Relationships can change significantly when facing a cancer diagnosis.

The guests discuss how they prefer to view their partners as "co-pilots" instead of "carers," emphasising a more positive dynamic, and they share personal experiences about how their roles have shifted but the core of their relationships remains strong.

The conversation highlights the emotional impact of cancer on friendships, family ties, and even dating, with some expressing the struggle of feeling distant from friends after their diagnosis.

Ultimately, they encourage listeners to recognise the importance of self-love and connection, especially on Valentine’s Day, reminding them that they are more than just their diagnosis.

Obviously, sometimes she takes on the role of the carer and I don't like that term.

So my term instead of carer is co pilot.

So she's my co pilot and that feels much more positive and much less like carer and patient.

Hello and welcome to Breathe Strong.

I'm your host, Rachel, and I'd like to welcome you all to join us today in this podcast.

We will be talking about relationships, but before we get into that, I just want to let you know about some exciting news we're delighted to be welcoming into the studio Professor Sanjay Poppat.

Professor Poppat is a medical consultant, medical oncologist based at the Royal Marsden in London.

He is very experienced and has a wealth of knowledge and expertise in all things related to lung cancer and mesothelioma treatment.

He has led on clinical trials and was the chair of the British Thoracic Oncology Group Conference until very recently.

Now, this is your opportunity to be able to ask a real expert any of those burning questions that you may have to do with lung cancer or mesothelioma.

Often we sit in front of doctors and we have questions that we want to ask, but we're worried about them being silly questions or not taking up too much of the oncologist's time.

So this is your opportunity to write in to me, Rachel.

My email address is breathestrongassag.

That's H-A-S-A-E.co.uk, so it's breathestrongassag.co.uk so please send in all your questions and I will present them to.

To Dr. Popat.

Thank you for that.

So, as we dive into today, into this topic of relationships, I'm delighted to welcome back into the studio Charlie.

Hello, Mel.

Good morning.

Doug.

Hi.

And Lesley.

Good morning.

So today being Valentine's Day, I thought, what a great day to talk about relationships.

Now, relationships can take on all sorts of different meanings.

They can be relationships with our loved ones, relationships in families, or relationships between friends, colleagues and people we work alongside.

So when we get given a cancer diagnosis, this can have a significant impact on relationships and we're going to talk about that today.

So some of this could be that.

It could be your body image has changed due to treatment related side effects such as skin rashes, the way we feel about our bodies, how we think our bodies maybe have let us down a bit because we now have this cancer diagnosis.

It can also impact on our psychological sense of who we are and where we now fit into life.

Some of the side Effects of cancer such as fatigue, breathlessness and pain can really impact on our physical relationships with our loved ones.

A recent study by EGFR Positive UK looked at the impact of side effects on treatment and found that patients often reported feeling low self esteem.

There's also the side of relationships to do with our friends and family.

And often patients will say to me that they got given a cancer diagnosis and their friends suddenly started to become quite distant.

They didn't know really what to say to them, how to resp to this person that now has this cancer diagnosis.

And often patients then feel just that, patients.

And we'll talk about that today as well, because actually, is that a good term?

Should we be labelling each other as patients?

And some people have said that as a result of being diagnosed with cancer, they've actually lost friendships and there's a sense of bereavement due to that.

We'll also talk about that thorny topic of dating.

How the heck do you date when you have a cancer diagnosis?

It's hard enough in today's society trying to navigate that pathway of dating without then having the added difficulty of having a cancer diagnosis.

So as we consider all of this in our short time together, just be kind to yourself as you listen to us today.

Don't judge yourselves, know that we're here, we're experiencing similar things, and I hope that you enjoy our podcast today.

So, first of all, I think it'd be good to just have a chat about that word patient, because it often comes up and as nurses we just talk about patients this, patience that.

But actually, is that something you'd like to be called?

No.

Okay, thanks, Charlie.

So thinking about that then, what would you prefer?

So we were having a quick discussion about this immediately before recording and I think for me it's the word patient.

Sounds like we are not active in our own treatment and we're waiting for me, we're waiting for people to do things, decide things, et cetera.

But I think the way that I've seen my journey is actually I'm an active participant and I need to understand treatment options, courses of action.

That's the way I viewed this.

I feel for me, patient's the wrong word.

So I mean simple solution.

I'm Charlie, I'm an individual, especially the way that targeted treatment is now going.

And with lung cancer, it's such an individual.

I'm trying to think of the right word for the, for the individual treatments, the vaccines, etc, what's coming down the line.

Yeah, so for me, I think people with because fundamentally we're all still people.

We've got relationships, families, all of those things.

And I think patient almost blocks out about the individual.

