Latest / Forward Together: The Mesothelioma Podcast / Episode 3: Facing Mesothelioma as a Family
Transcript
- speaker-0: Forward together podcast shares conversations with mesothelioma specialists, real patients, and families with speaker-1: explore asbestos cancer to inform speaker-0: stand alongside you, our listener. Hello everyone and welcome to episode three of our Mesa Thilioma podcast, Forward Together. My name is Megan and I am the community fundraiser manager here at Mesa Thilioma UK. I work alongside the rest of our fundraising team in supporting our incredible fundraisers who raise vital funds and awareness for our charity. today I'm delighted to say I'm joined by Claire Wellpole and her son Ollie. do you want to start by introducing yourselves and telling us a little bit about your connection to Mesa Filioma? speaker-1: Yeah, my name is Claire. I am mum to Ollie and Charlie and Keeks, my three children. Ollie who's on this podcast. And I was diagnosed with mesothelioma in April 25, which is what's brought us here today. speaker-2: Hi, I'm Molly, son of Claire. Here for here for the same reasons. speaker-0: Brilliant. Well, thank you ever so much for joining us. We really appreciate you giving us your time. so I'd like to start by just telling us a little bit about your life and what your life was like before before Misa Filioma. You can tell us a little bit about your family life. speaker-1: Yeah, my kids are all grown up and live kind of in London or surrounding areas in Essex. And I'm based in Devon with my partner, Steve, and our little dog, Monty. And before Mesothelioma, my life was very full. We're very active as a family. But yeah, I would be playing lots of golf, lots of competitions, running lots. We would just... pick up and go off for the weekend whenever we wanted to. And yeah, we just had a very full life really. Yeah, just living our best life really, working hard. had a great job for a company working as a social media manager and also my own business as a photographer. before Mesothelioma, I had all of that. yeah, very different to how that landscape looks now though. speaker-2: Yeah, obviously with Mum down in Devon, family life for us beforehand, I I don't think we were maybe going down quite as frequently as we now are. you know, but but I think the the the kind of the quality time that we did spend together. I mean, Charlie, my kind of middle sibling and then Merc Keeks who's who's the youngest. but as a family as a family dynamic, I think we have such a fantastic family dynamic. I think we're an incredibly strong family unit. and you know, I'm sure we'll kind of get into some of that. But I think life before this was, it was it was typical family life. there was just normality. we enjoyed doing things together, getting out and being active. And it's not that necessarily a lot of that stuff has has had to completely stop. But obviously the the dynamics of some things have had to shift a little bit. speaker-1: It's not knowing, isn't it? It's like planning things. Before you could just plan things and you knew they would happen. now, even before my diagnosis, we didn't even know what was wrong with me, but I was really poorly quite a lot. And I missed Charlie's wife, Amy. I missed her hen weekend. I had to cancel that last minute. I had to come back from our family holiday in France early because I was poorly. I mean, so many things that just... Yeah, you just miss out on and as a family, it's not just me. we all suffer with that. And so that's really tough, I think. speaker-2: actually for our for our wedding as well in Ibiza earlier this year. And I think there was there was a time when we were thinking, is Mum going to be well enough to actually come out and and be there? luckily she was and lived life to the fullest out there as well. but that we were of we were we were kind of planning do we also do something in the UK just as kind of a a backup contingency just in case she's not able to come out. So you know I think it it definitely kind of changes How you plan ahead for things. speaker-0: Yeah, absolutely. So you've told us a little bit about your life before your mesocilioma diagnosis and how it turned your life upside down. so can you tell us a little bit about what you experienced in on the lead up to your diagnosis? did you have any sort of symptoms? What was that like? speaker-1: Yeah, I did have symptoms and actually it took 16 months of having all those symptoms and tests and various other things before I actually got my diagnosis. So it generally started in December 2024 and I got a chest infection and pleurisy and so and just from there in the next six months I had five chest infections and pleurisy. That's what they thought it was. So they just kept chucking antibiotics at me. And then eventually sent me off for a chest X-ray. And then I think once I got under the hospital care, then they started looking into more, into deep things. I had so many tests, so many things. and it would be, yeah, but it's not cancer. It's not cancer. And I would have all these tests and it would be all this like waiting and then, yeah, but it's not cancer. So then