Three patients share their real-life experiences from diagnosis to treatment and beyond.

In this powerful first episode of Breathe Strong, host and specialist nurse Rachel Thomas is joined by three inspiring guests - Charlie, Doug, and Leslie - who share their deeply personal experiences of being diagnosed with lung cancer and mesothelioma.

From the shock of hearing the words “incurable” to navigating treatments like immunotherapy, chemotherapy, and targeted therapies, they open up about the emotional and physical journey of living with cancer.

This honest, moving conversation is a reminder of the strength in vulnerability, the value of early diagnosis, and the importance of being your own advocate.

Key Takeaways:

• Early diagnosis saves lives. Don’t ignore symptoms or delay getting checked. Knowing is better than not knowing.

• You are not alone. Support networks, whether friends, family, or medical teams, are essential to coping with diagnosis and treatment.

• There is hope. New treatments like targeted therapies and immunotherapy are offering better quality of life and outcomes than ever before.

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Help us raise awareness by rating the show and sharing it with someone who might need to hear these stories.

Putting your head in the sand doesn't help so very much. This, this not doing anything about it doesn't change the fact it's happened.

Going and seeking help gives you a much better chance of, you know, so catching cancer early is really where I'm coming from or even starting treatment.

So yeah, I do think there's that step before where if you're worried at home that you've got something worrying about, it doesn't do anything apart from taking the time away from you of enjoying life, going and dealing with it is much more important. And then absolutely that word as soon as it's out loud is scary. Let's face it, cancer treatment, there are no easy cancer treatments.

Mine's great, but there's still side effects to it. But would I prefer those side effects to not being here? Absolutely.

Hello, welcome to Breathe Strong. I'm your host, Rachel.

BreatheStrong is a space for honest conversations, shared experiences and real stories from people living with lung cancer and mesothelioma and those who support them.

Before we begin, it's important to be clear that the conversations, stories and views shared within this podcast podcast are based solely on personal experiences. They are not intended to provide medical advice, diagnosis or treatment and should not be relied upon as medical evidence or factual guidance.

Always consult a qualified healthcare professional regarding any medical concerns or decisions related to your health and treatment. Thank you for being here. I hope you enjoy our podcast and find it beneficial.

Hello, my name is Rachel and I'd like to welcome you to our podcast Breathe Strong. Today I'm just going to introduce you to patients I have with me in the room here. But first of all, I'll just give you a little bit about me.

I'm a mesothelioma and lung cancer nurse specialist. I've worked at some of the large teaching hospitals in London and have been a specialist nurse in this field from for about 20 odd years.

Although I don't like to admit that because it shows I'm getting old, I really enjoy my job. I've worked with clinical trials, I've looked after patients from all points from diagnosis right through to end of life.

Having also worked in several hospices, I first came up with the dream, I suppose it was of a podcast that is patient led to cause.

I feel that our patients often don't have a voice and I want to bring patients together across the whole of the country to share their experiences because I feel that by doing that we can be really strong and help alleviate a lot of fear and anxiety. Around lung cancer and mesothelioma diagnosis. So I'm just gonna now introduce you to my lovely patients who've come along today.

So the first person I'd like to say hello to is Doug. Hi, Doug, how are you?

I'm fine today, thank you.

Brilliant. And we'll go on a bit later on to talk about diagnosis, but maybe you'd just like to tell us, Doug, are you married?

I am, yeah. I've got my wife, Barbara, three sons, three grandchildren, and, yeah, we're all okay at the moment.

Good. Lovely.

They're very supportive, especially my wife. In fact, I don't think I'd be here if it wasn't for her in the initial stages. So, yeah, we live in our own house.

We've got a nice motorhome which we get out in as much as we can. And, you know. Yeah, we do what we can, when we can.

Brilliant. Thanks, Doug.

Good days and bad days.

Yeah, okay. Thank you and welcome to our podcast. Doug. Hi, Lesley, how are you? Would you like to tell us a bit about you?

Okay, yeah. My name's Leslie. I live in Southeast London, so not very far for me to come today. And I'm single and live on my own.

No children, but I have all my family actually live down in Cornwall, but I have an amazing support network in. In and around London. Actually, my family have been amazing as well since I've been diagnosed. I'm still working.

I haven't been working as much over the last couple of years, but sort of hoping to get back to working a little bit more in the new year.

And, yes, thanks, Leslie, and thank you for coming to join our podcast. So next we've got Charlie. Hi, Charlie, how are you?

Hey. I'm good today, thanks. How are you?

Brilliant, thank you.

Perfect. So, a little bit about myself. I am married to a lovely lady called Maxine, known as Max for the rest of the time.

She's also been a massive support network to me since diagnosis, and definitely prior to that as well. We live in a great army town, Aldershot, just outside with our couple of dogs and a cat. And that's probably it for now.

Sounds brilliant. Sounds quite idyllic.

