A lung cancer diagnosis affects more than the body. It reaches into your thoughts, your emotions, and the way you see your future.

In this episode of Breathe Strong, the panel talk openly about mental health. They share what it feels like to face surgery alone, wait for scan results, live with uncertainty, and carry the emotional load that often goes unseen. You’ll hear honest reflections on scanxiety, stigma, counselling, community support, and the quiet strength found in connection, routine, and being understood by others who truly get it.

There is no single right way to cope. This conversation reminds you that mental health support can take many forms, and that you don’t have to face this journey on your own.

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Breathe Strong is supported by two patient-led charities working every day to improve support, understanding, and care for people affected by lung cancer.

You can help them continue this work by donating directly:

1. Support HASAG at hasag.co.uk
2. Support EGFR Positive UK at egfrpositive.org.uk

Your support helps fund counselling, community groups, practical advice, and peer support for patients and families who need it most.

You’re not alone. And neither are they.

I don't really know how I got through the door. I remember crying all the way from my house to the hospital, really.

And my partner Sarah kind of opening the door and me having to let go of her and walk into terrifying surgery. So.

Hello and welcome to Breathe Strong. I'm delighted to welcome back into the studio today Charlie, Leslie and Doug. And also we have a new member of our team joining us today, Mel.

So, hello Mel. Do you want to introduce yourself?

Sure.

Four rounds of brutal chemotherapy, month of radiotherapy, and two years later I had a recurrence. They found 10, what I call the 10 tiny tumors across both lungs. So I am now living with I stage 4 EGFR positive lung cancer and I'm doing well.

Good. I'm glad to hear that and thank you so much for coming to join us.

You're so welcome.

Brilliant. So our podcast today we're going to be talking about our mental health. Mental health as we know since COVID has become more of a talked about topic.

But I want to talk today about the impact of cancer on our mental health. And first of all, I just wanted to, before we go into our conversations, I just wanted to bring to people's attention.

This was patients with lung cancer and also their family members. They looked at this survey because they recognized that a cancer diagnosis doesn't just affect the patient, but also carers as well.

So they actually got respondents back from 1,709 cancer patients, which is amaz. Often patients don't respond to surveys like this.

We also had 490 caregivers and this was across the whole of Europe this survey took place and out of that one of the things that came out was that 61% of patients reported significant negative impact on their mental health following the lung cancer diagnosis. And caregivers also reported that their mental health was affected because their loved one had been diagnosed.

Because you come as a package really, don't you? So I just wanted, I thought this is such an important topic that often I know as a nurse we didn't really talk about that much in clinics.

So I'm really keen that we talk about that today, that we share Our stories today, and if we can give some hope and support to others out there, then, you know, by sharing stories, that would be great.

Now, I'm going to start with talking to you, Doug, and just ask you, because men, notoriously, you know, don't talk about their emotions and are very good at deflecting away from that. So just thinking back to, you know, your point of diagnosis and your journey that you've been on, what's it been like for you? How have you felt?

What's it, you know?

Well, I think I'm. I'm one of the odd ones out because. Because I don't, you know, really do mental health. I. I just take things as they come. You've got it.

It affects you. Get on with it. I'm not somebody that dwells on things. I don't sit and think, you know, why me? What's next? Every day is a different day for me and.

And I just move on.

Okay, but you go to. So I know Doug through a support group. So. But you go to the men's club, don't you, at the men's shed. Men's shed, yeah. So what.

What is.

What is the. What is that? What is that? Men's shed? Because obviously we. We don't go because we're girls.

So what is it?

What goes on there?

What goes on tour stays on tour. Doug.

Is it something you'd recommend other.

Most definitely, yeah. The one I go to is in the hospice where Barbara volunteers. It's very good.

There's about a dozen of us at the moment, and we chat, drink coffee, make different things, you know, out of wood. It used to be two, three hours in the morning, then a different group in the afternoon.

But now because the hospice is doing more things, we're all grouped into the afternoon. But, yeah, it's brilliant. It's just a good old church. And because there's no women there.

Yeah.

And I think all of us there say. I think there's 12 of us at the moment. And we all just talk about what we've got, where we've been, and what we think we're going to do.

Okay. And is that in terms of just life in general, or do you know, do you tiptoe into those topics about, I'm feeling really low today.

Or is that something not really discussed but you can pick up when someone's not having a great day?

Yeah, we can pick it up. I mean, there's quite a few people there that. Excuse me. That don't like to talk about it too much.

But most of us, you know, we talk about what we've got, what treatment we had, what we're gonna have, and it's generally just a good, a good feeling. You know, if you, if you want to sit there and just chat and have a cup of tea, that's what you do.

If there's, we've got all machines and woodworking stuff and materials and you can make what you like. We make quite a bit of stuff. My bird boxes, which you've seen for the, and the, and the. We give them to the hospice and they sell them.

I can love, draw a bit in. It's just a general chit chat really.

It was nice that you've got somewhere to go. And I don't know about the, the rest of my team here, you know. When you were diagnosed, did anyone talk about mental health? No, no.

As far as I'm concerned.

I think my first, one of, my first conversations with the lung cancer nurse specialist quite early on kind of covered this. And I think I remember one of the teams saying, I will actually refer you off to the palliative care team as well.

But actually I never got anything back from that side.

Right.

So it took me a few months later realizing I needed help.

Yeah.

Going to my medical officer at work, my general practitioner, and saying, this is how I am. And she very kindly then referred me off to the local hospice team.