eventually the plural consultant I was with at Torbay hospital sent me off to have a biopsy. and that was in, that was on March 28th, 2025, Ollie's birthday, actually. And so I went off to Exeter and had a biopsy. And actually my advice to anybody out there, never have a biopsy with local anaesthetic. Insist on a general, it was the most painful thing I've ever gone through. Anyway, I had the biopsy and then a week later, I got a call. In fact, I got a call the day before I was going in for my appointment and the secretary said, Can you bring somebody with you? So I knew straight away that was not good news. So Steve and I went together, Steve, my partner, and basically, yeah, that's when I got my diagnosis of mesothelioma. So yeah, after 16 months, but I think I don't fit the demographic of being female, younger, because I think, as we all know, it's known as an older man's cancer, isn't it, caused by industry and... working with us best or so, yes, they weren't really looking for that. So it did take quite long to get my actual diagnosis. speaker-0: Yes, yeah. And that like you said, it was such a long period of time from when you started experiencing your symptoms, going through all those tests and then finally getting that diagnosis. can you tell us a bit about that moment you were told, you know, for yourself, Claire, and for you, Ollie, as, you know, a family member. What was it like for at that moment that you did get the diagnosis? speaker-1: Yeah, I think what I knew in the back of my mind, it wasn't going to be good news, but I wasn't expecting, but I didn't even know how to say the word mesothelioma. I'd never heard of it. So I think at the time when I was being told, was kind of, I was kind of like in shock really. And, and they were amazing and they brought in lung cancer nurses to talk me through things as well, but everything was kind of really going over my head. I think Steve was like taking all of that on board and stuff. And I think for me, the hardest thing was when I just sat there and the realization of, my God, tell my kids. Because, you know, they said it's incurable. They said, we caught it early. The prognosis is good. You know, you'll have five years. And I'm just sitting there thinking, I've got five years left. How do I tell my children that? And that's when I broke down. Yeah. So that was the moment for me. And then I had to come home and. I had to tell my kids and that's when they all dropped everything, got in their cars and drove down to Devon straight away. speaker-2: Yeah, yeah, I remember I remember sitting in a meeting and I think I'd had a text from you, and it said, Can you let me know when you're free? I'm gonna give you a call and when I think a lot of people talk about that sixth cent, you you just know I think obviously we knew you were going in for results. Obviously, you know, never would have expected anything like this, but I remember kind of going out and going into one of our our kind of meeting room booths and yeah, obviously you told me and and and obviously, you know your heart just hits the floor. it's it's quite a hard thing to be able to wrap your head around, I think for for all of us. I think my my wife already knew about it and she was already on our way to my work. So she got there and then we first thing we did was we went out a pint because I felt like I'd I needed to needed to put something in my system. and then we went straight over to Liverpool Street to go and see my sister. For both me and my brother, I think through a lot of this journey, both of us have a really protective instinct towards towards our sister. So immediately just went straight over to her. you know, I mean she was she was inconsolable when we saw her and and so decided that actually probably couldn't drive down to Devon then. but so instead we we went down early the following morning. but yeah it's God, it's hor it's horri horrible thinking back to that exact moment. It's just it was incredibly tough. There's been a lot of a lot of kind of highs and lows since I would say definitely kind of a lot more lows until recently. but yeah, you know, I think the that was definitely kind of I think through all of this, probably, you know, as as I'm sure you'd imagine, the lowest point that you can have with this. speaker-0: Yeah, absolutely. And it's you know, it's a lot to navigate, obviously as a patient, but also, you know, as a family together. What really shines through is like you say, how close you are as a family. So that's a lot to to navigate, your diagnosis and kind of what comes next. how has life changed then since your diagnosis? Claire, I'm sure it's been a lot to have your family there to support you. speaker-1: Yeah, they are amazing and Steve, he's my absolute rock. I think for me, I feel guilty because I have to just cancel so many things last minute. I just feel I'm always letting people down. I used to just be able to just do anything and everything and life is really full. Now I never know. I never know from day to day. My mesothelioma is presented with a lot of pain, whereas I know a lot of people get breathlessness. I haven't really had that, but