Let's Talk About Brain Tumours

Episode 20 - Dating and relationships after a diagnosis

• The Brain Tumour Charity • Episode 20

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In this episode, Chandos and our guest Laura talk candidly about the reality of dating after a brain tumour diagnosis and the difficulties of online dating and telling a prospective partner.  They share their personal experiences and how they approach the world of dating and relationships whether online or in person.

If you would like support around your relationship or you are single and would like support around some of the issues raised in this episode,   we have  partnered with relationship counsellors Relate to offer relationship counselling you can find out more here

You can find out more about the support available from our support team here
You can contact our support team by calling 0808 800 0004 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 from the brain tumour charity about what we're doing to have the harm and double survival. Welcome to the podcast today I've got with me, Chandy and Laura. And we're going to be talking about dating with a brain tumour, and some of the challenges that people face when they're single, and they're trying to find a relationship. So welcome to the podcast. Do you want to both introduce yourself and tell us a little bit about you?

Laura Nuttall:

I'm Laura. I have glioblastoma multiforme. I was diagnosed in 2018.

Chandos:

Yeah I'm, Candy, I heard some of the episodes of the podcast, look at the spotlight, kind of what the charity is doing indifferent areas and I had a pilocytic astrocytoma in childhood.

Sarah:

Today we're talking about dating and this is something that comes up quite a lot Dating, being single, or finding yourself single, when you've got a brain tumour diagnosis, throws up all kinds of questions and challenges that are pretty unique to you guys. Do you want to start Laura by telling us some of the challenges you've had?

Laura Nuttall:

Yeah, so I've been using a lot of dating apps, to make relationships, or form relationships with um with other people. And I've had a few, a few good dates and a few bad dates. I was trying to get into a romantic relationship, by these apps. And usually it's just like conversations on the app, and then you like agreed to meet up. Sometimes, I have decided to tell people just via the chat function, that I have terminal cancer and that has never worked me.

Sarah:

I can't imagine why

Laura Nuttall:

Yeah, I think I scare people away when I do that. So I decided that I would maybe tell them on the second date, because I didn't want to, like lie to people. And I didn't want to go on dates when I knew that they didn't know everything about me. Although it's quite difficult to to hide the fact that you've got a brain tumour, especially with via social media, if anyone searches your name, my profile just come up with loads and loads of stories about people with brain tumours, and articles and interviews that I've appeared in. And so for me, it was quite difficult to not reveal any information that would allow them to look at me online before me telling them that I had cancer.

Sarah:

I hadn't even thought about that, you know,

Laura Nuttall:

Yeah

Sarah:

I thought about the things like that, what do you put on your dating profile, but I hadn't even thought that, that nowadays, the first thing people do when they meet someone is, is search for them on social media or you know, just do a Google search somebody and even if you haven't had the publicity that you've had, most people have things on their social media profile that would kind of give it away in some form or another, even if it's just a picture of them go for a scan.

Laura Nuttall:

Yeah, so you have to be quite careful. If you want to reveal that face to face and not via social media that can be quite impersonal. With regards to putting things on the dating profiles, I never put anything specific on I just kind of talked about me as a person rather than me as person with cancer, because there's more to me than just that. And the reactions I've had have been varied. When I've told people face to face. I mean, it's quite a lot to take in, if you thinking from their point of view. They've just gone out with someone and the second day and they're already telling them about their medical history and the fact that well, for me, I've got terminal cancer. And I don't know I went to stage of thinking, no one's ever gonna want to date me because I've got I've got a date. When I was diagnosed in 2018, I was told that I wouldn't have longer than 18 months to live and so like every day is a almost like a blessing and I wouldn't want to let anyone down by having them forming a relationship with me, and then just like go and die or something like that, if someone has invested in me, I think that that would be something that you'd have to really think about if you were going to start a relationship. And it's difficult to tell, which people will accept that and which people will be like, Ah, this isn't for me, I'm gonna run away. And to be honest, I don't blame them. It's a lot to deal with. But it's, it's been quite a challenge. Lucky for me, I've managed to find someone that has not run away as of yet. So it's worked. It's just for me, it's been persistence, even when you get rejected. And you know, it's because of the fact that you tell them about having a brain tumour, you've just got to carry on going, because there will be someone out there that will accept that and be like, Okay, how can I help you, rather than running for the hills

Sarah:

Yeah, and it's a tricky one, isn't it? Because you're right, on one hand, that is not for them to take in. But you're still you still want to live your life and if you're well, and relationships are a big part of anybody's life, and it's natural that you'd want to have a relationship?

