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The Cornwall Cancer Cafe podcast with Matthew Clarke.
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And this week we have Emma Coombe in the studio.
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Welcome Emma.
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Thank you very much, Matthew.
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Thanks to the National Lottery Community Fund for supporting this podcast.
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This week we are talking about one of the most important things to my mind that’s in
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Cornwall to support cancer patients and that, Emma, is what?
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That is the Cove, the Macmillan Centre at Trilisk Hospital, RCHT Trilisk.
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In my mind, it has got me through everything.
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Most definitely. What an amazing place.
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So some people might not know about the Cove.
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No.
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What would you say the Cove is?
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I would call the Cove my sanctuary.
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It’s a safe place.
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It’s a welcoming place.
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It’s an amazing place.
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It’s a treatment provided by Macmillan that all cancer patients, whether they’re
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newly diagnosed, going through it, being through it at the other end, don’t know what to do,
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should access.
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What an amazing resource.
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And that greeting when you go through the doors.
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Oh yes, you walk through the doors and they look up at you and it’s like,
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Emma, how are you today?
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And then what can we help you with?
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Quite often, I’m there for an appointment or even just going in there for a coffee
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or to sit in the lounge in the sunshine in those lovely windows that you can sit
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in and on those lovely sofas.
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Sometimes to meet somebody, sometimes to meet you.
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How horrific.
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I know.
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Sometimes because you’ve just been to an appointment or you’re just going to an
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appointment, it is somewhere safe.
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It is a safe place.
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The worst times in my treatment, I really appreciated the garden outside.
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Oh, you mean just outside the little round bit.
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They’ve actually painted just outside, haven’t they?
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There’s yellow bits all the way up the road and I think it’s supposed to be some
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sort of bee trail, but there’s a lot of-
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I mean the actual garden right outside the cove on the patio bit outside.
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Little bit of garden there and volunteers do that as well.
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I see I wouldn’t mind volunteering to do that later on.
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Anyway, so I’ve been chatting to Nikki Lampshire, one of the two managers at
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the cove about what the cove is and what they provide.
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So let’s have a listen across.
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So I’m a centre manager here at the Information and Support Centre.
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So it’s the Cove Macmillan Centre and we support patients.
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And relatives, carers, anyone that’s affected by cancer.
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Okay, so there must be- there’s lots of different types of cancer.
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There’s lots of different situations people are in, lots of people starting
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their treatments, people just being diagnosed, even people after their
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treatments.
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It’s a big mixture of people you see through the doors here, isn’t it?
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Yeah, absolutely.
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So people that are just diagnosed will quite often hear about us from their
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first consultation and then they’ll walk through the doors.
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Or it may be people that have had their treatment are now living with
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and beyond cancer and want to come in and see what support we can give
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them through groups or therapy and are moving forward.
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And how does a place like this help people find a way, whatever that way
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is, of winning against cancer?
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So I think for people, they see it as a safe place.
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They see it as somewhere they can also talk to other people that may
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have had shared experiences.
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And they also know that we’re professionals so that we are here.
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We can give advice but we also signpost to other areas if need be.
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Because that is a big thing, isn’t it?
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The signposting and the information, people are lost, aren’t they, in many
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cases, and they need that sort of guidance.
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Absolutely.
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When you’re diagnosed with cancer, people don’t know where to turn
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quite often.
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They’ve got their clinical nurse specialist to help them and their
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consultants, their oncologists.
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But actually sometimes it can be the smaller things about the free
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cancer patients or knowing who’s out in the community.
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So it might be somewhere that they can go to closer to home rather than
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having to come to the hospital as well.
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And having a friend there, a friendly face.
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Yeah, so we always have support officers on the reception.
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We use volunteers here as well.
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So there’s always someone, we’re a drop-in service so people can just
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come through the doors.
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And we also have a private room and, again, quiet areas so that people
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feel comfortable.
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It is a difficult topic talking about hope and cancer in many situations,
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isn’t it, where some people will have a diagnosis which does give
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them very positive hope for the future.
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Other people don’t have that.
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How do you give people hope in all situations?
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I think it’s about giving them support and knowing that whatever their
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situation is, there is always someone there.
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And that might be that for different reasons what they need and it’s
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making it individualised for them.
