The podcast highlights the significant impact that lung cancer diagnoses have not only on patients but also on their family members and caregivers. The discussion emphasizes that these caregivers often feel secondary to the patient, yet their experiences and feelings are just as crucial. The hosts, Rachel and her guests, share personal stories that reflect on the emotional turmoil and challenges faced during diagnosis and treatment. They stress the importance of recognizing the caregiver's role in the journey, noting that healthcare support must include both patients and their loved ones. Ultimately, the episode encourages listeners to seek support and highlights the necessity of teamwork in navigating the cancer experience together.

It's not just them in the game. Like you say, everyone focuses on the patient. It's actually the Batman and Robin, so to speak. Yeah, absolutely. It's the team.

Hello and welcome to Breathe Strong. I'm your host, Rachel, and this episode we're going to be talking about family members and caregivers.

1 often family members and caregivers are almost secondary and the focus is very much on the patient.

But there's been lots of research, again from the Luce, the Lung Cancer Europe patient report, which also looked at family members about the impact of the lung cancer on them themselves. That does show that when someone is diagnosed with lung cancer, there is a significant impact for the person, the family members as well.

And it's not just the patient that's affected, but also the family members. So I'm delighted to welcome into the studio today three fantastic family members. So I've got Lynn, I've got Max, and I've got Barbara.

So just before we start, I'm just gonna ask them all to introduce themselves so you know who they all are. So, Barbara, can you tell bit about yourself?

Hi, I'm Barbara and I've been married to Doug for 50 plus years. He was diagnosed with mesothelioma three years ago. And yes, it was devastating.

Thank you, Barbara, Max.

So Charlie got diagnosed with EGFR lung cancer three years ago.

Okay, thank you.

And Lynne, and I'm Lynne, and I lost my dad to mesothelioma just over 20 years ago and supported him throughout his diagnosis.

Brilliant. Thank you. And thank you so much for all coming today.

This is quite an emotional topic to talk about, but just going straight in really, at the point of when your loved one was diagnosed with either a lung cancer or a mesothelioma diagnosis and you know, the impact on you guys of what that was like.

I don't know if either of you want to just say what that experience was like and how you felt when you were sitting with that person, your loved one, getting that news.

In the beginning, I was devastated, right? Doug had been poorly, and when he was diagnosed, they didn't mention the word cancer. So I thought, oh, they haven't mentioned cancer.

So we're all right here. But then when I found out what mesothelioma was, I'd never heard of mesothelioma and found out what it was, it was just devastating.

And what support was there for you at that Time. Barbara, did anyone recognise your devastation?

Yes, they were very good. We had a nurse who took us to one side and tried to explain everything that was possibly going to happen.

And she also gave us an information leaflet which included details about a charity called Hassag. And they got in touch with us sometime after. And they were our lifeline because we didn't know anyone who'd got mesothelioma, who'd had mesothelioma.

It was totally an alien illness to us. And someone from Hassag came out and told us more all about it.

And people were actually living with this illness because as far as I was concerned at the time, Doug was just gonna die.

And I think that's important. Cause that picks up with Charlie's story. And Charlie's often talked about the impact on her of grief, of getting a diagnosis that's not curative.

And just from your experience, Max, you know, what did that make you feel like when Charlie got that diagnosis? And it's not curative.

To hear the words inoperable and incurable was quite profound, really. You know, we're young women with our backgrounds being in the military and having fought in wars, et cetera.

We're kind of like we're invincible to do you know what I mean? We're immortal type thing. And then to actually hear those.

It's like that moment you see in a movie where everything just goes silence and it's just kind of like that Matrix sort of like slow motion thing. But just to hear that and like, you touched on grief.

And it is a sense of grief because the person who you've married, the person who you fell in love with, the person you've been supporting for so many years, you feel like they're going to be taken straight away.

Yes.

It's that sense of. That's mine. You can't take that away from me. And it is just.

You're overcoming the feelings that you're feeling inside and you're trying to support your loved one. But with, with, with my journey and what I've taught myself and encouraging other people to do, it's a sense of grief. Yes.

