AfterThoughts: Grief and Healing – Mourning the Old You after Cancer [Transcript]
Host and Guests
Toby Peach (Host)
Alice-May Purkiss (Host)
Charlotte Crowl (Guest)
Toby: Every day, 34 people in their 20s and 30s are diagnosed with cancer.
Alice: On the 7th July 2015, I was one of the 34.
Toby: On the 28th August 2008, I was one of the 34.
Alice: These are the stories of what happens afterward.
Toby: This is AfterThoughts
This series of AfterThoughts is created in partnership with Life Effects by Teva and supported by Trekstock.
Grief and Healing: Mourning the Old You after Cancer
Alice: Toby. Hello.
Toby: Hey Alice. Thank you for that. I feel bad that I haven't done that for you, but it doesn't mean I'm going to do that. But how are you? You right?
Alice: I am good, thanks. How are you?
Toby: I'm all right, thank you. We are here for Series Three.
Alice: Series Three.
Toby: ... of AfterThoughts.
Alice: One, two, three. Like, two days before our one-year anniversary.
Toby: And a special gift that we have been fortunate to be able to record with a special guest, which will be released soon. Well, it will have been released by the time-
Alice: It'll have been released. They'll have already had it.
Toby: They'll be done with that gift. They'll be like, "Give us some more."
Alice: Over it. Yeah. But we're back with the first episode of Series Three, and oh boy, is it a cracker. But before we get into that… The fact that the stay-at-home order has been lifted - that means that outdoor sport can resume. And the fact that outdoor sport can resume means that outdoor swimming can resume. Which means that, at two o'clock, I am going for a swim. My first swim for nearly three months, and I am really excited about it.
Toby: Yes. We can all tell how excited you are about it.
Toby: But it's very exciting for you. And for all those people who are suddenly getting out, who are able to be out in a different way.
Alice: Oh my goodness.
Toby: That moment you're jumping into the water, I'm expecting it's going to be really exciting.
Alice: Well, I'll be walking in slowly because it's less than 10 degrees, and to jump in would be foolish and could potentially risk heart failure.
Alice: So I will be walking in slowly, as is the safe way to enter water when it's that cold. But yeah, I'm super excited. I use cold water swimming for my mental health, and I have really, really missed it. And I don't know, I've really felt this winter lockdown, and I am just... Yeah, getting back in the water. The cold water is like a balm. It's like, the best way to soothe my soul. So I'm very, very excited for my swim in a little bit.
Alice [Cont.]: But yeah, while I will not be diving into the cold water because that would be dangerous, this morning has been fantastic. It has been fantastic to dive into Charlotte's stories of her cancer experience.
Toby: Lovely link there.
Alice: Thank you. And wow. What an incredible way to kick off Series Three of AfterThoughts.
Toby: It is a bit like... I can imagine. I've never done it before. A bit like a cold water swim, I think. You're heading into it, and this is really... the story is just really fresh. It's like episode one, a refresh of AfterThoughts. So powerful, so beautifully told.
Alice: 100%. Just, I was in such admiration of her determination and her power, and just the way she confronts everything. I just felt that she confronts all of the things that she faced and everything she faces head-on. And I cannot wait for our listeners to hear all of these stories and also Charlotte's incredible laugh.
Toby: So let's dive in. Alice will be diving in later, but let us all dive in right now to Charlotte's episode.
Toby: Hi Alice.
Alice: Hi Toby.
Toby: How are you?
Alice: I'm all right. How are you?
Toby: I'm very well, thank you. And I'm extremely excited to say that for today's episode, we are inviting Charlotte to the podcast. Charlotte is a holistic wellness advisor. She's an author, a writer, and speaker. Oh, I just said author and writer. That's kind of like, both the same.
Alice: All right.
Toby: But apparently, I quite like that.
Toby: Most recent book being, The Hidden Truth. And she is a writer as well because she has written for Black Women Rising magazine as a featured writer there as well. Charlotte, thank you so much for joining us. Welcome to AfterThoughts.
Charlotte: Thank you for both having me and inviting me on.
Alice: We are so happy to have you here. Thank you so much for joining us on AfterThoughts.
Toby: So we are delighted because we're diving into Series Three's quick-fire questions, which there's a whole new load of excitement. I mean, I love the quick-fire questions because they're never quick, and really it's just for us to get the most bonkers, crazy responses about people's... who are the humans that we are meeting on AfterThoughts.
Alice: Yeah. Because for us, I mean, this might be a podcast about cancer, but AfterThoughts is about the human before it's about the person who's had cancer. That's so important for us. And that's why we include these often not that quick-fire, quick-fire questions. So, shall we make a start?
Toby: Charlotte, are you ready for the quick-fire questions?
Charlotte: I am ready.