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So if they need something that maybe they can’t get from home,
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that they can come in and talk to us and look what’s available.
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Because people have such a wide range of circumstances.
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Some people have lots of family around them, lots of friends.
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Some people won’t have any family or friends around them.
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And I suppose for those people, where you come in is even more
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important, isn’t it?
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Yeah, absolutely.
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And I think that it can be really lonely having cancer from the
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family don’t understand.
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Your friends might look at you and think that you look well.
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But actually, you’re going through all that emotional turmoil and
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knowing that there’s someone there like us, like other support
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and information centres across the country.
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They can help and be that just shoulder, if you like, to speak
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to, to help as needed.
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And I suppose a lot of people, they will have been to an
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appointment, they might have just had chemotherapy or about
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to go in for chemotherapy or another treatment.
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And this place is here almost just to calm them down in
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many ways ahead of that sort of thing.
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Yeah, absolutely.
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We’re really lucky that we’ve got a cafe and a lounge area
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so that people can come in and if they don’t want to talk
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to us at that time, that’s absolutely fine as well.
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But it is a quiet, nice, non-clinical area.
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And the idea is that it does help people to relax when
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they’re in a stressful situation, like you say,
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going for treatments or being told news and diagnosis,
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all those stressful times.
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Nicky Lampshire there, one of the Cove Centre managers
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at the Royal Cornwall Hospital, very near to Truro.
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Now, we’ve been listening here, Emma and myself listening back.
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We’ve got a little bit more of Nicky to listen to in a bit.
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But what was one of the things that really came to you
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from what she was saying there?
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I think one of the takeaways from that for me,
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she was talking about the support you can get at the Cove
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that you can’t get at home from friends and family.
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And it’s not because friends and family don’t want to
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support, it’s just that they don’t understand how you
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feel and how cancer impacts on you.
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Whereas you go to the Cove and you can talk to the staff
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at the Cove because they’re all trained in this.
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But you also meet other cancer sufferers or cancer survivors,
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however they like to see themselves,
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and they will talk to you and they absolutely get it.
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That’s one of my takes from it, Matthew.
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What about you?
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Well, yes, and I’ve mentioned this to people before
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because are you a Trekkie at all?
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Yes.
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Now, have you watched the one with the whales, Star Trek 4?
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With the whales, you remind me.
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Star Trek 4, where they go and have to bring a whale
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from the past into the future to scare off an alien probe.
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It’s one of the films with the original cast.
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I must have seen it, but I don’t remember a whale being.
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You took me to Hitchhiker’s Guide to the Galaxy
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with the whale and the bowl of Petunias.
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Well, this one, they’ve got this stolen Klingon ship
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and Spock has just been brought back from the dead.
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All right, yes.
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Because that was a previous film.
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Spoiler alert, please.
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Oh, come on, this is 1980s.
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I think we’re allowed to give spoilers to 1980s films.
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Oh, no.
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Anyway, there’s this little moment
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where Spock is monitoring things with a thing in his ear
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and then McCoy, the doctor, comes over to him and asks Spock,
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what was it like to, you know, because he’s just been dead
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and he’s come back.
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And Spock says something along the lines of,
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well, you would have to have died to understand.
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And McCoy says, you expect me to have to die
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to understand what you went through.
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And for me, as a cancer patient trying to explain
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to someone else, you know, relative terms,
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it is that sort of situation.
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That’s really good, actually.
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It’s really profound.
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Profound, I know.
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There are some profound moments in Star Trek.
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Anyway, look, we’re going to listen a bit more
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now to Nicky Lambshire, and then we’ll have a listen
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to the chief executive of Cancer Support UK,
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Mark Gaimer, who’s also had a little listen across.
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Then we will just tell you what we think
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about what’s been said there.
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Okay, so more from Nicky.
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One of the things which is challenging for anyone
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is talking with someone about cancer.
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How do you get in the right frame of mind?
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What tips would you give someone
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if they’ve got a member of their family
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who they want to talk to about their cancer
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but don’t know how to do it?
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I think giving people time,
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making sure that it’s the right time in that day.
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So it might be that you’re going for a walk,
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it might be that you’re in the car,
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but choosing the right time and also not pushing.
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So if someone doesn’t want to talk, that’s equally okay.