Just talking about that though, Charlie, because, you know, many patients when they're newly diagnosed, if some nurses starts talking to them about palliative care, I mean, I can only imagine that that must be quite scary because you've got this diagnosis and you can't be cured and then they're talking about palliative care. I mean, what was that like?

I mean, as you say, pretty scary. And I almost consider myself lucky. And this is almost a side of the army that people wouldn't really realize.

Mental health is actually a subject in the army. It's something that we're highly aware of and identifying when someone needs help and signposting them to the help.

So I think I was quite lucky that actually I realized in myself. The lung cancer nurse specialists had spoken about it and the oncology team, but at that point, for me, I was still bringing the brave.

No, I can deal with this. There's nothing wrong. Let's just push through.

And indeed, for me, initially when I was diagnosed, I absolutely just went, yeah, that's fine, I can crack on with this. And then over, you know, a three month period of trying to do that, I came to the realization that it's not a great approach, actually.

It's potentially the wrong. The absolutely wrong thing for. From a health perspective, for many different reasons.

And that's when I was able to then actually go and speak to my doctor, my gp. But I equally already had a relationship with my doctor.

Right.

Already was seeing my doctor about other bits and pieces. And so again, I go, I'm very lucky because I had a relationship, my doctor knew me.

So to walk in and have that conversation, I already felt, you know, I had that psychological safety bubble with her, to be able to then actually ask for help. And, you know, that's not the. Not the case for a lot of people, unfortunately.

No, no. And I would imagine.

And you know, just talking to, you know, just bringing you in here, Mel, just having that first conversation in a clinic with strangers and you went on and had surgery and, I mean, you know, how did you. How did you even deal with all of that? That must have been quite overwhelming.

Utterly.

I mean, the first thing I wanted to say, actually, is that what Doug just told us about, about the men shed, I think that's such a powerful therapeutic situation for sustaining your mental and emotional health. So, you know, you rightly say, like lots of men might say, I'm fine, actually. But of course, you're not fine every day.

And joining together with other people like that and doing something, you're not necessarily sitting down and talking to a counsellor, but having that companionship and not feeling isolated, that does support mental health. It doesn't always have to be a crisis.

No, exactly.

I had my diagnosis over the phone. And then every time I stepped into that hospital, I went in alone. So I don't really know how I got through the door.

I remember crying all the way from my house to the hospital, really. And my partner Sarah, kind of opening the door and me having to let go of her and walk into terrifying surgery.

Right.

It's still there. It takes a long time. You know, I went for chemotherapy on my own. I had lots of side effects, was in and out of the hospital.

So I think it very much depends. You know, we've all got such different experiences. There isn't a sort of mental health matters. And tick this box and then we will give you X.

You know, some people need companionship, some people are able to seek out their own support.

And then for me, I was in such an enormous crisis and so unwell, you know, couldn't eat, couldn't drink, couldn't even really walk to the loo on my own. There's no way I was ready for psychological support. I was just surviving, you know, getting through each day.

And I'd had therapy before, so I know what therapy is and I know the benefit of it. But it wasn't really until I was no longer in physical mayhem that I was able then to support. Exactly.

Yeah.

And I think coping, what you're saying there is that, you know, and it's important that, you know, counselling is not for everybody, is it?

And equally, I mean, I've had counseling but you know, when somebody first said to me, oh Rachel, I think you should have some counselling, I was like, there's that thought of, well, what the heck am I gonna talk about for a start? And then do I actually want to talk about it to somebody? Because you have a kind of self defense mechanism in us, don't we?

That we kind of shut things off and just taking that first step. So I think like you said, Mel, you know, it's about recognizing that our mental health is personal to us, isn't it?

And we're not always ready.

It's scary because actually you've got to accept your vulnerability and then tell others you're vulnerable in order to then step across that threshold. But for me personally, it's really helped me. I'm actually still receiving counseling.

I've had a break for some of my journey, but I'm still receiving it now.

And what I find for me is actually it allows me to stop my own thoughts in my own head going round and round and round and actually bring those thoughts out into the open. And my counsellor's fantastic. I've seen her for on and off 18 months, ultimately in fact almost two years next month maybe.

And she just drops the odd question in which stops my brain. So it's. Well, do you know that it's like, no, actually my brain has told me that's a fact. And is it a fact or not?

So it's almost fact checking where my brain's going around. It's really useful for, for me, for me.

What about you, Lizzie? Because I mean, you know, historically we think of mesothelia patients as being. Excuse me, Doug. Doug's age.

Sorry.

25.

With a Mohican.

But you know, you're actually quite young and you're on your own.

Yes.

And still trying to work. I mean, how on earth.

I think going back to what Charlie and you have said, Mel, I think I wasn't ready for any kind of counseling because I was going through treatment and I was quite poorly with the immunotherapy that I was receiving. So I just wouldn't have had time or the energy to even go for the counseling.

Whereas now I've just finished having treatment and I think maybe I might be ready for some.

Some now.

Okay.

Because I'm. I'm not very good at asking for help either. And I think I've mentioned that to you.

Yeah.

I think that's because. Because I live on my own, I'm a very independent person and you just don't want to be a burden on people as well. And I think that's where I've been.

Yeah.

But mentally, some days I'm okay, some days I'm not. I mean, at the moment I've just, just had a scan. So my mental health's not at its best.

No.

Because, you know, you waiting for those results, aren't you? You know, you're hoping that the treatments worked and then you can just go to having your sort of regular three monthly scans.

So I think maybe there is some scope for some counselling needed now, because I think I've got the time to invest in that now.

Yeah. And like you said, it's important, you know, that you were talking about having your scan and waiting for the results.

