Leslie Harrison and Doug Read are people living with mesothelioma whose experience of treatment was marked by severe immunotherapy side effects, from hepatitis and inflammatory arthritis to rash, weight loss, weakness and sudden loss of independence.

In this episode of Breathe Strong, they speak with Rachel Thomas about how quickly treatment complications escalated, the fear of being taken off therapy, the reality of recovery, and the importance of reporting side effects early and asking for specialist help.

Leslie and Doug leave you with a clear sense that survival is not just about treatment itself, but about persistence, support, adapting to a changed body, and learning to keep going even when life no longer feels familiar.

It's not going to be the same as what it was before. I mean, this is the new norm. And try different things. If you can't do them, concentrate on the things you can do.

Hello and welcome to Breathe Strong. I'm your host, Rachel. I'm delighted to welcome you to our penultimate episode, which will be for the end of season one.

And today we're going to be talking about side effects of. Of treatment. So the first podcast, we're going to just focus on mesothelioma. Hence the reason I only have in the studio with me today, Lesley.

Hello, Lesley.

Hi, Rachel.

And Doug.

Hi, Rachel.

Hello, Doug. And Doug is flying solo today, so because Barbara's not feeling very well. So just want to say get well soon, Barbara, and we've missed you today.

So today we're looking at side effects of treatment. Now with mesothelioma still, unfortunately, we have very limited treatment options for our patients or people living with this cancer. Nice.

Have recently recommended immunotherapy as being the first line treatment for patients with mesothelioma with chemotherapy, which was the first line treatment, now becoming more of a second line treatment. So we're going to have a look at these two treatments today and look at the side effects associated with each.

But I just thought it might be helpful, as we think about immunotherapy, to actually just go through what is immunotherapy, how is it given, and why do we get the side effects that we see with these treatments? So immunotherapy is quite unique. It's transformed many other types of cancer, such as melanoma and, and lung cancer.

Indeed, it works because cancer basically is a normal cell that has gone wrong when it makes new cells.

Ordinarily, most cells, when they go wrong, have a suicide mechanism inside, which means that they kill themselves off, they recognize it gone wrong, and they kill themselves off. But with cancer cells, they turn that mechanism off so that the cell doesn't die naturally. It just continues to make more and more rogue cells.

In our immune system, we have cells called T cells. They're helper cells. They go around our body and they look for cells that are rogue and they surround them and they get rid of them.

Again, with cancer, it has a unique ability to be able to hide itself, almost cloak itself from the immune system. So the immune system will go past that cell and think, oh, that's okay, that's a normal cell, and carry on.

The scientists found this mechanism when they were doing lots of research and they developed these drugs, immunotherapy and what immunotherapy does is enables your own T cells to recognize cancer and attack it, with the end game being that it kills the cancer cells off and stops more growing.

The other way immunotherapy works, and this is the problem, and this is the reason why we have many side effects, is that we have natural breaks on our immun and that stops our immune system from attacking us.

Unfortunately, one of the things that immunotherapy does is it really boosts your immune system, takes those brakes off completely, which in one hand is good because it's attacking your cancer cells, but on the other hand, not so good, because now we've got an immune response going on, that then means that we can end up having an attack on our own bodies inside.

So you'll see many side effects that are related to that problem, such as hepatitis, poor hypothyroidism, which is where your thyroid gland is reduced in its function. Arthritis, colitis, which is a severe diarrhea due to inflammation of our bowel, hepatitis, which is inflammation of our liver.

Myocarditis, which is inflammation of the lining of our and pneumonitis, which is inflammation of the lung tissue. These side effects can come either mild or they can be quite severe.

We don't know who's going to get side effects or, you know, we can work out for some of the side effects when they may come on.

But again, some patients will have worse side effects and they may happen after just one treatment, whereas other people may go on to have six, seven treatments with no side effects and then suddenly get side effects.

So immunotherapy is given via the vein, it's given through an infusion, and on day one, you have two immunotherapy drugs and then 21 days later you have one of the immunotherapy drugs and then you repeat that cycle. You'll have a CT scan to check that the drugs are doing what they should be doing.

And so you carry on, and you can carry on for up to two years if the drugs are having an effect and it's not causing you unreasonable side effects.

We think that after two years, although we are still looking at this and the scientists are researching this, that the immune system is programmed then to recognise the cancer cells and get rid of them.

And so after two years, there are a group of patients now who are living with their mesothelioma, not on treat treatment and doing well, which is amazing.

But today we're going to really focus on having this treatment what it's like to have this treatment and side effects of this treatment, how we cope with them. So with that in mind, I'm welcoming Leslie and Doug. They both had immunotherapy, both with differing experiences.

So I'm just going to open up to both of you and say, what was it like for you having immunotherapy and what was the impact on your life? And maybe, Leslie, we'll start with you on that.

Okay. So I was offered immunotherapy, actually. I was actually asked to go on a clinical trial when I was first diagnosed.

