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KEILIGH - Here at Ouch we like to keep it real and be as honest as possible. Yeah, we don’t shy away from the really gritty details, especially when it comes to dating. So this is just a little warning to let you know that the following podcast contains content that discusses sex in a very honest way, and therefore isn’t suitable for little ears or those who are easily offended.

[music]

NEIL - You’re already in that mental state and then you look in the mirror and you look like a fat bowling ball.

Emily - I literally feel like a 95 year old.

Kirsty - God, I miss sex. Like did anyone else want sex during chemotherapy, because I did.

[Jingle: Ouch]

KEILIGH - Hello, and welcome to Cabin Fever from Â鶹ԼÅÄ Ouch. I’m Keiligh Baker. I’m a 30 year old journalist and I love David Bowie, dogs, dancing badly in my kitchen… and I have cancer. Yes, not necessarily the first thing you want to tell someone you’ve just met, especially if you fancy them, but being honest about your condition is just one of the many dilemmas you have to face when dating while you have cancer.

I mean, people with cancer deserve love, affection, sex and someone to binge Netflix with just as much as anyone else, but how do we go about that? Is online dating our best bet? Well, it’s currently our only bet during lockdown with most of us shielding. So, to discuss the brutal world of online dating, and that’s before you factor in cancer, I’m joined by Emily Frost, who at 29 was diagnosed with breast cancer and is still dealing with the side effects of treatment. I’m also joined by Kirsty Hopgood who is 31 and has osteosarcoma and is currently undergoing chemotherapy. Ladies, thank you so much for joining me today. I’m currently in my childhood bedroom in Wales. The glamour of it all. Where are you both at the moment, starting with Kirsty?

kirsty - I’m in my childhood bedroom, as well, in my dad’s house, woohoo, in Oxford, just because when treatment started I needed to be looked after so I moved back here. And in lockdown I think I would have been back here anyway.

KEILIGH - And how about you, Emily?

emily - I’m in my childhood bedroom as well in Farnham. I did the same thing, I was with my parents when I went through treatment and I’m back here during lockdown as well.

KEILIGH - Lovely. So, obviously everyone’s experiences and treatments of cancer are unique, but to put you in the picture, I was diagnosed with chronic myeloid leukaemia three and a half years ago. It’s a lifelong condition but it can be managed. I’d been with my then boyfriend only about seven months when I was diagnosed, and it’s a bit weird obviously, you know, I was like, oh my god, I’m dying, because all I heard was leukaemia, and one of my first thoughts was god, now I have to break up with him, like he can’t be stuck with a cancer-ite like me. But he chose to stay and our relationship progressed and we were together three years and it ended in January.

And so I find myself for the first time single with cancer, and because of the nature of my illness, it’s chronic, I have this for life, I just found myself in this weird rabbit hole of, well what do I do now? Will anyone ever find me attractive again? Am I damaged goods? And I just didn’t know what to do, I didn’t know who to speak to, I didn’t really know anyone with cancer who was my age.

And it was tricky, and I was googling, because I like to read up on things, and there was no advice out there either. And I just thought, well if I’m having this experience I’m sure lots of other people are as well. So a few months ago I started feeling ready to kind of dip my toe back into the murky world of dating apps. I’ve had a few online dates, but cancer makes things tricky. I mean, Emily, Kirsty, I’m sure you can agree, what are your situations at the moment with health and dating? Starting with you, Kirsty.

kirsty - I think I would have described myself as almost like a queen of casual, and I love dating. I, like, saw it as a hobby. I genuinely loved dating, and just before I was diagnosed I was starting something new that I was kind of testing the water in terms of maybe making something a bit more serious. It didn’t work out. I think it’s one of those things where it’s very easy to go, oh it didn’t work out because of cancer, and actually, it’s probably not the case and it might not have worked out anyway.

And it’s accepting the fact that just because you have cancer doesn’t mean that that’s the reason things won’t work. That for me was just quite hard to accept because you can’t help but feel burnt by it, and then so much about you changes. For me it was my looks, because with my chemotherapy I did lose my hair. I lost a lot of weight, I lost all my muscle mass, so not only did my appearance look but all of a sudden I went from loving my job and being really sporty to my interests were sleeping 12 hours a day and I was unemployed. Like, all of a sudden I don’t even find myself attractive so how could I put myself online and expect somebody else to find that attractive?