And you know, sadly in the nhs, sometimes we're waiting patients waiting two to three weeks for those results. And there has been research done that's shown that scanxiety is an absolute real thing for people. Do you find.

Are you got any coping mechanisms that any of you want to share that you know, when you've had a scan, how on earth do you fill that three weeks before you go back to see your oncologist?

And, you know, I can remember seeing patients sitting in the waiting room at my hospital where I worked, and I obviously knew they were coming for their scan results and you could just see they were literally like this inside themselves because obviously anxiety. And one day we brought a dog in to the hospital waiting room and this particular lady was having waiting for scan results.

They were like those scan results where she was waiting to find out whether her treatment had failed and there was no more treatment for her. And the dog seemed to navigate and go to her.

And I came round the corner, went off around the corner, came back into the clinic to see her sitting, just stroking a dog. Completely different woman. The dog went in and got her results with her, which made such a difference because they weren't great results.

But she was stroking. The professor said she was stroking the dog the whole time she was getting these results. How on earth.

I mean, I don't know, I'm not a patient, but how on earth do you cope with things like that?

I mean, I like to keep busy. For me, keeping busy, which is what I'm going to film my. I'm going to be busy for the next two weeks.

Also, I haven't been able to exercise, so next week I've sort of signed myself up to being able to exercise again, which I'm really excited about. Brilliant. So exercise for me is really, really good for me, mentally, even just getting out and going for a walk.

Actually going for a walk in the park is if. When it's. When it's okay weather, but. Yeah, just getting out and doing that. Being in nature.

Yeah, yeah.

You can't beat it.

No, no.

She puts my lead on and takes me for a walk every day. I'm. Rain or shine.

You go out? Yeah, yeah.

We've got certain routes that we like. You know, we go in the car and find these particular routes, what we like. There's usually a calf at the end of it. Oh, yeah.

Essential. Yeah.

Either that or the pub again. Well, I don't actually drink. Well, not much alcohol now and. But yeah, there's always, you know, a snack at the end of it.

Yeah, done.

Every dog is a treat.

Just in case any viewers haven't watched the first episode. Can you talk? Could you. You covered it really well in the first episode where you were struggling initially to walk around a table.

Yeah, yeah, yeah.

Can you cover how you got yourself back from that?

Yeah, every time I got up to go to the toilet, she made me walk around the dining room table.

Yeah.

And then go to the toilet. And then when I came back, yeah, I'd done the same. And eventually I had to do two laps of the table. Yeah. And just keep going and going until.

And then, you know, we've got quite a large garden, so we've walked. We could walk down the garden and back again.

And then eventually we, you know, we got out to doing sort of a couple hundred yards and now without a push, I can do about a mile and a half.

Well done. That's Brilliant. That's amazing.

Yeah, that is brilliant.

I mean, on a really good day, I have done too. Only because I know at the end of that in wear, where we go walk past along the canal, there's a nice calf.

So you've got something. The reward. Yeah. And I think like Charlie says, it's important to just recognize that it's baby steps. Yeah.

It's not just going out and thinking, I'm gonna carry on my two mile walk that I used to do before diagnos.

No, it's do what you do when you can. Which I think is what you were saying before.

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

Yeah. Don't exactly good point in, you know.

Killing yourself or whatever. Yeah. No, if you can't do it, don't.

And I think, yeah.

I mean, there's lots of things I, I used to do which I can't now. I, I won't even attempt them now. I have tried and I think to myself, there's no point in doing that.

No.

You know, it's not going to work.

And if you're in that position at the moment. So I know post lobectomy I was, and you probably were, that you can't.

But it's knowing where you are now and giving yourself, you know, where you are now isn't where you're going to stay if you don't do anything about it. It might be.

Yeah.

But ultimately today I might not be able to, but tomorrow I might be able to do a little bit more. A little bit more.

And it's that trying to, I'm not trying to gloss over it, I'm not trying to put a positive spin on it, but actually it's that today's today, tomorrow's tomorrow, you know, do what you.

Can when you can. Exactly. And I think that's really important for people to recognize that, you know, it's, it's okay to have days when you don't feel great.

Yeah.

And you just sit on the sofa with your favorite blanket and a cup of tea and.

Yeah.

Watch a movie and have a weep. Well, that's okay.

Slightly.

Going back to that counseling, that was one of the things that my counsellors really helped me with is because ultimately the cancer diagnosis comes with grief because you're, you're grieving for the life that you thought you were going to have and the life that you think you've lost ultimately. And grief comes as a roller coaster. It's not a linear path.

So when you're talking about, you know, today you might be able to do X, tomorrow you might not be. Etc. Absolutely. And the emotional side is very similar to the physical side. It comes and goes.

And I would say, I mean, it's not days in my emotional state, it's minutes.

But I'm exactly.

Yeah, yeah, exactly the same.

Yeah.

I had one of those days yesterday actually this week I've had an MRI of the brain, PET CT scan and an echocardiogram. And going in and out of hospital knowing that in two weeks time you're gonna get your results.

Yeah.

Even five and a half years down the line, it's still a potentially life changing moment.

Yeah, absolutely.

It could be that my cancer has progressed in the last four months, it could be that it's totally stable. But the unknowingness, the fact that anything could happen at the end of January, I think we get our results on the same day.

Yes.

But that, that period in between having.

And that in itself is triggering, you know, going into hospital, getting inside the MRI tunnel of doom, which I really struggle with because your whole body is in it. It's like, right, coffin, as far as.

I'm concerned, is the right. Okay, so you've got all of these.

Things coming at you in one week. And I kind of breeze into hospital and smile at everyone. I'm like, hi, nice to see you again. And then come out again and you're like, oh, okay.