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But just saying that you’re there if they want to talk
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can just be enough sometimes.
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I suppose for anyone working in this environment,
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it must be difficult for you to give that emotional support
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but not to let it really dig deep into you
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because otherwise you wouldn’t be able
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to carry out your work and help people.
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Absolutely.
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I think anyone that’s working in this environment
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cannot say that they won’t be affected
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because you have to be.
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You are dealing with people’s emotions day in and day out,
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but it’s really important that we have a good team support
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and also that all the members of staff
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have clinical supervision
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so they’re able to talk through situations
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and just also from a learning point of view,
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but reflection and just making sure
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that the staff have got the support
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so that they can emotionally cope
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with what they’re dealing with as well.
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People who come in here, as we’ve discussed,
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there’s a wide range of different types of patients
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at different stages,
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but there’s also the carers who you help.
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What sort of support do carers need?
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So again, it can just be about talking.
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It might be that they need some practical advice as well,
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but we are here.
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We can listen to what they need.
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We don’t offer formal counselling for carers,
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but we run a carer’s friends and family group,
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so there’s support groups available.
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And again, we have the offer
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that people can talk to us
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and the support officers if they need to.
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Okay, so we’ve talked a lot about the service.
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Let’s talk about yourself
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because as you say that you’re a nurse,
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a trained nurse.
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Why did you decide to come into this line of work?
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So I’ve worked for many years in the acute trust,
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so front door emergency,
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and then within that, obviously,
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we see patients that are affected by cancer
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and also their families.
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00:14:07.570 –> 00:14:09.690
And when I saw this job advertised,
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I knew that I wanted to change direction slightly,
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00:14:13.330 –> 00:14:15.970
and this was a really good way of doing that
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so that I could support patients, carers,
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00:14:18.890 –> 00:14:20.590
friends, relatives,
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00:14:20.890 –> 00:14:22.910
whoever was affected by cancer.
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And for me, obviously,
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I get a lot of job satisfaction out of it.
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It can be really tough sometimes,
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but it’s also a welcoming environment
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for people and for me is working in that.
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That is so nice.
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Where do you get your energy and your drive from
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to be able to run this?
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00:14:47.410 –> 00:14:49.790
Well, seeing people come in
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and seeing that we’ve helped them
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and the fact that we can change our services
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so that we can,
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00:14:59.130 –> 00:15:00.330
whatever people need,
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we can put in place.
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We’re very lucky
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and Macmillan do support with grants
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00:15:07.230 –> 00:15:09.190
to help us do that as well.
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00:15:10.090 –> 00:15:11.810
So it’s important to say that
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although this is part of
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the Royal Cornwall Hospital in Truro,
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where we are at the moment,
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it is a Macmillan centre.
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Yes.
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So in the beginning,
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when the centre was built,
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there was a lot of funding put in by Macmillan
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and there was a lot of charitable funds as well.
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00:15:29.890 –> 00:15:34.230
But Macmillan funded a lot of the posts here,
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00:15:34.290 –> 00:15:36.010
so a lot of the roles that you see
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00:15:37.090 –> 00:15:40.910
and now they will still put in grants,
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wellbeing grants,
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but also to support with education
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00:15:44.250 –> 00:15:47.010
of the Macmillan professionals that are here
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and also looking at things such as our,
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at the moment,
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we have a community outreach support officer
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and that’s been funded by Macmillan for two years.
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And it’s important at this stage
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that not everyone listening to this is in Cornwall,
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but there are Macmillan centres
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and Maggie’s centres
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00:16:04.310 –> 00:16:07.590
and other support across the country.
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00:16:07.970 –> 00:16:10.570
Do you sort of have a conference or liaise
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00:16:10.570 –> 00:16:13.350
or exchange knowledge and ideas
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00:16:13.350 –> 00:16:17.150
across a wide range of trusts across the country?
296
00:16:17.470 –> 00:16:18.290
Yeah, absolutely.
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00:16:18.690 –> 00:16:21.810
So the South West Managers Forum is set up.
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00:16:22.050 –> 00:16:24.610
So all the managers of information
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00:16:24.610 –> 00:16:27.330
and support centres meet on a monthly basis.
300
00:16:27.330 –> 00:16:29.830
So that’s a good way of networking,
301
00:16:29.830 –> 00:16:31.970
finding out what’s going on in other areas
302
00:16:31.970 –> 00:16:33.350
and sharing ideas.