So I just want to get people's thoughts about, you know, what it was like to be diagnosed, because I think as a nurse, we give these diagnosis.

We sit in diagnosis with doctors all the time, but we actually, I would say, don't really focus, understand it, because how can we if it's not us that's got the diagnosis? So just really Interested to get your thoughts about, you know, what was it like when you were diagnosed with mesothelioma and lung cancer?

Maybe, Charlie, you'd like to tell us first, you know, about that first experience of sitting in that room opposite that doctor and the news is given.

Yeah, I'm very happy to talk about it. For me, it was slightly, probably different to most people's diagnosis story because it was the second time I've been diagnosed with cancer.

So the first time I was at Sandhurst training to be an army officer and I was diagnosed with stage two Hodgkin's lymphoma.

And with stage two, there was never any really mental battle for me in terms of, you know, I did six months chemotherapy and moved on with my life, literally.

Right.

Which I look back on now and just go, not quite sure how I did that, but I did. So this time round, hearing the words stage 4 lung cancer as a non smoker was devastating, if I'm really honest.

It was not a cancer I thought I was at risk from because of my previous cancer history and my family history with cancer.

Genetically, we're more predisposed to certain ones, but lung cancer was not one that we were screening for or prepared that I was about to be diagnosed with. And to hear stage four diagnosis was really quite shocking.

I was a basically fit 44 year old army officer, still serving, just come back off a sports tour. So I was genuinely relatively fit, doing, you know, living life. And then stage four cancer diagnosis and lung cancer diagnosis.

Wow. Wow.

And when they, when the health professional, the doctor, gave you that diagnosis, what sort of language did they, how did they break that news to you?

So I kind of got my diagnosis in a couple of parts, but I'll stick with the oncologist conversation because I think that's probably the clearest for this. My oncologist was excellent, actually.

I have great respect for anyone in this field, to be fair, but this particular person, she took 45 minutes, she went through the PET scan at detailed level with me and my wife. What I didn't mention earlier is my wife was a combat med tech in the army and I come from a medical background.

I am not medical, but I come from medical background. So actually I want to know the detail almost straight away and for me that helps me understand what's going on. So she was brilliant.

She took us all the way through the PET scan. So PET ct, she took her time getting my story.

Because of the previous Hodgkin's, there was querying over whether I'd previously had radiotherapy or not for various reasons, I hadn't. There was the smoking history questions and different bits and pieces because at this point we didn't know it was a mutation driven lung cancer.

So all of that detail at the beginning is so important for the care team to be doing the right tests.

So post the diagnosis of non small cell lung cancer, there's various different versions of it and depending on your history, can sometimes depend on what version you have.

And so for me, I was, once you've been told stage four lung cancer to then be told you've got a mutation driven lung cancer and there's actually a targeted treatment for it, that's actually good news in this whole sphere of life by the time you're in this bubble. So she went through the tests that were still to come.

Okay, so there was some hope there for you because.

Yeah, definitely, definitely.

So the words that all of us have heard as a stage 4 lung cancer patient is incurable, inoperable, but with that onco driven gene, I then heard the word but treatable for now.

She also left the door open because as a stage four patient you're generally not given surgery, but she also left a slight door open for me, which was at the moment, and I remember those words because it gave me from the outset a bit of a. Almost an earworm, a brain worm to hold onto that. So it's not operable for now, but we'll see how the treatment goes.

Okay, Brilliant, Brilliant. And Leslie, from a mesothelioma perspective, what do you remember about your diagnosis? I mean, you're young; meso potients tend to be sort of older.

So how was that for you?

Well, for me, I started off, obviously, first they started throwing around things like could I have TB when I first went to the hospital, obviously. Cause my lung was full of fluid and first they had to drain all of that. And before they sent me for my biopsy, they did. They.

They started asking me if I'd ever had any exposure to asbestos. And I said, well, I don't know, you know, I had no idea. And had I heard of mesothelioma? And no, I hadn't, obviously.

And then of course, then you go, go away and you Google it. Which is one of the things I'll say, don't ever do that. And that's when I obviously saw that mesothelioma was a type of cancer.

And that's when I was sent off for my biopsy and I was given diagnosis by my surgeon, actually. And I actually did have my parents with me. Right. Because they said they wanted to come with me just in case.

And I was actually given quite a lot of information and I was quite, I was okay with the way my diagnosis was given to me, apart from, obviously, when you're told that it's an incurable cancer. I wanted to be given that information by myself. I didn't want my parents with me in the room. And then I told them to come.

Cause I know what my mum's like. She's a bit of a crier, bless her. And I just, I just, I, I think I knew before I was told that I had it, that I had it.

I don't know, it was just a, it was just like a sixth sense kind of thing. And I don't quite know how I, yeah, how I, I think I went away feeling quite numb, to be honest, and I needed to know a little bit more about it.