Alice: Born ready.
Toby: Okay. I'm up first, aren't I? I was just double-checking.
Alice: Yeah. You're up first.
Toby: Fantastic. Charlotte, what are your pronouns, please?
Alice: And who do people say that you look like?
Charlotte: Ann Marie one time, which I definitely don't.
Charlotte: But yeah, probably I look more like my dad. And my brother as well a bit, because when my head was shaved, we were like, "We've got the same head." It's crazy. But yeah.
Alice: I love that.
Toby: Charlotte, what film defines your childhood?
Charlotte: Oh gosh. It's not really like a kiddie's film. But all I can think of when I go back to my childhood is, like, you know, the Kung Fu movies, where the speaking doesn't match what they're actually saying? I used to get forced to watch those all the time by my brother and my dad. And yeah, it's like... literally, it made my childhood. And now it's kind of like a guilty pleasure. So yeah, those movies.
Alice: I love that. Kung Fu movies. Fantastic. Charlotte, who would you say your hero is?
Charlotte: Okay. So, I'm going to call myself my hero. Only because of everything that I've gone through. Yeah. I'm literally just going to call myself my own hero.
Alice: Yes, love it.
Charlotte: Because it was pretty heroic, my journey. So yeah. I'm a hero. So yeah.
Alice: And Charlotte, nicknames. What was your favorite? Have you had any?
Charlotte: Oh gosh. I've had so many. There was CC. There was "Squeaks" because I used to have a squeaky voice. There was "Pumpkin," "Peanut," "Munchkin." I got so many nicknames. "Pookie." I hated that one. I hated that nickname. Oh my gosh. My mom used to call me "Princess Pookie."
Alice: Princess Pookie?
Charlotte: Yeah. It was... I don't even know.
Alice: If you had to listen to one song for the rest of your life, what would you choose?
Charlotte: Chronixx. I don't know what it's called, but the beginning goes, "When I wake up in..." Oh, are we allowed to sing on the podcast? [inaudible 00:11:22]. I can't remember the name. I think it's something like I Am Blessed. I think that's what it's called. Yeah.
Alice: That's amazing.
Charlotte: Chronixx, I Am Blessed.
Alice: Great. And this is a big question. This is a really big question. What is your favorite way to eat a potato?
Charlotte: Oh gosh. Probably, I would say, I would chop it up... and this would be a sweet potato because I prefer sweet potato. So I would chop it up. I'll put it on a tray. I'll put some salt on it, some black pepper, some herbs, and I'll just put it in the oven and just make some sweet potato chips.
Alice: Oh, now I really want sweet potato chips. Yes.
Toby: And Charlotte, last question, what was your diagnosis, please?
Charlotte: Stage three lymphoblastic lymphoma or also known as "non-Hodgkin's lymphoma."
Alice: First up, we are going to talk about Beyond a Diagnosis. We tell the stories of our diagnosis so many times, and often this story becomes really rehearsed, and we can roll it out like it's a performance. And we really want to explore the stories of beyond that. We want to hear more about what happens after that moment. So, Charlotte, we're going to hand it over to you now to tell us a story about Beyond a Diagnosis.
Charlotte: Okay. Great. I literally see everything that I talk about in my head like a movie, and then I go back to thinking of what went on after my diagnosis. And I remember my mom dropped me to college. I was studying music technology. And so, first of all, when I was in the car leaving the hospital, I remember my mom and me, we'd gone into a room and we'd just, 20 minutes, basically crying. And I didn't even know why I was crying, but my mom was crying, and it made me cry.
Charlotte [Cont.]: And we got in the car, and she was driving me to the college. And she wasn't really saying much, but I was... I think... And I don't really say I was being naïve that I'd just been diagnosed, but I wasn't in a sad mood. I was in a very upbeat mood. I remember I had Rosie... I had a friend when I was at school who was diagnosed, and she had got to make a wish. And that was actually one of the first things that was in my head when I was on that car journey. I was like, "Oh, my gosh! I can meet Missy Elliot, and maybe she'll help with my producing the music." Or, "Oh, my gosh! I can go on the Oprah show." It was like, "Do you realize you've kind of just been diagnosed with cancer? Because of the things you're thinking of, I'm sure it's not normal."
Charlotte [Cont.]: And then my mom didn't really say much. She was quiet. And I got to college, and I walked in. And that day seemed really quiet. I don't remember seeing none of the people that I knew. It was like, this long walk down the corridor into one of the music classrooms where it had loads of keyboards. And my teacher, I remember he reminds me of a younger version of Keanu Reeves. That's the kind of look that he had. And as I was there telling him what was going on, his face was definitely just in complete disbelief. And I think I could almost feel... I could feel his feelings in my body, and I didn't really know how to react to that. So, to be honest, I just wanted to get out of there as soon as possible, so I could get on with my day. Because like I said, I was in a happy mood. And that kind of made me bring down the tone a little bit.