303
00:16:33.630 –> 00:16:36.510
And then we also have a yearly conference
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00:16:36.510 –> 00:16:38.310
with Macmillan as well.
305
00:16:38.590 –> 00:16:42.450
So we encourage people from our area to go to that
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00:16:42.450 –> 00:16:46.430
and we’ve also shared what we’ve done in Cornwall
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00:16:46.430 –> 00:16:48.130
throughout the UK.
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00:16:48.330 –> 00:16:49.710
Nicky Lampshire there,
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00:16:49.910 –> 00:16:52.690
one of the managers at the Cove Centre
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00:16:52.690 –> 00:16:54.350
at the Royal Cornwall Hospital.
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00:16:54.350 –> 00:17:00.830
And so one of the things she is talking about there
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00:17:00.830 –> 00:17:04.970
is the range of services available
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00:17:04.970 –> 00:17:08.130
and that can only be done by Macmillan
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00:17:08.130 –> 00:17:10.490
with a lot of fundraising going on.
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00:17:10.849 –> 00:17:13.589
And we’ve got Leanne Thomas
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00:17:13.589 –> 00:17:17.010
who is the Macmillan South West
317
00:17:17.369 –> 00:17:19.869
co-ordinator of fundraising
318
00:17:19.869 –> 00:17:22.690
will be talking to her in an upcoming episode.
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00:17:22.690 –> 00:17:27.190
So Emma, what did you pull from what she was saying there?
320
00:17:27.569 –> 00:17:28.770
Yeah, similar to you,
321
00:17:29.010 –> 00:17:31.350
that Macmillan fund a lot of the posts
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00:17:31.350 –> 00:17:33.850
and obviously we need these posts to remain in place.
323
00:17:33.850 –> 00:17:37.050
So it’s very important that we all support Macmillan
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00:17:37.050 –> 00:17:39.190
as much as Macmillan are supporting us.
325
00:17:39.570 –> 00:17:42.450
So it’s going to be a very interesting conversation
326
00:17:42.450 –> 00:17:43.590
with Leanne, isn’t it?
327
00:17:43.950 –> 00:17:45.650
She’s a wonderful lady
328
00:17:45.650 –> 00:17:48.430
and she has supported me
329
00:17:48.430 –> 00:17:51.090
in a few of the fundraising things I’ve done during,
330
00:17:51.710 –> 00:17:56.490
and I think when I was in the middle of treatment,
331
00:17:56.510 –> 00:17:58.430
I felt that at that stage
332
00:17:58.430 –> 00:18:00.470
I wanted to give back in some way.
333
00:18:00.470 –> 00:18:02.150
So I went and did a bit of fundraising.
334
00:18:02.330 –> 00:18:04.250
I don’t know how I did it at that stage.
335
00:18:04.550 –> 00:18:07.230
No, but I think probably a lot of people feel like that
336
00:18:07.230 –> 00:18:08.310
because they’re at the point
337
00:18:08.310 –> 00:18:10.990
where they’re being given this amazing help
338
00:18:10.990 –> 00:18:14.210
and they want to reciprocate in some way, don’t they?
339
00:18:14.250 –> 00:18:16.890
But actually that’s not the time to do it.
340
00:18:17.030 –> 00:18:19.670
That’s the time that you need to be concentrating on yourself.
341
00:18:19.670 –> 00:18:20.450
Later.
342
00:18:23.310 –> 00:18:26.050
And I’ve got a bit of chemo brain coming over me.
343
00:18:26.050 –> 00:18:29.870
I was going to say something and it has gone out my head.
344
00:18:30.670 –> 00:18:32.750
No, it’s not gone into my head.
345
00:18:32.770 –> 00:18:33.870
Save me, save me.
346
00:18:33.970 –> 00:18:35.090
Chemo brain, I don’t know.
347
00:18:35.150 –> 00:18:36.810
I’m trying to read what you might have said.
348
00:18:37.210 –> 00:18:38.250
What are you going to say?
349
00:18:38.810 –> 00:18:40.590
What I was going to say is yes,
350
00:18:41.630 –> 00:18:46.370
because not everyone experiences cancer in the same way
351
00:18:46.370 –> 00:18:49.510
and needs services in the same way.