It's a lot, it's heavy, it's a massive trigger. It's really emotional, it's really weighty. But one of the things that helps, one of the many things that helps is having a community.

So knowing you are not alone.

And I think when you're first diagnosed, genuinely feel, even though you know that cancer is, affects everybody and is rife and is part of the modern condition, it genuinely feels like you are the only person ever to have been diagnosed with lung cancer.

Yeah.

Doesn't make any sense. Clearly you're not.

But the terror, the isolation, the fact that your life is turned upside down in an instant leads to such a feeling, or did for me, and I think for many people does, of isolation, terror and the unpredictability of the road ahead can feel mighty.

But having a community of other people who go, actually I've got that and I've been for my mri or like you've just said, you know, oh, I had my scans done this week. And so you're not going through an experience solo.

And that's where either the men shared or the groups that Charlie and I both have the same mutation. The groups that we're part of, where people go, had my scan today or had mine last week, and you're not dealing.

You're not navigating this crazy universe solo. You've got community, you've got friendship, you've got laughter. You can make jokes about it, you can comfort other people.

And I think reaching out and looking after others is a good part of looking after yourself. It really takes you out of your own. Of your own head.

Yes.

And I think showing compassion and care towards others is. It's also an exchange, isn't it? It means that when it's your turn, your friends will leap on and say, you know, yeah, we got this. You got this.

Sending you love. I know everything's going to be okay. I feel it in my heart. You know, you just got that sort of connection and community that is so sustaining.

Yeah. And I think that's such a good point that you bring out, because I can remember one of my patients that came to our support group.

Often patients don't want to go to support groups. That's especially for mesothelioma. They don't tend to want to come. So. But then, you know, and that's fine. That's their personal view.

I think there's a lot of people scared about going to a support group and they're going to see all these people sitting in a room looking really ill. But one guy said to me, and I'll never forget him, ever, he said to me, rachel, he said, come into this group. He said, is brilliant.

He said, because when I say I feel like this and people say, oh, I know how you feel. They genuinely know how I feel.

And he described it as if you go on holiday to the Grand Canyon and you come back and you say to somebody, oh, I went on holiday to the Grand Canyon. It was absolutely brilliant. That person's not been to the Grand Canyon. They're going, oh, great. Was it brilliant? Yeah, yeah, it was fantastic.

He said, and you get a conversation. He said, then you have that conversation with somebody who's been to the Grand Canyon. Did you see this? Did you do that? Wow.

Wasn't this the most amazing experience?

He said, and there's this huge shared connection that I found in and still find in my support groups that you've just done so brilliantly there, and said how valuable that's been for you guys to do that. And Leslie, do you go to support group?

I've not been able to just because of hospital appointments and just being the wrong time. But I have been to one of yours.

You weren't there the day that I actually went, but I've actually now okayed it with work that Mondays I will always be at home so that I can make a point of coming, going along to your support group. And I have found that there is a yoga for cancer group in Catford as well, on a Monday as well.

Yeah, absolutely love it. It's great that you found that yoga for cancer group.

Yes. It was a lady that actually I used to go to her yoga classes and I just did a bit of a Google search and.

And it just so happens that it's actually in, in Catford, just down the road from where I live. So that works out really well for me.

So good old Mr. Google again.

Good old Mr. Google. Yes. Happy helping die.

Yes, exactly. Yeah.

It just shows you, doesn't it? Mental health isn't just going to get counseling or drugs.

I mean, that's the thing, you know, it's about community, connection, having somebody that you can tell your deepest, darkest thoughts to and that might not be a partner. So for me it is, you know, the things I share with Sarah are things that nobody else in the universe knows about apart from her.

But it might be a sister, it might be a best friend, it could be a child, you know, one of your children, grown up children.

But having somebody that you can just give little bits of information to and they gather and hold all of that for you so you're not carrying it on your own is such a powerful thing. So there's so many, you know, like you said, exercise, going for walks, having community, maybe having counseling.

If you feel that's the thing for you, speaking to your lung cancer nurse, potentially having medication, you know, it's okay if, yeah, if that's what you need to help you deal with anxiety. But it isn't just you must have counseling and that's the only route to improving your mental health.

And time, you know, as the days and weeks and months and in my case years progress, you're much better able, I think, or certainly in my case I am, to contain all of this because you've experienced so many different points along the journey. But it doesn't mean there aren't days when I totally lose my call. I was going to say I swear word there, but I don't know if.

It'S that kind of podcast.

Lose my call. So it happens.

Yeah.

There are bad days when you're just like, you know, screw my life. I hate this. Most of the time, I don't feel that way.

I think the key for me is I have a very loving wife. And absolutely Max and I, in every other subject, know I think everything about each other.

But my concern when it comes to this particular subject is I potentially traumatize Max if I offload some of my deeper thoughts to Max. And Max has her own thoughts on this.

And I know that that's actually brought out in the Luce report in terms of the different bits and pieces that caregivers and patients experience. So that, for me, is the. Is the real benefit, because Max and I have discussed this ourselves in terms of. We've got.

It's the wrong words, but we've got different roles in this journey. We're on the journey together, but we've got different roles, we've got different perspective, we've got different thoughts.

And so certainly when I first went to my gp, it wouldn't be that I wasn't happy to talk to Max about what I was thinking and feeling and actually some of the things I did, but I needed somewhere else to offload some of those things because they're in my brain and actually leaving them in the brain would have been a problem. They needed to come out. So that, for me was very much helpful because when I walk into that session, it's about me.

I don't have to worry about the counsellor.

No, exactly.