Charlotte [Cont.]: So, it was a brief meeting. A brief chat. And then it was back in the car to see my friend. And I told her about it, and then I called my cousin to tell her that I had it. And she started crying and then I started crying. And then it was like, "This is going to be so emotionally exhausting to tell everyone." So, I wrote a text and just texted everyone. "Oh, by the way, I've got cancer." And 'till this day, my friends are like, "How could you send me a text that you've got cancer?"
Charlotte [Cont.]: But yeah. Then me and my friend went shopping, and I remember we went to her grandma's house, and she told her grandma that I had cancer. And she made me this really lovely soup. She gave me a massive bowl of soup, which was a red pea soup. So it was a bonus. I was like, "Oh, my gosh." Because my grandparents live in Jamaica, so they're who usually make that soup for me. It was like, "Ah, I've got an extension of my grandparent here, cooking me the same soup." It was amazing. I loved it.
Toby: So next up on AfterThoughts, we are focusing on the Invisible Impacts. So, there are so many things that you might see that somebody who is experiencing cancer is going through, but there are so many things that are underneath the surface and might not be as noticeable. So, that's why we have Invisible Impacts. And it's over to you, Charlotte, to tell your story for this section.
Charlotte: Okay. So, Invisible Impacts for me are definitely going to be based around kind of the things I experienced from my treatment. And when I first was in the hospital, the first few weeks, it was bliss. It was near Christmas. I had loads of visitors. I remember I had Christmas dinner in the hospital. My mom made the food brought it in. All my family was there. It was amazing.
Charlotte [Cont.]: And I remember it was coming up to New Year's Eve, and I was meant to be going raving in London, and the hospital was in Euston. And even I said, "Oh, Nurse, do you think that I could go out raving and then just come back?" And they were like, "No, I don't think that would be a good idea." It's like, "Okay." Like, "Okay." And then they were like, "But you're going to be starting treatment on New Year's Eve." So I thought, "Okay."
Charlotte [Cont.]: And it got to that point. I remember watching the fireworks from the window of the hospital. And I remember, my mom and dad were there with me. And I remember beating my dad at seven games of Solitaire. I'm sure he let me win because he's an absolute pro at that game. So he definitely let me win because he must've been feeling bad for me.
Charlotte [Cont.]: But then my treatment began, and I think that's when things kind of started to hit home. So, I was on a high dose of steroids, and I got a steroid-induced psychosis, which is where... it was like someone else was living in my head. I've later named her "Sharona." And it was like we were fighting over who was in control. And she was really miserable. Really angry, really sad. She was all of my negative emotions, and then I was the happy emotion. But she was mainly who was in control. And it was really scary because... I don't know if anyone's seen the movie Get Out, but it was like that. I was in the sunken place, and "Sharona" was in control of everything. And it took ages before the doctors would listen and change my steroid dose to kind of make it so that I wasn't having these psychotic episodes.
Charlotte [Cont.]: And they finally kind of died down a bit, and I was like, "Okay. Now I can kind of get on with the treatment and focus." And just two weeks before my 18th birthday, I had a chemotherapy drug that ran through my system for 24 hours. And I remember I had gone out to pick my outfit for my birthday. And I came back and had a nap. And then I woke up, and my arm was dead. And I just thought I'd slept on it bad. And I was like, "Mom, look at this." And we were both laughing, like, "Oh, my gosh." And then we were like, "Hang on a minute. Why is it not waking up?" So, I got up to walk to the bathroom, and I was all walking staggered like I was drunk or something. And my mom was like, "Something's not right here. We need to go to the hospital."
Charlotte [Cont.]: So, as we went to the hospital, I think probably within three to four hours, my whole body shut down. I couldn't walk. I couldn't talk. I couldn't even swallow. All I could do was blink. And at that point, I think I was just... I wasn't scared, but I was like, "What's happening to me? This isn't a part of cancer." In my head, I was thinking, "I thought you were just meant to lose your hair and feel sick. I didn't think you were meant to get all of these kinds of crazy side effects."
Charlotte [Cont.]: So, the doctors actually... they were worried. They didn't know whether the cancer had spread to my brain or whether it was the chemotherapy that I'd had. And then they did the MRI, which was really scary because being in an MRI is not great anyway. But when they cage down your whole body, and you really can't move, you just have this crazy anxiety. And they did the MRI, and they found out it was the chemotherapy that caused these side effects. And they didn't know if I was going to walk again or talk again. And it was just from me doing a lot of physiotherapy - hard work. Having to kind of change my mindset and stuff... that allowed me to get in a more mobile state.