And I guess COVID was the perfect opportunity for me to go okay, let’s put myself online, test the water, I’ve got thick enough skin to take it so if nobody likes me back or nobody wants to speak to me, you know, worst case scenario is it was a social experiment.

KEILIGH - How about you, Emily?

emily - Slightly similar with me. I actually came out of a relationship about two months before I was diagnosed. I was dumped, so I was already sort of down in the dumps anyway, but in hindsight actually it’s probably the best thing because we clearly weren’t going to work out and I would have hated, A, for somebody to feel like they couldn’t end it because I had cancer, but also I wouldn’t want to go through that kind of part of my life with somebody that clearly didn’t want to be with me anyway. So he dumped me and then I started feeling a little bit unwell anyway and I just put it down to stress and two months later is when I got diagnosed with triple positive breast cancer.

So I went through chemo pretty much straight away, lost all my hair. I kind of just thought to myself, you know what, I’m just going to put myself back on online dating, probably catfish them with old pictures of me without the bald head. I soon realised that actually not dating during primary treatment would probably be sensible, I needed to focus on myself. So I finished in September 2016, my treatment, and I thought, you know what, I’m going to dip my feet back into it, see what’s out there.

And I started talking to, who is actually now my ex, but we were together for quite a while, I was just thinking to myself the whole time, how am I going to tell this person that I don’t have any hair because he only knows me as pictures of my hair, like he’s going to freak out. We’d been talking for a while. He just randomly said about two days before we met, like, "I need to tell you, I’ve just recently shaved my head. I hope you don’t mind." And I was a little bit like, "Oh yeah, me too."

And then that sort of like opened it up and so I could tell him what was going on. And he didn’t run away and we ended up being together for like three years and it was wonderful. But it’s interesting now, it’s kind of like the first time I’ve been single for a while and still dealing with the aftermath of cancer. Like, I don’t look poorly anymore but I still have to deal with the medical menopause.

I’ve recently just been diagnosed with Graves’ Disease as well, so my hair’s starting to fall out again, which is joyful, having spent four years growing it back. Yeah, and I just don’t know whether to dip my feet back into the waters again because I haven’t known me with cancer being single really.

KEILIGH - Yeah, the points you’ve both made have really kind of struck a bell with me as well, and so when you said you don’t want to be with the wrong person during the treatment, it’s so funny, you know, in January when my relationship ended I was devastated, it actually made me realise, perhaps if I hadn’t been diagnosed when I was we might not have lasted as long as we did? I don’t know how much of my three year relationship was me, like, feeling grateful that he hadn’t left. Do you know what I mean? Also the, going back to what Kirsty said about COVID, being in lockdown, there’s nothing to do, and so that was a big part of me feeling better and being able to start dipping my toe back in.

I’ve had a couple of dates online and stuff, and I still have no idea what I’m doing and I keep just blurting out to them in this awful verbal diarrhoea, "I’ve cancer by the way," and they’re like, "Oh, okay." To be honest, I’ve done that twice now and I’ve only had two video dates and with both of them I told. They both handled it really well.

emily - I agree. I have found generally, it’s something we’re so scared about, but people are kind of awesome. Like, people get inspired by it and instead of going, oh my gosh, this person is sick, I don’t want to have anything to do with them, they’re actually, like, "You’re incredible and I actually want to know more about it, like, how have you coped with it?"

kirsty - I genuinely refer to it as like the best online filter I’ve ever had, because I’m quite honest from the front of it, I have put pictures of me bald, pictures in my wig, pictures in my hat, just because for me I’m in treatment. Say I do go for a socially distanced walk with someone there’s no hiding it. I’ve got a PICC line in my arm, you know, I walk with a limp because I’ve recently had a surgery on my leg, you know, and obviously I don’t have long blonde hair anymore. If I’m not honest from the forefront I’m setting myself up for a fall. And I was pleasantly surprised. I would say I get a similar response to what I used to get when I was online dating pre cancer. I’m getting rid of most of the dross.