Yeah.

Because it's.

And I get it from a work perspective, you know, you need to talk about cohorts of people and the.

You know, but I think people with egfr, for me, might.

Might be a suggestion.

Okay.

What do you feel about that, Doug?

I thought he was going to ask me next.

I don't really have a.

Here we go.

A specific thought on it.

I hadn't thought about it before until you mentioned it today.

Yeah, yeah.

Like Charlie says, it's patient is generic, isn't it?

You know, you're a patient, you're a patient, you know, But I don't know whether a lot of oncologists and that actually call you as a patient, do they?

I mean, I've always been called by my name and referred to.

Yeah, but what other name is there that apart from your own name?

Is there something specific that.

Yeah, maybe we should think about that because I think in a lot of the literature you're referred to as patients.

And actually I hadn't even really considered it until it was raised to me a few weeks ago.

And hearing you, Charlie, say about patient means you're passive, you're not involved.

I think that's really powerful because actually what we want to be trying to do as healthcare professionals is give our patients power and control back.

Yeah.

And that shared decision making, that's why, for me, I think it's now a term, so I understand where it's been, but I think the term now is maybe slightly defunct with actually shared decision making being one of the primary drivers.

And I know with our disease, EGFR, now, thank goodness, there's two options for exon 19 deletion patients immediately.

So there's immediately.

Now those being diagnosed have a choice to make.

And that's why I sort of talk about, you know, that shared decision making, that individual treatment decision now.

So person being diagnosed with what I have now immediately needs to actually understand better and make a decision over their first line treatment.

Yeah.

Very interesting.

I wonder if partly for me, it depends on how well you are.

So when I was first diagnosed, I was very sick and I was in hospital and I had treatment, I had surgery, I was in for chemo, I felt like a patient, I did not feel like a person.

I was ill, wasn't well enough to make decisions about my own care at that stage.

Okay.

But now I don't feel like a patient.

And Yet I have stage four allegedly incurable lung cancer.

So I think maybe it depends on where you're sitting, you know, where your identity is at any given point.

And sometimes you're.

You're even an inpatient.

Yeah, but as Charlie said, you know, and what we're saying is, essentially we've got more to our identities than just who we are as people with cancer.

So, yes, I'm a person with cancer, but I'm also a mom and a fiance and a daughter.

And so it works within the hospital setting.

But if you're speaking to an individual, then actually you're speaking to someone with lung cancer.

But I understand within the setting of hospital life and the world of cancer, we need a word to describe the people, and so we get called patients.

But actually, people with lung cancer of all the different types is maybe more helpful.

And I think at one point in my journey, I kind of.

I moved from being a patient to being a person, and now I'm a person with.

So for me, it kind of depends on how sick you are, essentially.

I would agree with what you said there, Mel.

Definitely.

You know, we are not our diagnosis.

We are people with cancer, be it egfr, be it meso, be it any type of cancer.

Yeah, well, that's really important.

And I will certainly be going away and thinking about that and sharing that with my nursing colleagues and community, so thank you.

Do you think having that label, then, has impacted on relationships?

So thinking about relationships within your partners, did you find that when you got your cancer diagnosis, there was a dynamic shift in the relationship?

Did anything change in your relationships?

No, I don't think so.

No.

No, we still argue.

She doesn't argue with you when you've got cancer, Doug.

That's outrageous.

Get her in here.

Happy Valentine's, Doug.

Yeah, no, I don't think we.

Well, certain things, yeah, obviously.

I mean, I couldn't do a lot of things and still can't.

What I used to do, so she takes on that role.

But, you know, she's brilliant.

She's adaptable.

If I can't go and get the firewood in for the wood burner, she goes against it.

Okay.

She won't do is grab a ladder.

Well.

Well, there's time for that, Doc.

You can.

You can get practicing with that.

So do you think that actually your roles have changed in your relationships, but your relationship itself, whatever that means, hasn't?

Yeah, I think you've hit the nail right on the head there.

Yeah.

You know, I used to do everything.

The painting, decorating, gardening, you know, which luckily she's always been a really keen gardener.

Problem being there, that she couldn't start the lawnmower.

We had to wait for the postman to come and he's just love it.

So in the end I succumbed and bought her a new battery one.

So she just has to pull the lever up.

But, yeah, yeah, roles have changed.

Definitely.

Yeah, she's.

She definitely takes the lead, you know.

Well, she always did, but I mean, I'll tell her that now.

She's allowed to know that now.

Yeah, yeah, yeah.

Lots of things that I. I can't do and.

And she will, she will have a go at them.

Right, yeah.

And anybody else, has anyone noticed anything subtle that's changed at all?