Nothing, nothing wrong with that. But I got home and I, right away my temperature started to go up and now I'm, I, you know, even when I've been.

Had the flu or had a cold in the past, my temperatures always sort of stayed around the 36.4 or 5.5 marker. And it shot right up to 30 in the 37 point, you know, 5, 6. And I kept seeing it going up and I thought, okay, this isn't right.

So I sort of waited 24 hours, gave the, on, gave the 24 hour helpline a call and they said just to keep an eye on it. And, and then, you know, literally within a couple of days it got quite bad.

So I was pulled into the, the oncology sort of day unit to be checked, have my bloods taken. And then they, they started me actually, and actually, actually this, by the Monday, my hands and my feet had started to seize up.

Right, okay.

And so I was a little bit concerned about what was going on. Actually, I did.

I actually had a friend staying with me at the time and so she came with me to the day unit and they couldn't figure out what was going on because I'd literally only just had the one treatment. And so they actually started me on a very, very high dose. Did they start me on. I can't remember.

I can't remember now where they started me on the, on the steroids that. On that day.

Right.

But they sort of checked me sent and then I got sent home again. And then things started to get worse as the days went on.

Okay.

I think this was, I think I had my first treatment July 10th, 11th or 12th, around that time. And it was actually my birthday on July 15th. And I remember being back in the oncology day unit on my birthday.

And within two days I was actually admitted to hospital.

Right.

And I look back now, my sort of CNS nurse at the hospital, she came up to me in the hospital bed and took a photo for my chart, which is what guy's hospital uses so you can log all your appointments, et cetera. And I look back at that photo now, and I realize now how poorly I actually was. It doesn't even look like me.

And that's when I was put on a very, very high dosage of steroids, which we all. You know, when that happens, steroids can make you feel pretty wonderful when you first start taking them. And obviously they need to.

Needed to bring that. The level down. But they decided to stop my treatment right away.

And it wasn't until like a few weeks later I was told that I had got grade four hepatitis.

Oh, wow. Okay.

Gosh. And so, yeah, I didn't feel poorly. Poorly, but I was told that I actually was very, very, very poorly. But also with that came the.

I also got inflammatory arthritis as well. So it started off in the hands, hands and feet. And, you know, we sort of managed that with the steroids.

And then so, yeah, basically they had to stop my. They had to stop my immunotherapy right away. And we had to get my. Is it the alt levels down? I think, yeah, because they were sky high.

They had to come down to a certain level before they would even think about maybe starting me on treatment again. I mean, there was a possibility that they weren't even going to. That I wasn't going to be able to have any more immunotherapy.

And during that time. So in those early days, I mean, you. Great that you've called the acute oncology. I mean, we would always advocate that.

And that was amazing that you had that support there. But, you know, what was that like? Were you sort of. You said, oh, when I look back at my. The photo, I was like, oh, my golly. I was really poorly.

But at the time, were you a bit like, with everything that was happening, was it quite overwhelming? So you didn't really process what was happening?

Exactly, exactly that. I think for me, it was, I guess, because it was my first. The panic was that on my first treatment, it's not working.

And I think what was going on in my head was the fact that I might not be allowed to have treatment. And of course, you know, I'd been down the rabbit hole of being told, you've got mesothelioma.

And so when you look online about mesothelioma, you know, there's never a good story, but. And so I was thinking, oh, my goodness, is that it? Is that, that. That's it. My ticket's going to be up within, you know, however many months.

And so I was. I did everything in my power to try and get out and walk as much as I can. The steroids did help with that, eating really, really healthily.

And I managed to get my levels down within. It took about a good. It took a good month and a half. So they.

My lovely oncologist, he presented it to the board that, you know, I'd worked really, really well and that, you know, if we take away one of the immunotherapy drugs, maybe we can just try, try, try her with one.

Yes.

Which is what we did in the end. And so I did that at the end of September, I started the immunotherapy again.

With just the one drug.

Just the one drug, yes.

And I think lots of patients don't realize that, that we know that one of the drugs is very toxic and is the culprit for a lot of the side effects. But once you've had one dose of that drug, you can talk to your oncologist. If it's not suiting you, don't suffer in silence.

I would say talk to your oncologist and say, look, you know that under nice, you can actually drop that drug and carry on on the one drug. And we have clinical trials that say that that one drug is effective and does work and may be more to.

So always go back and talk to your oncologist if you're struggling.

I mean, I can actually, I can say with that one. That one treatment, I mean, I think I had. I can't remember when it was. I had my CT because I was still on they.

Although I was on the trial, they dropped me from the trial, obviously, because I had such bad toxicity. But they were still giving me regular six weekly CT scans because they wanted to collect the data from me. And from those CT scans, it showed that my.

My little. The nodules of the disease. I think they were measuring about five, five and a half centimeters to start with.

When I first got diagnosed, they went down to three and a half centimeters.

Wow. So you had a response.

So I had a really, really good response. Although, you know. Although it wasn't doing me any good.

