WEBVTT
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Here to support you the Cornwall Cancer Cafe podcast. I’m Matthew Clarke
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No, Emma this week, but she will be back next week
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Thanks to the National Lottery Community Fund for supporting this podcast and welcome to this week’s program and
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Before we go over to the Cove
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I just wanted to say to you
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This is a big hug from us at the Cornwall Cancer Cafe podcast
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And before we do anything I want to emphasize that I am NOT a doctor. I’m not an oncologist
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I’m not a hematologist. I’m not trained as a counselor
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the thing that I bring to this is that I have lived experience of cancer really recently and
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so we want to bring stories to you every week and
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different things that you can do for support
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Hopefully you are already in touch with some of the great services that are available to you
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If not, then go to the website
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cancercafepodcast.org and
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We have a list of different contacts for you
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There’s also a diary so that you can find out what might be going on in your area things you can access
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So now let’s talk about
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young people young adults and the service provided by
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Macmillan and the Royal Cornwall Hospital through the Cove
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The Cornwall Cancer Cafe podcast with Matthew Clark
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The room I’m in I can see a guitar over there. I can see some Harry Potter Lego and some other Lego and
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It’s quite different really from many rooms like you’d expect to be in at a hospital
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Oh, and there’s a jukebox as well. Yes the jukebox
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This is the teenagers and young adults service and I’m sitting with
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Dr. Louise Brown the clinical psychologist here as well as Nicola Clapson a clinical nurse
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Specialist okay, so let’s start with Dr. Louise Brown. Just tell me what do you do here? Oh
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Well, I’m the clinical psychologist for the adult service as well
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But I work in the teenager and young adult service along with Nicola
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and our other colleagues in social work and physiotherapy and
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The doctors as well to support young people who are diagnosed
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And or treated between their six between the age of 16 and their 25th
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birthday, so we provide a particular
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service for
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young people because it’s a
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particularly challenging
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time of life where lots of things are changing within
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life within the body
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also education
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social life perhaps work
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family
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so
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Yes, yeah, so what sort of special skills are needed?
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That wouldn’t necessarily be needed with an adult. Oh
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Well, I think a lot of the skills are quite useful for working with adults as well, but I think
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For people within this age group as I said
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there’s lots and lots of things happening and lots of changes and it can be hard to
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sometimes know
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What what you want or you might change your mind or other people might kind of perhaps see you in a certain way
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And think oh, well, it’s your age and you know
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Why why why have you changed your mind or why aren’t you getting up very early and some of these things?
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Just really normal. So it’s about being able to go with the flow
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and help somebody to really
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Discover perhaps about themselves what what?
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Helps and perhaps what they like and what they don’t like
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it’s a it’s a challenging time of life to go through cancer and treatment and things but also to be
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kind of navigating all the changes because
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Going from perhaps being seen as a child and being a child and perhaps your parents speaking for you
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perhaps at hospital appointments and then getting older and being invited to come and
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Then the the doctor the nurses is asking you the questions and that can be a bit daunting when you’re used to
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You know having your your parents there for some it’s a breath of fresh air and yeah
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How wonderful I can speak for myself a bit more perhaps
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But but yeah, so I think particular skills for us are
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Being able to be very flexible and creative as you’ve seen with the room
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It kind of it reflects the creativity of working in this area, which makes it incredibly
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Rewarding as well. Um, let’s move over. I will come back to you. Don’t worry
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So Nicola Nicola claps and the clinical nurse specialist
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What is your role within this service and my role is whatever the patient needs it to be I
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Think the main thing about the 16 to 25 year olds is they are all completely different
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So the service that we offer is to support them with their emotional health their physical health their
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Their financial state that kind of thing, you know if they need referring for benefits
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so my role is
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Obviously my background is oncology and hematology and I also have worked in the palliative care team in the hospital here
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But yeah, whatever a young person needs. I will do my very best to help and support them
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Do you find that sometimes a young person might not know exactly what they need and how to express that need?