Obviously they start throwing around asbestos and, and that was a thing we couldn't get. You know, where did I get it from, you know, and how have I got it? And obviously, yes, being, being a female, obviously. Last year, how old was I?

I was 50, 53 when I was diagnosed. And you, you know, I'd.

Literally the year before I'd done a 36 mile walk and, you know, fit and healthy, go to festivals, you know, used to being, being really, really active in my life.

To go from being active to not being able to do anything at all, not being able to walk up the stairs at the tube station was quite distressing for me.

But, you know, you just, I guess if, if I can give anyone any advice is to, to not look for Dr. Google or not, not google mesothelioma because there's not a lot of positive information online.

I mean, you know, a year and a half from my diagnosis and I'm still feeling fine at the moment, so I'm trying to sort of take the joy from every moment that I can at the moment.

Good, good.

And just talking about that, you know, I hope you don't mind me saying that you are slightly older than the girls here, but, you know, had you heard of mesothelioma before?

No, I hadn't heard of it at all.

No.

No.

I mean, my diagnosis started with I had a pain in my left shoulder which we went to the doctors and they sent me off for an X-ray which never did get the result, unfortunately, but they thought I'd got a cracked rib.

Right. Wow.

So that's what they were, you know, treating. Excuse me. But it got so bad that my wife took me to a e, to a different hospital, sort of 2:00 1 morning, had X rays, a scan and the usual things.

And then off to the next day. They phoned up and said they'd found something, could I come back again.

So, and from there I was referred to the respiratory department, which were very good. They tested just about everything.

You know, did I smoke the same as the others, which I had done until I was about 30, but my actual lungs, he thought I'd never smoked. So the actual inside of my lungs were. But perfect, really.

Then from then on, they sent me to the oncologist and as soon as I mentioned, I've been in the motor trade all my life. Asbestos from the brake shoes and brake linings and clutch discs and what have you.

Then the next time I saw him, they, they said, yeah, you've got mesothelioma. And we, we both looked at him and looked at each other and thought, you know, what's that sort of thing? And he.

And his next words were, it's not operable. So, you know, I thought that was a bit, it was a bit blunt, to be honest.

And, yeah, things just went on from there, you know, we, I, I was a bit numb. I think the wife took it worse than I did. And of course, when we told the boys about it, you know, individually, we didn't.

They weren't all in the same place at the same time. I think two, one in particular was really, you know, upset worse than what we were, I think.

Right.

And then, of course, the more you learn about it from the oncologists and the nurses, etc, you just realize you've got it and that's it, you've got to get on with it.

Yeah.

At the same time, he more or less, he said, well, you can have immunotherapy or chemotherapy. I thought, well, we've never heard of immunotherapy. But he didn't really explain much. He just wanted there and then for me to say which one I wanted.

And was that in the same appointment where you'd just been given this diagnosis?

It was, yeah.

You got given this massive diagnosis and then they started straight away talking about.

What treatment did I want. Yeah.

And was that the same for everyone?

No, no, no.

The oncologist, I don't want to be rude or anything, but I don't think he was the best at the time. Luckily he left and we got a new one and she's absolutely brilliant. Got time for you.

You know, every time I go in after I've had a scan now, she'll sit there and talk to you. And if she, you know, if it's a phone consultation, she's on the phone, then you can ask her anything you want. And she's really brilliant.

I'm pleased with that.

And just thinking about diagnosis, I know a lot of my patients say when I go and visit them at home, they talk about. They can't remember things. So I'll have read clinic letters and know that information's been given.

But, like, I'll sit in the house and I'll say, so, you know, what type of mesothelioma or even what type of lung cancer have you got? And patients will say, what do you mean, what type I've got lung cancer or I've got mesothelioma.

Did you find when you had to tell your family that there were bits that you couldn't remember that maybe when you went back into the hospital, they said, oh, we told you about this last time, maybe, and you thought, well, I don't remember.

No, he just said I'd got mesothelioma. He didn't say what type?

No, no, I was, I was told, yeah. And I sort of, I think I tried to write it. Of course you can't spell it. Is it epithelioid? Epithelioid mesothelioma? And I was like, oh, my goodness.

For you to say, exactly, exactly. And then it'. It don't ask me to spell it, though. So.

Yeah, but no, I was, I, I, if you can say lucky, I've been quite lucky down the line with, with all the people that I've seen, to be honest. And I've, I've been quite clear in that I've always taken a notebook with me.

I've either had a friend with me or a nurse has come with me to every appointment. So I've been quite lucky in that respect. But I've always.

Yeah, I've, I've, I've, I've sort of written down and I've made sure I'm quite clued up on everything that I've got and what road to go down, really.

Yeah, yeah. Charlie, what about you? Because, did they explain, you know, because to me, the words, oh, you've got a lung cancer that's got a molecular mutation.

I mean, we trip those words off our tongues all the time as healthcare professionals. We blindly think that everybody knows what we're talking about. But was that explained?