I've had pain. So that in itself is really debilitating. So I take morphine every morning and every evening, and I've been doing that since I was diagnosed. So yeah, that in itself prevents me really from getting in my car and just driving three hours up the road to see my grandson, who's a year this month, a year old this month. they were pregnant with him when I got my diagnosis. So I missed out on so many things where it's just been too painful to hold him. You know, and I feel like don't have my dependence anymore, independence, I should say, of just being able to just go and do whatever I wanted to do. yeah, it takes away an awful lot of things. And I feel like my kids are amazing and they come down to Devon a lot. And I feel like our roles have reversed and where I've always been their mum looking after them. I feel like sometimes it feels to me like they're looking after me and that's not how it should be. speaker-2: Such a I mean it's such a backwards way of thinking as well to feel like you're like you're letting anyone down. Everybody anyone in my family has spoken to is just awestruck by the way that you've handled this, the amount of stuff that you have been able to do across a lot of this. I mean, as I said, I think our our family dynamic is incredibly strong. I think we faced challenges in the past, obviously obviously nothing nothing quite like this, but know, think there's there's there's a real kind of supporting role for a lot of us to play. you as Mum said, I think Steve has has absolutely been her rock through all of this. you know, and I know that we're not down there all the time and I think from, you know, mine, my brother, my sister's perspective, I think knowing that Mum has someone there with her who can act as that that kind of that point of stability is obviously incredibly, incredibly helpful. you know, and all of us are so different. I think when when we found out about this immediately I go into I want to be able to understand this as much as possible. I start researching things. My brother and sister want to do everything that they can as well, from a support perspective. And I think, we we've we've each had to find our own way of of navigating this. But I definitely think that the communication has been one of the most important things for us because I think it's it's is one of those things where you can't really hop beat around the bush with it. It is what it is. And I think it's a journey that we're all going on together. And I think it's painful at times. but but the wins really do feel like wins when they come. And as I said before, it does feel like there's been a lot of lows, but it feels like we got quite a few gut punches, the trials, immunos not having kind of the right effect. those the the side effects that you've been feeling, things like the growth between the scans early on and then obviously things like the the chemo then kicking in and and and doing exactly what it needed to. And that high felt like such a high because you've just spent so long feeling like you're at rock bottom, waiting for something to happen. but I think, it's it through all of that, I think it's it's testament to mum over anything because I think the The approach that you take with all of this has been, I'm gonna put my positive pants on and I'm just gonna project positivity. And if I continue to have this mindset, then, we'll be able to beat this thing. I think the having the positivity going into chemo and then obviously kind of having those results which come back off off the back of it. I mean, you know, I think there is a lot that can be said to to kind of the power of the right type of mindset that comes with this. speaker-1: Yeah, I think I don't really know how to be any other way to be honest. So I've always been quite positive and I was quite overwhelmed at the beginning with so many lovely friends asked me how I was and whatever. And I decided to set up an Instagram page that would just be about my treatment, my journey and all of that sort of stuff. And actually I just wanted to raise some awareness as well, because none of us had heard of it. None of us. And yeah, even though it's not a public account, I set it up for my friends and family really, but I've had lots of people reach out to me with other women with mesothelioma or their daughters, if it's men, will probably be their daughters reaching out and, messaging me and asking if they can follow me and it's helped them. I'm, yeah, so I'm blown away a bit if I've helped somebody else, just, it's just having someone to talk to that's going through the same thing, I think, or having questions and stuff. I think I'm very open. So yeah, I think as a family, we are. very open with each other. couldn't keep anything from them anyway, even if I wanted to. They're interrogating me. So yeah, so we're very open and yeah, trusting with each other and stuff. So I think very lucky. Blessed in that way, have one of those. So yeah. speaker-0: Yeah, and it's very clear, how important that support from your family has been, just having those people rally around you and be there for you, you know, doing their own research and