KEILIGH - It’s the filter we didn’t know we needed. Cancer filter applied. Boom.

kirsty - I have had one person be totally inappropriate. Basically, long story short, somebody mentioned that semen could help my hair, my eyebrows and my eyelashes grow back and obviously that he could help. And I responded to this with, "Already tried it, didn’t work, thanks though." [laughter] And he responded with, "It takes three or four goes." So I responded with, "Does three guys at the same time count?" So, you know, I kind of gave back as good as I got, but you’re there and I was like, do you know what, I haven’t had one dick pic, it’s been wonderful. [laughter]

KEILIGH - I actually had to mute myself then because I was laughing so hard! Outstanding. Obviously at the moment, Kirsty, you’re still going through treatment, Emily, you’ve stopped, but do you think it is best to say it straight away? Will you always do that, even when it’s less visible that you’ve been through cancer, or do you think you should wait a few dates? Like, where do you both stand on it, because at the moment I’m just blurting it out and they’re saying to me, like, "You didn’t have to tell me that," and I’m like, "Because I went to Catholic primary school, I’ve just got this guilt, I’ve just got that, say it, you know. I can’t help it."

emily - I wouldn’t meet up with somebody anyway unless I know that I’d been speaking to them for at least a couple of weeks. You know when you find that connection and all you do is text this person and talk to this person and built a kind of a little relationship up first anyway. And I would never meet someone without having told them. So it may not be like the first thing I say, but it will always come up before I meet somebody.

You know, there are things that I need to be careful of. Before COVID I still have a terrible immune system, I wouldn’t want to randomly meet up with somebody and not tell them that I’m slightly compromised for them to, you know, I’ve had the flu the day before and it would probably make them think about it as well, you know, "Actually, you know what, I’ve got a cold at the moment, why don’t we leave it till next week?" Just for safety wise, and also just because I think I would be so on edge if I hadn’t told them.

KEILIGH - Yeah. And how about you, Kirsty?

kirsty - I don’t know. Because I’m in treatment at the moment I feel like I have to be honest because there’s no hiding it. Like I said, you know, say COVID didn’t exist, I give someone a hug, immediately they’re going to know I’ve got a PICC line in my arm. You know, even if you’re messaging someone, without lying to somebody it’s going to be quite obvious because it’s like every Monday I’m in hospital all day.

But I think in a year or two years or three years’ time would I be upfront straight away? I don’t know. I want to make sure that when I meet up with someone that isn’t an issue for them, because there are challenges it gives you, like potential infertility, so the likelihood is I will be infertile. I need to be with somebody that could potentially handle that, should that happen later down the line.

emily - It says enough about the person if they stick around once you tell them and they take it the complete right way, which is that we’ve had to deal with something that we didn’t want, you know, we weren’t dealt this hand because we asked for it and we are just these superhuman people. The strength and courage that we all have, I think it says a lot about them for not running away, and I would imagine if it got to that point where they were thinking you’re incredible, if they had something they didn’t want to say then… But men kind of hold things back themselves anyway don’t they? But then equally I’ve seen people online dating who are, like, you know, straight off the bat, I’m in a wheelchair, deal with it. And I just think that’s so awesome. We wear our hearts on our sleeves but we do share a little bit more don’t we, and I think men sometimes feel a little bit intimidated by it.

KEILIGH - Well, in that spirit, let’s get a male perspective.

[music]

KEILIGH - Now, Neil MacVicar, you were diagnosed with a brain tumour three years ago when you were just 25. You now work for Shine Cancer Support which offers workshops and practical advice to help build up the confidence so often needed to get back into the world of dating after a diagnosis. But, prior to your diagnosis I hear that you were something of a party boy and was such a smooth talker you didn’t even need online dating to lure a lady.

neil - I don’t know, I had loads of confidence and I was working in hospitality so I would go out all the time and party a lot. It was that sort of world, so I never even really thought about it. I think I had Tinder once, but I was just like, no it’s not for me, I can just chat to people in bars. And then, yeah, everything sort of changed afterwards.