Or would you say, you know, that on the whole things have carried on?

I mean, I don't know.

I think our relationship fundamentally is the same, but I think that we've always had a relationship where, you know, joking aside, pink jobs, blue jobs, et cetera, clearly as two women, we've had to share all of the jobs and I think for us, that's the fundamental basis of our relationship is it's shared.

It's not.

That's your responsibility, that's mine.

So have low level things changed round?

Yes and no, but it depends on who's busy that day, as opposed to me being a cancer patient.

So there's very obvious points where I had surgery last March and post surgery, I was clearly in recovery.

So very much during that period of time, Max did the donkey work around the house, but as I sort of, you know, came back online, as it were, we've gone back to much more of a shared.

I mean, ask Max, she might have a different opinion, but I think we're back to, you know, I'll cook dinner if I'm not busy and Max is busy with work or vice versa.

So it's a really interesting one, isn't it?

So it's so personal.

And with me and Sarah, I was really sick for quite a long time and so she took on a totally different role in terms of cooking and looking after me and everything else.

But I think there's so many strands to the things that change and so the core, the love, is the same, if not brighter, because you're so much more aware of the preciousness and beauty of life and there is an element of.

So her name is Sarah, my partner, and it's great fun to call her Sarah the carer, but she is not the carer.

But obviously sometimes she takes on the role of the carer and I don't like that term.

I don't either.

So my term instead of carer is co pilot.

So she's my co pilot.

Yeah.

And that feels much more positive and much less like carer and patient because the word carer is associated with the word patient.

So she is my co pilot.

And actually, you know, I'm older than you.

I've probably also got a bit of long Covid, a bit of menopause and the drug makes me tired.

So by about 4 in the afternoon, you know, I bounce about in life like Tigger.

But by about 4 I've totally lost any kind of energy.

How do you last that long?

Coffee.

Yeah.

So she does look after me.

And that is true, she does look after me.

But then I guess I look after her in other ways.

You know, there's all sorts of different dynamics within a relationship and it is about.

It's not just about the practical things, although they take up a lot of time and energy, but it's also about how you go through life together.

And in my instance, you know, and I'm sure lots of you and if it's not a partner, it might be a friend or a sister or brother or whatever it is that nobody knows me and my cancer like Sarah does.

So she has, she's part of it.

It's like it's not just me, we are in it together.

She is as impacted by how I feel, by my scanxiety, by my results, whatever it might be, has as much impact on her as it does on me, if not more.

And I sometimes feel like it's much harder for her because she's got the idea that one day I might not be here anymore.

Yeah, yeah, I'd 100% agree with you.

It's a totally different way of living your life when you're living with not

yet curable cancer and that uncertainty about the future like you say and what that will be for the relationship.

But yeah, but it's interesting how you talk about the love and the brightness coming through and you know, in the old fashioned days we used to say that two became one together.

And my dad talks about this quite frequently cause my mum recently died, how he feels a bit like amputated that that person's now not in his life.

And it wasn't that they were two separate people, obviously very different, but they had such a close connection with each.

Like you say about Sarah, that you're.

She's a co pilot.

I think that's a brilliant expression to use and that you're on this together.

Yeah.

And Leslie, just thinking about that then, because, you know, I'm very aware being single myself, that when things go wrong, you go home to an empty house and it.

And it's you.

So how, how, what's it been like for you with relationships?

Have you found that family dynamics, friendships have changed or got better or, you know, how do you cope?

I.

Being very, very independent, I have been my whole life, really.

I have learned to sort of, and this is to my own detriment, have learned to navigate a lot of this on my own.

Some family relationships have actually got better, which has been quite nice.

I now have a really, really good relationship with a brother that, you know, we didn't talk to each other a beforehand, but now we speak quite regularly, which has been really, really lovely.

And actually there have been certain friendships which have really, really shone as well, that people have just.

Who I didn't expect to show up, that have shown up and reconnecting with old friends as well, which has been really, really lovely and needed.

But I do still find that, I mean, this week I've actually been quite, I've had quite an emotionally flat week and I haven't, I haven't reached out to anybody because, because everybody.

I've found everybody.

I've had it in the past.

Sometimes you'll reach out and they're not there.

So you just, you tend to just go through it on your own.

So I'm still, I'm still navigating that myself because I've only recently finished.

Finished my treatment.

So I am, I'm learning.

It's a, it's a very much a learning curve for me.

And I, I know I have to get with asking for help and support.

Yeah.

But it's difficult, I think, isn't it?

And you know, there's always that age old.

Oh, I don't want to be a burden.

Yes.

If it's not your life partner, if it's a friend or family member, you.