Yeah.

You know, the other things weren't doing me very good. So in that respect, great. You know, I thought, great. You know, this is fine. I can Do.

It's been worth it. Almost.

Absolutely. Absolutely. So, yes, obviously then I started on the. Just the one drug and everything. Everything seemed to be fine for a while and we were sort of.

Okay.

And then literally within. Just right before Christmas, the joint pain started to come back again, and that's when my body just started to become riddled with the infla.

They call it treatment IND induced inflammatory rheumatoid arthritis. Wow.

Okay. Mouthful that.

And I had to say, yeah, and I had that in. I think I had it in my feet, my knees, both hands, my. Most of my right arm. I was. I had to walk with a walking stick.

And, you know, with that comes all sorts of, you know, because of being. Being a very active person originally, with that comes, you know, the depression and all of those sorts of things. And the pain. I mean, I was on.

I was the maximum painkiller drugs that you can take. So.

Gosh, very hard.

Yeah, it was. It was a very, very difficult time. So, yes. And, yeah, I mean, in the end, they had to. They.

With persistence, because you have to be persistent with your. With your oncology team. I. I requested to be referred to rheumatology as well, because I didn't want to be on steroids for the rest of my life.

And I think that's another thing to say is that with immunotherapy, there are hospitals that have put together an immunotherapy team because we know of these side effects. And actually, as oncologists, they're not rheumatologists, they're not endocrinologists, they're not dermatologists or cardiologists.

So some hospitals have built together an immunotherapy team which draws on all of these other experts to treat side effects. And just. Just coming over to you, Doug, because I think your experience was quite different.

What happened with you when you first started treatment with immunotherapy?

The immunotherapy? Yeah, I mean, I had radiotherapy before that, 10 sessions, which was fine.

And was that for pain?

It was, yeah.

Yeah. And did that help?

What was that after about the second or third session?

Oh, okay, okay.

So, yeah, yeah. And we continued with the 10.

And then I started the immunotherapy, which I had the first session, and after a day, day and a half, I came out in a rash, you know, which we reported to the team. And they said, oh, you know, you do get a Rash, you know.

Right.

It's one of the side effects, unfortunately. Then I went for the second session and more or less straight away, you know, it just. Everything just went wrong.

The rash was like somebody had been all over me with a Brillo pad.

Oh, wow.

You know, head to head to foot, all in between my fingers and my toes, just everywhere. It was a nightmare, really.

And what did the rash look like for people that, you know, may be commencing, about to commence treatment? You know, what, what did it look like? Was it red? Did it have pustules or.

No, just a red spotted rash.

Oh, it wasn't.

It was, yeah. No, there was no weeping with them.

Okay.

But it was just quite bumpy.

Was it quite bumpy? It was a bit bumpy, yeah.

Well, still is, but okay. Well, yeah. And. And it was horrendous, really. And then about two days later, I got really ill. I was in bed, rarely got up, didn't eat.

I had oral thrush.

Oh, God.

Diarrhea sickness, more or less. Anything you can get, I had it. Really?

Wow.

I lost about two and a half stone in weight.

Bless you.

And if I never say another banana smoothie, it'll be too soon.

Oh, okay, okay. Gosh, that. What, what did. So at that point, you know, when you were getting really ill, had you rung the hospital at that point?

Yeah, and I also had an appointment with the oncologist.

Right, okay.

Barbara took me actually in. In a wheelchair.

Did she? Did she?

Yeah, well, I couldn't walk. I couldn't.

You know, I took two of them to bundle me in the car to get me there, and we went in to see the oncologist and the look on his face, you know, was horrendous, really. And he said, well, that's it, no more treatment for you. Stop right now.

Oh, right, okay.

You know, and he prescribed all these different things for the thrash and the steroids, obviously. You know, I think I was on about 20 a day to start with and things for the diarrhea and the sickness and creams for the rash.

Right.

And what have you. This went on for about five or six weeks and I gradually started to get a bit better.

Were you off treatment during that five or six weeks? Right, okay.

No treatment at all then. I was having the two, obviously, to start with. And gradually, you know, thanks to Barbara, I built up a bit and built up and could actually get up.

One of the problems I had was used to get up in the night to go to the loo, which took me twice as long, but I used to get lost in the bedroom.

Did you?

Yeah.

Because were you disorientated?

Yeah. And the. Our ensuite is right next to the stairs.

Oh, my goodness. She didn't fall down the stairs.

No, luckily. But I used to get there sometimes and I had to shout to Bob to wake her up to get her to come in because I didn't know where I was.

Oh my golly, that's scary.

Yeah.

In your own home.

Yeah. To be disorientated like that bedroom for 30 odd years.

Ye, that's really quite odd.

Just hadn't got a clue.

No. And thank goodness you have, Barbara, because I think sometimes, like with you, Leslie, you were, you were managing this on your own, you know, just.

It goes to show the importance of just having your support network there.

Definitely. Yeah, without a doubt.