352
00:18:50.730 –> 00:18:54.900
It’s about time now for me to say what I say each time is
353
00:18:55.470 –> 00:18:57.150
not everyone is the same,
354
00:18:57.390 –> 00:18:59.470
not every cancer experience is the same
355
00:18:59.470 –> 00:19:01.810
and not every cancer is the same.
356
00:19:03.030 –> 00:19:07.890
If you find that you don’t need to use the Cove Centre,
357
00:19:08.790 –> 00:19:11.070
that is fine too, isn’t it?
358
00:19:11.170 –> 00:19:12.350
Of course it is, yes.
359
00:19:13.110 –> 00:19:14.910
But it’s a great cafe.
360
00:19:15.110 –> 00:19:15.970
Oh, it’s a great cafe.
361
00:19:15.970 –> 00:19:17.070
And a great lounge.
362
00:19:17.270 –> 00:19:18.010
It’s a great lounge.
363
00:19:18.050 –> 00:19:18.890
I love it there.
364
00:19:18.890 –> 00:19:21.710
And sometimes I will go in there
365
00:19:21.710 –> 00:19:24.250
and actually not talk to anyone.
366
00:19:24.410 –> 00:19:25.170
I just sit there.
367
00:19:25.290 –> 00:19:26.970
Yeah, and do you know I bumped into somebody
368
00:19:26.970 –> 00:19:29.310
walking through one of the corridors of Trilisk,
369
00:19:29.850 –> 00:19:31.850
RCHT, whatever you want to call it, Matthew.
370
00:19:32.510 –> 00:19:34.970
And they were looking to get a coffee somewhere
371
00:19:34.970 –> 00:19:36.930
and I took them to the Cove
372
00:19:36.930 –> 00:19:40.650
and they were blown away with how wonderful it was in there.
373
00:19:40.890 –> 00:19:45.290
Yes, so I’ve been playing this interview with Nikki
374
00:19:45.290 –> 00:19:51.830
to the chief executive of the Cancer Support UK charity
375
00:19:52.410 –> 00:19:54.170
and he is Mark Gimer.
376
00:19:54.450 –> 00:19:55.630
We’ve had him on before.
377
00:19:56.390 –> 00:19:59.590
And so let’s say listen across to what he says
378
00:19:59.590 –> 00:20:01.670
about what Nikki was talking about.
379
00:20:01.790 –> 00:20:04.710
Yeah, I just remember the very first
380
00:20:04.710 –> 00:20:08.050
sort of really poignant point that she mentioned,
381
00:20:08.070 –> 00:20:10.770
which is something that runs through the heart
382
00:20:10.770 –> 00:20:14.290
of many of our services is this notion
383
00:20:14.290 –> 00:20:17.030
that cancer is a very lonely place
384
00:20:17.030 –> 00:20:18.830
for the individual that’s impacted.
385
00:20:19.430 –> 00:20:21.430
And if you say that to someone
386
00:20:21.430 –> 00:20:24.910
that hasn’t had a lot of experience around cancer,
387
00:20:25.430 –> 00:20:27.710
the immediate assumption is that they’re thinking,
388
00:20:28.030 –> 00:20:30.230
oh, you know, it’s when you go to hospital,
389
00:20:30.310 –> 00:20:32.230
you’re on your own or maybe it’s somebody
390
00:20:32.230 –> 00:20:35.530
that doesn’t have a lot of friends and family around them.
391
00:20:36.370 –> 00:20:39.690
Whereas actually, it’s none of those things.
392
00:20:39.990 –> 00:20:43.770
It’s the fact that the individual with the cancer
393
00:20:44.630 –> 00:20:48.050
really doesn’t feel like that they can share
394
00:20:48.050 –> 00:20:51.310
exactly how they’re feeling or that people around them
395
00:20:51.310 –> 00:20:53.590
and even people very close to them
396
00:20:53.590 –> 00:20:56.710
don’t really understand how they feel.
397
00:20:57.810 –> 00:21:00.130
And that can be, you know, not because
398
00:21:01.370 –> 00:21:03.590
they’re not having the conversations.