But it's a shift of mindset as well. Right. With egfr, yes, it's incurable. Yes. It's in, well, some. In some cases inoperable.

But changing or challenging yourself to change your mindset and says, yeah, Charlie's not dying with lung cancer, she's now living with lung cancer.

Right.

And that's totally. We've embraced that strap line. Living with Cancer. We've really embraced it as a Charlie as the patient, and me as the caregiver, the loved one.

And that's how we've actually told our friends and family is, yeah, people live with chronic conditions, whether it's diabetes, hiv, whatever. People are living with those chronic conditions now. People are now aligning. You know, we spoke about. Well, you heard about the stigma side of things.

Let's get rid of that stigma. People now living with these cancers and thriving. Do you know what I mean? So it's just. It's all about that change of mindset.

But like I say, the initial stage was a sense of grief.

Yes. And then I got very cross, very angry as well.

I can imagine.

I went through every emotion that you could ever, ever think of within the first eight weeks. Yeah, I really was hopeless.

Yeah.

But then we got going to.

We went to a coffee morning which was run by the charity, as I say, Hassag, and we saw other people there that had got the same illness, and they were living, as you say. And so that just changed the mindset completely then.

And I thought, right, we're going for this, you know, and whatever they throw at us, we'll have and we're gonna get through this and Doug's gonna keep living.

Yeah.

And it's amazing that you both had very similar experiences. But I know, Lynne, when your dad was diagnosed with mesothelioma, there was nothing, was there?

There was very little. He was offered chemotherapy that they said wouldn't be very beneficial to him and basically said, go home and get your affairs in order.

And you talk about grief. I can remember, it's 20 odd years ago, opening a diary. I know we don't do that now. We go on our phones.

But I can remember opening the diary because I was planning something a few months down the line and it took my breath away. And I thought, oh, my goodness, is he still gonna be with us then? And I felt like I can't. I can't carry on supporting him if this is how I feel.

So I did reach out and have counseling, which helped me, I don't know, line things up in my mind so that I could then concentrate on the living, the things now enjoy in life with him rather than thinking about what's in the future. And it was about winding my mind back to living the now and the living, rather than thinking about what there is to come in the future.

So he didn't get any treatment. There was some chemotherapy, which is now available to everybody at the point of need. But he Lived in the wrong postcode.

So he didn't get any treatment. So we had to navigate that as well. But yeah, it takes an awful lot to try and concentrate on the living and so on.

You have to practice that in your mind, I think. I don't think it comes easily.

But the other thing that I found talking to other patients is the difficult bit for people is you say for the first eight weeks, Barbara, that you were in shock, you were angry, you had all of these emotions.

But I find that when patients start treatment, you can focus on something and that shock kind of subsides and then you're concentrating on treatment and what those side effects might be. And I think the mindset changes again.

You're right. Yes. I had something then to get my teeth into a goal. Right.

We've got 10 treatments of radiotherapy to get through and then after that we'll start immunotherapy. So yes, then I had a plan and I was better for that.

Did you find that the initial feeling of. Some of my family members say they feel quite hopeless, that they're watching their loved one. And you couldn't fix it?

I couldn't fix it. That was my problem.

But wasn't in charge. No. But having the treatment and thinking, well, I can do something here, I've got a role to play here.

Cause I'm gonna help, you know, maybe make nice food for Doug and you know, keep an eye on Max for any side effects or, you know, that gives you a sense of purpose and a bit of control back, would you say?

Absolutely. So touching on what you said about having a plan, you can't control the non controllables, if that makes sense in cancer, you can't.

But you can control the controllables. So like you mentioned about making food, you can control that and making memories, making nice things and stuff like that.

Certainly when it came to Charlie's diagnosis, and Charlie's very stubborn, I think everyone would agree with that. She's very head on, very much right, okay, we've got a problem, let's fix it type thing. Not necessarily fix it, but try.

And how can we change the situation? How can we improve it? How can we influence it?