Laura Nuttall:

Yeah.

Chandos:

I've had my my tumour like, and the impact of it since childhood. So like when you're in in school and stuff, and you start dating, like I say, dating and in the loosest term, because you go home, and go I've got a boyfriend, or I've got girlfriend, to your parents, that it's like, everyone's like, so excited. But it's like, it's not really a boyfriend or girlfriend and like, all my friends would, would be in these like relationships. And I wouldn't, I'd always be the single one and stuff. And I think my confidence was knocked a lit in childhood, in that respect. And then growing up and going to high school and then going off to university, everyone was so confident in going out and talking to the people they find attractive and stuff, and I wasn't, I couldn't talk to women, in the students bar like, I got to the bar, and I just couldn't speak to them. And like I really panic. And then like think, self confidence, because I've got a physical disability from having had my brain tumour, I find it. I've always I worry that they're looking at that, or they're like, they don't want to be seen with me. Because when I walk down the street, and I'm tired, my leg, you can really see that my leg is I look disabled, more so than when I'm not tired, I guess less hidden. And so I worry that they're going to be judged for being with me. So I'm like, why would I want to get into a relationship and then have that burden put upon them? And also, like, I think growing up like my tumour was, so it didn't know what it wanted to do like it would, it would be fine for ages and then I have to go in for surgery again. And then I'd be fine for ages. And then obviously I went into surgery again at university. So I don't know what's going on. Yeah, I'm lucky that it's benign. But it's still a massive thing. I know that when we were at the, the ambassador's meetups, a few years ago that we'd always talk about dating profiles and stuff. I remember we were sitting in one of the hotels from on one of our training weekends, in the evening, and we were looking at other Tinder profiles and stuff and were like what shall we do, how can we make ourselves look really cool and stuff like that? And it was that thing around the bio situation, like what do you put? Because I know that when I have spoken to women on there, have a really good chat and then like, the tumour comes up, it automatically like, there's like three things that can happen. They'll just stop talking to me. Or they'll talk to me for a bit and then the conversation was slowly drift off and then you'll be ghosted, or they'll immediately like unmatch you or something like that and it's it does knock your confidence quite a lot but as Laura said, you just got to be yourself and you just do what feels right for you.

Sarah:

So do you put in your profile that you've got brain tumour, or is that not something you do?

Chandos:

I think like, we were talking about this when I mentioned the training weekend or away like and how do you like overcome those barriers? I guess is what you'd calll them, for me I'm I like humour andI talk about my like my Schumer, like, call it Timmy. It has given me like, things to laugh about and joke about as much as it has things that hurt and I don't want to talk about I can tie my shoelace one handed. So like, we would put that in the bio, so there'd be a negative. Oh, yeah, he's got a tumour, but he tied hand one handed. So like flip it and make it something. Yes, it does feel a bit like and have you seen The Fault in Our Stars. It does feel a bit like that sort of situation. But you can also like, just being yourself and showing that yeah, things are really tough, but this is who I am. And if you don't like it, see you later

Sarah:

What's kind of the worst reaction that you've had off somebody when you've told them?

Chandos:

It's just like that, that awkward pause. I don't know if Laura's had that situation, but when you them and they'look at you . like, what do I say now?

Laura Nuttall:

Yeah, I tend to just talk a lot in those situations. But it's funny that you should bring up Fault in Our Stars. I often joke to my family, that people should I should put on my bio that anyone that likes Fault in other stars should, um should date me. But yeah, I'm not done like yeah, trying to bring Yeah, comedy into it. I think that's quite a good way to handle rejections don't hurt as much.