399
00:21:03.890 –> 00:21:06.930
It can be that, you know, they just feel like
400
00:21:06.930 –> 00:21:11.490
how can someone understand what I’m going through
401
00:21:11.490 –> 00:21:13.810
when it’s only me going through it
402
00:21:13.810 –> 00:21:15.390
if that makes sense.
403
00:21:15.890 –> 00:21:18.970
And they support the family and friends
404
00:21:18.970 –> 00:21:20.810
as well as the patients.
405
00:21:22.470 –> 00:21:24.890
Yeah, and I think that is something again
406
00:21:24.890 –> 00:21:28.070
which we hear a lot at Cancer Support UK.
407
00:21:28.750 –> 00:21:30.610
We’ve even had people who have been through
408
00:21:30.610 –> 00:21:34.510
very difficult cancer diagnosis treatment
409
00:21:34.510 –> 00:21:37.150
and they’re on their recovery journey.
410
00:21:37.510 –> 00:21:40.330
And they will say, you know, I think in a way
411
00:21:40.330 –> 00:21:43.370
it was more difficult for my wife or my husband
412
00:21:43.370 –> 00:21:44.590
or my children.
413
00:21:45.110 –> 00:21:49.110
You know, they really do see and feel that.
414
00:21:49.490 –> 00:21:51.790
And one of the things we’re really conscious of
415
00:21:51.790 –> 00:21:55.170
is that that can create sometimes for some people
416
00:21:55.170 –> 00:21:56.850
a layer of guilt as well.
417
00:21:57.110 –> 00:22:00.110
You know, I’m putting my loved ones through this
418
00:22:00.110 –> 00:22:02.310
because of what’s happening to me.
419
00:22:02.570 –> 00:22:06.210
And that can all be part of what needs to be
420
00:22:06.210 –> 00:22:08.710
addressed as part of someone’s recovery.
421
00:22:08.710 –> 00:22:13.290
Mark Geimer there from Cancer Support UK.
422
00:22:13.970 –> 00:22:17.370
And yes, he was pointing out this whole thing
423
00:22:17.370 –> 00:22:23.070
about cancer being a lonely journey for many people.
424
00:22:23.150 –> 00:22:25.450
Not everyone, but for many people
425
00:22:25.450 –> 00:22:29.950
because it is a challenge discussing
426
00:22:30.400 –> 00:22:35.670
what you are experiencing with friends, family.
427
00:22:36.710 –> 00:22:38.430
What do you think on that?
428
00:22:38.430 –> 00:22:39.350
Yeah, I totally agree.
429
00:22:39.510 –> 00:22:41.410
It’s very difficult to put into words
430
00:22:41.410 –> 00:22:43.090
how you’re feeling and how you’re thinking
431
00:22:43.090 –> 00:22:45.730
because once you get that diagnosis
432
00:22:45.730 –> 00:22:48.310
I think your brain just starts turning
433
00:22:48.310 –> 00:22:49.870
and turning and turning and turning.
434
00:22:50.570 –> 00:22:53.750
Some people will go into the
435
00:22:53.750 –> 00:22:55.630
let’s learn everything about it mode.
436
00:22:56.050 –> 00:22:57.490
Some people will go into
437
00:22:57.490 –> 00:22:58.930
I’m going to put my head in the sand
438
00:22:58.930 –> 00:23:02.690
and hope it goes away mode and everywhere in between.
439
00:23:04.250 –> 00:23:05.850
But everybody deals with it differently.
440
00:23:05.850 –> 00:23:08.830
But trying to explain what you’re thinking
441
00:23:08.830 –> 00:23:11.210
and how you’re feeling to your loved ones
442
00:23:11.750 –> 00:23:13.890
when they haven’t had that diagnosis
443
00:23:15.350 –> 00:23:17.210
it’s very, very difficult.
444
00:23:17.210 –> 00:23:19.170
So it does put you in that lonely place
445
00:23:19.170 –> 00:23:20.270
because bless them,
446
00:23:20.270 –> 00:23:22.730
they’re doing their best to say
447
00:23:23.370 –> 00:23:25.730
all the right things at all the right times.
448
00:23:25.970 –> 00:23:27.150
But of course, your emotions
449
00:23:27.150 –> 00:23:29.130
are bouncing around all over the place
450
00:23:29.130 –> 00:23:31.010
and they don’t always get it right.