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Yeah, I mean, I think that’s probably quite common throughout everybody
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Any patient I think you know between 16 and 25 we have a huge difference between
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You know some people still at school some people are at university
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Some people are married with their own children by the time they make it to 25. So we just try and
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Find out what they’re struggling with first and foremost
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You know, we have a whole list of things that we can talk to them about within their emotions and you know
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How they’re managing with their families and whether it’s their parents that they’re struggling with or their children or their siblings or best friends
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I think it’s very difficult
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When they receive their diagnosis at a point when they’re already
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Thinking, you know, their heads are full of what actually do they want to do with their lives? I think it’s
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It’s nice for us to
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Be a point of contact
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But I think it’s very difficult for them that their friends
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Move the narrative of their friends life
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Continues as if nothing happens and their life kind of stops for a little while
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to receive treatment and also
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To really process what’s happening to them
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I mean as a cancer patient myself, I know the feeling of feeling the world is going on without you
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Everyone sort of had a period during kovat where the world stopped
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But everyone stopped in many ways
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But this is different and that everyone else is going on without you and I suppose, you know when as you say there is
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So much happening in a young life that that that must have a big impact on a lot of people
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I’m I don’t know who wants to I think it’s a
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I think it’s huge. You know, I think at this point we have people who are
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Preparing for their future, you know preparing their working really hard at school working really hard at university and then this comes
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Like a bolt out of the blue quite literally and I think the sir the TYA the teenagers and young adult service is
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about
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supporting a young person
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Through this information where they suddenly have to process that they may
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Not survive it
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You know, it’s not something that they’ve lived with throughout their throughout their lives
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This is something that comes and they it’s very much about them facing the possibility of a premature death
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actually, we’re very
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Fortunate in that most people between this age group. There’s I think it’s an 85% survival rate
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So actually the five-year survival is is is a really good statistic. Obviously, it’s a statistic
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But yeah, it’s um, and I hope that we offer a positive
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A positive influence on their life, whatever they need. We will we will support them through it as much as possible
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We’ll come back to
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Exactly what you left off talking about there that that sort of idea of what is the hope for someone
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But first of all, I want to come back to dr. Louise Brown and just ask you
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How did you end up doing what you do? Why do you do what you do?
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Well, what sort of drove you to this position where you’re helping people in the service?
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So do you mean in TYA or in your personal career general
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So I’ve always worked in the helping professions and I
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Was interested in how to help people not just in a physical or a practical way, but also
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The emotional so seeing that as being incredibly important. What’s really important to me is helping somebody
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To have the best chance of making
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Choices based on what’s really important to them in any moment, whatever they’re going through
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so
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Working within cancer, which was a long time
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Sort of dream of mine that I waited many years to work somewhere like this. So this is amazing to be here
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So
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Yes, it was about it is and it is still the most rewarding part of my job in whatever situation
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whatever
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Circumstances to help somebody
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Authentically kind of call a spade a spade
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So I’m not gonna just say oh, well, come on. Everything’s okay or whatever cheer up. It’s about yeah
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Being having us that is often something that people say that isn’t it?
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Oh, you’ve got this haven’t they and that people say that to you anything have I and I guess I guess for many people
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Yeah outside of perhaps our sessions or outside of these walls
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Their friends and family people who care about them
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Will say things like oh, you know, but you’re doing really well
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You look well and just think about the positives and you know, you’ll soon be through it and when you’re feeling awful
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It’s really hard to hear that it comes from a good place, but there there is a
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import
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Important kind of space really that we provide about being able to talk about what is
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And then say right then so what’s important to me? What do I want? What can I do and it might be a very tiny step
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And it might be oh, hang on a minute. We’re changing tack
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This is completely different from last week or last month, but okay
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But what’s important now and then it gives that person a sense that no matter what happens because I can’t control everything that happens
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And that’s that uncertainty isn’t it of going through cancer and treatment and things
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But no matter what I know that I’ve
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Asked for the information I wanted I’ve
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Asked for that music to be played when I have that scan or I’ve picked up the phone and spoke to Nicola and come
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And seen her or I’ve gone on
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that
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group experience or something that was on offer
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Or I’ve gone through that with
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My family around me and because I wanted them to be with me on that day when I came for that appointment
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So it’s just very ordinary things when you look at them, but actually that importance of
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choice
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And being able to be be themselves and go through things in their own way
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And so we very much will
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craft and tailor any
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Psychological therapies around that and around where somebody is at the moment Nicola mentioned about trying to process a
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diagnosis
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so even if
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we’re talking about young people today, but even if that person
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Has a cancer that you know what? Yes big we’re gonna treat this and there’s a really really high chance
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You’ll get through and and you know, we’ll get rid of it. It’ll be okay having that experience of being told
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In you know, whether that’s in person or it might not been in person for some people particularly during kovat
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Just hearing those words. That’s a trauma. That’s something which is a threat to
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Ourselves our bodies and so our brains and our nervous systems are going to respond to that as if it’s a threat
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That I’m in danger now. You’ve been told some information
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You know, but it brings that you know, will I will I die and I remember when I was first diagnosed
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You know, they said oh, you’ve got a 70% chance of being here in five years time and I went home and thought
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That’s a 30% chance of not being here
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I’m just gonna move to Nicola now
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Is there anything in your life which drove you to this career and which made you want to end up doing well
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I know and this is part of your career. You’re going to go on to other things probably but um, I
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Love the idea. Well, I love this age group. So 16 to 25. I love being around the young people
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I love I remember how
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Difficult it what it is being that age
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Like the idea that somebody will feel comfortable in my company and feel that they could trust me and
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And that you know, and they’re that they’re not sat somewhere with a worry that they don’t know who to turn to with
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I’m not saying I’ve got all the answers, but I’m saying come on. Let’s talk through. Let’s chat through your concerns
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I will look as far as possible find people who can and do know the answer to help you
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I think it’s I love the idea of walking alongside these young people
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Through a diagnosis and helping them to continue with their life
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So that this cancer diagnosis doesn’t define who they are
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they are very much an
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individual young person with their own personalities their own wants and their own wishes and
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And I just try and walk with them
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To I don’t know. I just think that everyone has a huge potential don’t they I think I want everyone talking is so important
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Is it just talking? Yes often people feel like they really want to help. They don’t want to say the wrong thing
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I think everybody says that I just don’t want to say the wrong thing
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And what if I upset somebody what if I put my foot in it and also at the end of the day
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Pretty much everybody wants to help and so it might they might feel quite disempowered or I can’t take away your cancer
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I can’t give you treatment. What can I do?