Chandos:

At the end of the day, I think that humour element, like they might , not become your partner, whatever, or you might not date each other butI find it easier to make friends that way. Making that humorous element to it, they're more likely to keep talking to you and just wanting to be your friend. It's hard for me to deal with some days, like, I don't want to get out of bed some mornings. And I'm not expecting you to want to be my girlfriend or whatever, or get into a relationship with me, but just be my friend, just talk to me let's get to know each other and that way, if you don't want to date me, that's cool. Adds more pressure is, especially with like Tinder and stuff, you have to get that automatic feedback because you can see how many people have swiped right on you. You can't see their profile, but it's tells you like 10 people a swipe right on you, let's see if you match them. And then when you don't match them. It makes you feel awkward. You feel like, is it me? Or what is it and stuff like that?

Sarah:

Yeah, have you had that feeling. Laura ?

Laura Nuttall:

To a degree, that's what the site's about, you've got a match with someone and it's, yeah, I think you've just got to almost be picky, but not too picky. That's not a good way to do it. Either. I have to save myself, I've been quite picky. So every time I've complained about being single, my family's just like, stop being so picky, but you've got to be picky with this sort of stuff. I was gonna say I you know, because that's come up for definitely, when I've spoken to people, this feeling of needing to settle or be grateful when somebody agrees to go out with them. They're almost like, you know, I should be grateful, I should think myself lucky that someone even bothers but like you said, why should you compromise Laura do you feel that sometimes there has been that pressure, I think because my I had my diagnosis quite like I was 18, when I was diagnosed, I had already been able to get out in the dating field an I kind of understood my self worth a bit more than maybe Chandos does because his was up throughout Primary School in high school. And I got mine after that,

Chandos:

As you say, like, my confidence was hugely not going through school and stuff, because I was having to wear like splints on my leg to help with balance and the movement and my leg and stuff like that, which not everyone wears. So like when you look and you stand up, and you look different from your peers, you are singled out and you're made to feel like no one wants to is gonna want to be with you. I think that especially carried forward even till I was 18 when I was having my last surgery at 18 - 19. And I remember my friend, he bought me a chat up line book and he gave it to me. So when I was recovering from surgery all I had to read was this chat up line book. And that, I think was like one of the it hasn't really helped obviously, because I'm still single. And that's like, what, six, seven years ago now maybe a bit longer. It was that humour like they said you can actually you are good enough to be in someone's life. You just got to do what works for you. It doesn't make it make those situations a bit more. It breaks the ice a bit more like when you can can joke and you can have that humour with them. But I think obviously, it's really uncertain when you've had a brain tumour, everything changes is not as cancers go in as tumours go it changes everything about you andI think it's hard for for anyone with a diagnosis to understand themselves, day to day, let alone expect to be in a relationship with someone and try and get them to understand who you are as well. Because if you don't know who you are, and not coming to terms with that, and it's taken a long time to get here to where I am and I think when I was a kid, I would want to be in a relationship because that's what everyone wants to be in they wanted to be with someone and stuff I think and now I've got older I'm like if or when it happens it happens like yeah, I get annoyed or I get upset when I see people out buying houses and getting married and stuff like that but I realised like that's their journey, this is mine. I got to just do what works for me.

Sarah:

You're nodding your head a lot that Laura.

Laura Nuttall:

Yeah, just the part where you you look different from everyone because I had radiotherapy, and I lost all my hair and my eyelashes and my eyebrows so I was just one bald mole and so every room that I stepped into everyone's eyes were immediately on me. So I decided not to wear a wig to kind of like, I don't know, like, embrace the fact that I didn't look like everyone else that yeah, I was going through something and I wasn't ashamed of it. Yeah, and yeah, just to have let your personality be the thing that drives you, not what other people want you to be or want you to look like, just be yourself and then the right person, will find you

Sarah:

yeah,

Laura Nuttall:

that sounds like a load of um

Sarah:

but you've both raised something that I've heard people talk about and have talked about their profile pictures and how difficult it is. I know, people that are putting profile pictures up of them pre diagnosis because their appearance has changed. Either their hair's not grown back properly, or they've got scars, or they've got facial palsy, or they've put on a lot of weight because of steroids, or they've lost a lot of weight because they're in treatment, you know, whatever. Their appearance almost gives the game away that there's something air quotes wrong. And they don't want people to make that instant judgement. And I think that's quite a difficult one because I know Chandos, you've got really short hair. now, people can't see this when they're listening to this, but you can see very clearly your scars. But when you let your hair grow, you can't see your scars. Do you pick your picture as in scar or no scar.