Because I can imagine, and I'm just saying Imagine, because I don't really know. Did you understand what the heck they were talking about?

I did, but I don't think it was because it's explained to me so that I basically had a week knowing I had stage 4 non small cell lung cancer, adenocarcinoma, but we didn't know what the cause of it. Not the cause, wrong word. But what the type. So whether it was or wasn't encode driven.

And so in that week I then started to research and I, I smiled when you said about don't Google. Yeah, that it's true. But equally for me, not knowing is almost as bad as knowing.

Yeah, but you do delve into a world you do not want to be reading about. But that helps me. It might not initially, but then my brain kind of calms if it's got.

So even if it's facing the worst news, it's almost better if it knows it. I can't quite describe it.

I get that as well. I, yeah, I was, I was actually talking to a friend about this the other day and, and we was, if, if, if, like I say, don't, don't Google it.

But you know, she said, you know, that's the first thing she did was she googled it.

Yeah.

And she was like, oh God, no, we need to go and do all the things that you need to do in your life now. Because she thought I was going to be gone in six months time.

There was.

As did everybody.

Yeah, yeah, exactly.

Before we knew that mine was onco driven and before we knew there was a targeted treatment for it. So I have stage 4 EGFR positive cancer, exon 19 deletion.

And in that week I'd actually searched almost everywhere and any link to lung cancer, non smoking lung cancer, different bits and pieces. And so that week I became almost an expert overnight from a patient perspective on mutations and which one had treatments and which didn't.

And I actually had a phone call from my oncologist. So I'd been in clinic on the Wednesday afternoon and my tissue sample.

So I was diagnosed by a needle biopsy and the needle biopsy was then looked at but actually came back with no mutation. The first part, the second part I've since found out came back with egfr. And so when I was in clinic, the first part had come back with no mutation.

Right.

And they actually booked me in to start chemo on the Monday.

Okay.

So this was a Wednesday, started booking me in for chemo. I went home with a prescription for folic acid in preparation to try and get.

As you know, I had four days, but to try and do everything I could to get ahead of chemo starting. And then that night, I received a phone call in the bath. Half past six after.

After hours, the oncology team had been ringing and ringing and ringing the lab. Luckily, they'd done what's called a PCR hotspot test.

And I also had a ctdna, so a blood liquid biopsy done and both of those came back with EGFR positive, which then meant I. I didn't start chemo, I started a targeted therapy. And the difference in those two things is dramatic.

Yeah.

So.

So that must have felt immense relief, in a way. Was it that. You've got that.

I've got a photo. I've got a photo because I was in the bath. I was also trying to celebrate that night.

So I was about to leave the army and one of my wife's best friends, Liana, was also leaving the army on the same day. And this is one of those sliding doors moments in story. Liana was with us. She'd had a job interview that day. She'd got the job.

We'd come home from oncology, didn't know where we were. I was looking down the barrel of starting chemo. We sat around the dining table.

I'm trying to get into that positive mindset to celebrate for my friend, and I couldn't. I was in a very, very dark place that night. So I took myself off to the bath because it's my happy place. Water.

And I was in the bath and I was actually having a very long conversation with my sister and the oncology team trying to ring. I didn't know that.

So I was chatting away to my sister, offloading, let's say, and my wife was banging on the bathroom door, going, you've got a phone call. And I was like, I'm on the phone to my sister. And my wife was like, you want to take this phone call? So she came in, gave me the phone. It was the.

The wonderful doctor that had taken so long the week before, telling me the. And as soon as she said, EGFR, Exxon 19, I knew there was a treatment for that one because of the reading I'd done.

So from that moment, and there's a brilliant photo of me in the bath, like, celebrating the news that I'd got egfr.

It's amazing the difference there between your thoughts about having to start chemotherapy and all of what's associated with that, and then to have that news, to have a treatment that can potentially give you a really better outcome and life expectancy must be.

I can't describe it. And I was chatting to some people the other day in a.

In a group, and it's around like, I have done six months chemotherapy before, but even that chemotherapy was six months. There was an end state, and I could mentally fix on that end state.

Okay.

But I think the fright for me with chemo, with stage four lung cancer is there's no end state to that. That's the treatment you're going on to. And the amount of difference chemotherapy versus the treatment I am on in life.

So I literally take one tablet a day anywhere in the world so I can keep traveling, I can live my life, I can thrive, not just survive. And it's such a big difference. And I. I am also very lucky.

There are side effects to this treatment, but for me they're more than manageable with, you know, normal, I'd say everyday drugs, not quite that simple. Again, stage four cancer life, everything becomes normal, which to most people would seem absolutely crazy.

But, you know, the side effects for me are really manageable and I'm able to live my life.

Brilliant. Brilliant. And what. So in mesothelioma, we have to start with immunotherapy. So what's been.

You know, when you were told that you were going to have immunotherapy treatment for you, Doug and Leslie, what was that like? Did you understand what those drugs were? And.