Her say what you like, her mental health is her responsibility and to go and, you know, care for the carer and all the rest of it. It's someone that I can absolutely just say anything to.

Yeah.

And that's really, really helpful for me.

Yeah.

But, you know. Absolutely. There's many different ways, many different ways, getting mental health support.

And I remember. So when I was going through a tough time, like you, Leslie, I'm on my own.

And Ryland, at the time, he was talking about his own journey when he'd gone through his trauma and relationship breakdown, he was talking about the use of a journal and writing stuff. Cause you were saying, Charlie, about getting stuff out of your head. And he used that as his way of putting stuff down on paper. So I did that.

I wrote a journal. I wrote a journal for about a year full of all this angst and trauma.

And then my friend said to me, right, what you need to do now is you need to burn it, Rachel, because you're burning that. That traumatic person. And it took me a while because I thought, what a load of rubbish. But actually, I did do that.

And the neighbors must have thought I was mad having this. Now you burn.

Were you chanting at the same time.

As I was dancing around the Harry Potter? But actually the sense of relief that I felt that I wasn't carrying that anymore. So not all of us have such lovely partners.

And also, I think there's some worry about. Like you were saying, Leslie, about being a burden. Yes. Yeah.

Because, you know, our friends and family have their own lives. And especially when you get to a certain age in your life, you know, they have parents or they have their own ailments to deal with.

So, you know, you just. I know I'm my own worst enemy. I don't ask for a lot of help and I don't speak out enough. But, you know, my friends are always there if I need them.

It's just my own fault. I don't ask for the help.

Yeah.

There's a little bit that the men's shed and the EGFR lunches and different bits and pieces where you get together with a group of other patients. And I sort of mentioned this, of what most of us are experiencing as we're going through.

This is absolutely normal for a cancer patient, but it isn't normal for us as individuals. And so what all of these different bits and pieces have helped me with is actually understanding for where I am now. This is normal.

But coming to terms with your new life and it becoming normalized is. You might not want it. I'm not saying I've embraced this fully yet. I'm still certainly working towards it. But you are where you are.

Yeah.

And it, you know, that's why I sort of talk about the grieving process. You. No one knows what their future life holds.

No.

But for a cancer patient, you've suddenly had a label put on you and your life has changed. And that's why I'm sort of going, you can and should grieve your life changing. Certainly not saying you shouldn't.

But if you just stay in that space, you're not necessarily embracing the other bits and pieces. So you were saying you've just gotten back from holiday. So have I. You're also saying about, you know, get now going out and get. Having exercise and.

Yes.

Yoga and you. And.

And I was sort of saying earlier where you were when you started your journey of walking around the table, if you'd Sat in a chair, you still wouldn't be walking around the table. Now it's that kind of. You've almost got to move through and process where you are in order to.

And live again. It's got to be bit by bit. It's not rushing into things. Yeah, Just take your time. There's another day tomorrow we haven't started on yet.

Well, that's very true, but I think that's a really good point that you brought up about the grieving and adapting to your new life and maybe some patients getting stuck in that grief process and about whether as nurses, we should visit that topic a bit more often because I don't know. I mean, I don't know.

But you can tell me whether you would feel okay coming into clinic one day and saying, I feel stuck in this black despair and I don't know how to get out of it, or whether you would just keep that to yourselves and hope that somebody would ask you that question and then give you permission to talk about it.

I mean, I'm quite open, so I've always been quite open. I would.

If.

And I have said to my. My nurse at the hospital, if I'm having a bad day, I will say I'm having a bad day. I don't sort of internalize things like that.

But I mean, generally, if. If I'm having a bad day, I will say to my friends, I might just not answer a text message or whatever.

Doesn't mean that you don't need to worry about me. It just means that I don't want to talk to anybody today. But, I mean, I'd be. I'm. I'm more than happy for anyone to. To ask me how I'm feeling.

I personally would prefer the subject to be brought up because I believe it opens up then the permission for people to talk about it. Yes. So my particular hospital sends out in advance of our hospital appointments they send out.

I think it's a GBAD score or something, but basically it's a mental health questionnaire. It's quite free.

Appointment pretty much once, though?

No, no, not just once. I mean, you know, regularly.

Yeah, that's a really good idea.

It might be. But one, you're in different states of mind when you get the questionnaire.

Two, I would have a different conversation with a nurse than I would with my own phone. And that's why I'm sort of going that human interaction, my opinion is actually quite important.

Sending out a digital questionnaire, whilst it might tick a box that we're checking mental Health. I personally, it doesn't work for me.

And the other thing that you said there, which is really important, is that so often you'll go to hospital and you might not see the same oncologist, you might see a different lung cancer nurse. So, you know, it's great to fill out a form, but who.

You need recognition that some is going to look at the form for a start, and that the person that looks at the form is somebody that you know and have a relationship with, where you then can say, you know, for.

You know, in the old days when I had less patients, my patients would talk to me a lot about different things because I knew them so well, was almost part of their family setup.

But nowadays, when there's, you know, vast numbers of patients coming into these oncology clinics, a form's filled out, but you might not see the same doctor, you might see a brand new doctor and then, you know, how do you open up to them?

And it's little questions. Sorry. So even just somebody saying in clinic, how are you feeling? Not just physically, but, you know, how are you in your emotions?

How are you feeling in yourself? It just allows that side of you into the space, doesn't it?

Because often when we're at hospital, we're going through procedures, things are being done to us.

Yes. Practical, isn't it?

Very practical. But actually everybody in the room knows that it's really difficult what you're going through. And so when people have said to me, how are you?