Chandos:

Just going back on to Tinder now just have a look at what my profile looks . do you know what it is I'm in my my first picture on Tinder is when I did like a better fundraising event at uni. And I dressed up as Eddie the Eagle. So I'm like in all the outfits, you can't tell I've got the scars and stuff. And I don't put it in my bio that I've got a tumour at the moment. Sometimes I change my bio and stuff. So it's not like visible that you can see if you scroll through my pictures, I think there's one or two where you can see my scar. They kind of look like those the hairstyles that you can get luckily, so like, sometimes it looks like almost, it's like it's just as that's how he chooses to have it. I think it does say a lot, the way you look and stuff and even like having a face to face conversation with people that when you when you meet someone, you're chatting with them and stuff. And you think maybe oh I could I could ask her out on a date or whatever. And it comes up in conversation. You've got the tumour and like they pity you. They're like, I'm so sorry for you. You'd have to feel sorry for me. No one has the best life but I'm, I'm dealing with what I got. And I'm just doing me and I'm just being myself. If you think you've got to feel sorry for me, that's cool. But I don't need those kind of people in my life right now like

Sarah:

Not exactly dating material is it that's like, that's the worst than friend zones.

Chandos:

And also like, I think my biggest fear is someone sees me out in public, with a girlfriend or whoever. I know think they're like my carer, because that's something I read a lot online is like people who have got physical disabilities, like myself or whatever, then they're out in public with their partner, they are perceived as the carer of that person. To me, I would I feel guilty, my family living with me and my diagnosis. So why would I want to bring someone else into that situation? It's hard. But I think end of the day, the right person will find you. Regardless of whether you got a brain tumour or not like, we will have flaws, we will have things that we can improve what we would want to change. I used to want to change my scars, but now I think they're part of me. So why would I want to change that?

Sarah:

Yeah, exactly.and you've been on and off active treatment now pretty much since 2018. And like you said, You've had periods where you've had no hair and you've had various kinds of attempts at hair cuts over those two years. When you've had no hair. I've seen you when you've got hair now, which your hair looks was lovely by the way.

Laura Nuttall:

Yeah, you see, the thing is is quite tempting to put on pictures of when you had nothing wrong with you and you had lovely long, beautiful hair, but that's not who you are now. And I think it's if you gonna have to, you'd have to come to terms with not having hair, you might as well just put it on your profile pictures because that's what they're going to expect to see you're not going to if you turn up and you don't have any hair and they're expecting to see someone that's got loads of hair. That's never good. But yeah, in general, it's been difficult for me, when my hair started growing back, it grew back as like a, like a Mohican. So only down the middle, not the sides, because that's where I had the radiation. So that was a challenging look to do for quite a while. But yeah, it's growing back mostly, but I have to be quite careful with it because I've still got the bald patches over here. And over here, so I'm gonna take the side that's got most hair and flip it over. But if you find someone and they don't, they don't really care about how you don't care about you hair they care about you as a person, and what you've been through, not what you look like now because that's, that's only temporary anyway,

Sarah:

What's coming through from talking to you both is the starting point, is accepting yourself. That seems to be what your both saying If I can't accept myself and my own, like appearance, or my own diagnosis, how can I put that on somebody else and expect them to deal with it as well, that seems to be coming through from both of you.