No, not really.

But to start with, actually, I had 10 sessions of radiotherapy down to Southend Hospital, to which was supposedly to shrink it a bit because the pain in the shoulder, excuse me, was it was pressing on a nerve. And So I had 10 radiotherapies, which after about the second or third one, started to ease the pain.

But it was very difficult because when you have radiotherapy, obviously they put you in what I used to call me straight jacket, and you've got to lay still.

Well, of course, this shoulder kept all the time, so I had to have liquid morphine every time I had the treatment for the first three or four, and then after that it was okay. But. Yeah, but no, I hadn't got a clue what immunotherapy was really.

It's just that we chose that over the chemotherapy and it seemed to work okay, good.

I wasn't really. Well, I wasn't really given a choice in that. I was asked if I wanted to join a trial.

Right.

And I ended up getting the sort of standardized treatments I think they call it. Is it the control arm or Whatever, I think, anyway, I ended up getting the standard immunotherapy treatment.

And for me, I went away and did all my sort of research on it and just sort of, you know, I was aware of certain side effects, and I. Unfortunately, my first round of it made me quite poorly. So then they had to sort of stop it after the first one. And so I stopped it for goodness.

A good sort of six to. I don't know, a good couple of months, actually. And it was touch and go whether they were gonna actually start any treatment again.

But then they did, and then I sort of carried on with that for good. I think nearly good 8 to 10 months, I think it was. But then it stopped working.

It worked to start with, it started to shrink it a little bit, and then it stopped working. And then I was told that they were going to start me on chemotherapy.

Okay.

So I was okay about starting the chemotherapy, actually, because the immunotherapy, I ended up with quite bad side effects on mine. I had crippling arthritis for nearly. Yeah.

For the whole time that I was on the immunotherapy, which meant that me and my active life, I couldn't do anything. I was quite depressed, actually. Really depressed. But as soon as I started the chemotherapy, completely cleared the arthritis up.

So I've actually just stopped the. Finished the chemotherapy a couple of weeks ago. Fingers crossed. Nothing for a while now. So, yeah, we'll wait and see.

I think this immunotherapy, a lot of people do react to, if they have the two drugs to start with. I mean, I did after the first one. I was covered in a rash, as you know, Rachel, which I've still got. They never get rid of it.

And after the third one, I was so ill that I had an oncology appointment and the wife took me in in a wheelchair. I couldn't walk. I lost about three stone. I was in bed, you know, for. For about eight, six to eight weeks.

If I never see another banana smoothie in my life, it'll be too soon.

Oh, bless you.

But she's brilliant. She used to come in every hour and wake me up and feed me.

Oh, my gosh. You're that poorly. Wow.

Yeah, Terrible. Yeah. And that went on for about eight weeks, I think. But obviously they stopped the treatment. And when I restarted, it was just on one.

Okay. Which was better.

Yeah.

And I finished my two years treatment. January, this year.

Oh, wow. Congratulations.

Just a scan every 12 weeks.

Brilliant. Brilliant.

And I just had the last results, and it's still stable.

And just thinking back to going back to diagnosis.

One of the things that a lot of patients used to say to me is if they didn't come with family members, a lot of patients do come with somebody, but they might have children at home or other relatives at home.

And one of the, I suppose angsts was how on earth do you tell your relatives, your friends that you've got a cancer, it's not curative and without them suddenly treating you differently, I mean, what was your experience of telling friends and family about your diagnosis?

So the hardest thing was to tell my mum, if I'm honest.

However, there's a slight silver lining reframing with this because I was actually diagnosed with the stage four lung cancer because I'd coughed a blood clot up and so I was, I went to my gp, my GP was excellent. Again, knew my family history and my history. I described my symptoms and I'd had some extreme shortness of breath, but only on exertion.

So I looked completely normal. Looked normal, wrong word, looked completely healthy.

I'd just come back off holiday, so I looked, you know, tanned, absolutely fine, walking down the corridor etc, but I found that walking one flight of stairs and I was at height at the point, so I was up a mountain, not very high, but up a mountain. Walked up one flight of steps and I almost couldn't make one flight of steps and yet I was walking on the flat, I was literally going hill walking.

So it was very, very odd.

And I actually consider myself lucky that I coughed up this blood clot because the shortness of breath I'd logged, I was going to go to my doctor but it probably would have taken me longer than it took. So I, I went out to visit my sister in Spain, had this shortness of breath, thought I need to speak to my doc, flew back in on the Friday night.

On the Saturday morning I was in the shower and shampoo in my hair. All the rest of it coughed and it must have felt weird.

I coughed up into my hand and because I had shampoo in my eyes, it actually looked like a caterpillar to me. And I'd been out in the back of these mountains walking, so I was like, maybe I've got something weird.