So when it came to actually telling our friends and family, we remained extremely positive because it gives them a positive uplift, if that makes sense. So we were controlling the narrative, if you want to call it that. And we were controlling what can we do?

So we were living with cancer now, do you know what I mean? So it's having that sense of control and very much so. Charlie's been adamant that she wants this and this. She's done lots of research, et cetera.

We've sat down together.

Even when it came to Charlie's surgery last year, we both sat down and talked through it, spoke about the pros and cons, et cetera, and we agreed, yeah, this is the way forward. Do you know what I mean? It was very. A joint, joint decision, if that makes sense. But please feel free to chip in at any time.

But you've got a problem, you try and fix it.

Yeah.

And if it's. If you can't fix it, it's a way of life. But you see, when you're first diagnosed, it wasn't a way of life at all. It wasn't life.

All we could think of was death.

Absolutely. I mean, we were told on the Wednesday, the official diagnosis on the Thursday, I woke up very early in the morning. I'm not a crier. I'm not a crier.

But Thursday, from about 1 o' clock in the morning, I cried and cried and cried to let my emotional side of things, just to get out, drafted an email to my boss who lives in America, and I rewrote the email and so on and so forth because I couldn't actually physically speak.

Right.

Even though he was awake, he could see me, I was online, but I just could not physically speak because I had, like you say, anger, emotion, that raw side of the emotional side of things.

And anxiety as well.

Yeah.

What does lie in the future?

Absolutely. Your soulmate.

Never been ill. You could write on a postage, the amount of times you've been to a gp and then suddenly you've got this terminal diagnosis.

And what support was there for you guys, though?

Because, you know, I know as a nurse, when a patient's sitting in clinic and you're giving them that devastating diagnosis, a lot of the focus is on the patient and preparing them for their treatment and their journey ahead. But you come as a pair.

So, you know, did you find that the healthcare professionals at any time brought you in and made you feel that you were as much a part of this as your loved ones?

From my point of view, every oncology appointment Charlie's been to, I've always been there. Because, like you say, you are a team. We are a pair. We call ourselves Batman and Robin. Charlie's Batman, I'm Robin.

We do have photos, but that's another conversation, maybe of a pint, not over some water, but we do things together and we're only stronger together. And I mean, that not just for me and Charlie, but everyone in the cancer fight. We're always stronger together.

Whether it's the oncologist, whether it's the nurse, whether it's the hospice, whether it's a volunteer at the hospital, Everyone plays a part in the journey. And, you know, and you, I don't know if you've heard the story about NASA.

You know, if you go into a NASA area in America, you walk in and you speak to cleaner, go watch your mission. I'm here to put man on the moon or put people in space. Oh, really? Everyone plays a part.

And certainly when I work with my teams, Charlene will know this. Think of a clock. The smallest cog always serves the biggest cog. If you take that smallest cog out, it won't work. Yeah.

So from my point of view, from our journey, the nurse, initially, it was mentioned on the previous podcast, the simple touch on the shoulder and saying, how are you doing? Oh, that was me. Right? That was me. I was gone.

Okay.

I would have been gone as well.

But you felt that you were valued.

Oh, yeah. I mean, it was just in floods of tears because Charlie wasn't there at the time. She was dealing with the oncologist.

Just go getting some more information. And I couldn't find myself to cry in front of Charlie for whatever reason I can now, but I just couldn't because I had to remain strong.

Right.

Why do we think we need to do that then?

I don't know.

I think it's.

It's crazy.

Yeah, it is. It's for the, you know, not alpha male, but do you know what I mean? It's that element of I want to.

Be in control, someone, my loved ones, I fix everything. But I couldn't fix that.

Exactly that. And it could. It could be the element of that saying, the team's damaged. We need to do something.

We need to, you know, take control and be the strongest.

I think sometimes as well, we feel that we're propping them up and if by crying, we're gonna collapse in a big old heap. But there's nothing wrong with collapsing in a big old heap together, is there?