Because, you know, like you were saying, Barbara nursed you better, really, didn't she?

Oh, yeah, yeah. I wouldn't be here if it wasn't for her.

Wow. Yeah. Gosh, that's really powerful. And. And then what happened then? So, you know, did you gradually start to get better?

Yeah, yeah, I gradually got better. I started to put a little bit of weight on and could move a bit more. Well, I used to go down.

I mean, I couldn't get downstairs on me and I could get up because I went up on all fours. But she used to take me downstairs in the morning, get me dressed, put me in and out of the bath because I couldn't get in the bath.

Oh my gosh.

Lather me up with all these creams which I was given. And I used to sit in the lounge watching the telly or what have you, because it was still sort of winterish.

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

Right.

She said, because you've got, you know,.

Got to build yourself back up.

And as I got a bit better, I had to walk around it twice.

Right, okay, okay.

And then gradually I got out so I could walk down the garden and it took about seven or eight weeks. And then I went to see the oncologist again and he said, well, you know, you're well enough now, your bloods are okay.

So like Leslie, I only went back on one. Right, okay, we know which one is.

Yes, we know.

Yeah. And here I am.

And I wonder for both of you what that must have been like to go from, you know, to go from a fit, relatively healthy. I know you have mesothelioma, but your lives were good at that time. You Were both very active. To go from that to being almost crippled.

We were both crippled in different ways. I wonder how on earth you managed to cope with that.

You've just got to think that this, this is the worst bit, you know, it can't get any worse than this. It's. It's got to start getting better. Which luckily it did, you know.

Yeah.

But you've got to work at it.

Yeah.

It's not, you know, sorry.

It was this. Sorry.

It's all right.

We've dropped the tissues on the floor.

And so now poor old Leslie.

But, yeah, I think, yeah, it's you. You have. You've got to work out. Like you say, there is no miracle tablet you can take and then you wake up the next morning and. And you're there.

Yeah.

You know, I mean, it's.

It is hard work.

It is hard work and it still.

Is, to be honest. It's not.

It is.

You know, I've been off the treatment as you know, for two years, over a year now.

And you were saying this morning, Leslie, that things aren't feeling great today.

No, they're not. I mean, for me, I think the worst. I think the worst day for me last year was I'd gone out with some friends on a Saturday night and got got.

I, I left, I left. I left early.

So I said, look, I'm just not feeling very well, got home and I went to get up to go to work, go to the toilet in the morning and my legs buckled underneath me.

Oh.

And I.

And I obviously I called oncology straight away and they said, look, if you can hold on for a day and get yourself into the, into the oncology unit, you know, come in, we'll. We'll just check you over and stuff. But I literally. That I was having to use. I was having to hold. Use the wall to ease myself, to try.

Oh, luckily I'm on the ground floor, so I don't have any stairs to go down. But I thought I was going to have to sort of bum shuffle to the, to the bathroom just to be able to get to the bathroom.

Just holding on to everything. It was, it was. It was horrible. And I was actually, I was admitted hospital that time as well. That was when they sent me to rheumatology.

But yeah, like, like I say, I. That was when they, they did the scan and they discovered that actually it wasn't working right. I think that was in. Goodness.

Must have been May last year. May, yeah, May, May, June last year. They said to me, it's not working anymore. The cancer had started to grow again.

So then you kind of automatically thinking, oh goodness, what's going on? But anyway, that will, we'll talk about and, but we're talking about the, obviously the joint pain coming back.

Yeah.

But I, yes, I was on some drugs which rheumatology had prescribed me which took a while for them to kick in, but they, they really, really started to help me and by the end of May I was without my walking stick. I was walking, it was great. And it's a form of sort of chemotherapy drug. Okay. Yeah.

And then they, they, they actually, because I was told then that I was going to be put on chemotherapy, we stopped that. But now that I think most drugs are out of my system, I think the joint pain possibly is coming back.

Okay. Okay.

And I think that is one thing to say about immunotherapy that, you know, we are still learning about immunotherapy and drugs and the long term effects of immunotherapy drugs.

But we do know that sometimes, particularly with things like arthritis and even colitis and some patients have adrenal crisis and have to be regulated very closely. These can be, well, they're life changing and they are often with you for life.

So it's about, you know, thinking, I think maybe as healthcare professionals we don't really think about that, that long term support network for our, our patients and, and how we go about providing that on a long term basis. So that when they, when you have flare ups, there's a process in place.

Yeah.

To support you really. I suppose, yeah.

I mean like, like my rash, as you know, I've still got a bit of it, but it's only in the last six months that I actually got to see a dermatologist.

Right.

Which had somebody, you know, referred me before, I probably wouldn't have been half as bad as what I am now.

Right.

Well that's what the young, the rheumatologist. That's you with the rheumatologist.

Sorry. Yeah, yeah, yeah. But often as patients you don't know to ask for these other. You just don't, you don't know, do you?

Which is what you were saying about some hospitals now have got, got a team.