Anyway, put it in the sink, carried on with my shower and my wife came in the combat medtech army and I said, don't wash that down the sink as I'm finishing off my shower and she looked at it and said, charlie, that's a blood clot.

Did she?

And because of her profession, she had access to a few doctors on WhatsApp. So took a photo, she dissected it, sent some photos to a very good friend of ours who said, yeah, that does look like a blood clot.

You need to go to A E. Oh my God. We had places to be that day. So we went, we went to our friend's, dine out up in Catterick.

So Guildford to Catterick, Catterick, back to Guildford on the Sunday, and I went to see my medical officer, my GP on Monday.

Wow.

Who did some standard tests, all came back completely normal, but said, if you don't go to A E, I'm not going to sleep tonight. So I literally went straight to A.

E.

And this blood clot, I mean, I'll jump into this now. But ultimately A and E did not diagnose me.

Okay.

Because I was young, 44, non smoker, I did not meet the protocol for them to do a CT scan, or at least that's what I was told on that night. So because I was a non smoker and under 50, they would not do a CT.

So even though you'd coughed up that blood.

Absolutely.

Because of those, that demographic, you weren't considered to be cancer risk.

So they did, to be fair, they tried to do all the checks for a dvt, so they did a D dimer test, they did a chest X ray, they did an ecg, all of these things came back normal.

Okay.

And I need to do a PALS complaint. To be fair, I've not done it yet, so that's my fault. But ultimately, the more I think about this, the more I'm going.

But you didn't need to check for thrombosis. I'd coughed up a blood clot, but they were still doing all of the tests and they came back completely normal.

And the chest X ray I was told was actually clear, but 12 hours later it was actually seen. There was a shadow on that chest X ray.

Oh, my God.

It took them three weeks to phone me back to get me back hospital. But when they did the. When they then called me back to do a chest CT, I had multiple bilateral PEs.

So I had a large number of blood clots in both lungs, like more than they actually bothered to count. So I said, I keep saying I was, you know, relatively fit. I've always been very chunky.

I'm a rugby player, you know, front row, so I don't necessarily look that healthy. But actually I've got a very much newfound respect for my body's fitness going through this journey.

Yeah.

Because it literally kept me. I was almost certain you're right.

You are right. Absolutely. I feel the same.

Yeah.

As well. If I, if I wasn't as sort of fit and healthy at the beginning.

Yeah.

Having that amount of. Because I went in, obviously with breathlessness, and they sent me for a chest X ray straight away.

And that's when they said, oh, you need to actually, they actually didn't give me the results right away, which was. I don't know why they, they left it a week. I had to phone back and tell them.

They said, oh, my goodness, you actually need to get yourself to A and E right away.

Yeah.

Because your lung is completely full. Your left lung is completely full of fluid. And then they actually sent me home because it was, because it was Easter week, Easter weekend.

They said, well, there's no one here to drain it, so we're going to send you home, but if you get worse, come back in again. So I actually went back in again on the Monday and that's when they admitted me. And they, they.

Over the course of about three or four days, they, I think they drained about three and a half liters of fluid from me. And, and that's when they kept me in. And they did that. I mean, they were very good. They did do. They did loads of testing.

They sent it off to, they sent all the samples off to the labs and stuff. And that's when they started throwing around, around the mesothelioma.

But, but the family in the family and friends, obviously at that time, you know, we weren't even thinking cancer related. We thought, we thought tb because I did a lot of traveling when I was younger and apparently it can lay dormant.

That can lay dormant for about 30 years. So we're thinking, okay, well, maybe when I was traveling around Asia and stuff, I picked up some kind of weird disease.

Yeah.

And this is what, this is what it is. But you know, my family were like, well, they were quite blase, actually. Not, not in a bad way. But they, you know, we just didn't think it would be.

Be that at all.

Okay. So kind of you were thinking of other things, both of you, similarly, but not thinking, oh, my golly, is this cancer? Yeah.

When I researched the reasons for coughing up a blood clot, unfortunately, my little internal radar started to go off. And as I said, this is my second cancer journey. So. Yes.

And that's actually almost why on that Monday night when they said, there's nothing wrong with you, go home, I was literally skipping out the door because.

And, and this is Actually quite an important point when you're told by a healthcare professional there's nothing wrong with you, you then start to go, I must be imagining my symptoms. And also 44 year old female, you start to go, it must be perimenopause because there are so many symptoms to that.

So I was like, right, okay, I don't get them. And it's so I. And I apologize, I didn't actually answer your question.

When I was chatting to my mum to tell her my diagn, that was the one thing I could actually say to her is, mum, this could be so different. Remember I'm here telling you this and my mum is a nurse, my dad was a doctor.

Wow.

So to know that I'd got all of these pulmonary embolisms and actually, thank goodness none of them had moved, none of them had blocked anything off. You know, I was lit. And I am, as you see today, completely again, fit and healthy with a, a stage four diagnosis. But fit, healthy and able to say.