451
00:23:31.370 –> 00:23:33.990
And as cancer sufferers
452
00:23:33.990 –> 00:23:35.550
we don’t get it right either.
453
00:23:35.850 –> 00:23:38.130
You do end up in this lonely place
454
00:23:38.130 –> 00:23:40.330
where ironically the only people
455
00:23:40.330 –> 00:23:43.070
that understand you are other cancer people
456
00:23:43.070 –> 00:23:44.990
and they just get it.
457
00:23:45.130 –> 00:23:46.750
You can go to a group and say
458
00:23:46.750 –> 00:23:48.690
oh this happened to me at an appointment
459
00:23:48.690 –> 00:23:50.390
and it really upset me and they’ll go
460
00:23:50.390 –> 00:23:52.330
oh gosh yes I had a similar thing
461
00:23:52.330 –> 00:23:54.870
or they’ll completely understand it.
462
00:23:55.250 –> 00:23:57.270
You say that to your family and friends
463
00:23:57.270 –> 00:23:58.810
and they don’t understand
464
00:23:58.810 –> 00:24:00.530
why you’re so upset about it.
465
00:24:00.710 –> 00:24:02.090
Do you know the thing
466
00:24:02.090 –> 00:24:05.270
which I’ve found the most difficult
467
00:24:05.270 –> 00:24:07.670
post being in remission
468
00:24:08.990 –> 00:24:11.090
to explain to people
469
00:24:11.090 –> 00:24:14.670
about the recovery process on my part
470
00:24:14.670 –> 00:24:16.710
not everyone goes through this once again.
471
00:24:17.650 –> 00:24:20.470
I feel almost a completely different person.
472
00:24:20.470 –> 00:24:22.170
I don’t feel like the person
473
00:24:22.170 –> 00:24:23.910
that I was before cancer.
474
00:24:24.250 –> 00:24:25.590
Well you’re not the same person
475
00:24:25.590 –> 00:24:26.930
that’s the thing isn’t it?
476
00:24:26.970 –> 00:24:29.910
And it’s difficult trying to explain it.
477
00:24:30.550 –> 00:24:32.430
But you’ve been through such an
478
00:24:32.430 –> 00:24:34.950
life-changing experience
479
00:24:34.950 –> 00:24:37.090
and coming out the other side of it
480
00:24:37.090 –> 00:24:40.390
and your whole body has changed doesn’t it?
481
00:24:40.770 –> 00:24:42.990
I mean I believe you lost your hair
482
00:24:42.990 –> 00:24:46.030
so then your hair came back several times.
483
00:24:47.370 –> 00:24:50.110
And your fingernails and your skin
484
00:24:50.110 –> 00:24:52.130
and everything about you has changed
485
00:24:52.130 –> 00:24:54.130
and the way you think about life
486
00:24:54.130 –> 00:24:55.510
as well changes doesn’t it?
487
00:24:55.810 –> 00:24:59.510
Well yeah and I’m just going to mention here
488
00:24:59.510 –> 00:25:02.230
now this is something
489
00:25:02.230 –> 00:25:04.990
which is not easy to talk about
490
00:25:04.990 –> 00:25:08.110
because cancer is not easy to talk about at all
491
00:25:08.110 –> 00:25:10.390
and here’s one of the trickiest ones
492
00:25:10.390 –> 00:25:16.610
is that you look at all the forms you sign
493
00:25:16.610 –> 00:25:19.330
to say yes I’ll go through with that treatment.
494
00:25:20.310 –> 00:25:21.690
You know you have to sign lots of things
495
00:25:21.690 –> 00:25:22.950
and there’s all the sort of things
496
00:25:22.950 –> 00:25:25.430
that go wrong and so side effects
497
00:25:25.430 –> 00:25:27.930
and things you read them.
498
00:25:28.490 –> 00:25:30.910
Well I did but I’m not properly
499
00:25:30.910 –> 00:25:35.290
but one of the things that did happen
500
00:25:35.290 –> 00:25:39.130
from that is that I lost all my libido.
501
00:25:40.670 –> 00:25:43.990
And that makes you feel a completely different person
502
00:25:44.650 –> 00:25:48.130
and trying to explain that to people as well
503
00:25:48.130 –> 00:25:50.070
that suddenly that’s wiped out
504
00:25:50.070 –> 00:25:53.370
how you almost relate to the world.