Yeah.

Which I think everybody should. Every, every hospital should have a team. Absolutely.

Should. I agree with that.

Two of them. Definitely.

Yeah.

I mean, as you know, now I've got arthritis in the hand. I'm waiting to get that scene turned up.

Well, I've, yeah. So with, with my, with my hands, I, because of the arthritis. I've ended up. Last March, last year, I ended up where my thumb dropped.

And as it transpired, I've literally only now like in the last couple of months had the ultrasound for that problem. It's taken a year for that referral to come.

Really?

Yeah. And I'm. They, it's. They discovered that I've.

I've ruptured my thumb, which, I mean, I can, I'm allowed to have surgery on it, but that's like three months. I wouldn't be able to drive, which means I'll be isolated. I'd have to take more time off work.

Someone would have to look after me for a couple of weeks. And I can't expect someone to take two weeks off to come and look after me. And I've managed for a year without a thumb. So I've just said.

And then they've said it won't get any worse.

Okay.

In terms of.

So you're just gonna live with it?

I'm gonna, for now, I'm gonna park that one and live with it. And unless like it gets really, really painful. But I mean, I'm hoping that certain drugs will help with it.

But if not, I'm gonna ask to be referred back to rheumatology again.

Absolutely.

Because those drugs were working and I think, you know, I'd rather not. I mean, steroids are fantastic. They are fantastic for everything and they really, really have helped me throughout.

But as a long term solution, I'd rather not be on it.

Yeah. Because they carry their own side effects in themselves, steroids, don't they?

So, yeah, I mean, the way steroids work and the reason we put people on, treat people with steroids when they have these side effects is that steroids put the brakes back on.

So they help damp down your immune system, which is great because then they help relieve the side effects, but then they also have their own side effects for long term.

I feel like it's kind of putting, putting a band aid over the problem and not dealing with the problem properly. So. I mean, yeah, like I say, the drugs that I was prescribed from rheumatology were amazing.

They were helping and, you know, meant that I could start to live my life a little bit more normally again. And so, you know, I, we're hoping we don't have to go down that route again. But you know, I have noticed like my, my elbows lock into place.

Right.

And it's quite. You have to kind of turn your arm around to be able to unlock it and straighten them again. And like Today my grip of my.

My right hand is quite poor, where I can't lift anything really. So I mean, you know, you're saying you've got the arthritis in. Yeah.

And with it being my dominant hand as well, it's quite hard to train your left hand to do everything. So.

Yeah, y. Yeah, very difficult.

And I wonder, you know, for those people who are about to start or you know, who are just starting, I wonder if we should perhaps have more counseling for our patients on starting these treatments. I think one of my concerns is that some oncologists go the other way.

So they get so caught up with the fear of these side effects because they are debilitating, aren't they, on your life that they then almost terrify people and then say, well, we don't even know if it's gonna have that much effect on you. It might give you just a couple of months extra life. And then patients are saying, oh, no, no, I don't want it. Then I don't want it.

But actually, you know, I mean, one of the good. We'll come onto some good news.

Cause there is good news for both of you is that there, some of when these drugs work, I mean, they really work and they can be really helpful and almost life changing. And I just wonder if we had a better multidisciplinary.

So, you know, with your physio, your ot, your dietitian, lung nurse, and your oncologist before you start having some sort of counseling about side effects, whether they.

Can frighten the daylights out of you.

Yeah. I can imagine getting up in the night and not knowing where you are especially.

Well, I mean, I live on my own, but. And I think. And also I found. I don't know whether it's because I'm quite an independent person. They see me as being quite. I mean, and I get.

I even get this from sort of all of the doctors and. Or the oncologists and nurses in the hospital. Like, you know, I'm always told how well I'm looking.

Yeah.

You know, and that. And sometimes it can be quite frustrating. Yeah. You know, and read an article this week and the lady explained it quite well, actually.

When someone says you look really, really well, they don't realize how long it's taken you to get yourself ready to get out the door, to be able to go and do the things that you have to do.

Yeah.

You know, you have to completely change your life around. You know, I went to an event a couple of weeks ago and I.

It was one that one that I like to go to and dancing, and it was great and I managed to do all of that, but it meant that I had to rest all day to be able to go and actually just have a couple of hours out in the evening.

And I. And I. You know, I can remember another patient of mine saying that he found that really quite almost offensive when people said, well, you look well.

Cause he said, what I look like doesn't say what I'm like on the inside. And you're almost like dismissing. Maybe we say these things to make ourselves feel better.

I think so. I think so. I think I've said this in the past. It makes you feel better if you've told someone they're looking really, really well.

But actually if someone just. You change the narrative a little bit and just say, well, actually, but how are you feeling? You look good, but how are you actually feeling?

You know, I think that's. That's the way we should phrase it, I think.

Yeah, they're two different things sometimes.

Yes, they definitely are.

Yeah, I agree. I agree with you.