that support is just so important. obviously you've connected with Mesothelioma UK. what sort of support have you found has been useful for you and your family? Did you have much connection with a clinical nurse specialist? How did you find the support that was on offer out there for you? speaker-1: Yeah, right at the beginning, I couldn't really deal with anything like that. So Steve and Ollie were very much on looking at trials, looking at treatments. And I know that Steve reached out to Mesothelioma UK, spoke to Christine Jones, who is a nurse here down in Plymouth. And she gave him loads of information. And actually, she has since, I mean, she's lovely. love her to bits. And yeah, very supportive. And I remember she follows me on Instagram and I put up something, I was having chemo and I was feeling so bad with nausea. And I put it up there on a little rail or something of, my God, I'm feeling so bad with this. And she was away on holiday, saw it, messaged me and said, go in the hospital right now. You don't have to feel like this. There's medication you can have. And honestly, within eight hours, there was a prescription at my pharmacy waiting for me. And you know, she was on her holiday, so. I've, yeah, she's amazing and I follow the charity, obviously on all socials and there's so much information there. And I met somebody recently who told me that she's basically buried her head in the sand over things. And so I've kind of been pointing her to little things and what to do and monthly Zoom calls and stuff like that that we have from Miso UK. and yeah, she said that's really like helped her just. hearing from somebody else who's got it. so the charity's been amazing. I think it just gave us all something. We really wanted to help the charity as well, because I think as we all know, rare cancers, small charities, they don't get the funding like those big charities, big cancer charities. yeah, no, it's been as a family, I think we've all found it invaluable. speaker-0: Yes, yeah. Which is so important. speaker-2: Yeah, for sure. it's crazy to think about still the lack of awareness that exists around it. And but but I think I think also for for all of us, before your diagnosis, mum, I mean we probably would have got our entire lives without really knowing about it, unless more is kind of done from building a lot that awareness. And I think the you know, the the the thing which I think I I I certainly kind of found most helpful. I think I i it's hard for me to speak for Charlie and Keeks, but but I probably can. I think the going to that first patient care a day, the amount of information that is kind of given to you from leading scientists and people's personal experience and you know, I think it's a really good blend of especially given that and and we saw it with the patient care a day recently. There were there were people there who it was their first time actually going and I think, you know, one, you realise that there's a community. You realise that you're not you're not kind of isolated and actually going through a lot of this stuff. but also I think just the volume of information that actually exists there. whether it's from a solicitor side and realizing that actually, the financial element should not be something that you have to worry about given that you've got to do everything you can to focus on, treatment and you know, trying to tackle this thing. but also I think just being able to understand the trials, the treatments, you know, kind of what is at the front line, the cutting edge for this kind of thing at the moment. And it's great to see a lot of the faces that that sit behind trying to drive a lot of that forward. So I think it it helps to be able to build that confidence that even though obviously you'd always want for there to be more which is actually happening and appreciate that, when you're talking about big bodies, it it can it can take a while for these things to move. you can see that things are happening. It's just about at what rate we can get those things moving forward. speaker-0: Yeah, of course. And I think you've both really touched there on how important it is to have the charity and you know what the charity offers, the information, the support there for our patients and carers through our clinical nurse specialists. as my role, I work very closely with all of our fundraisers and we wouldn't be able to offer that support and that information without our incredible fundraisers. And you have also played that role very much so by supporting the charity through fundraising this year, which is it's been an absolute honour to support you with that, how much, you know, sort of awareness funds that you have raised through your various fundraising throughout this year. Can you tell us a little bit about that and speaker-2: Sure. Charlie and Geeks probably kicked me for saying this. But when we first sat down to discuss this, we were talking about what our target should be from a fundraising perspective. And I'm pretty sure a couple of grand was was kind of banded around as, you know, we need to kind of set something which we feel is realistic for people to give. And