Charlotte [Cont.]: And again, I had another time where it happened to me again, because of the chemo and the infection. It caused my body to shut down again, and it took away my balance and my coordination. So, because of this, it was really hard for me because I had become very sensitive to the chemotherapy. And it just kind of just had a negative effect on my body. And I don't say this in an extreme way because it's, like, a one in I don't know how many million chance of it happening. But it happened to me, and for me, that was the biggest invisible impact. Because dealing with cancer was one thing, and then dealing with the whole mobility thing, and being left with a long-term disability, that was a whole 'other thing. And it kind of meant that I definitely couldn't go back to the life I had before in any way, shape, or form.
Charlotte [Cont.]: So, I think there are two massive moments where it was like a relief. One was where I had been on a food tube for weeks because I couldn't speak or swallow properly. And when they finally said to me, "You're going to be allowed to come off of the food tube. You can try some stuff." And I was like, "Yay." And then they were like, "But you've got to start off with yogurt." And I hated yogurt. But when they gave me the yogurt and the first spoonful, it tasted like the best thing I'd ever had in my whole life. After not having food for so long, it's like, when you're on a food tube, you always feel full. And after that was finally gone, and I could actually taste something in my mouth, it was like, "Oh, my gosh. This is like the best thing in the world." And I still hate yogurt, but at that moment, I loved the yogurt. It was great.
Charlotte [Cont.]: Then, I think for my walking, it'd been so many weeks when they were moving my body around. And it was like, "Okay. We're going to try and stand up." And they moved me to the edge of the bed, and they were helping me sit on the bed. And I was trying for a good half an hour. And they were like, "It's all right. We'll try tomorrow." And I was like, "No. I'm going to stand today." And then I gave it one last final try, and I pushed myself up. And I was just there like, "I'm standing."
Charlotte [Cont.]: After so long of having to be laying on my back and not moving, I was like, "I'm actually standing. They said I wouldn't be able to do these things, and I'm doing it." It was like a massive, like, "Okay, this is the first hurdle that we'll go over. There's going to be loads more of these to come." Yeah. It was an amazing moment. I loved it.
Alice: Up next, we're going to talk about Those Around Us. Because we know that while a cancer diagnosis happens to the patient, obviously, it also happens to the people around us as well. This section explores how those people are impacted. And we're going to hand it over to Charlotte now to explore some of her stories of Those Around Us. Was that all right, Toby? Over to you, Charlotte.
Charlotte: Okay, great. So, for me, before I was even diagnosed, I didn't even realize. Me and my family... it was almost like we were kind of living all our own separate lives. But I lived with my mom, my dad, and I've got an older brother and older sister. So I'm the youngest. And everyone was kind of just doing their own thing. Like I said, I was at college, and I was getting along with life. And when the cancer happened, it really just made us all so much closer because you start seeing the value in the little things and just the value in spending time together. And I mentioned that Christmas at the hospital. That's actually one of my favorite Christmases that I've had because it was just the simplicity of it. But it was just so beautiful.
Charlotte [Cont.]: And I think one of the main people I would say there was a great improvement in our relationship is definitely me and my mom. We didn't have a bad relationship before, but I would say there was a lack of communication. And when it got to the point where I couldn't walk, or I couldn't talk, and I couldn't do certain things, my mom was like my full-time carer. So, you know that saying, I think it's, "Once an adult, twice a child?" Well, I'm probably going to have to be like, three times a child. Because when my body shut down, my mom literally had to do everything for me again. And we grew so close.
Charlotte [Cont.]: Luckily, she and my dad, they actually run a business, and she was allowed to take the time out to look after me. But I say she literally gave up her life and put her life on hold to help me out. The strength of how she coped, I never once saw her cry unless we were crying together. She was such a pillar and a tower of strength and confidence and helped me get out of sticky situations or where I fell down.
Charlotte [Cont.]: And there was this one day where we were at home, and she was working from home doing her paperwork, and I was sitting in this seat. And I was just kind of feeling a bit like, "I can't believe this is my life." I was sad. And she was like, "Right. Get up." She was like, "We're going to go on a drive." And really and truly, I didn't really want to get up, but I was like, "Okay." I was like, "Let's go." And I was thinking, “Where's she going to take me? Round the block or something?”
Charlotte [Cont.]: And then we got in the car, and we got on the motorway, and we just kept driving. And then we ended up in Southend. And it was a nice day. It was sunny. And she was like, "All right. We're going to get some fish and chips." And we couldn't find a fish and chip shop nowhere. Not one that she wanted to go to. So we were just driving around. And then we actually ended up going back to where we live, which was in Essex [inaudible 00:29:49] at the time and buying fish and chips from the top of the road. So we'd just gone all the way to Southend, but we ended up eating the fish and chips on the top of the road. But it was just the thought that she had put into... to actually thinking, "Oh, let me do something to cheer her up."