Or I've actually burst into tears, you know, a hand on the shoulder. Yeah, there isn't time to be a counsellor in the clinic. It's not. You don't have time for that.

You know, you've got patients every 15, 20 minutes, whatever it is, but someone who looks you in the eye, maybe puts their hand on your arm, is kind, smiles, all of these things contribute to you feeling emotionally and mentally seen, if you like.

Yeah.

There is no space for a big, long conversation about what might be going on. But is there anything else I can help you with? These sorts of questions that just open up the door.

So it's not like my body is here, my mind is here and my emotions are here because all of those things are connected together. Yeah, humanity is all of those things. Our body, our heart and our brain all connects together.

You can't separate out how you feel, what you think about and how your body is. Each one of those things affects the other. So to bring.

To integrate who you are as a human and bring that together, those little Moments of eye contact and not just looking at the screen.

Oh, gosh. So many patients have talked to me about that.

Things help our mental health and help us feel cared for.

I must say. Sorry. Go on.

No, no, no, go on.

I must say, my oncologist is absolutely brilliant.

Great.

I've seen. I did have a previous one, it wasn't quite so good, but this one, I mean, she is absolutely.

You go in, you get a hug on the way in, and you get a hug on the way.

Amazing.

And, yeah, you know, that's like human.

Connection that goes along.

Yeah, yeah, she's. She is really good, so I. I can't fault her.

That's really lovely that you get that.

A hug.

You get a hug.

I love it. Yeah. We should do it more often.

Hugs, please.

We definitely do it more often.

And we always have a hug.

Yeah, we do. And I just think, you know, just. I used to read all my patients CT reports before they'd even turn up in clinic.

So with the oncologist's permission, if it was a good report, I wouldn't expect them to wait two hours. I would just give them the thumbs up and a smile and that just. You could just see them going, oh, it's all right, it's all right, it's all right.

But equally, if it was bad news, I'd make sure I was with the try and ensure that the way my clinic ran, if I couldn't be in with them at the time that I saw them when they came out, that I phoned them, that I made them feel that they were seen and that their distress was seen. I think so important.

Yeah, I agree.

Like you say.

Yeah, I was just going to say that I do. I am one of the lucky ones. I do see my oncologist. I see the same oncologist and it's face to face.

Right.

So all of those things for me are actually really important. But we talk about process when I'm in with my oncologist. For me, as.

From the way that we deal with that is I'm there for data from the oncologist almost. And I. If I was struggling with my mental health, my oncologist wouldn't be the person I'd talk to.

Right. Okay.

So I think it's. And the problem with this is it's all very independent, so it's very dependent on the patient and what they're willing to do.

But if my lung cancer nurse took me in a room and had a chat, would I feel free to chat to her or him? But yes, probably. And there's a bit of me that goes, I wouldn't waste my oncologist's time with that.

Which is appalling because we were speaking about, well, the holistic approach. It is one body, one mind, one, you know.

And actually your mental health is really important for your physical health and for your, you know, being able to live life and get on and live well with this horrible disease.

But having that data explained clearly by your oncologist.

Yes.

Does help the mental health, I think.

Absolutely.

Trusting that that oncologist has got your back.

Yes.

That they're paying attention to the details.

Oh, yeah.

You can ask as many questions as you like. So that's space.

And he's fantastic with that. That's why I'm going, yeah, my oncologist. Absolutely no complaints whatsoever. Face to face. You don't feel like you're being rushed.

Yeah.

Every question. And he's.

He's.

It's very open conversation between us, so. Absolutely. But for me, would I then talk to him about my mental health? No, no, no. Even with that relationship with the oncologist.

Okay. But like you say, you've got roles, people have got roles and. And it's not one size fits all, is it?

Yes.

And he's your. There to help your treatment and. And control your cancer and make sure that you feel safe and treated properly.

Yeah.

And then you have other people in your life that form. Perform other roles for you. And I. Yeah, I think that's important, isn't it?

Well, I think that's a bit. Almost the important bit to recognize is there are different people. It doesn't have to be one person that you go to for this help.

And if you're struggling. So if you are out there struggling and you're not getting the support from your oncology team, what else can you do?

So, you know, your gp, your lung cancer nurse, your local hospice. So for me, I know that I went to my GP and she referred me, but I could have self referred to my local hospice team.

So if you're struggling to sort of get that help, and they're cancer specialist counsellors, so that's one sort of. Yeah, there's different roles for different things.

Exactly, exactly. And I think one thing to say is that a lot of GPs now have this role called social prescribers.

So these people that sit in the GP surgeries that would be able to tell you, Lesley, that there was a cancer yoga group in your community and link you into other support groups and things. So sometimes it might be worth for patients and family members to ring the GP and say, have you got a social prescriber?

Because we've just been diagnosed with cancer and, and we want to know what other help in the community there is. It's not just counseling like you found your yoga group, Les, Doug's got his man shed.

It's about not just thinking about hospital based things and the charities and our lovely charities.

There are some amazing charities that support us folks with cancer and they offer so many different things. You know, not everybody can afford to, to pay for a counsellor or you've got to have that equality of opportunity for everybody.

And I think the charities really provide that.

Yeah.

So whether it's a Maggie's that's at a local hospital and sadly they're not at all hospitals, but they might be at your nearest one or whether it's something like Roy Castle Lung Cancer foundation and they cover all the answers and there's always a lung cancer nurse on the end of a phone if you need to speak to somebody and you can't get hold of your own team. So all of this though takes time.

And that's the thing, you know, we're all sitting here a bit further down the line, but if you're somebody listening now and you're newly diagnosed, it's a whole different ball game. And it very much depends on what your treatment path is.