to to Charlie's credit, he said, No, no, no, we need to go much more lofty than this. And I think he said ten K or so. Now, obviously not in our wildest dreams do we think we'd be getting above what 20K, 21K or so. And then obviously you bring things like the golf day and stuff like that on top of it. really for us, like I I think when you know you're doing something which is gonna have like a direct impact on the charity, you know, as mum as you said. It's not like it's it goes into this fairly bottomless pit where you're not really sure exactly what happens with your money with some of them kind of much larger institutions. you know, I think it is it's not just about the impact that you can generate financially, but everything that you're doing through this, the amount of people you speak to where, I didn't know about this. And you get a chance to be able to educate people, and point people in the right direction to be able to read more of this. And I think, Mum's Mesothelioma, Mama Bear Instagram page is is kind of a like fantastic way of being able to spread that and appreciate it's private. But, you know, hopefully one day that can be public and people are able to actually learn from it. Cause I think there's just there's so much valuable content and I think so much of it is being able to shout about this as loud as possible so that more and more people actually actually hear about this. So yeah, look I'd I'd I'd implore anyone who is who is fit and able to do it to take on any kind of challenge. We did the three peaks, even just to go through one percent of the suffering that Mum goes through on a on a daily basis. and it was it was tough but also just felt like a a fantastic achievement in terms of what we were able to raise, but also the amount of awareness that's actually spread off the back of this is just fantastic. So we're already thinking about what comes next with that. But yeah, we'd would implore anyone who is fit and able to set themselves some kind of challenge. it's it's not necessarily about the amount you raise all the time. I think it's as I said, it's the awareness that you can generate alongside that as well. And the more people who are doing this, I think the more, we get voices heard around the issue. speaker-0: Yeah, absolutely. speaker-1: Yeah, no, I totally agree. I had the easy part of fundraising, just organizing charity golf day. And in fact, have my great friend of mine, Hannah, who organized the whole thing. So she was brilliant. But yeah, as I think we've raised over forty two thousand pounds for the charity this year, just as a family. So incredible. And that just spurs us on to try and do even more next year. and just raise that awareness as much as possible. speaker-0: Absolutely. And like we've said, you are witnessing firsthand how important that support is. Claire, you talked about supporting other patients and being open and being able to talk to people about what you're going through. And I think that really comes across within the mesothelioma community. A lot of people appreciate that opportunity to be able to talk to people who are going through something that others are going through. Is there anything that you wish you'd known that you might perhaps say to somebody who's starting out on their journey and they're finding ways of trying to navigate it? Is there anything that you wish you'd have known or I'd like to share? speaker-1: I think for me, I was quite lucky because I had so much support with the family. But I know not everybody has that. I think just going back to what you saying about some people not very open about things and find it hard to probably even talk to a charity or something like that, go on to monthly calls where they don't know anybody, whether there's something where those of us that are happy, I know there's like Brian, he's always putting his name out there, isn't he? He's always happy to help people. And there are probably lots of other people. Maybe even if the charity had something where it's a little directory where all those people, when they are diagnosed, there's anyone in that area that has it and if they're open to having a call with that person. I think sometimes patient to patient makes it a bit different. speaker-0: Yeah. It's like you say there's been a lot of highs and lows and it's it's those lived experiences, isn't it, that you know, you share with patients that other people can try to understand but they don't necessarily, you know, understand what you're going through. Yeah. speaker-1: Yeah, and I think for patients as well, it's very different to speak to somebody who's got it. can make dark jokes about it almost, do know what I mean? you can't, I mean, I can with my family, but I think, you know, I that's not something everyone can do. And sometimes it's a bit of a release, I think. As a patient, you carry the burden of how what's happening to you affects everybody else as well around you. So yeah, so sometimes probably quite nice to speak to somebody else who's in the same boat. Sorry, Ollie, what were going to say? speaker-2: just gonna say I th I think on on the highs and lows, the one thing