There is that sense where you feel like you're.

You're being a bit of a pain.

Yeah, yeah, exactly, exactly that.

Exactly that.

Because, you know, especially with, with friendships, they have their own families, they.

That, you know, and we're all of a certain age where family members are getting ill, so you don't want to burn, burden them with your own illness.

So you do.

I have felt like I have gone through a lot of this on my own, but I have, I've realized that I don't have to be alone and there is a lot of Support out there from.

From places where I didn't think there would be support which has been.

That's a.

That's a positive.

That's a real positive.

Yes, that's a.

Like, like, like Mel was saying, it's a bit of a light shining through.

Absolutely, absolutely.

That people that you didn't think would show up actually have.

Don't get me wrong, it would be really lovely to have a co pilot there just to sometimes just, you know, take that strain off.

Because I have had to, you know, just help with the paperwork sometimes because all of that sort of thing is.

It's a bit of a minefield.

When you have a cancer diagnosis.

There is a lot more of that sort of stuff to do and I've had to do everything on my own.

So in that respect, it would be.

Be lovely to just have a little bit of help there sometimes.

Yeah.

And just to have someone just to lean on, to hold my hand when I'm feeling pretty sad of an evening.

That would be quite nice.

Yeah.

And talking about that, I remember one of my patients sent me and it was during COVID and he was talking about.

He was online dating, bless him, and he was, you know, lovely that he shared this with me.

And he said, oh, you know, Covid's bad enough, you know, trying to navigate online dating, maybe doing video chats with somebody, he said, and then you start to get to talk to somebody and then you have to tell them you've got cancer, he says, and you should get blocked.

I just think, how on earth do you get to meet somebody that will stick around when you have a cancer diagnosis?

I mean, you know, it's not impossible.

No, but it is difficult, isn't it?

And I've been.

I'm nearly at that stage now, but I think whilst I'm sort of in that cat just finished treatment stage is not the right time to be thinking about dating.

I need to think about myself.

But be nice to go, go out there dating.

But where do you meet people?

You know, that's the thing.

And when is the right time to tell them that you've got cancer?

And I think I've been doing a lot of reading about this in the last couple of weeks and I think, I think you, you don't have to disclose right away.

I mean, what.

There's nothing wrong with going out there and having a few dates and just being yourself.

You don't have to be the person that's got cancer.

Just go out, go out there and be yourself.

And that's what I Would.

That was.

That is what I would suggest.

I love it.

Yes.

Good for you.

Yeah.

Yeah.

Nice.

That's nice bit of advice, that is.

Yeah.

I think it goes back to that beginning of we're not just a cancer patient.

There's so many layers to an identity,

you know, and then for a bit further down, have a few dates, be yourself, you know, And I think.

I think I just.

I want to go out there and I want people to see me as, you know, attractive or funny or interesting.

I don't want to just all of them.

The person I don't want to.

You're already married,

but.

Yeah.

You don't want to be defined as that person who's got cancer, you know?

Yeah, yeah.

That's really important.

Nor do you need to be.

No, I think that's the key, what you're saying.

Yeah, yeah.

You don't need to be.

It's not something you have to wear on your head.

Exactly.

None of us are.

None of us are.

We are.

Be easier because you wouldn't have to tell them one of them post it notes.

But it's that thing, isn't it?

I had a friend who was about to start dating with stage four cancer, and I remember her and I discussing it and she said, you know, ooh, how do I start this?

And why would somebody want to date me?

And I'm like, babe, I would much rather date you with cancer than some absolute idiot without cancer.

Yeah, yeah.

Like, you know, it's not the most important thing about you.

No.

But the fact you are a really fabulous badass.

Am I allowed to say badass?

Yeah, I said it.

Don't worry.

Yes.

The fact you are a really fabulous human is way more important than the fact that you have cancer.

And the right person will notice that and the wrong person will be put off and like, goodbye to those.

Well, the wrong person is not going to be the right person.

No, that's very true.

Yeah.

Yeah, exactly.

Yeah.

You know, and actually the right person, they're not looking for a perfect life, are they?

No, no, no.

And I think it's really true what you say.

I had one of my very best friends when I was in nursing.

We'd known each other for years.

She was hilariously funny and she got diagnosed with leukemia and initially it was all positive and then it came back, so we knew that things were not good.

So she.

We used to go to singles nights, me and Sally, and we'd put men off because we couldn't stop hooting with laughter.

But anyway, she went once without me.

And that was the turning point because she actually met someone, and this guy was absolutely fantastic.

He knew about her cancer diagnosis, but he was just like, well, like you said, I'm dating Sally.

I'm not dating a patient with cancer.