Laura Nuttall:

I think we live in a culture now, where you have to look a certain way to be accepted to be part of than the norm in brackets, you got to have the love island like physique. And like you got to look like all the people you see on that TV show. Otherwise, you're just you're not good enough necessarily. I think adding a brain tumour into that as well you are constantly comparing yourself, whether you acknowledge it or not, we all do it anyway. But when you've added a brain tumour to that you've got all the hospital visits, you've got all the the MRIs, or the scans or like all the treatment stuff added on to that. I always used to compare myself who's going to want to date me would my friend who has not got a disability and doesn't have to go to the hospital four times month or every couple of months. Or, or me and they want to come and sit with me in the hospital, and things like that. But I think that's something I didn't need to worry about because like, as Laura said the right person will find you. And like you really need to just believe in yourself and know that you are it's kind of like there's plenty more fish in the sea. I used to hate that saying, when I was a kid, my mom would tell tell me that and I don't believe you like Idonno you're talking about. It is true, like, you'll find somewhere eventually. And it's probably better to wait for that right person than to rush into something and then not feel comfortable. Because then just gonna feel worse. Yeah, as you were saying it's all about image. I mean, the apps that we use now, you basically asked to judge someone just from their pictures. And that can be difficult,

Sarah:

It can be difficult at the best of times

Laura Nuttall:

Yeah

Sarah:

Let alone thowing in a brain tumour.

Laura Nuttall:

Yeah. So you've kind of got to have good pictures. But if all you've got pictures where you don't have any hair, it's difficult to find ones that people actually swipe on you and match with you or

Sarah:

it's a difficult thing, isn't it? Because I think our self worth is tied up with what we look like and what we do. And other aspect is that thing of what do you do? And I know you're at uni, Laura, but I think Chandos has spoken about this before about you're also limited in jobs and stuff because of treatment and all of those kinds of things. And then it becomes that what do I have to offer? I know, I hear that as well. What do I have to offer somebody? You know, why would somebody it's not like I can go and buy a house with them? Or it's not like I'm going to do all of those things, that that becomes the next thing. Do you think longer term when you're dating? Or do you just think in that short term?

Laura Nuttall:

I mean, for me, it's I've not had the typical university experience when all my friends have been going out drinking, going home with people. I've obviously not had that because I've not drinking, I'm not going out and partying because it would just make me way too tired and don't want to be a drag on on my friends. Some of the time I'm just not there because I'm having treatment in Germany or I'm having a scan or I just feel ill.

Sarah:

You are pretty limited to just online dating. really

Laura Nuttall:

Yeah. Yeah. So that makes it interesting when you have to put forward pictures of yourself looking like like you do

Sarah:

it adds a whole new level of challenges. How about you Chandos do you find dating in the real world or online? What's your experience of just trying to not use the apps? Is that even possible in this day and age?

Chandos:

I'm pretty bad at both to be honest, face to face or online dating it's just all of it's a mission with me. When I was at uni and stuff. I think I find it easier to talk to people my first year And then towards the end of that year like I got ill and my confidence got knocked. And so when I went back to redo that year and to finish my degree, like, I think I had a different perspective before then and even to an extent, like, up until I graduated, I was so worried cos I was comparing myself to my friends who were all getting into long term relationships. And because after first year you move out, and you live with people so you'll all move in together, maybe like happy couples, and I stayed in halls and all this stuff, and I was living almost opposite life to them. And I'd go out, but I'd leave early because I panic about being judged in the queue like leaving and things like that. And I think I find it easier to talk to people face to face, because then I could walk away if I was feeling uncomfortable. If I felt like, they were just judging me or something, I could remove myself from that situation, you can do that online, but I think it's, it's easier because you can make jokes about it like, and you can walk away or you can laugh together and then defuse the situation. Whereas online, it's just, you get ghosted, that knocks your confidence hugely. Whereas I think when you're face to face, you can, if they don't want to know or what to say, you can then turn off their body language or like their facial expressions and stuff and you can make that situation less awkward for both of you. Because I don't want to make anyone feel uncomfortable because of my diagnosis. It's stressful for me at the best of times, I understand if you don't want to get involved with that, because I don't, it's hard but it's all fun and games. I remember going on one date, and shaking her hand the end of it because I panicked because like I've never been on a like a proper date before and like, I don't know what to do so I shook her hand and walked away and those little things where like, that gives me inspiration to go and talk to other girls cos I'm like, from someone who shake your hand at the end of the date, it builds that

Sarah:

That's a definite first dates moment that could that's something that would happen on first date.