Absolutely not.

That's the thing.

The other thing I found as well, and I don't know if other people have had that, my dad kind of tried to push everybody away as well. I don't know if that was a coping mechanism, but he would. If we did things for him, he'd get really cross.

There was once he had it in his head that he wanted to get jobs done around the house to prevent my mum from having to ever worry about doing them in the future. And he decided that he was gonna change the side garage door from a wooden to a upvc. And he couldn't do it.

So he said he sat on the steps of the conservatory and barked orders at us. And my husband and I are not very good at diy and he just got more and more cross with us.

And he used to do the same with my mum as well and get angry with.

Because he was frustrated. Cause he couldn't do it himself.

He was the alpha male. He was the. We always used to say, daddy mend it when we were small. And whatever it was in life, he would fix it. And he couldn't do that anymore.

And he really struggled with that and kind of took it out on us. And I did the same thing. Well, I need to be strong for him now. So if I cry, that means that I'm weak to him and he won't come to me for support.

But now, many years on, I realize that it's okay for you to all have a sob together. Cause it just takes that anxiety away. And you're all singing from the same hymn sheet. But I think we're too scared to do that.

Sometimes we feel like we have to be strong for people no matter what. And that's not always the answer. That's not always good for us as carers to put on a brave face, be stoical. We can do this. You can lean on me.

Because we collapse sometimes and we might do that behind closed doors, but it's good to do it with somebody else sometimes. The patient, the person that has the cancer as well.

Yeah, you're absolutely right. And I think it's important that, you know, carers have that recognition and permission that.

And I sometimes say to patients and their family members or to carers, often carers will say to me, it was not about me when I asked them, are you okay? Is there anything I can do for you? Well, it's not about me, is it? It's about the patient. And you know, the focus needs to be on them.

You've got to get them treated, look after them. But without you being there as a.

As the family member and support, if you fall in a heap, you're not going to be able to care for that person, are you?

It's a good point, Charlie. When we got the official diagnosis and started the treatment in December, I said to myself, I need counselling.

So I needed to make sure my headspace is in good order to support Charlie and her journey.

So I went off for counselling, not necessarily with the recognised cancer charities, but as a different type of charity and specialized in emergency medical services and also military. So I started chatting away and started getting everything, all my ducks in a row, so to speak. But then I took myself off it.

I said, I feel fine, I'm actually good, good to go, and I'm happy to support. But slowly things will start creeping back, you know, that element of grief will start seeping in and you think, what ifs, what ifs?

And, yeah, sometimes you do need to have that person to reach out to and say, hey, I just need to add someone I can just voice to.

Yeah. And just thinking about treatment.

So often when I worked in the clinical setting and I was starting patients on treatments, either immunotherapy, chemotherapy, even the molecular drugs, they all have side effects.

And you, as a healthcare professional, we rely on our family members, on the patient's families, to ring us and tell us when things aren't going well.

So there's quite a burden of responsibility on the family member to be able to monitor for side effects, know when to ring the hospital and ask, oh, I think things aren't going well. I'm a bit worried about this, having that. That's a lack of responsibility, isn't it?

I think it's a huge responsibility. And it's not just the fact that you'll be the one that will make those phone calls, because it usually is the carer that does it.

It's also navigating whether the patient wants you to do that. Because the amount of times that I've spoken to patients and they've said, I don't want to bother the nurses, they're busy, don't ring them.

And it's taken some encouragement. So it's not just the fact that you're taking on that role as the one that's going to make those phone calls and do that supporting.

It's getting the permissions in the place that aren't easy.

And those conversations are sometimes difficult because it's admitting that there's an issue, whether that's treatment or symptoms from the actual disease itself, that's sometimes difficult for the patient to navigate mentally and then to say to them, I think we need to speak to a medical professional, let me make a phone call. You don't always get the permission to do that either. I don't know if you found that.

And also with that point of phoning the chemo unit or wherever, a little bit of me Thought, oh, I failed if I phoned them because I'm supposed to be looking after Doug, right. And he had every side effect from immunotherapy that you can think of all at once, and it was horrendous.