which I wish I knew in hindsight was not to pin everything on what do you call the milestones or whatever they are or you know, kind of each event that basically came because I think the emotional roller coaster exists whether you choose to to to kind of reach these peaks and these troughs with a lot of it. And I think was it two trials which both of them, you know, you didn't end up getting you know, or fell on the wrong side of one of them. And every single time this happens, you feel like you've just crashed and you've just, you you've lost again and again. And then the the things that really matter in there is things like the the the growth that's actually happening between scans. And I think when you start to look at things like there's this new trial, this must be it, and you're saying to yourself, it's this or it's nothing, I think the one thing in my head that that that that worried me quite a lot was the closer we get to chemo. I'd always looked at chemo as well if all else fails, you get to chemo. you know, kind of Immuno is the the kind of the gold standard, so so that must be the one that works. So when Immuno isn't isn't kind of doing the job that you need it to, and you're moving to chemo, that felt like a really terrifying step. And I wish I'd known kind of in hindsight. And I'm not saying that the same treatment works for everyone, I think we know that it doesn't, but I think chemo is is is kind of what's working for you at the moment. and so I think I I kind of wish I hadn't necessarily kind of hung my hat on every single thing as we've gone through and try to be a bit more level headed that there's always something else and keep telling yourself that. But yeah, sometimes it's it's quite hard when you're you're just trying to navigate it. speaker-0: It's very different to being in the moment and then, reflecting on it at a later stage, it's it's very different, isn't it? speaker-1: It's all the unknown, isn't it, as well? just don't know what treatment. So immunotherapy didn't work for me, but other people are on it for two years and have great results. Mesothelioma is that cancer that is so different for so many people. We all have different symptoms, different treatments help us all differently. yeah, chemo has definitely been the one that's helped me so far. fingers crossed. Carisondoma. Yeah. speaker-0: Absolutely. Well finally I'd like to ask you one last question, which we ask at the end of every podcast episode, is what piece of advice of advice would you share to help the Mesothelioma community move forward together? speaker-2: probably echo what I was saying earlier. I think that there's probably two things. Communication. I think each story that we share, every podcast that we're on, each charitable challenge and everything like this, it all helps to be able to kind spread that awareness. And I think as a community we need to make as much noise about asbestos as possible for for ourselves, but also for any kind of future people who are unfortunately going to be going through the same. And I think the other thing which I've definitely come to realise is you don't have to be strong all the time. and maybe that doesn't speak to everyone, but I think there are there are a lot of moments where it I feel like I'm I'm I'm taking a slogan from something, but like it's all right not to be okay. it's you know, sometimes you need to have those moments and process it. And I think it it can actually probably do more damage than good sometimes to to constantly just try to to keep it at arm's length and, you know, try to keep everything in check. speaker-1: Yeah, yeah, I think as a community for the actual charity, I loved I went to the ladies luncheon, which I really enjoyed. And obviously, there's Mesothelioma patient care a day where I got to meet lots of people that I'd met on social media, but hadn't met in real life. So that was really lovely. So I think those events are really, really important. And to keep doing those and just try and keep bringing all of the patients and carers together because I think that really helps to hear other people's stories. I think this is great idea doing podcasts as well and I know that certainly I benefit from listening to them and anything related to museothelioma, whether it's around patient stories or new trials, research, that sort of thing. So yeah, I think I would say keep doing what you're doing and maybe more of it if anything. speaker-0: Yeah, absolutely. And at the end of the day, everybody's different. People receive that support in different ways. So it's important that we offer lots of different types of support for people. Brilliant. Well, thank you both ever so much for giving up your time. We really appreciate you coming on our episode three of our podcast. so to all of our listeners out there, we hope you have found this episode insightful. we are here for all of the Mesothelioma community and we thank you for listening. You're fing stint. speaker-1: to get the podcast. speaker-0: We're here to help and stand alongside you. If you need support, please visit our website at www.uk.com for details on how to speaker-1: contact us.