Charlotte [Cont.]: I know there's a lot of people that don't have that support, but I did. I really had amazing support around me. And even with my friends. Yes, you'll hear a lot of people say, "Cancer will definitely show you who your friends are." And a few of the friends, they did drop off. But a lot of them, I've actually become a lot closer to, and I'm still close to now. And it's allowed me to meet some amazing people. And even the women within the Black Women Rising community, who are great support, and they understand the journey, it's just been kind of like a blessing to be aligned with so many powerful, amazing women as well.
Charlotte [Cont.]: So yeah, the people around me, I would just say they are one of the reasons I was able to get through my journey. Because of..., you know when you don't have that strength, but you can kind of pull the strength from others? They allowed me to lean on them in that way. So yeah, for me, that was an important part of my journey.
Alice: Next on AfterThoughts, we are going to be diving into the Lost Conversation section. So, we know that in the cancer community, we are starting to hear lots of different conversations pop up of ways that we are not serving our community or things that the community wants us to be looking at a lot more. And this is an opportunity to highlight those. Things that we need to be having more conversations on. So, Charlotte, it is over to you for the Lost Conversations section.
Charlotte: Okay. So, for me, I think a massive part of my journey that I didn't even realize until years later has to be about grief. And this is to do with myself and to do with others. So, when I was going through cancer, just a few months before I was diagnosed, I remember my sister coming round one day, and she was talking about, "Oh, my friend, her boyfriend's just been diagnosed with leukemia. He's in a hospital up in London. He's so young." And I remember at the time, I heard it, but I didn't really think anything too much of it because I wasn't connected to the person or anything.
Charlotte [Cont.]: Then to be diagnosed a few months later, and be in that same hospital, and actually meet this person and have conversations with this same person who I've been told about months before. And there were so many other people in that ward, from the age of 13 up to the age of early 20s, who I connected to. And there was a good few in particular, and he was one of them. It's almost like there's this unspoken understanding between all of those people; that you know you're all on this journey together. All kinds of going through it. And you just kind of get each other.
Charlotte [Cont.]: And there was him, as well as another young lady. She was my age. And, I always used to say, we used to wreak havoc on the ward because we had our own private rooms. And whenever you had your own private room, you're not really meant to be leaving it because of your immune system's low. But we all used to go into each other's rooms, and the nurse would always be like, "Get back to your room." We were all like this, and we would be like, having jokes and laughing.
Charlotte [Cont.]: And I've almost thought she was even like a reflection of who I was as well. And we got on so well. And I remember the time when my body had shut down, and I was in the hospital, and I couldn't move or nothing. And my mom went and got her and wheeled her into my room. And then she was looking at me, and she started crying, and then my mom started crying. And I'm just there smiling. And she's like, "How can you still be smiling?" And what I wanted to say to her is, "I'm still here." But I couldn't talk or nothing, so all I could do was smile and be like, "It's all good." I wanted her to know I wasn't sad. And we just had this great kind of connection.
Charlotte [Cont.]: And I remember when I'd last seen her, she had gone into remission. And we used to text each other, talking about all the things we wanted to do. Cornwall Boat Fair was kind of a carnival. She was going to have this float. It was going to be like a turn-up. We were going to have a party, sort of thing. And I remember, a few months had passed, and I hadn't heard nothing from her. And I texted her, and I got a reply saying, "Who is this?" And I was thinking, is she playing games with me? Like, I don't think you'd be asking me, "Who's this?" And then I was like, "It's Charlotte from the hospital." And her mom was like, "I'm so sorry, Charlotte. Paris passed away." And my mind was blown because the last time I spoke to her, she was in remission. So for her to just suddenly be gone... I didn't know what to do.
Charlotte [Cont.]: And then the same guy who I'd said that I'd met at the beginning, he went into remission, and then it came back within two months. And within, I think, four months, he had passed away. And all the other friends. Six people I made friends with. They all passed away. And I can tell you this, no one can ever prepare you for kind of dealing with that kind of grief. In fact, for so long, it was just suppressed because I didn't know how to deal with losing that many people at that time. And you can't help but think, "Why are they gone? And why am I still here?" So many of them. I even remember I wrote a poem, and it was about saying I've really died, and they're really still there. I just couldn't get my head around it.
Charlotte [Cont.]: And then there's a whole thing of the grief of losing yourself. Losing the person who you were before you got diagnosed. And you go through so much during your cancer journey that you evolve, and you're no longer that person. And sometimes, people can't even understand you because of the way you change through that journey. It's almost like, "You can't expect me to still be that same person after I've just gone through such a life-changing experience." So, you almost have to grieve losing that part of yourself.