And eventually, yes, I did have to find the chemo unit to get some different drugs, because they send you home with a bag full of stuff for sickness, diarrhea and all the other symptoms they think are going to occur, but they didn't touch what he'd got. But a little bit of me thought I'd failed by having to ring them. I did ring them and worked out in the end, but, you know, he was pretty bad.

But I thought I could help him and do it myself, but I couldn't.

No.

And I think that point is really important, Barbara, because sometimes we see when patients become less well and they need carers, for instance, and I've said to family members, I think we could do with some carers coming in, oh, no, nurse. Oh, no, I want to do all the washing. I want to do all that personal care for my loved one. But actually, that's a massive role to take on.

Now, I've been qualified as a nurse for 25 years and I've worked in hospices and been trained for three and a half years at university to do that role. But we kind of just expect our family members to take that role on with no training. You know, just how difficult is that?

I'm a volunteer in the inpatient unit in a hospice and we get patients come in, obviously, for palliative care, end of life care. And I say to the wife or husband or daughter or whatever, you can now become wife again. You're not your husband's carer anymore. You can now become.

Because, you know, until then they've been caring for them at home or whatever, and. And they're just the carer, you know, and. And it makes a difference when professionals do everything and. And they can just be there, you.

Know, just picking up on that. Liz, you think that carer, then, is a helpful one? It's a label giver.

You're all singing all dances now, aren't you? You're not just a career cuddly carer.

I mean, I'm not his wife anymore. A cuddly carer. That's her.

You're a pa. And if you're done.

PA yourself, I shall take the carer's allowance away from her.

Yeah, I think we, as a carer, we try and be all things to our loved one and that's not always possible. You can't do it all. It's just not possible. And as time changes and time moves on, that role changes as well. So you might be.

When you're diagnosed, you might be counseling one another, but later on, you might be physically caring for that person. And that role does change.

And even during treatment as well, you kind of go into a nursing role at that point and then step back away after the treatment.

You are so right. Yeah, it's.

It evolves, I think. It does, yeah. That word is massive. A carer. It's a huge, huge word.

Yeah, I completely agree with you. And recently, unfortunately, child was admitted on Christmas Day because her temperature spiked to 38.5.

But that carer role is knowing when to call that hotline that you need to call, when to call your gp, when to call on friends and family, when to call on such a. And like I said previously, Charlie's very stubborn.

And I know at 37.5 the temperature, she needs to call what I need to call, and she needs to go to ae and then I have to put my sergeant major head on and go, right, listen in. This is what's gonna happen. This is what we're gonna do. Okay.

Yeah.

Because it's like, it's not just them in the game. Like you say, everyone focuses on the patient. It's actually the Batman and Robin, so to speak.

Yeah, absolutely.

It's the team.

Yeah. And often, you know, and I say this to relatives all the time.

It's three o' clock in the morning or a weekend where there is no lung cancer nurse at the hospital. You've got your oncology hotline, which is invaluable, but you're kind of on your own, aren't you?

And to make those calls about, do I need to ring now, what do I need to do? Or, you know, they're not eating or drinking. I don't know what to do about that.

I wonder if you feel that maybe having a separate support system for yourselves would be of use, or do you feel that you've got.

Don't know about that one. Really? Because only you know what's happening, what you're going through.

Yeah, but say at 3 o' clock in the morning when Doug's not well and you're there to make that decision about, do I ring an ambulance? Is this an emergency? What do I do? I mean, that's huge pressure, I'd imagine.

Yes. And two occasions I stuck him in the back of the car and took him to a.

Did you?

Yeah.

Okay.

Because he was so ill, this immunotherapy, I mean, he could, he could hardly walk, he'd lost two stone in weight. And it was just horrendous. He got oral thrush, he got everything that they said he might get. He got all at once it was just horrendous.

Yeah. And it's interesting, Matt said, if you hadn't been sergeant Major, would Charlie have even gone to hospital, do you think?