And he was with her right to the end.

And the joy that relationship brought to both of them because he said to me at her funeral, I'm so glad I met Sally and I was part of her life, even though it was a short period, I. I wouldn't have changed it for the world.

So, yeah, I think there's some hope out there, people.

So don't give up is what.

Let's set up a cancer dating app.

That could be our next line.

Don't take Rachel with you, because she obviously puts them off.

I put them off with my laughing, so just don't take me along.

But, you know, it's nice to know that, you know, it's the person that counts, not your diagnosis.

Without a doubt.

Exactly.

Yeah.

And has anyone had any experiences where they've noticed changes in relationships, thinking about work?

Has anyone noticed any differences to how they're treated at work and situations there?

What's work?

Oh, right.

Not all of us are retired.

So I am.

I went back to work about this time last year, and interestingly, I didn't actually tell my work colleagues because the way it had worked, I'd gone into a different team.

So they knew I'd been off work, but they didn't know initially why.

And I only told them when I was about to leave work to have surgery.

And I just reflect on that and go, why didn't I tell anyone?

So my line manager knew.

Yeah, I wasn't keeping it a secret from the point of view of that, but I didn't tell my work colleagues.

But it's interesting because this week, just gone.

I've just gone back to work.

So, yeah, more lives than a cat at the moment.

But I'm not counting them up.

And I haven't yet seen my work team, so it'd be interesting because now I told them all before I went for my surgery that I was a stage four lung cats patient.

There's that word patient again.

I know.

But, yeah, until we.

Until we think of a better word.

But, yeah, so I don't.

I don't know right now, but I will feed back to you.

Yeah, but I mean, I don't.

It'd be interesting.

It'd be interesting.

And equally, it's.

I am slightly different to the person I took over last year because, you Know I, I know I need to protect myself going back to work and so I'm absolutely there to do a good job.

But with the military it's an all encompassing type job, whereas I know I, I can't be the officer I was before.

So I'm much more aware and there's a bit of me that's then concerned of how I'm viewed and my identity and bits at work.

But so far I can't comment on my work colleagues.

That's really interesting, really interesting.

What about you, Leslie?

Because I know you're still working.

Yes.

So I mean I've been quite open right from the start and I've always wanted to be open and it's up to that person then if they, if they feel uncomfortable talking about it.

I've never felt uncomfortable talking about it and I've been treated the same, maybe sort of looked after a little bit better.

I, they don't expect me to do.

I mean, sometimes I would be, I mean I would leave the house at about 8 o' clock and not get home until after 7 o' clock at night and it's a long day.

So now I make sure that my days are a lot shorter.

And like you, Charlie, I am more aware of how I am now rather than how I'm looked upon in the office.

Like on Friday I took a mental health day, as in, I still worked from home but I actually said, look, I can't come in today because I don't, I don't really feel like being around people and they're sort of taking all of that on board and I'm hoping that, you know, they will still be like that in a few months time, I don't know yet again, I'm just still navigating through it all.

If I may.

Yes.

What I did do this week, returning to work.

So there is a government employer employee advice and I'll dig it out.

Oh yeah, we could share that through.

Share that with the thing.

But yeah, absolutely.

So the reasonable adjustments for cancer patients.

Yes.

So absolutely.

For those that their employer might not be quite as understanding, that link might be quite useful.

Yes.

Yeah.

I mean I'm lucky because mine have been really, really understanding.

So yeah, ditto.

Yeah, I would have thought most bosses would have.

Well, you say that sometimes I think we're, when we're in this zero hours contract climate that quite a lot of people are in.

I had a patient who was scared to tell his boss and he said he'll sack me.

And I said, well he can't Sack you.

That's illegal, he said, but he'll find other ways.

So he'll say to me, oh, you're not up to scratch.

You're not as able to do the job as you once were.

I've noticed things aren't as good about you, he said.

And it will be very subtle the way that they will out me, he said, but they.

I'm scared of being sacked.

And that got me thinking.

You know, I've obviously, I've had colleagues at work who've been diagnosed with cancer and we've tried to be compassionate and caring, but I think maybe not all bosses are going to be like that and it'd be good.

I wouldn't think of that.

I'll send it through.

And I know, yeah, some of our.

So I'm certainly not going to name names on this, but I know that some of the people that I'm aware of through EGFR also sadly felt they needed to leave work because they couldn't commit to what they used to and were not necessarily given a reasonable period of time to adjust.

And I know that some of them now regret because various different work policies and ill health pensions and bits actually prevent people then going back to work, which seems counterintuitive to me.

I'm.