Charlotte [Cont.]: And for me, it was a tricky age because I was going from being a teenager into adulthood. So it was like, I was almost grieving my younger self. To then turn into this mature adult, or I was expecting, I guess, to get on with things. But yet, so much had changed. I'd been left as a completely different person. Even my voice had changed from when I'd lost my voice. I wasn't mobile like I was mobile before, and I used to be a dancer. All of these things, I basically had to grieve the old version of me. And it's something that I don't know if now people can get counseling and stuff over the grief of losing yourself and losing all your friends on the ward, but at that time, I didn't. I just had to go through the motions on my own. And that was... for me, it was a tough thing. And I don't hear a lot of people talking about the people that you lose on the journey. Because of that can really mess with your mind.
Charlotte [Cont.]: So, I would definitely tell my younger self to express more. Don't be scared to talk about your feelings. Don't be worried about making other people feel uncomfortable about your journey. Express it. Lay it out. Because when you suppress it, it will one day come out, and it may come out like an explosion. So it's better to let it come out as you're feeling it. Letting people know - it's really healing. It's really freeing. Even if it's just you writing about it in a journal, speaking to someone you love, or speaking to a complete stranger. Just find a way to express yourself. It can even be through a form of art or dance, or music. But find a way to express things. Don't suppress them.
Charlotte [Cont.]: So, that was how I ended up being an author. It wasn't something I enjoyed. But you see, when my voice got taken away, I had to find some sort of enjoyment in writing because I had to find a way to communicate better. And it was a way where I found it easier to write down my thoughts or write a poem, rather than speaking it out and saying how I felt. So yeah, it was definitely a part of my healing. Because before, it wasn't something that I did.
Alice: Brand new for this series of AfterThoughts is this section: Not Your Average. So, sort of based off the back of the Teenage Kicks section of The Teenage Years [another Beyond Arts podcast series], we are going to talk about Not Your Average. So, this section is a chance for us to explore the things that we as young adults who have had cancer may have experienced, that those who haven't had cancer maybe haven't experienced. So, Charlotte, over to you to tell us a story about Not Your Average.
Charlotte: Okay. So, I think for me, this is all about how my whole journey kind of changed me. And for me to explain that I've got to explain what I used to be like. So obviously, I was 17. I was very... how can I say? Hyper. So, I was very reactive as well. So if something happened, I was ready to... the anger would come out of me, sort of thing. Definitely had a lot of suppressed anger there. I was very ungrateful. I think I was quite entitled. So all the things... I had quite a good upbringing, but I feel like I almost... It was like I felt, like, these things are owed to me. These things should be me. This is how it's meant to kind of be.
Charlotte [Cont.]: And when my body shut down, and it's coming back, I realized how ungrateful I had been for little things in my life. So, even to do with my walking and running. You just become so grateful that "Oh, my gosh, I can take a step. Oh, my gosh, I can feel my hand. I can feel my feet. Oh, my gosh, my hair, it's growing back." You become grateful for all the little things. Whereas before, as a younger person, I definitely was not like that. I took life for granted.
Charlotte [Cont.]: I remember; I used to love going partying underage. I'd use my cousin's ID and stuff. And when I was there in those moments, it's almost like I didn't appreciate them. But even though I matured after my experience, I have to go back and say, "I'm grateful I did those things." Because I still actually got to live those things that I wouldn't have usually got to do until you're 18 to go raving in the London clubs. But because I had the ID, I was able to do those things. I was able to look back and appreciate I was able to live life in a way back then.
Charlotte [Cont.]: But at the same time, cancer definitely matured me. And I even sometimes find it hard to be in certain conversations with certain friendship groups, of how they look at life. When people are complaining about certain things, like everyday things in life. And I know I may still do it now. But at that particular time, it was like, "No. We're alive. We should be grateful." And like, "Oh, my gosh, the sun's shining." You know like, normally annoying people find a silver lining to everything? That's me. I was like, "No." Like, someone will come and tell me something, like, "No, we've got really good weather today, though." Or, "Oh, but you did this, though."
Charlotte [Cont.]: So, I found a way to find a positive in every situation. And I notice that, even though I have mobility issues and all of that, I'm so much happier now because I'm able to see the good things in my life. Whereas before, it was almost like I was just picking out all the bad things or the things that weren't making me happy. Whereas now, my main focus is on the good things and what can make me happy.
Charlotte [Cont.]: So, the whole experience - it definitely helped me kind of learn what to appreciate in life, and appreciate myself more, appreciate my body more. Appreciate my health more. All the time. Not just when I'm ill. You know, some people, they don't appreciate their health. And then they get a cold, and it's like, "Oh, I really wish I could feel better." But I'm trying to be in gratitude for my health in every moment, rather than just when I feel well. So, it's just an awareness of the body, an awareness of the mind, and an awareness of the spirit.