I mean, a real thing that we hear with people who have had a cancer diagnosis is their confidence just goes rock bottom. I just didn’t feel nice about myself, I was suffering from sort of anxiety, depression, and I think having that as well sort of feeds into your cycle in your brain where you’re telling yourself you’re not good enough, that no one’s going to like you. You’re already in that mental state and then you look in the mirror and you look like a fat bowling ball and you’re like, well of course no one’s going to like me. And then it’s even more a sort of… You sort of prove it to yourself when you go on a date and you’ve not really thought about it and then the person’s like yeah, you know what, it was nice meeting you, but no. And then that just breaks you down. And I just started to feel like I just couldn’t and I didn’t know what to do. Really difficult.

KEILIGH - I think obviously it’s such a massively life changing thing to go through. It’s a trauma at the end of the day, and I know that for you you had surgery as well as radiotherapy. Is that right?

neil - Yeah, so I was diagnosed with a medulloblastoma which is a cancerous brain tumour affecting my balance centre. So I had brain surgery, and I’ve got a big whopping scar on the back of my head. And then I had radiotherapy, so the after effects… I’m partially deaf, I’ve got very, very bad balance and I slur my words a little bit. No one ever really notices that but I’m conscious that if I go on a first date someone thinks I’m drunk or something. I mean, with the Scottish accent as well I don’t want people to put two and two together. So I was just sort of self-conscious about that and I think also having the low confidence you feel really self-conscious about these minor things.

KEILIGH - Let’s be real. Dating apps are very much based on first impressions and looks and men probably, and maybe unfairly, get more of a rep for being shallow, and I do think that’s unfair because I’m definitely a little bit shallow, or I have been guilty of being shallow in the past. But have you potentially become a bit more open minded about what you’re looking for when you’re swiping now?

neil - Yeah, definitely. When I first got started on the beginning of dating apps I was using more sort of personality driven ones. I’m 28 and a lot of guys my age, you know, you say, "What would be your perfect woman?" and they say, "Oh…" like they list ten physical things. And I was like all right, okay, like, maybe number eight would be physical for me, but like first of all it’s kindness, understanding and empathy. And that comes before the sort of, I don’t really have like a physical type. But yeah, it’s changed massively, massively.

KEILIGH - It is so strange, the perspective shift. I know, because I’ve told you before, I came out of a long term relationship, before I’d gone into it I would definitely say I was verging on the shallow side of things, whereas now, once I realised I was ready to get back into dating again I sort of wrote down a list. And I was looking at it and number one was kind. Like that’s so important and that’s just not something that… I don’t know how much of that is age and how much of that is cancer, kindness has suddenly gone from maybe like number ten, number 15, to like number one.

neil - It’s a weird mixture isn’t it? With a lot of those sorts of things I tend to fall back on thinking, oh it’s cancer’s fault. But then I’ll do something like my mate will come to visit from Bristol and instead of going out partying all night we’ll have a Chinese and play video games, and it’s like, oh it’s not just me that’s doing this now, it’s like everyone else.

KEILIGH - Yeah, it is interesting trying to work out which side of you it is that’s kind of wanting this. Obviously it is going to have an impact and obviously you need someone who can empathise with what you’re going through because it’s a traumatic experience and you feel the reverberations for years and years, even if you are technically given the all clear. When did you first hear about these dating after cancer workshops that Shine offer?

Neil - I work for Shine now but I was a Shine London member before, so I went on the Great Escape which is a three day retreat that Shine do for 22 young adults with cancer. I’ve still got a note from someone on my bedroom wall that just says, "You’ve got lots to give and achieve. Keep going." Every morning I see it and it’s my wake up moment. From there I started going to the Shine London meetups and discussing it and the network leaders for London, Jess and Claire, run a dating after cancer workshop. So I went to it on the Shine Connect which is our annual conference.

There was loads of tips that I picked up and I realised I was just doing everything in a bizarre way. I was travelling halfway across London wearing a shirt… I don’t ever wear a shirt really unless I have to, then I’d get there and it wouldn’t go that well. And it felt like I’d put like three days of preparation into this thing. So some of the tips that they gave me were treat it like a practice date. Once I started doing that, instead of travelling across London I’d go down to my local pub or down the road and meet someone there just wearing like jeans and t-shirt and just be like this isn’t the real thing, if you know what I mean. So if it doesn’t go well I’m not going to go home and beat myself up and have a little cry and everything, I’m just going to think, actually I’ve got something positive out of it, I’ll take that onto the next one.