I'm grateful I'm not in this situation, but there are definitely EGFR patients that I'm aware of that are now partly stuck, that they feel they're, you know, if I say a bit like you, Mel, initially they were quite ill, they needed to, you know, felt they couldn't be at work, but now they're on treatment, the disease is stable, they feel that they could give back, but they, they actually can't without losing their ill health pension.

So, yeah, it's a very interesting scenario.

I think it's a huge topic.

I mean, it could be a podcast all of its own.

Yes, yes.

And actually working with cancer, there is an Instagram account.

I think it's probably also a website.

But a lot needs to happen about cancer, chronic health conditions and the workplace.

And employers, often through no fault of their own other than ignorance and lack of experience, don't understand that we have protected characteristics, that you can't actually fire somebody that easily when they've got cancer, that reasonable adjustments are required.

So there's a big piece of learning that really needs to be mandatory for employers, I would say, to ensure that people are treated fairly.

And I think the other issue with that is that we look well, but what we're carrying beneath, we all look very well and yet we all have a lung cancer of one type or the other.

And there are all sorts of things going on at any given time, physically, mentally, emotionally, that impact our ability to do the job in the way that we did before.

But with reasonable adjustments we can.

And we can do as good a job as we did before.

But it needs a bit of meeting.

Yeah.

And I have heard worryingly large numbers of stories, like you're mentioning, Charlie, of people who have not been supported and quite the opposite actually let go.

Okay.

Wedged out, you know, so it's a really complicated area, I think.

And we're here to talk about relationships.

And that is a relationship.

There's a whole load of policy and you know, organizations need not just a sickness policy, but a cancer policy.

Yeah, I agree with that.

It's also understanding that actually when you're first diagnosed, and I wouldn't even say first diagnosed all the way through this.

So I'll reflect back for myself.

I feel very vulnerable and specific vulnerabilities change along the journey.

But absolutely, I think it is actually understanding that is that person in the right frame of mind to make the decision they've just made.

If they absolutely are and they've got the right support in place and they've had all of the information, they've made a decision.

I'm certainly not saying people should be making decisions for us, but I think it's back.

It's almost in the medical situation of shared decision making only works if you understand what the treatment options are and the impact that they potentially have on yourself.

I think it's the same in the workplace.

Looking at it a different way around of is that person right now in the right position to make such a life changing decision?

And

I.

It's also back to, you know, work gives you a purpose.

Exactly.

Gives you a slightly.

Yeah.

Sense of self, something to actually keep going.

For some people it's trying to stay in the sort of normal.

Normality, et cetera, et cetera.

There's loads of different, you know, factors here.

And yes, I agree with Mel.

It's a massive area that actually needs.

And young people.

I mean, imagine you've got advanced lung cancer of one kind or another.

You're in your 20s, 30s, 40s, you've got a mortgage, you've got kids, you're a single parent.

I mean there's just.

I don't know how some people do it if they're on treatment and they've got responsibilities, whatever those might be, managing your own cancer treatment and cancer Identity and your work is really, really heavy.

But at the same time, people with cancer have a lot to contribute to the economy, and we need to find that kind of comfortable in between place where we can still be the people we are.

And not out of some kind of pity, but because we deserve to be there and we're good at our jobs.

Yeah.

But actually acknowledging sometimes we can't because we're too sick.

Yeah.

Yeah, exactly.

And I think sometimes, you know, when you have a cancer diagnosis or a diagnosis that is, you know, life changing, actually you have so much value to bring to relationships, whether they're work or friendship, because you see life slightly differently.

Yes.

And so you're.

You know, I might be coming at something from one angle, and then, you know, one of my colleagues had cancer and.

And she would just say things and look at things differently, which then made the team look at things differently, which actually then made us far better nurses, I think, to our patients, having her in our team going through that experience.

And I just think, as well, talking about shared decision making, et cetera, about that relationship that you have with your oncology team.

Because I had a young lady, and she was able to say to me, I'm having problems with my employer, and I was able to help her with that.

But if I hadn't had that quite close relationship with her where she felt able to talk about things and we talked about normal life other than cancer, where she would have been.

And again, Charlie, you were saying about having that ability to make a decision about you as a person.

This is happening to you.

Have you.

What's your experience of relationships like, with your own.

Like with the oncology and healthcare team?

And we're looking at you.

I bet they love it when you rock up.

I bet they love it.

My.

The only one I see, obviously at the moment is the oncoming neurologist every 12 weeks.

And she's absolutely brilliant.

Gives you a hug when you go in.

And you know, Rachel, I like a hug.

Yes, I do.

Yeah.

And you can talk to her about anything and everything.

I mean, the last couple of times, she's been busy, and I've had phone consultations with her, but this next one is.