Charlotte [Cont.]: I have this new kind of awakening feel, I guess, and I like being crazy. I like being weird. I like being unique. Because it makes me just comfortable in who I am, and I don't have to try and live up to be like anyone else. So there's no pressure. That's why I'm my own hero. So, yeah.
Toby: So the last section of AfterThoughts is always for us to give an opportunity for us to talk about some of the lighter moments that might happen during an experience of cancer. Because we do know that those happen, and it's really important for us to share those as much as it is important for us to share some of those other moments. So, the last section is Don't Laugh. We're going to pass over to Charlotte. Charlotte, I'm imagining you've got a story for us. What's your Don't Laugh story?
Charlotte: Okay. So, this was shortly after my body had shut down, and I remember it was in April. I remember it was the same day that the marathon was going to be running because it was a Sunday. And my mom and dad were there in the room. And I've got my nose pierced. And my mom went to hug me, and my nose piercing got caught on her jumper, and it got pulled out onto her top. And, obviously, I can't speak, so I can't say, "My nose piercing's on your top." It was so frustrating, right? I couldn't do anything. Just go, "Ugh."
Charlotte [Cont.]: So I was there going, "Ugh, ugh, ugh." My dad was like, "What do you want to do? Go toilet?" I was like, "No." And he was like, "You're hungry?" And I was like, "Ugh." I was trying to point with my eyes. You know how hard it is to point with your eyeballs and be like, "My nose stud. It's on her top."
Charlotte [Cont.]: Finally, she realized it was caught on her top, and they put it back in. But we were laughing for a good half an hour afterward because of the fact that I couldn't actually just say, "No, it's just that my nose stud's just caught on your top." And because it's a whole thing of, like, "Ugh, ugh." It was complete frustration, but it's something that we always laugh about now because it was hilarious afterward and because it took a good half an hour just for them to realize. But yeah, that's my... yeah.
Alice: Also, as a fellow nose piercer - a fellow nose pierced person - number one, I bet that also hurt.
Alice: When it came out. And number two, I can just imagine the frustration and also the hilarity of your dad trying to figure out what was wrong with you. What the issue was. And just it being so far from what your actual issue was. I can totally imagine it. How frustrated you must've been as well. Like, "I just want my nose stud back in so that my nose hole doesn't close up." Oh, bless you. That's a great story.
Charlotte: Have a little bonus story.
Alice: Hey, let's go for it.
Charlotte: Okay. So, remember I was telling you about the psychosis and my whole "Sharona" thing? So, it would kind of jump from me being "Sharona" to me being Charlotte. There was a time in the middle of the night I woke my mom up. It must've been 2AM. And I started singing, and I was convinced that I could sing now. And I was like, "Oh, my gosh." I was like, "Mom, I'm going to apply for the X-Factor. I'm brilliant. This is amazing." She was like, "I think you should sleep on it." I was like, "Okay." Then when I woke up, it was me again, and I was like, "I can't sing, can I?" And she was like, "No, Charlotte. Sorry, you can't." And I was just like, "Oh, gosh."
Toby: What were you singing? What were you singing? Can you remember?
Charlotte: I don't even remember what it was.
Toby: Your mom can remember. She is holding that information from you.
Alice: I really hope it was My Sharona.
Charlotte: Oh, gosh.
Alice: Oh, my gosh. I love "Sharona's" confidence, though. Just her belief in herself. That's kind of a great thing, right?
Charlotte: Yeah. She definitely had some crazy confidence.
Alice: Oh, Charlotte, it's really been absolutely fantastic to have you on. Honestly, I have loved hearing your stories and listening to you unpick your experience has been just an absolute honor. And yeah, thank you so much for sharing with us. We really, really appreciate it.
Charlotte: Thank you both for having me on the show as well. I really appreciate that.
Alice: Oh, you are so welcome.
Toby: Thank you, Charlotte.
Toby: So Alice, there were Charlotte's stories.
Toby: Charlotte's episode, which is kicking us off for Series Three. And what a set story to kick us off with Series Three.
Alice: Yeah. I mean, I am just bowled over by Charlotte, and her incredible stories, and just the way she talks with such eloquence. And yeah, I just think she is a powerhouse. An absolute powerhouse.
Toby: Well, you can tell that she tells stories and writes.
Toby: And she's just good at that.
Alice: Yeah. And I just think it's fascinating the way creative people pivot. When they can't do one creative thing, creative people have to create. And I think it's just really interesting that when she said about the fact that she couldn't do the creative things that she'd usually turn to, she turned to this thing that she previously hated and started becoming a writer. I think that's really fascinating.
Toby: So Alice, I'm going to ask you then, what are your afterthoughts on this episode?