And I started doing this thing where I was celebrating the small victories, knowing that I couldn’t go up to someone and just be like, "Oh, you’re gorgeous," but like go on a date with someone and think right, your challenge for this date is you’re going to say one nice thing about this person. And I’d think, right, "Oh, you’ve got a really nice necklace," or "I like your shoes," or "I like the colour of your shirt," something that seems easier to sort of do and then when I’d get home I’d think yes, you’ve done it, well done, Neil, good job.

One of the other tips I took from them is a lot of people are conscious about when to tell people they’ve had cancer. What I sort of learnt from them is there’s no answer for everyone, it’s kind of a personal thing. Some people do put it on the dating app, I would tend to say that it’s probably not the best idea because you might attract some weirdos as well. I always tell people on the first date, just because of the scar and the slurring of the words, but I’ve almost got a script in my head for what I say. I say, "Just so you know what the scar is, I had a cancerous brain tumour. It’s all gone now, I’m fine, but I just thought I’d let you know. Anyway, how about that football game at the weekend," or, "Oh yeah, have you been reading a good book recently?" and just change the conversation so it’s not that big a deal. Then what I’ve realised is through having that conversation you completely open up. I mean I’ve had dates where people are like, "Oh well, I’m honoured you sort of told me that, so I mean something deep about me is I had a car crash when I was younger," or "I’ve got this issue," or "I had an eating disorder," instead of me thinking it’s going to destroy my chances with this person it really opens up like a really great conversation.

So yeah, it’s not all negative. I mean, I’m certainly speaking from a male perspective but a lot of guys maybe tend to be overlooked a little bit because the healthcare professionals think, well you’re a man, you don’t have confidence issues, people just saying, "Oh well you’re a guy, you don’t mind being bald." It was really difficult. And I do think for people that feel like they might be willing to give it a go, practice, practice is key. You’re only going to get that from diving into the world.

If you use one of these apps and set up a profile you have no obligation to message anyone. You can set it up and then take a step back and then in a couple of weeks when you feel ready send out a couple of messages. And especially with girls, they might set up a profile and then think why is no one talking to me? You need to be sending out the messages, you need to be active with that, you can’t really expect people all to come to you all the time I don’t think.

[music]

KEILIGH - So Neil, when we spoke, obviously said that his treatment left him feeling quite unattractive which really knocked his confidence. I think he actually said he felt bloated like a bowling ball, which is a beautiful turn of phrase. Have you felt like that as a result of your treatment? Maybe going to Kirsty.

Kirsty - When I put myself online, yes, I felt really unattractive because I used to joke that I have to hope someone out there wants somebody that’s in a cast and completely bald, you know. I need someone with some fetish for bald women, you know. I even used to joke with my friends, like maybe we need a specific one for cancer, like Tinder but with a C. So we’ll call it Cinder. There have to be some really hot male cancer patients out there that are also really horny and let’s make this happen.

emily - I mean, I’ve always been somebody that’s sort of struggled with their confidence anyway, but my mum would always say to me, "You look amazing bald, you should keep it." I hate it when people say, "You should keep your bald head," like I could say to Kirsty now she looks absolutely stunning with her short hair, "You should keep it," and she’d probably be like, "Yeah, fine, shut up," you know. Why would we want to be like this?

kirsty - I joke about shaving it off now, just because I can’t wait to go and see people and them say, "Oh god, you’ve lost your hair again," and me say, "No, no, this is now a life choice. Everyone told me how great I looked, I just decided to keep it. You were the one that told me I looked really good, what are you talking about?"

emily - Yes. [laughs] Hair aside, I totally understand what he means when you feel like all bloated and horrible. There’s so many nasty things that come with being in medical menopause. I literally feel like a 95 year old. I have hot flushes all night. My joints ache. This new Graves’ Disease means I’m losing the use of my leg. I joked to my grandma the other day actually that she’d probably be able to get up the stairs quicker than I would. And yeah, I wish there was a manual to tell you how to deal with all the side effects from all the treatments, because I am not the same person I was before cancer.