Is another hug.

Well,

did you feel able to.

Would you feel okay and safe to ask some really, like, almost like challenging questions, like, why are you doing that?

Why is this happening?

Why is that not happening?

Yeah, I think so.

Yeah.

If I didn't, the other half would.

Okay.

But, yeah, no, she really is good.

I can't fault her at all.

Okay.

Gps are a different kettle of things, but we won't go into that.

Okay.

Has everyone else had.

What's your experiences been like with your healthcare team?

Mine's been brilliant, actually.

So I have, in the.

Over the last, I guess, 20 months or so, have had periods where I felt quite down and quite dark and I've been able to reach out to my CNS nurse and she's made a point of calling me.

And yourself, actually, you've made a point of calling me to make sure I've been okay.

So I do feel that I have good relationships with my team.

At the start, there was an element where I was seeing a different oncologist each time I was going in, and I made a point of saying that that doesn't work for me.

I don't like change.

I need to see the same person because I don't want to be having to explain myself and my symptoms every single time to a different person.

And that was only in the first few months of my diagnosis, and then they've sort of changed and I do see the same oncologist each time and he's been brilliant as well.

But you've been enabled to a relationship.

Yeah, exactly that.

With that oncology team.

Absolutely, yes.

Whereas before you couldn't.

And so that caused feelings.

I.

For me, I. I need.

I don't like.

I don't like change.

I need to.

Need things to be quite regular and need to see the same people.

Because you can then build up trust.

If you're seeing a different person each time, you can't build up trust.

And then you.

It makes you feel more alone when you're going to the going, especially because I was.

Was going to a lot of my appointments on my own.

So I needed to build up that trust right from the start.

And it just took me to reach out to my CNS nurse and say, these are my issues.

And she made it okay for me.

And since then it's been really, really good.

Well done.

Continuity is absolutely.

I mean, as an example, last year I had a text from our GP surgery saying, they've made me an appointment then.

So I went and saw the nurse who had never seen.

Sorry, there's a doctor that I'd never seen before, hadn't got a clue who she was, and she said, what can I do for you today?

I said, I don't know.

She said, what do you mean, you don't know?

I said, you made the appointment.

So I don't.

I don't know why you were the same, you know, so she went through everything on the screen.

Was it me rash?

Was it this?

Was it that?

I said, I don't know, you know, I said, can you not find the person that made the appointment?

She said, well, I don't know who it was.

So I thought, well, what chance have I got?

Yeah.

So not a great experience there, really.

After five minutes I'll come out.

And I was no wiser.

So it's just I haven't really got a lot of confidence in my gps, I'm afraid.

And I have to say, from a nursing perspective, back in the day when we had less patients and I mean, it's positive that we've got lots of patients there because it means they're living with their cancer.

So that's amazing.

But our team never grew.

So I went from having a real personal relationship with my patients where I felt really honoured that I became part of their family almost.

I got to know stuff they tell me stuff that sometimes they wouldn't even tell their family.

I was in a real position of trust and I went from that to being so busy that people would come up to me at clinic and go, oh, hello, Rachel, how are you?

And they clearly knew who I was.

I had no clue who they were and I really struggled with that as a nurse, which is why I left and now work for the charity.

Cause I have much more one on one with patients in their homes and it makes me feel like I've got that trust and proper relationship back.

But, yeah, I mean, what about you?

Because when you were really poorly and you had to go in on your

No, lung cancer nurses had gone to work in the COVID ward and I'm not sure that the nurses that looked after me were lung cancer nurses, if I'm honest.

So it was chaos and it's why I switched hospitals, because I just couldn't go back to the scene of the crime, if you like.

But I have a good relationship with the team now and actually I do have an oncologist that I see regularly, but if it's one of the other ones, because I've been going to that hospital now for three years and there's maybe four oncologists.

If I see another one, I've usually met them before and sometimes I actually quite like having another opinion and another bit of input because they'll sometimes come up with different strategies or different thoughts, you know, they're not all the same in terms of what they think about next steps, for example, so they might just open up more conversations.

So I do have one main oncologist and we get on very well.

The lung cancer nurse specialists, I don't see very regularly, but that's probably because I don't actually have troubling symptoms right now.

You know, the ones I can manage and I think, well, if I need them, I'll get in touch and they'll be amazing and they are, but I don't need them.

So best that they look after the people that need their time and attention right now.

Yeah, yeah, that's how I feel.

And it's about that trust, isn't it?

Like you say, Mel, because I've had patients before who, you know, sent me a card at Christmas, for instance, and I thinking, we haven't done anything for you, and they'd say, oh, but you would.