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But what can I say or not say?
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You know, can I help with cooking can I help with transport? Can I help with this that or the other?
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And as many people find sometimes
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It’s those little
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Moments that might seem like they’re insignificant
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That somebody
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You know brings a cup of tea to you and they’re just have a very kind nice manner or they know when to not
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Push it not talk too much
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I know our volunteers here in the cafe are really good in that way that they’ll you know
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They won’t push it to make conversation with somebody if they don’t feel like it
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But if somebody would like a chat then that’s lovely. So again, it’s all it’s about being person-centered
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What about what about listening skills?
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What about listening skills?
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What should I know about listening skills in?
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Talking with someone. I don’t like the idea of talking to someone but talking with someone
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What sort of tips on listening skills could you give? I
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would say that listening is
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Never about waiting to speak
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Listening is about genuinely
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Listening taking it all in and probably trying to repeat back what someone has said to them just to kind of
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But just to let them know that you have heard I think there’s something really powerful about feeling heard
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so listening and repeating back
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and
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Validating empathy is of such a huge
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Because you you shouldn’t ever say I understand exactly what you’re going through because of course everyone’s completely different
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Even if you’ve had a diagnosis yourself, I think
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You you can imagine how somebody is feeling but you don’t really know so I think to be able to say
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I’m so sorry that you’re going through that. I you know, I wish that was something that I could do
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To help and you must let me know at any point, but I think to listen and repeat and empathize is
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The way forward because there are a lot of people out there who say if there’s anything I can do
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And actually sometimes as the patients it’s nice to hear that though
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There’s something within you. It said I don’t want to go and ask all these people to
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I don’t all these people running around me
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I think probably the better thing to offer is is there something I can do rather than is there anything?
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I think is there if there’s anything I can do let me know
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I think kind of almost sounds a little bit dismissive and I’m sure it’s not I’m sure everybody means
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Well, I’m I’m
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People want you know, they do mean well
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But if you say please tell me that if there’s something I can do tell me now if there’s something I could do
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You know, and I think that’s quite offer something specific. I can cook
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Can I offer you a meal or I can drive? Can I offer you a lift?
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And
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There’s some some really practical things when I’ve been ill
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Particularly after a stem cell transplant where I can barely do anything
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I had people for friends doing my shopping for me
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And so I had a really amazing support from friends bringing me to hospital and taking me back there
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So there are some
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really positive things that people can help with and I think you know, I think certainly with the young people
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They’ve never experienced having knowing somebody with cancer
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And actually you may find that sometimes certainly some of my patients have noticed that people just stop speaking to them
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But it’s because they don’t know what to say it is and I so I always offer my you know
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If you’ve got friends who have questions, please let them call me
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If you know as long as I know that it’s okay and safe and confidentiality is not being breached
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Then just you know, if they’ve got questions, let them call me
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Well, let’s now go on to the the tricky it is a tricky topic for many people of hope
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How do we define hope how do we
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Categorize, you know, it’s these are all very sterile words
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I’m using here, but hope can mean so many different things to different people as you know
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different stages of their lives of their treatments of their diagnosis, whatever so
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Louise just tell me what do it? How do we refer to hope? How do we think about hope?