505
00:25:53.950 –> 00:25:56.170
Yeah and then you wonder
506
00:25:56.170 –> 00:25:57.390
how you can get it back again.
507
00:25:57.930 –> 00:26:00.150
I don’t know if I can actually
508
00:26:00.150 –> 00:26:02.050
I think it’s completely gone.
509
00:26:03.810 –> 00:26:08.170
So it would be nice to get that part of me back
510
00:26:08.170 –> 00:26:12.890
but I think I have to almost not have expectations
511
00:26:12.890 –> 00:26:14.890
but these are the tricky things
512
00:26:14.890 –> 00:26:16.210
that we have to talk about.
513
00:26:16.890 –> 00:26:19.710
I think you’ve just said exactly the right words
514
00:26:19.710 –> 00:26:21.610
not have any expectations.
515
00:26:22.850 –> 00:26:26.050
That’s it really that’s it in a nutshell isn’t it?
516
00:26:26.050 –> 00:26:28.690
Before cancer we would have expectations
517
00:26:28.690 –> 00:26:30.770
about all sorts of things and plans
518
00:26:31.610 –> 00:26:36.690
and going through this changes that in a big way.
519
00:26:37.330 –> 00:26:39.610
Yeah I mean one of my mantras going through it
520
00:26:39.610 –> 00:26:41.710
is we have to forgive ourselves
521
00:26:42.210 –> 00:26:43.870
we have to be very forgiving.
522
00:26:44.710 –> 00:26:46.630
We have to forgive ourselves
523
00:26:46.630 –> 00:26:49.110
we have to forgive our family and friends
524
00:26:49.110 –> 00:26:50.970
and they also need to forgive us.
525
00:26:51.910 –> 00:26:54.890
Indeed so look Emma it’s been
526
00:26:56.090 –> 00:27:00.530
interesting talking to you about this episode
527
00:27:00.530 –> 00:27:05.890
and listening to Mark Gaimer and Nikki Lampshire
528
00:27:05.890 –> 00:27:09.090
from Macmillan at the Royal Cornwall Hospital
529
00:27:09.090 –> 00:27:12.970
the cove there and we’ll have you back
530
00:27:12.970 –> 00:27:14.570
I think again on this program
531
00:27:14.570 –> 00:27:17.090
because you’re such a brilliant co-host
532
00:27:17.090 –> 00:27:19.850
because you cover up for all my mistakes.
533
00:27:20.250 –> 00:27:21.210
And tell you off.
534
00:27:21.370 –> 00:27:24.390
And tell me off and I need that I need it
535
00:27:24.390 –> 00:27:26.890
thank you very much see you again soon
536
00:27:26.890 –> 00:27:30.410
and also see you all again soon speak to you soon
537
00:27:30.410 –> 00:27:32.610
and listen across on the website
538
00:27:32.610 –> 00:27:37.210
there are more episodes share them online on Facebook.
539
00:27:37.450 –> 00:27:40.910
We’ve got a Facebook group as well that we’ve started up
540
00:27:40.910 –> 00:27:44.310
so you can have a chat with people there.
541
00:27:44.810 –> 00:27:49.010
Don’t forget we are not medically trained
542
00:27:49.010 –> 00:27:52.730
or we’re not psychiatrists or anything
543
00:27:52.730 –> 00:27:58.010
what we are in this project are people with lived experience
544
00:27:58.730 –> 00:28:01.490
but we’ve got a lot of places
545
00:28:01.490 –> 00:28:03.710
we can point you to through the website
546
00:28:03.710 –> 00:28:11.850
so go and have a look at www.cancercafepodcast.org
547
00:28:11.850 –> 00:28:14.510
and tell everyone else about it
548
00:28:14.510 –> 00:28:16.470
so that they can get the benefit
549
00:28:16.470 –> 00:28:19.010
of the amount of different people
550
00:28:19.010 –> 00:28:21.830
we’ll be chatting to over the coming year.
551
00:28:21.830 –> 00:28:23.830
See you again next week.
552
00:28:32.100 –> 00:28:34.200
Thanks to the National Lottery Community Fund
553
00:28:34.200 –> 00:28:36.160
for supporting this podcast.