No, I think Charlie's now a little bit more sensible with, with everything that's gone on previously. You know, prior to the diagnosis, she would have gone, yeah, I'll be fine, I'll be fine, I'll be fine.

But no, I think obviously having cancer comes with its worries or its burden and things like that. And I think that's given her the more sensible approach of. Yeah, I need to get something sorted out.

There was a particular time when Charlie was in South Africa and I was ill and I had to take myself to hospital myself because I ended up having pneumonia. But I didn't tell Charlie cause I knew she was having a ball over in South Africa. So we're kind of like devil's advocate with each other.

But now, you know, there's a time when you need the foot needs to be placed firmly on the ground and say, no, listen, we need to do it, we need to do it. And maybe it is that weighing up, you know, the devil and the angel on your shoulder. But I always go, you've got three, three brains or three.

What does your gut say? What does your head say? What does your heart say? Do you know what I mean? And always go with, if you've got saying, you need to go, go.

Yeah, absolutely, yeah.

And I still advocate now and say to patients, I think sometimes that card that says emergency hotline patients and relatives in particular think, well, is this an emergency? You know, the fact that they may have a mouthful of ulcers, is that an emergency? Perhaps not.

But I used to say to my relatives, anything that's not normal for your loved one, ring in. Because they are the could become oncology emergencies. And that's why we have these brilliant acute oncology 24 hour helplines.

So that you're not alone and ring in. So yeah, but there are lots of.

Conversations about, I'm not that bad, don't ring yet.

Yes.

And it's like you say when to do it. I mean, when you took him to hospital, Barbara, did you say, right, that's it, we're going. Or was it a joint agreement?

He was so Ill. By this time, he thought he was dying and I was convinced it was the treatment, not the mesothelioma. So I'm convinced. You're not dying, Doug. You know, it's just this horrendous treatment.

And I managed to get him in the back of the car and got him to Annie. They put him on a drip and sorted him out and stabilised things and gave him some different medication and so on and so forth. So we got it better.

But he didn't object to going because he was not really with us.

No.

I'm just thinking, in that situation, do you have like a buddy in your street or a neighbour you can pull up?

Oh, we live in the sticks, dear.

We haven't got any good.

We haven't got a straight. We got a line.

Well, this is what I'm thinking, because we're.

Fortunately, we live in a cul de sac and there's neighbors we can call upon around the place, but someone like yourself, who's fairly remote and you need help, whether it's actually getting your loved one out of the house into the car or if there's an ambulance, as we know, the ambulance timings to get on the scene is very, very long at the moment. I mean, is there like a hotline you mentioned about or support network?

Well, our family. I mean, we've got a son, one of our sons lives about 10 miles away.

I mean, if I'd have rung him, he would have come, but there again, I can manage, you know, I'm not gonna get him out of bed, bless him.

Yeah, yeah, yeah.

Although afterwards. Well, you should have rung us.

I know, but there we are again. It's a carer thinking that they can do everything.

We're trying to be all singing, all dancing to everybody and, yeah, we don't like to even ask, do we, for help from other people. We can do it.

But anyway, we got him better.

And if you had to give any advice to say, somebody's listening in and their loved one's just been diagnosed with cancer, what support and advice would you offer them? Maybe come to you, Max. What would you say to somebody who's listening in today and their loved one's just been diagnosed with lung cancer?

Speak to the nurses on the oncology team. Speak to them. Speak to what support is available, even local support. We're fortunate enough we live on the Surrey Hampshire border, so we have.

And I've got a name drop here, Phyllis Tuckwell. They've been instrumental in our. In our journey, you know, offering Counseling, offering, therapy also all types of things. But just find out what's.

What's available to yourselves.

You know, whether it's through charities, whether it's through the local hospice, whether there's anyone, Samaritans even, they can potentially help or even talk to, like we are now, just having a conversation. Anyone who's going through the same journey, just reach out. Anyone.

Yeah, definitely. Talking helps.

Certainly does.