You're there.

Yeah.

And we know you're there.

Like you said, we don't need you right now, Rachel, but when we do, we know you're there.

And, yeah, that sense of support and trust, I think, is really important.

It's like a security blanket, isn't it, really?

It's just knowing that that's there for you if you need it.

Definitely.

Yeah, yeah, yeah.

So I've been really lucky.

My GP is a named person.

I can email them my reports and different bits and pieces.

So my experience there is absolutely fantastic.

The same nurse takes my blood every time I need for oncology and bits.

So in primary healthcare, fantastic.

In the oncology setting, I've general stayed with the same oncologist where you were asking whether, you know, Doug was able to ask questions and.

Absolutely.

With my team, yes.

And I've fought might be the wrong word, but managed to get through the system and actually had treatment that's not standard treatment for a stage four patient.

So, as I mentioned earlier, the LCT last year or local consolidated treatment, so surgery and radiotherapy, which isn't standard for a stage four patient.

But interestingly, my last oncology appointment, so slightly looping everything we talked about today, I was still struggling with trying to get allowances despite being stage four diagnosis.

So PIP essentially.

Oh, okay.

Yeah.

And I went this time round with the intent of speaking to my LCNs.

After I'd finished with the oncology team, my LCNS was busy, so another lung cancer nurse specialist very kindly said, oh, what, what, what's the problem?

Can I pass it on?

And just in that 10 minutes, it's explaining everything and because that person doesn't know your case inside out.

It's that you don't know what they don't know and they don't know what they don't know.

So you've got in to start quite a simple process of saying, this is what I'm trying to do, blah, blah, blah, blah.

But you have to go through.

So things.

What we were discussing was whether my surgery last year was curative or not and things like that.

So it's just a slight example of having to speak to different people if they're not aware of your case and where you are.

You almost have to go right back to the beginning to be able to go forward with a relatively simple question,

what you were saying.

So just raise it as a.

As a.

Actually, it's so important that you've got trust.

Absolutely.

I trust my team, but also that they've got an awareness of the case of the person they're talking to.

Because otherwise you get asked questions that.

That, you know, are triggering and taking you to spaces that you.

You've just turned up to ask one thing and you've got to go right back to the beginning and then talk about, you know, exhausting, isn't it, your life expectancy, which I get, you know, with pip, it is about life expectancy and terminal diagnosis.

But, yeah, absolutely.

If I was speaking to my.

My LCNs, I might not have had to go quite into the detail of.

Of that in that 10 minutes.

One of our problems is the.

That our GPS are in a different

catchment.

Yeah.

To the hospital.

And as you know, they don't talk to one another very rarely.

Yeah.

A prime example of that was last year, another text from the GPS to say, could I go and have a blood test, as I haven't had one for 12 years.

Right.

Nothing to do with.

I have one every three words, weeks.

God.

And it's odd, isn't it, because when we talk about relationships, we.

We automatically.

We do talk about our partners, don't we?

But actually, relationships.

When I was preparing a podcast, I started off thinking, oh, should we talk about intimate relationships?

And then I just thought, actually, relationships are such a massive.

It's a wide spectrum, isn't it?

And.

And it was difficult to actually think where.

What, you know, where should we talk about it?

Because everything in life is a relationship, isn't it?

All our interactions.

Yeah, all of them are.

Yeah.

And how we navigate that.

And we've been moaning about other people, but we need them, don't we?

Yeah.

Yeah.

He's looking at me there.

Thanks.

Thanks, Doug.

Yeah, nice to know that actually, even though he moans about me, needs me.

So that's nice to know.

I glad about that.

So, yeah, I think as we bring our podcast maybe to a close, I'd just like to acknowledge that Valentine's Day, because we're on Valentine's Day, I know that you might not be watching this on Valentine's Day, but we're in the studio on Valentine's Day and it, for many people can be quite triggering.

So we see the shops full of flowers and chocolates and cards and we can often have feelings of sadness and loneliness because maybe we're not part of a relationship or we've lost somebody that we truly loved and we feel that loss much more acutely in certain times of the year.

I just would like to say as well, if you can't meet somebody, don't fret.

There's lots of things about you that can make you happy and fulfilled as a person.

And I remember one eminent psychologist saying once that if you can't love and be in love with who you are in yourself, you're not going to be able to love or have someone love you back.

So maybe try this Valentine's Day falling a bit more in love with you.

Remember happy memories of people if you've lost them and just take time today.

And just to sign off with saying, if your compassion does not include yourself, it is incomplete.

So thanks very much to all my lovely podcasters for coming in today and sharing their experiences, relationships.

Thank you, thank you, thank you.

Sa.