Chandos:

And it's easier in person, like because I know it's harder with COVID and stuff, but I don't think it will be the same ever. But maybe that's probably a good thing. because not everything works for everyone.

Laura Nuttall:

It's difficult to get across in language, sometimes what you're trying to say. So if you're trying to be funny about something that's not that funny, like brain tumours, they're like, What are you doing? You've got brain tumour, you should be worried about that. But they're not getting my like, jokey element to it. So yeah, it is easiest to get face to face. But I've had some issues like getting my into clubs and stuff, because I don't have a driver's licence because they took that away from me. Yeah, that was not very good. For me. It's been like, doubly tricky, because I am a lesbian and so it's been difficult to find a people that want to go out with me, b people that I want to go out with, because we're such a small minority.

Sarah:

You don't make it easy for yourself do you Laura

Laura Nuttall:

I don't do. But, yeah, I've met someone and she's brilliant. So

Sarah:

That sort of leads us on, if you could both give advice to somebody who's sitting there now and got a diagnosis, just thinking, what's the point? No one, but you know, no one's going to want me no one's going to be interested in me. What advice would you could you give,

Laura Nuttall:

I would say keep going. It might not work the first time or the second time or the third time but you'll get it right at one point and you it'll be worth it when you get it right and you've got to believe in yourself as well that's key, you've got to have some sort of self confidence because if you don't have self confidence, then they're not going to find you that appealing, you've got to love yourself before you willing to; ove anyone else, really.

Sarah:

What about you Chandos?

Chandos:

I feel like my mum here like Laura said, you gotta love yourself. As cheesy as it sounds like that Justin Bieber song like love yourself. Because if you don't acknowledge that yeah you are different, and you are going through a really tough time right now. But coming to terms with my disability and stuff has helped me realise like, who I want to be with or what I'm looking for in a relationship and stuff. And so I know what to look for when I'm speaking to women and stuff like that. And I'm just I can be myself a bit more and be comfortable with who I am. And I think my friend told me like do you at uni like, as hard as it is to be accepted and stuff and in this culture that we live in like of looking a certain way being a certain type of person and being cool or whatever because you have like a six pack or whatever if you're a guy or because I'm not six foot I don't have a six pack all this stuff that I'm told I should have to get a girlfriend and stuff like that. Don't worry about that just be you because we're all made to stand out and to be different and if someone can't accept you for that

Sarah:

Do you think in some ways that it actually could be perceived as a benefit because you can an old saying but sort out the wheat from the chaff if you meet somebody now, and if they accept you with a brain tumour, you can already tell a lot about them as a person, that they're a bit more genuine and a bit more into you rather than just how you look which like you said, Laura, who you are is more important, than what you look like,

Laura Nuttall:

yeah, for me that that shows willing to stand by you even if you're really ill, to stand by you on your worst days, I think that's quite something, something quite valuable in someone you're having a relationship with

Chandos:

It does surprise me though like people say like, they want an adventure and stuff, or they want somebody who's adventurous and like, I have all that, like, my life is an adventure. It's not a good one at times, it's like it's a stressful one. But if those things where like, I try and make a joke about it and stuff, and they don't, they don't, they don't understand it, as Laura said, or something like that but that's okay and like,

Sarah:

You've both had quite unique experiences because of your tumour that actually, you wouldn't if somebody was with you, they wouldn't experience. I mean, there's highs and lows definitely isn't there?

Laura Nuttall:

Yeah, you added a dramatic element to their lives, I suppose. Everyone loves a little bit of drama.

Chandos:

I think even just by getting out there and talking to people, you might not get into relationship with them, but they might become a massive part of your life in another way, like a friend who will be there for you and who can help you find that right person because if they are caring enough to want to be your friend, that's to me that's made more, that's meant more in recent years than having a relationship and being with someone

Sarah:

We do have relationships service, I can put a link in the show notes, so if anyone would like support with their relationships, we can also offer support. Thank you very much.

Laura Nuttall:

Thank you.

Sarah:

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