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I’m
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It’s interesting. I was still thinking about your previous question in relation to hope because you were asking about listening and listening skills
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And of course hope will mean something completely different to everybody is as we’ve been saying everyone is completely different
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I think that’s probably why Nicola and I love our jobs because we really get that opportunity to spend time
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and really find out
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you know
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What people are like and help them find out what they’re like, particularly the younger ones
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And so hope will be something different for everybody
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It it it might change it might change every day. It might be finding hope in something very small
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When somebody isn’t feeling particularly well
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Or it might be having something in the diary
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To look forward to well when I finish that
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You know, I deserve it. I’m putting that in the diary. You know, I’m also I’m listening to
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What my team is telling me and I’m reading information or I’m hearing information
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I’m weighing up. I’m looking at this treatment or something like that and and consenting to have it because
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This is the evidence I’m being given that it’s going to be
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Successful and this is these are the ways it’s going to enhance my my life
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And help my body
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So again that that hope finding that hope in everything
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Which for me is kind of it’s linked with this is the reason I’m doing this
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For my good and for many people it’s for myself and for my family
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and
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That that might change every day and that’s okay that we you know
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We might we might have bigger hopes at certain times with that might have to dismantle that and change that because at the moment
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I can’t quite do the two-week holiday away or I haven’t quite got those scan results
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I’ve got to wait for that. So how do I have that hope? How do I?
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Ensure that my life is my life according to my values my choices
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For the best for me every day and I might have to kind of cut my cloth a bit a bit differently
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Depending on what energy levels I’ve got or what hospital commitments I’ve got
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So it can mean it can mean all sorts for people, but it’s a you know, it’s it’s an amazing
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Privilege really to work
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alongside people
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at these times finding
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Finding that that hope and that meaning
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so you were listening there to dr. Louise Brown and
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Nicola claps and clinical nurse specialist at the teenagers and young adult service at
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the Cove Center at the Royal Cornell Hospital in Truro and
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listening to that very interesting
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Interview is the chief executive of Cancer Support UK Mark Gaimer
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so
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Mark just tell me what you thought about the very different challenge there is in
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helping people who
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You know that they’re in their teenage is often or even in their early 20s
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Yeah, I think it really came to light that whilst we often
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Talk about and recognize that everybody’s cancer experience is different when we’re talking about young adults
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Age, you know broadly 16 to 25
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There is clearly a whole set of other challenges that these individuals are facing is a very
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significant period in someone’s life when a lot is changing
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The best example I think you talked about which really brought the points home
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Was that obviously under the age of 16 you are a child and you don’t make
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decisions for yourself and then as you get to 18 become an adult you’re suddenly
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able to and sometimes expected to make choices and decisions and
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If you layer on top of that the significance
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And the disruption of a cancer diagnosis and the treatment suddenly to be faced with you know potential decisions
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Around that that’s a really big change. That’s an extra
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Level on top of what’s already a very challenging time and we were speaking a bit about
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Listing skills as well the whole thing about validating and repeating back
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Yeah as a as a charity we do a lot of work with people to help them with their
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Emotional support as part of their recovery after treatment and one of the exercises we always do that everybody really values
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is to talk about active listening and
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active listening is
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where you
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Really try to not think about how you’re going to respond
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but you’re almost taking a bit of a step back to really hear what somebody’s saying and
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It’s not just the words. It’s the body action, you know, it can be
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That everything that’s going on
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So sometimes it’s what people don’t say as much as what they do say that can be important
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So we do a lot of work
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with organizations to
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Try and help people in the workplace
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With better communication skills when they have colleagues who are impacted by cancer may be returning to work
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Because one of the things again that came out is that people find it very difficult to talk about this subject, you know cancer
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Unfortunately still has a huge stigma attached to it and people find it difficult to talk about it
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So we do a lot of work again around active listening
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For people in the workplace because it really helps them
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Know how to engage with somebody and gives them a bit more confidence and some skills
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So this is a really really important area that everyone can learn a little bit about which can really have a significant
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Difference for people impacted by cancer and and going back to young people in particular
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I suppose this this thing about them being you know
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still at school sometimes or at college where all their friends are getting on with their lives and they they feel left behind
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perhaps or
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Very lonely. Yeah, I think this is again this came out in your conversations that
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this is a particularly emotionally challenging aspect for this
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particular group of individuals who are impacted and
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it can be incredibly difficult if at a key point when people are making decisions maybe about further education or
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career choices
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Where they want to live who they want to live with
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Relationships, etc
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To see those around you sort of progressing their lives and their decisions
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It’s incredibly incredibly challenging for people at this particular time
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And I think you talked a bit about how it feels like your world stand stills
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But the world around you continues to move and move at a pace and so that requires
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Particular support to make sure that we can we can get young young adults through that situation
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And thank you to Mark Geimer the chief executive of cancer support UK for his thoughts on this week’s topic
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Emma will be back with us next week and
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Thank you for listening
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Thank you for supporting this project do share the website and our content with friends and family and anyone who?
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May need to hear some of these messages we will be back next week have the best possible week
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Here to support you the Cornwall Cancer Cafe podcast. Thanks to the National Lottery Community Fund for supporting this podcast