You know, if you're just taking a tablet every day, just targeted therapy, and you haven't got invasive or problematic treatment to go through, then you might feel ready to join groups and go to yoga and explore these things.

But if you're going through the kind of treatments that some of us have been through, in that moment, you're not necessarily in a space where you're ready.

No.

And it took me two, three years after my diagnosis to feel ready to speak to other people.

Yeah. And it's so different for everybody. Exactly. And it's okay.

It's about acknowledging that that's okay and that in the beginning you may feel completely flawed and just focusing on each day, getting through each day. Especially I think with a diagnosis where there's no cure and you're told that very early on, just being able to try and process that.

And then very quickly after that we've told you your diagnosis, you signed consent to this treatment, there's all these scary side effect linked into these treatments, then you get shipped off to the cancer day. You'd have your treatment and trying to process all of that must be very overwhelming.

It's A bit of a whirlwind, to be honest.

It really is a whirlwind, like someone's taken your life, shaken it and served it back to you, but it's not your life anymore. It's some other life that you don't really recognize.

So I think for some people, I guess I don't want anyone listening to think, God, I've got to get a counsellor and I've got to go do.

Counseling.

And go out walking.

One size does not fit all.

It's not the days of the week.

For all of that. In case you feel they might help you right now, but they might be to save for later. They're in the bag for later.

What I would encourage, though, and I know for me, initially I didn't because it's part of that change in identity. I didn't want to join a cancer support group and, dare I say it, especially a lung cancer support group.

I had my own thoughts about what that group would look like. And me and my GP did talk about it early on, but over time that changed slightly.

And I think what was important is my care team early on told me about the onco driven charities, the patient charities, and I got a Macmillan booklet with some of the information in it as well. And there are lots of charities. But I think what was important for me and I didn't know before I did it. So we talk about side effects.

Actually joining a group with people with the same type of cancer issue means there's other people on similar treatments to you with similar side effects to you. And one of the things.

So I am an EGFR trustee, I'll just do a quick plug for the EGFR charity and I know other charities provide a similar service, but actually that's what's important. You connect with your community quite quickly.

It is back to that Grand Canyon trip of you're connecting with other people that have been through where you're going. You know they're there or they've been there, they've got advice and it's a pull system. So if you ask a question, you'll get some answers.

You don't have to every day look at things. And I completely agree with you in terms of you need to do you on this journey.

Yeah.

But there are places where you can get help and there's lots of help out there. And I think it's just opening that door. Even if it's just a chink that then start. There's that help can then come in and it's cancer's very odd.

It's a very individual journey, let's face it. It's our. Our own immune system trying to battle our own cells and at a cellular level, that's really scary. But you're not.

You're not on the journey actually alone. There's other people that are there and the side effects and different bits and pieces. And just one last plug for the EGFR charity.

You were saying about counseling and not everyone can afford it, go to a charity. So EGFR offers free counseling. My local hospice offers free counselling. You don't have to pay. And they're cancer specialists.

Yeah.

And I think that's one of the things that we started at Haccag a couple of years ago, is that we've got a group of counsellors across the whole of our catchment area.

So the south of England, where we have a fund that sponsors our counsellors and they are there specifically for not just our patients, but our family members as well.

Yes, yes.

I think what's really important about those charities as well is that, you know, Hassag and EGFR Positive uk, they were set up by people that have been there. So there's that real lived experience, isn't there, that some of the other charities may not have fully.

So I think that also helps bond you in, doesn't it, that these charities have been there when they say they understand, they really do understand what it's been like for you guys and for people who may be newly diagnosed.

And sadly, there's a lot of stigma with a lung cancer diagnosis.

Yeah, it.

It's self perception, it's external perception, it's external judgment and that. I think there's a particularly unique element to the lung cancer community.

And whether you've smoked or not smoked or, you know, no one deserves cancer, no one's asked for cancer, no one's done deliberately anything to specifically get it. But lung cancer, out of almost every other type of disease, there's a lot of stigma.

Exactly.

And I think that sometimes stops people opening the door that I was talking about to go and get that help. So. Absolutely. The specific charities out there, so Hassag, egfr, and clearly there's lots of others positive.

And you've got your buddy scheme.

Yeah, we've got a buddy scheme at Hassag where we pair somebody up with another patient so that they can get talked to each other on the phone. Just so. I just feel that, like you said, Mel, I don't want people to feel that they're on this Alone, but maybe your nurse.

Because I've not had cancer, I don't really understand it fully. I can empathize and support, but I can't say I know how you feel. Genuinely, I can't say that because I've not been there.

But you know, Charlie, that's such an important point that you've brought up about stigma. And I remember when I first started in lung cancer in 15, 16 years ago, and that was one of the things that we routinely asked, have you smoked?

Or patients would say, I've smoked. And I remember my first EGFR positive patient. She was very young, she was in her 20s, she was a buyer for Selfridges. She was absolutely beautiful.

I remember seeing her in the clinic room thinking, what are you doing here? You don't fit in, what are you doing here?

And she said, oh, I was on a race for life last week, Rachel, and a lady stood up and said, I've got lung cancer, I've been diagnosed with lung cancer and I've never smoked. And she said to her friend, likely story, Sheila smoked and then she's sitting in clinic getting a lung cancer diagnosis, having never smoked.

And I mean, she was on the floor, bless her. But I'm glad to see that things are changing with regards to stigma.

There is still stigma out there, but we've had some amazing advocates that have really stood up and said, I've got lung cancer and not hidden from it to try and help break those barriers down.