That is a lot of it. I mean, we used to walk, you know, miles every day.

I mean, yeah, we've cycled around most of France and we used to cycle ride a real lot, you know, but four to five miles every day we used to walk.

And it's important, I think it is very important.

Yeah.

To keep that.

And we still do walk every day.

Yeah.

She puts me lead on and takes.

We like that, we like that. And I suppose for maybe for some other patients who may not be so fit, they might not really cotton on. Do you think that.

My advice for them is you might not be fit now and you might not feel like it, but start. Yeah, yeah, start what you can do now because every day will get slightly better.

And I know that sounds really almost like preachy, but there's more and more evidence out there that exercise helps the body.

When I was really, if I used to get up because I used to play in the, in the lounge and watch the telly between going to sleep. Every time I got up to go to the toilet, she made me walk around the dining room table.

Yeah.

Twice, but once to start with.

Yeah.

And then twice. And then when I come back I had to walk back around it again just to, you know, and she gradually.

She's like your personal trainer and Doug.

You'Ve said it a couple of times, do what you can when you can.

Yeah. And you know you can't do it, don't do it.

Yeah.

You know, there's no point in.

Yeah, yeah.

In putting yourself in more problems.

Yeah.

But whatever you can do, get on and do it. You know, say we still walk. Not as far as what I used to, but.

And I do have troubles on my bike because my balance isn't very good and I do tend to fall off a bit.

You need stabilizers.

Stabilizers.

And do you think that since having a diagnosis of lung cancer, I know that a friend of mine, her friend recently had advanced breast cancer and she didn't want to tell people because she said, I don't want them to start looking at me differently. Is that something that you guys do?

No, I didn't know. Most of our friends, you know, we told them and they just carried on. Yeah, yeah. Just said to them, just carry on as normal. I don't want.

No, I'll have all the chocolates and the treats, but I don't, you know. But the other bits.

Yeah, I've said that to people as well. Don't treat me any differently. I don't. You know, I think I have struggled with that because, you know, it's about finding. I've.

Trying to find a new me, I guess, and that's. I don't know quite know how it's gonna be. Cause I've had 18 months of treatment. I don't know what Lesley looks like after having all that treatment.

So, Leslie, before was, you know, the festival going very social, whereas, I don't know, I'm hoping I can go back to being that. That an element of that person again. But, you know, it's. It's about finding. Finding the new normal, really.

Yeah, yeah, yeah, yeah.

Then you got to keep positive.

Yeah, yeah, absolutely, absolutely. But also allow yourself for anger and allow yourself to go through those stages of grief, because it took me a while to get to.

To that as well, because I think I was trying to navigate how everybody else was feeling around me rather than thinking about myself. And it took me a.

To feel anything and to go through those stages of grief after my diagnosis, really, I was worried about the family and the friends and how they were feeling rather than thinking about myself. But I've always been like that throughout life.

So.

Yeah. Interesting that you say that. You know, you've just been given this diagnosis and, you know, you're thinking about the impact on.

Not you, but the impact on your loved ones. Yeah. And that's quite a burden to bear, isn't it?

It is a little bit. And it took me a while to realise that actually this is happening to me. It's not happening to them, it's happening to me.

And now you know, obviously quite a bit further down from my diagnosis, you do learn to become a little bit more selfish about things in a positive way, I guess. You know, it's.

I do obviously think about, think about everybody else around me, but this is happening to me and you have to become a little bit more selfish with life. Yeah, yeah.

And just going back to you, Charlie, because, you know, your situation was you've got this medical background with your family or medicals as well. I mean, you know, has that been good? Or would you say that at times that's been quite tricky, them having all this medical knowledge.

From my perspective, I think it's been good because we could understand. And as I say, unfortunately, we do have a lot of cancer in our family and we have been genetically tested now for various things.

The irony, I have the PMS2 gene, which basically is connected with lynch syndrome. But the irony is that the Hodgkin's that I've had and the EGFR cancer that I've had currently isn't deemed to be connected with the PMS2 genes.

So PMS2 leaves you at greater risk of colon cancer, GI type cancers. So you're at a higher risk than the general population for those.

But I think because of that, and almost, dare I say it, and I hesitate to say this because there's all those, you know, the thoughts around tempting fate. We have a high incidence of cancer in the family, but we have a high incidence of living with cancer in the family.

Okay, so actually that's almost a flip side to this or to the narrative.

And I have to say, I was diagnosed two years ago, and unfortunately, with stage four lung cancer and even egfr, it very much depends on whether the targeted treatment works for you or not as to your longevity. And so I sort of go, even now, I would count myself in the longer surviving people with a stage four lung cancer diagnosis.

So that is quite often at the back of my mind. So I think being able to read into things, being able to understand statistics comes from that sort of scientific med side of my family.

I think where it, it is, the flip side of it is that for them, that feeling of control, they can't control this. They can't actually help me. And cancer is such an individual journey from the point of view of the metabolic response to the cancer.

