted us to be happy and live on and do the things that she can't

Kaz:

Yeah, I think that finding your purpose is, is the key, isn't it? Afterwards, when you're when your purpose before they've died, has just been focusing on them. It's difficult to find that purpose in your life again, especially for me because, you know, I'm moved over here to care for her and I don't have family. So that kind of finding the meaning in your life again, and that purpose and I think that can be through fundraising and like, little things to honour them and raise awareness. I think that's, you know, a brilliant way to channel your grief and that's about how I how it feels for me doing things like this. It's like, it channels your grief in a positive way.

Lauren:

Yeah, definitely.

Sarah:

Thank you so much. It's been really amazing and insightful because there's not a lot out there and it is so unique. There probably are a lot of people out there, but they're suffering in silence and that means there's a lot of people sitting at home feeling very isolated and, you know, years after still struggling to know what to do with that, that bit beside them that's missing now, that's just should be there, but it's not.

Kaz:

Yeah,

Lauren:

yeah.

Sarah:

Thank you both so much

Lauren:

Definitely. Thank you.

Sarah:

We hope you enjoyed today's episode. Don't forget to subscribe to the podcast so you'll never miss an episode. If you'd like more information, you can visit our website at thebraintumourcharity.org or email our support team at support@thebraintumourcharity.org. And finally, before you go, if you enjoyed this podcast, please can you leave us a review on iTunes or wherever you get your podcasts so we can reach more people and raise more awareness