It does feel lonely sometimes. Oh, yeah, it does feel lonely. And not feeling like you're the only one that is experiencing what you're going through makes a massive difference.

And it must have an impact on your life because, you know, often people may be working, have hobbies and interests. It may be, you know, if you've retired and you've got this.

This life that you're gonna live and you're got this time that you can now go and do your hobbies and interests and then suddenly it all stops. Yeah.

And all you do is go to hospital appointments. That's all you do.

And that must be so hard. I don't know if you can give some thoughts on this, Max. That must be really hard if you're trying to work full time. I mean, how on earth.

I have this with. I've had relatives before, give up work because of all the hospital appointments. It's just sort of almost expected from certain.

Well, I suppose from us as nurses and healthcare team, that somebody will bring that person to hospital and bring them to their appointments, their CT scans, their blood tests, their treatment goes on. And I've had patients, relatives that have given up work.

No, it's a very valid point. Thankfully, my work have been absolutely amazing. They really have.

And what I'd like to add as well, the company that I work for offer health insurance through the package that we have, and Charlie's on that package.

And if it wasn't having that package, Charlie wouldn't be here right now because we had to resort going privately to obviously get some of the treatment and such like. So I'm very, very grateful for that. But work have been very flexible with me because I do work from home some of the time, but I do travel a lot.

They've been absolutely fantastic. And with our. With Charlie's medical appointments, we know that far in advance.

I can block off and just say, I'm going to be with Charlie on that certain day and so on and so forth. But before they ask how I'm doing, they always ask how Charlie's doing. So she's kind of like part of the works family, as well, okay, that's good.

Yeah, you've got that. Very, very, very, very grateful and I honestly cannot thank them enough for the support they've provided for myself and Charlie about journey.

But in a way work has also been a distraction.

Right.

As well.

Yeah.

So when you know, you, you spoke about it, your hobbies and your life all stops, you're on hold. Yeah.

And I think I'm fortunate that I can work from home and when I'm just feeling so overwhelmed with all cancer related things, I can just throw myself into work and just put my mind at rest if that makes sense.

And just throwing myself into that because I work for a medical company that helps save lives through giving devices etc and in a way I feel a bit guilty because if I'm not doing my work then other people are going to be affected for me not doing my work, if that makes sense. So it's kind of like the ripple effect.

Right.

But no, work are being really, really good. And some of the questions they've asked back through my leadership saying, well, is she going to stop work?

She's, you know, her wife's got stage four lung cancer. Well that means it's going to be short lived.

Right.

And it's just saying, hang on a minute, stop again, it's the stigma. Yeah, stop. This is what's happening, this is what we're doing. So people are really invested in how Charlie's doing, etc. Etc.

But there's also, they're asking questions, oh, we need to have a backup plan. Then you feel guilty for not for taking time off work and so on and so forth.

But I think I've proven to my company that it's workable, if that makes sense. Yeah, it's achievable.

Yeah.

Maybe just having some flexible working and telling your work that what's going on so that if you're not fully focused on your job, they understand the reasons behind that and can offer support if they are able to.

Yeah. And they've been really, really good with. When I go on work trips, Charlie can come along with me.

Okay.

Yeah. So then I feel at peace in that sense that she's being looked after because I'm with her, if that makes sense.

Brilliant.

Brilliant. Yeah. Well, thank you all so much for sharing.

Lynn, Max and Barbara, thank you so much for coming in today because I think it is important that we recognise it's not just the patient, that you're all very val play an important role and actually, you know, we couldn't look after our patients from a healthcare perspective without you. So thank you very much. But also, again, as I said before, it's important to remember that you are equally valuable.

Take some time for yourselves, maybe have a day out, organise maybe to go out with some friends so that you have a day where you're away from cancer.

We will put some things on the website, again, some helpful support and advice and signpost you to other charities that can provide support and advice. But for now, I'd just like to say thank you to my lovely guests and we look forward to welcoming you back to our next episode of Breathe Strong.

Thank you and goodbye.

Sa.