And it was interesting that the article that Leslie's talking about, so for those of you that can access the Guardian, there was an amazing lady who spoke very candidly about her experience of living with stage four lung cancer. And it was just absolutely, absolutely brilliant. It was quite a long article, but it's so worth reading.

So if you can get the Guardian and go and look her up. I can't remember her name now, but we'll try and get it and put it on the Breathe Strong site.

Or, you know, speak to one of the charities, Hassag Orijfr Positive uk, for the link, because it was well worth a read.

Definitely well worth a read. I've actually forwarded it to some of my friends because they kind of asked me how I'm feeling and I said, have a read of this.

Because it's really hard for me to put into words sometimes how I'm feeling. Cause I'm not like Doug, I'm not having active treatment at the moment, but I still do have cancer, you know, so, you know.

And so she explains it really, really well in what it's called, like, the long middle, which is really good. Like, people, when you've beaten cancer or in remission, everyone's cheering you on.

And obviously when someone sadly passes away, you are mourned, but nobody knows what to deal with when you're in the middle. Yeah, exactly.

Exact. Exactly. Yeah. And I think that's a really personal point that you picked out there, Leslie.

That we cheer everyone on and it's big celebrations, oh, it's cured, you're in remission, rah, rah, rah. But with lung cancer and mesothelia, we don't get that.

No.

So we get like that long drawn out period, hopefully. Long drawn out period where people are, they're living with the cancer, but the cancer's still there.

And so what do we, what should we, what have we got to celebrate? What should we be celebrating exactly?

You still go through the, you know, every 12 weeks. You, you're anxious because you've got that scan. You know, you don't know whether it's going to come back or then you, then you.

And then it, then it's all fine again.

So you got another 12 weeks and, and so, you know, it, it can be obviously quite exhausting for family and friends around you because they don't know how to, to be around you, I guess.

Yeah.

I mean, you've got, obviously you've got Barbara, who's mate. Amazing. So, you know, you know.

Yeah, definitely. But hopefully.

I think that's one of the reasons I really, really wanted to do Breathe Strong was because I wanted people not to feel like that and be on their own and to have a place where they can come and, and be safe and just say it how it is and share how they're feeling.

Yeah. This podcast is amazing. If I've, you know, it's really helped me. Really, really helped me.

Good, good. And then you were saying, Leslie, that when you, after immunotherapy you actually then went on and had chemotherapy, is that right?

I had chemotherapy. I was obviously, when I was told that my cancer was starting to grow again, they said, you know, minimal.

But, you know, when you're told your cancer's starting to grow, obviously, you know, you go. And I actually didn't have anyone with me at the time as well. I have been taking people to my appointments, but this particular time I didn't.

And I sort of left there, burst into tears and you just sort of worrying then, okay, what does that mean for me? But my oncologist said, look, you know, it's. We, we want to try you on chemotherapy.

And obviously gave me all of the information to take home about chemotherapy. And again, that's, you know, being told you're going to start chemotherapy. It's quite scary.

Yeah.

Because, you know, you, I guess you, you read about it all the time, especially with someone with cancer, you know, like, oh my goodness, am I going to lose my hair?

You know, I've Been well, Doug doesn't need to worry about that blessing. But, you know, it's.

You know, but it is one of those. It's one of those things.

You also massively going to lose weight. Am I going to lose.

Yeah, exactly. All of. All of those things. All of those things, yeah. Am I going to. Am I going to be. Am I going to be really, really sick?

Because that's like a phobia of mine being sick.

Yeah.

Oh, gosh, yes. So all of that, I went home and, like, was in complete panic mode for a while. Thankfully. They said, you know, look, go away, have a holiday.

You don't. You know, we'll take a month off before we started.

Okay.

And then we'll. Then we'll go into it. And I started on. I was. With the chemotherapy. You're given two. Two drugs and it's. And you're also given. You're also given.

Given a vitamin shot as well, which is amazing. I love those vitamin shots. But I started at the beginning of August and I pretty much sort of cleared my diary for the whole time. You know, I.

Well, I say cleared my diary, but yeah, it was every three weeks I was. I was given the infusions and it meant that that first week I. I wasn't sick, thankfully. Didn't lose my hair. I. It shedded a lot.

It's a lot thinner than it used to be. But yeah, I did. I had extreme nausea for probably about five or six days.

Okay. And how did you. How did you cope with the nausea?

What.

What sort of things did you do?

Peppermint tea, ginger biscuits. My appetite since I've had cancer has just gone weird anyway, so, you know, I'll eat when I feel. I would eat when I felt like it.

You know, smoothies, just smoothies to get the goodness in you, obviously.

Do you have any taste changes? Because I know that can be quite common.

Yeah, I stopped. I think there was a. I think I went off a few things. Yeah. So I've. And I still don't like eating a few things, like spicy foods and things like that.

Can't eat.

Right.

And now even now, sometimes I'll. I'll. It'll be nice. Good. The one day, I think it was chicken I had one day. I ate it one day and the next day, no, couldn't eat. That was.