Alice: You know, my afterthought on this episode of AfterThoughts is about this idea of grieving for yourself. And it's something that I've talked about and thought about and written about before. And there's an amazing organization called Life Death Whatever, run by two fantastic women called Anna and Louise. And they have a thing on Instagram, where they get people to write five things. And I wrote five things about being diagnosed with cancer in your 20s. And one of mine was about grieving for yourself, even if you've survived.
Alice [Cont.]: And I just think it's such an important thing to recognize. And I think it's a really important thing for us to know as young cancer, in inverted commas, "survivors," that it is okay to grieve for yourself. And actually, I think it's a really important thing for us to see. That we need to grieve for ourselves and grieve for the people we could've been, and the people that we might've been, and the lives that we might've had, while also recognizing and appreciating the wonderful things and the wonderful experiences that we have had. And just sitting with that and saying, "Actually, that's okay." And I think that's really, really important.
Toby: I think as well, Alice, there's the importance of the process, right?
Toby: And it is ongoing. And like, I'm coming up to my 10-year date since I finished treatment and things. And that yeah, it's still okay to be going through these things.
Alice: Right. It's a process.
Toby: It's a whole process. And I just think it sounds like that is an acceptance of that. An acceptance that it's not just going to be a switch.
Alice: It's that classic thing, isn't it, of healing isn't linear. I think that it's so important to give yourself permission to understand that. And also, I'm so forgiving of other people. And I'm so often like, "Oh yeah, healing isn't linear for them." But for me, "Well, here, it has to be linear for me because I'm different."
Alice [Cont.]: But I read something recently, and it just said, "What makes you so special that you think you don't deserve compassion?" And I think that's a really interesting way of looking at it. And I think that's a thing we should remember, and a thing we should think about. And I think we're often all guilty of not giving ourselves the same space to grieve that we would allow other people.
Alice [Cont.]: So yeah, this is just me saying to anyone who's listening, who maybe isn't as kind to themselves as they are to other people, what makes you so special that you don't deserve compassion? What makes you so special that you don't deserve to grieve for yourself in the same way that you would give others permission to grieve for themselves?
Alice: Yeah. So Toby... Oh god, I'm just yammering on today. Toby, what is your afterthought on this episode of... I'm going to say that again. So Toby, what is your afterthought on this episode of AfterThoughts?
Toby: It's definitely going to be about appreciation for me, and Charlotte's stories about appreciating her health, and not just that starting when you are unwell, and suddenly-
Alice: Oh, yeah.
Toby: I think as somebody who has been unwell, it's definitely something that's in my mind about, oh yes. Appreciating the day. Appreciating the moments and things. But I think she just reminded me in a really wonderful way about how important it is to appreciate these little moments in the best way we can at that point. And today, it's sunny outside, and it's a lovely thought that I might be able to go and enjoy that and leave this space. And particularly, because of where we are in the lockdown roadmap, I am able to leave this flat and get some fresh air, and I remember that that was a big thing a while back.
Toby [Cont.]: And so, yeah, I'm really taking that forward. And particularly as we look at the side effects that Charlotte experienced because of her chemotherapy, and what the impacts of those things are, and how she has come to appreciate her body and appreciate her mind. And I think, yeah, I'm really excited to take that forward from today. And I hope all of our listeners do. And Alice, I really hope you appreciate that swim you are going on today.
Alice: Oh my god, Toby, I'm going to appreciate it so much.
Toby: And we cannot wait to see that Instagram post of you doing that face. And it's probably that face you're pulling right now. That face as you come out of the water, with that joy that you will have. So yeah, I look forward to seeing that. And let's appreciate today. And yeah, I'm appreciating Charlotte's story. So thank you so much to Charlotte for joining us. Thank you, listeners, for coming along with us for the start of Series Three. There are so many great storytellers coming up, aren't there, Alice?
Alice: So many great storytellers. I am super, super pumped for Series Three.
Toby: Yeah. Thank you so much, and we will be in your ears again soon.
Has today’s episode of AfterThoughts has brought up any thoughts or feelings that you’d like to speak to someone about? We really recommend grabbing a cuppa with a friend or dropping them a message. There are also tons of charities out there who can help you if you’ve been through cancer and need a bit of extra psychological support.
Thanks so much to Trekstock for supporting another series of AfterThoughts. Trekstock helps young adults diagnosed with cancer get moving again after cancer stops them in their tracks, and their work is incredible. Find out more at trekstock.com.
This series of AfterThoughts was created in partnership with Life Effects by Teva. Life Effects is an initiative shaped by patients, for patients, to help those with chronic illness navigate their day-to-day lives better. Find out more and read articles written by those living with and beyond cancer at lifeeffects.teva.
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