Kirsty- But it would be nice to be able to sit with somebody and just go, "God, I miss sex." Like, did anyone else want sex during chemotherapy? Because I did, like I know lots of people didn’t but I did and like I didn’t have anybody to speak to about that.

KEILIGH - It’s such a strange one. I mean, the medication I’m on makes me fat, like that’s just the way it is, and it doesn’t matter how healthy I eat, it doesn’t matter how much I work out, I’m chinny now. And it’s difficult dealing with those changes because those are the changes that you’re going to be stuck with, like that’s happened. And it’s a constant reminder of what you’ve had. And it’s a traumatic experience being diagnosed and going through treatment and it’s painful and it’s horrible and then when you see those physical changes in the mirror it’s a reminder, you’re not that person that you were before. And you can’t be. You’re a different person. It’s not necessarily a bad thing, it can make you better in lots of ways I think. Yeah, it’s hard having that physical reminder in the mirror, because you’re like, but I feel thin.

emily - I used to argue with my ex about it all the time. He used to say, "Look, you know, you need to be healthier, you need to eat healthier, go to the gym." I was like, "Yeah, I do do all that stuff but you don’t understand, the medicines, that I don’t have a choice, I have to take, have another idea for me and it’s just not what I want to be like, it’s just the way I am now."

kirsty - I mean, this is why I think the cancer filter is great, because someone hasn’t liked you on your profile because of your sparkling personality, they’ve liked you because of whatever pictures you happen to have put on really. It’s why it’s great because that person is actually accepting you for what you are at that moment in time.

emily - I have so much respect for you for putting that out there. I honestly, like when I get off this I’ll probably do the same thing. I’ll be like, you know what, this is actually me four years ago and you couldn’t deal with me then you definitely can’t deal with me now. So I literally love that that’s what you’re doing, I think that’s incredible.

KEILIGH - Has having cancer changed your outlook on what you want in a partner?

emily - Yeah, I would say so. I mean, I had such a specific vision of my life growing up that by 25 I’d have four children. I don’t know who I thought I was, thinking I’d have four kids at 25, but I’m 30 next month and don’t have children and might never be able to have kids and I have to, A, grieve for that person so I want to be able to find somebody that would help me in that grieving process.

kirsty - I think for me it’s you’re trying to not let cancer define you. It is now part of my life but it doesn’t define me, like I still love sport, I’m still going to love to travel when I’m allowed to travel again. I’m still going to love my job when I get back to work. So my interests have stayed the same, so I would say I’m probably still looking for the similar type of person and I guess even before cancer essentially you do… I would say anybody in the world is looking for somebody that’ll stay by their side no matter what.

KEILIGH - I think between the two events, like cancer, COVID, lockdown, it just gets you thinking more and more and it gets you thinking more about what you actually want. And for me, I’ve realised my priorities have changed entirely in terms of who I want. Before all of this I was very shallow, shall we say, looks were always very important to me. I had no issue being the one punching in a relationship, and I think because of lockdown I’ve had the time and frankly, the self-indulgence to be able to sort of work that out in my head and realise that that is so important, you know? So in that vein then, what would be your top tips for someone who’s at home and they’ve got cancer and they’re thinking about getting back into dating?

kirsty - Have the confidence one day to do it and accept the fact that cancer isn’t the reason people don’t respond, and cancer isn’t the reason people don’t like you back or stop messaging you, that happens anyway.

[Jingle: Ouch]

KEILIGH - You know, it’s such a strange one, but having cancer can make you feel so alone and isolated and like you’re the only person in the world that’s going through this. So it’s been so reassuring and helpful to hear all of your stories. Dating is something I continue to find fascinating, so if you want to add to this conversation or even to share some advice for the perfect ice breaker you can contact us in all of the usual ways. Email us at ouch@bbc.co.uk. Find us on Twitter @bbcouch. Or search for us on Facebook with Â鶹ԼÅÄ Ouch. You can also subscribe to the Ouch podcast on Â鶹ԼÅÄ Sounds. And don’t forget to listen to our other strand, Isolation Diaries, where Kate and her wife, Holly, explore what happens once you’ve found the love of your life… and you find yourself stuck with them in lockdown.

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