And basically threw it up. So. Yeah. And I was like. And then that puts you off for a while. But. Yeah, and that's. You know, that kind of still does happen sometimes.

You know, you just taste. Just. Is up and down all the time. Haven't lost the ability to love chocolate, though, which is. Thank goodness. So. Yeah, good.

But there's, there's, you know, small linings.

Yeah, yeah, yeah, yeah. And, you know, and I do. And also I do allow myself to have those treats as well. You know, I think.

Yeah.

You know, we, our bodies have gone through a lot.

Yes.

With all the treatments and it's important.

To remember, I would say to people, when I counsel them about starting treatment, it's important to remember why, why we're having treatment and it's particularly when it's not curative treatment. So it's designed to try and stop the cancer and improve symptoms. So the overriding strap line, as I say, is quality of life, isn't it?

Absolutely.

Enjoy a glass of wine.

Absolutely.

If you like some chocolate, then that's quality of life to me. And to rob yourself of that makes me think, well, what are we doing this for?

Yeah, I mean, I did stop whilst I was having the chemotherapy, I did stopped drinking and stuff. So. Yeah, right. But, you know, now, now I'm not having treatment.

I do allow myself to have a glass of wine because it's, you know, it's, it's, it's nice. I don't obviously go out and drink like I used to.

Well, I think naturally we all sort of. As we get older, as you get.

Older, you can't cope with it.

2 O' clock in the morning down the nightclub.

No, no, no, not at all. But, you know, with the chemotherapy, there was a chance you can either have three or three to four or six cycles of it. So.

Four to six cycles?

Yeah, four to six cycles.

So I, I had the first few cycles and I, I think one of them, my blood, before I had one of my cycles, my bloods weren't great so I had to delay it by week. But, you know, they. My blood sourced himself after a week and then they had the scan and it showed.

The scan was showing that my disease had stabilized, which is great. So I was allowed to have that those last few cy chemo, which is really, really good.

And then I have my last, my last cycle at the end of November last year. And then scan my. I had the scan after that sort of at the beginning of January and it's showing that has shrunk slightly.

Wow. Fantastic news. Brilliant.

Yeah. So that's good. I've got a scan coming up soon, so we're a little bit anxious about that one. But, you know, we'll keep fingers crossed.

Yeah.

Everything, Everything's still as it should be.

Good, good. And we do see that with some patients where immunotherapy's not really worked when they start chemotherapy.

And we're not sure whether the immunotherapy has some effect on the cells, which then makes the chemotherapy more active. And so we are seeing some patients where immunotherapy hasn't really worked, but they go on to chemotherapy and it does work.

So, yeah, I know my oncologist has said to me, like, even if I get the slightest sort of disease progression, they probably would give me chemo again because I coped really, really well with it.

Good, good. And just thinking now, where we are now, because I know that, you know, there has been some positivity.

I know both Doug and Leslie have had quite horrendous side effects, and that's not the case for everyone in immunotherapy. Some may have mild side effects, but what's life like now? So we've come through treatment and, you know, what's it like now?

I know, Doug, you were talking about going away and, you know, just give us a flavor of that. There's light at the end of the tunnel.

Oh, yeah, definitely. You've got to keep positive and do what you want to do. You know, if you want to go on holiday. Go on holiday.

Yeah.

No matter what the others say, you know, you can go on holiday with that. Well, of course you can. Why can't you?

Okay. Yeah.

I just think that just live your life as best you can. It's not going to be the same as what it was before. No, I mean, this. This is the new norm. And try different things.

If you can't do them, concentrate on the things you can do.

That's a really good thing.

Absolutely.

It's no good thinking, you know, oh, I used to be able to do that and, you know, I'd like to do it again. If you can't do it, you can't do it. And that's the end of it, isn't it?

Yeah.

Just concentrate on things.

You can be kind to yourself.

Yeah, Yeah, I think.

Yeah.

Don't beat yourself because you can't climb a tree.

Yeah, I could never do that. Anyway, I'm looking at you. Yeah.

Well, there you go.

But, yeah, I think it definitely is sort of living for the now, not for tomorrow. Because none of us know what tomorrow is going to bring. Absolutely.

I think it's just as well we don't.

Yeah, yeah, I think so. And I. I do.

I said this to someone the other Day, I think I'm, I mean, not that we know when our time is up, nobody knows when that is, but we've kind of been given a rough idea of like we, I guess having something like mesothelioma or any cancer, incurable cancer, it sort of gives you that eggs. You wanted to live your life and not think, oh, I must be saving for retirement or must be, you know, doing this, that and the other.

And you know, for me, I, I want to do as much as I can now whilst I'm still able and mobile. Definitely.

I guess, I guess my only worry is that, you know, I was at the support group the other day and there was a lady there that has got, she has to have a fluid drained from her lung regularly.

Right.

I don't, I don't because I had a pleurodesis.