But keeping, you know, keeping. They're all on this with me, they're all supporting me, doing everything they can for me.

But absolutely, it's an individual fight at the metabolic level and the cellular level. So That's, I think, the flip side of, you know, I don't know whether that's good or bad, unfortunately. You have to ask them.

Yeah, yeah. Interesting, though, that. And interesting that you're. You say about the. The longevity and that actually, you know, yours is a positive.

And, Doug, you're similar, aren't you, because you've got through two years of immunotherapy and, you know, a lot of our mesothelioma patients don't get through two years of therapy.

So to have you with us today, you know, both of you being able to share that message, and Leslie, you're here and you're well and, you know, you've got through your first treatment and your chemotherapy, you know, I think that's real positive message to give to people diagnosed.

Yeah, yeah, definitely.

And just thinking back about that, you know, thinking about the thousands of people in this country that are diagnosed with lung cancer and mesothelioma and even, you know, other cancers, we know that, you know, the Macmillan are saying 1 in 2 people will be diagnosed with cancer in the next 10, 12 years. If you had to go back and you were at the beginning again, where you'd just gone to the GP and you were.

They were saying, we think things might not be as they should be, and the word cancer starts being mooted, what advice would you all give to somebody to help them feel, you know, a bit reassured or any. If there are any hints and tips.

You'D give someone, can I go even one stage back?

Yeah, yeah, go.

Because I think even turning up at the gp, right, it. For some people, especially with lung cancer, they may not.

And my personal advice for the two I've been through is putting your head in the sand doesn't help so very much. This. This. Doug, you hinted at it earlier. It's happened. Not doing anything about it doesn't change the fact it's happened.

Going and seeking help gives you a much better chance of, you know, so catching cancer early is really where I'm coming from or even starting treatment.

So, yeah, I do think there's that step before where if you're worried at home that you've got something, worrying about it doesn't do anything apart from taking the time away from you of enjoying life. Going and dealing with it is much more important. And then. Absolutely, that word, as soon as it's out loud, is scary.

Let's face it, cancer treatment, there are no easy cancer treatments. Mine's great, but there's still side effects to it. But would I prefer those Side effects to not being here. Absolutely lutely right. 100 every day.

Yeah, I completely agree with you there.

I mean, I think I had just about every side effect you can have.

Yeah.

You know, oral thrush, diarrhea, sickness, weight loss, rash. I can't remember them all because there's many. Most of them are gone. I've still, I still get the rash.

I mean, I've been just in a dermatologist and it's getting better, but, you know, he says he's never going to cure it. He's just got to live with it. Just keep whacking the cream on and taking the pills.

I was going to say, are they manageable side effects compared to the alternative?

Yeah, I mean, sometimes I sit there, oh, give me a wire brush, you know. But yeah, you're here.

Yeah, yeah, yeah, absolutely.

Yeah. And like you say, you're better off living with them than without them.

Oh, absolutely, I would say that. I mean, all of my. I mean, I. The immunotherapy, I ended up. I got hepatitis quite badly last year and obviously the crippling arthritis.

But like I say, I'm still here. And you know, the chemotherapy side effects, they were manageable. Not very nice, but they were manageable. And would I do it again?

Absolutely, if it gives me longer.

Lovely, thank you. So I guess we're saying to people out there who may be sat at home and scared, like you said, Charlie, better to go and find out while you're well.

We know that there are treatments now, which I think in the past, a lot of lung cancer and mesia patients, there wasn't that. So there was that fear of going, because what the hell are you gonna do about it? But now we have treatment.

So, yeah, I think that's a really good message to end on. And.

Yeah, yeah, there's just one more step on that as well. With Dr. Google being so readily available, if you search any symptom, at some point cancer comes into that conversation.

And there's also that bit about being at home worried about cancer and not having it is absolutely a waste of your life. So go and get checked and definitely go and find out for sure. And then hopefully you'll get.

Get better news and it's something much more manageable, treatable.

I would, I would think knowing is better than not knowing. Totally.

Yeah.

If you just sit at home and worry about it. It's not.

Get a second opinion if you're not happy with the first. The first time you get a second opinion.

There's plenty of people out there can absolutely help you.

Yeah.

Yeah.

You've just got to get off your butt and go and get the help.

Yeah.

As you say, it's no good sitting at home, no thinking, oh, well, no, it's not anything because nine times out of 10, I'm afraid it is.

Yes.

And it's better get the early treatment, early diagnosis.

Yeah.

And I think you got more chance.

Brilliant.

Yeah.

Well, thank you. It's been brilliant. And thank you so much for sharing all your thoughts today. And that brings us to the close of our first podcast.

We hope that you'll come back and join us again. We hope you found it reassuring and helpful. So thanks very much, everyone. We'll see you all later. Bye.

Thank you.

Thank you.

Bye.