And I've got goosebumps at the moment because that stigma from an individual perspective, it's frustrating, debilitating, you know, all of those things, but actually it's life threatening because that stigma exists throughout healthcare that you must have smoked to get lung cancer. And I certainly it delayed my diagnosis. I know it's delayed quite a few. So that lady that you've just described. Absolutely, absolutely.

How is a 20 year old female or 20s year old female, well, doing a race for life, healthy, fit, young.

She really was.

But that's that. Unfortunately, that isn't. She's not unique.

No.

And that story, sorry, I'm now on one, that story really, really needs to get out there because actually every person, from the healthcare professional down to an individual, understanding they're at risk is so important and it's changing, but unfortunately not fast enough.

Not fast enough.

And not feeling guilty that you, or ashamed that you've got a cancer, a lung cancer diagnosis and I, you know, not feeling that you have to say whether you've smoked or not even I don't think is that really.

It's a really complicated environment, I think because on one hand it's really important that the public know that you don't need to have had a history of smoking in order to get lung cancer. And why is that important?

It's important because if you get a cough that lasts for a month or other side effects that people don't associate with lung cancer, like a sore shoulder that. You said you had a sore shoulder, didn't you?

So there's that side, which is we've got to educate people so that they and the care teams know that the fact you don't have a history of smoking doesn't mean we can push lung cancer out of the potential responses.

Even with mesothelioma, we've had quite a few young patients. My youngest patient for mesothelioma, he was 29 when he walked into my clinic and, you know, he was literally devastated.

It had taken him months to get his diagnosis. He split up with his fiance in the clinic room. It was the most traumatic thing I've ever witnessed.

Cause he said to her, I'm going to be dead, so what's the point of being together? I rang him every day for a week, so I was convinced he was going to commit suicide. I was so scared.

Thankfully, he finally agreed to meet my counsellor at my hospital, who was just the most wonderful woman. He only had two sessions with her and that was enough for him. But the next time I saw him, what a.

And he went on to marry his lovely fiance and do sperm banking and have a baby. Oh, gosh, that's an amazing story. And just, you know, I'll never, ever forget him. He was just amazing.

And his mental health at the beginning was in shreds. But by the end of his journey, I remember us talking about end of life together and I didn't want to talk about it.

And I'm a nurse and I built this relationship with him and I couldn't talk to him about it. So I'd gone up to the ward, armed with my books ready, and then thought, no, I don't know how to talk about it.

He brought the conversation up and spoke to me about it. We just, you know, had the most amazing conversations together. But that was him helped me in my job and, you know, just the.

Growth you go through, I think.

Yeah.

And I mean, I was going to say that earlier that, you know, there's two things. One, we're talking about stigma, but equally another thing that.

So I. I'm on social media and one of the things I talk about and have done recently is that the people who do have a history of smoking are also part of our tribe. It's not absolutely older people with no history of smoking. Aren't we great? We didn't smoke and we've got lung cancer.

You know, we want to raise awareness. But actually these people over here who do have a history of smoking, they don't deserve it either.

No, they don't.

And we're actually all one tribe.

And very rarely do you find somebody on social media with lung cancer that talks about the fact they have a history of smoking because they're so ashamed that they will be judged that somehow it's their fault. But we don't say to people who develop colon cancer, have you eaten a lot of McDonald's? You wouldn't dream, you wouldn't dream of it, would you?

I don't.

Even if they had, do they deserve colon cancer? No, they don't.

So all of this relates to mental health because if you have a sense of shame, if you feel like you caused your own cancer, you are much less likely to reach out and ask for support and help and you're much less likely to advocate for yourself.

Smoking is a very clear link with lung cancer, unfortunately. So I take that back. Smoking and lung cancer are intricately linked in all of our brains. But actually even I beat myself up.

So I am a non smoker, but I beat myself up at the start of this because I thought, well, is it my weight? But you know, our community, no, I was active, but I was overweight.

You know, I beat myself up for months on, should I eat this, should I eat that, should I not eat this? And, and all of those bits and pieces. Absolutely.

So whether you, whether you've smoked or not, an individual will beat themselves up for why are they the one with cancer? And unfortunately, if you have smoked it, it. I mean, I can't think how that individual. So I can empathize, but I'm not in there with them.

But it isn't anyone's, it's no one's fault. And even if that did cause your particular cancer, it doesn't help you now.

No, you've got it.

Go and get help. Go and get mental health now. Now.

So thanks everyone. I hope you've found it. Okay, talking.

It's been an emotional topic today and I'm so grateful to your honesty and also for making yourself so vulnerable. Talking to. I hope people have found it really useful out there. I think I'd just like to end on just saying, please be kind to yourselves.

You're not alone.

Yep.

Thank you, Rachel.

It's okay.

Should we just have a communal reading? And just.

So also just to say, we're coming back for our next podcast and I'm very pleased that following on from this podcast, we're gonna be talking to carers. I'm delighted that we've got some of our family members coming in to share their experience of their loved ones being diagnosed with this cancer.

And then in the future, we're also hoping that people will email in.

So we now have an email address which will be on the link on our webpage for Breathe Strong, which we would encourage you to write in your experiences. This is a community, as Mel said, and we don't want you to feel alone.

So please do feel free to write in, share your own experiences, ask questions and join us and be part of our community.

And also on the website, we will be putting some links for the Luce Report for a Macmillan Managing Emotional Wellbeing, but also for our two charities, so that if you need further help, support and advice, you can go and get it there. So just leaves me to say thank you so much to everyone and hope everyone has found this useful.

Goodbye.

Goodbye.

Bye. Bye, Sam.