But there is that worry that, that you could have fluid building up in your lung again and, and to not be able to swim again, that would really, really, I would be heartbroken if I couldn't do that. And also maybe to go on those sort of long haul holidays on my own because I, I, I'm, I, I like to do things on my own.

I don't mind because, you know, it's, because not everybody can take the time off that I can, so.

Yeah, yeah. And you actually did achieve that though, didn't you?

Yes.

Because you did go on.

Yes, I went, I went to Mauritius for Christmas which was amazing. And I'm in, Well, I may, I'm in the process of trying to organize, to go to maybe somewhere in the Caribbean before my next scan results.

I wanna, I want to, I want to try and get away.

Just, you know, it's, it's that kind of fear of if something isn't great, then I'm gonna have to put the halt on all that sort of travel for a while again. Hopefully not forever, but yeah, get all the holidays in now whilst I can.

Yeah. And I think as we're drawing to a close, our time is coming to an end.

You're talking about the podcast now?

Yeah, yeah, definitely the podcast. Yeah.

Doug.

Yeah. I've not developed crystal ball technique just yet. Give me time, but not yet.

If, what would you say to somebody who was either just starting treatment or about to start treatment or who may be having side effects of treatment from both of you? Maybe. Doug, you want to go first? What, what would you, what would your message be to that person?

If you've got a problem, ask somebody. There's a wealth of people out there. Like yourself, your oncologist, you know, your nurse, specialists, you're the experts. It's no good.

Don't look at Dr. Google.

I was just about to say don't, don't, don't stuff.

Some of it might be all right work, but I think most of it, you could.

Yeah, you know, you could rely on that. Rely on that 24, 24 hour helpline. It was, it's been my saving grace over the last couple of years.

Like Hassag.

Yeah, yeah, yeah, exactly.

And got somebody down there to sort it out for you.

Yeah.

All those horrible forms you have to fill in.

Yeah, that's very true. Yeah.

Don't be, don't be afraid to ask for help. I think that's, that's the biggest thing you can say.

Yeah, you've got a problem, some. Somebody can help you solve it.

Brilliant.

And don't be afraid of the treatment either.

You know, we might have had quite extreme side effects, but I, you know, spoke to a lot of people at the support group on Monday and they, and a lot of them like, kind of breeze through the treatment and are doing really, really well. So, you know, don't be afraid of these things.

I think they are, you know, they are there to help and, you know, if you do have side effects, hopefully, you know, know you, they can be helped. Like they've helped us.

Somebody can help you out.

Yeah, brilliant.

And, and take their advice. If they stick your head in a bucket of ice water for an hour, that's what you've got to do. Because they, they know what they're at, don't they?

Yeah, yeah, well, yeah, yeah.

Some of the things just aren't nice, are they?

No, they're not, they're not. And I think.

But if it's going to help you.

Yeah, yeah, help.

Then you, you've got to take their advice.

Yeah, absolutely.

And I think, you know, sometimes as I think, I think, Leslie, you said, or it was, I can't remember, I'm having a moment. But you were talking about that. Worry about if you reported side effects, they might take you off the treatment and then what does that mean?

You know, when you've got limited treatment options. But actually what we would say is report early, tell your oncologist, ring that number to speak to the expert nurses. Because.

Because the earlier the treatment starts for these side effects, the more likelihood it is that you might have a short break off treatment and then be able to restart.

Don't wait until you're really ill. And I know sometimes on those cards they Say things like oncology, emergency helpline, but anything that is you not feeling you to me, isn't worthy of calling that number. And we would rather, as healthcare professionals, you ring that number and we said, oh, don't worry about that, that's absolutely fine.

Just do X, Y and Z rather than you sit at home and then get really ill. So thank you for bringing that message. That was brilliant.

Don't ever think that you, you know, you're going to be a burden on the, on, on the NHS at all, because you're not. They're there to help.

Brilliant.

Don't worry if you are.

Yeah, well, that's what we're here for.

Exactly.

Because if you don't, then I used to say some of my lung cancer patients, when they say, oh, we don't like to bother you, Rachel. And I said, no, you've got to bother me, because if you don't bother me, I haven't got a job and a reason for being.

So just bother me, that's absolutely fine. So with that, I'd just like to say thank you for joining us today. We hope you've found this very helpful to you and supportive.

Thank you so much to Leslie and Duncan. Been again, so honest and open about your own lived experiences.

We do have an email address@breathestrongassag.co.uk so please, please do write in, because as we start to think about the end of season one and we're looking for funding for season two, we need to be able to demonstrate that this has been worthwhile. I mean, brilliant news. We've been downloaded in 25 countries worldwide. We've hit over a thousand downloads.

But in order to be able to get more funding, we do need to be able to have some of your views and thoughts about our podcast and what you'd like to see in the future for season two. So on that note, just stay strong. Be no, you're not on your own. We are here. And thank you very much again for joining us. Thank you, Leslie.

Thank you, Doug, and get well, Barbara.

Thank you, Sam.