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The Cornwall Cancer Cafe podcast with Matthew Clark and also Emma Goom. Thanks to the National
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Lottery Community Fund for supporting this podcast. So this week we are talking two topics
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actually but linked together because Emma and I have got a few things in common apart from
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going through cancer and things like that and music as well. So the first thing we
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want to talk about is something really new that Emma has been benefiting from. Just explain
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what this is, Emma. Drugs. Yeah, yeah. And I’ve benefited from drugs as well. Drugs.
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These are good drugs, not bad drugs. Okay. Yeah, yeah. Just, yeah. How would you want
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to take that? So the drug, the drug in question for me is my immunotherapy drug
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which is called Pembro-Mazelab. That’s what you can see for you to say. I know it’s a bit of a mouthful, isn’t it?
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But its market name is Keytruda. So some of you may have seen in the news recently
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that the method of delivery of this drug has become available as a two-minute injection,
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subcutaneous injection. So exciting news for me. I went to see my oncologist last
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week and he said to me, oh, you’re having treatment on Monday. You’re having the new
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injection. And I was very surprised and said, am I? Okay. Okay. Yeah. Let’s go for it
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because it came completely out of the blue for me because I’d only heard about it
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the week before. I was surprised that Trilisk were doing it, but apparently they adopted
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it straight away. So yeah, Trilisk is well on the case. So I went in today,
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sat in the headland unit. I can see you’ve had your blood test. Yeah, I’ve got
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holes in me as usual. Yes, I had my bloods taken and then I had this two-minute subcut
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injection in my tummy. What’s that mean for you? So instead of sitting there with a
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drug going into my arm, so starting off with a saline drip and then the drug going
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through the drip and then saline at the end of it, which actually felt more like
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a chemotherapy treatment, I suppose. Having this injection was much quicker, but I
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think it also means that other patients, they’ll be able to get through patients
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more quickly. But it also means, of course, that patients that can’t get to
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the headland unit, this injection is mobile. Whereas the previous delivery
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of it on a drip, you have to go to the headland unit so that you’re looked
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after by all of their protocols. But this injection can be delivered by
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anyone who is trained to do it. So a local nurse. A local nurse. Possibly in
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a local doctor’s surgery. I don’t know, but I suspect that may be a possibility
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going forwards. So it’s absolutely amazing. It’s such a positive move
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forward. How does it feel to be on the forefront of scientific developments
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in cancer research? Well, I felt quite honoured, actually, when he said to me,
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oh, you’re going to have this injection. So it was a little bit of a,
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oh, well, the rest of my treatments have all been this version and now I’m
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the new version. So it was with mixed feelings that I wasn’t going to complete
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the course as I was expecting it. But how exciting to be offered this new
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Keytruda injection thing. This is the point where I just want to emphasise
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that neither of us are experts, doctors, counsellors, anyone trained.
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We are both with lived experience and you’re really living it now,
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aren’t you, with this science breakthrough? I know. And it doesn’t
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matter how much information you try and pump out of the nurses that are helping
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you. You never become an expert, really. So it really is lived.
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And you barely had, you really had to fight to get the box for
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information. I did, yeah. I mean, I’ve had this in the last hour.
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So, you know, it’s still sitting under my skin at the moment.
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So I’m still absorbing it. So this is how fresh it is.
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Fresh off the shelf. I had a breakthrough drug as well.
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I had a drug called Glofitamab, which was licensed just a couple of months
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before I had it. And it was developed to get people who keep relapsing
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on non-Hodgkin’s lymphoma into remission. And it worked.
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I’ve been in remission for a year and a half.
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And I think the thing is, is that when you have a cancer come back
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or your remission doesn’t last long and you relapse, the more that happens,
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you get worried that they might run out of, you know, things to treat you with.
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Options. Options. And to know that there are these
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new developments going on, these new drugs gives you hope that, you know,
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I don’t need to worry as much. If I relapsed now or later on,
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I know that there are something else that’s being developed or there’s a trial
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on something which could benefit me. And so it’s hope, isn’t it?
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It is hope. There seems to be more and more options out there.
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Cancer research are doing an incredible job.
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You know, well done cancer research. Keep doing it, guys. Keep doing it.
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OK, so we’re now going to talk about the second thing that we have in common.
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And that is that we have both benefited from Macmillan’s collaboration
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with the Potterser in Constantine, which is not far from Penryn
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and Helston in southwest Cornwall.
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And so we’re going to be listening to Mark Harris, who has well,
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he’s one of the directors of the Potterser project.
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And the thing is, is that when you first went there, you said,
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I don’t like gardening and it’s a garden, isn’t it?
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And just just tell me how he made you feel comfortable.
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Oh, well, I mean, he’s such a positive person.
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You go in there and meet Mark and and he said to me,
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Oh, what do you want to get out of gardening?
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You know, what gardening do you do?
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And I said, I don’t do gardening.
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And he was stunned for a moment.
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And then I carried on and I said, but I do like to look at bugs
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and how bugs help things to grow.
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And he said, oh, that’s a new take on things.
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So I think I’ve given him something to think about.
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And then the next time I went, there was this bug game there
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and there was a microscope.
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And so he’s he’s jumped on board with me looking for bugs.
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So what fun.
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OK, so let’s just have a listen to Mark talking about
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setting up the project.
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So Potterser is a demonstration organic garden
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that was created amid the remains of an abandoned plant nursery
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in 1999 2000.
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Dan and Peter had been traveling in France and were inspired by the
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ornamental style of growing productively.
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And they brought their ideas back to this abandoned plot in Cornwall.
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Dan and Peter.
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Dan and Peter co-founders of Potterser Garden
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and Peter now one of the directors of the social enterprise.
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Dan lives in France and so is still involved in the project,
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but from afar.
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Dan and Peter set about creating a garden, a series of small rooms
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so that Potterser would be relatable to on a domestic scale,
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unlike some of the great gardens, the Glendergens and Trebers of this world.
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They hope the visitors will be able to come here.
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And what they saw, the ideas, the planting, the landscaping
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would all be relatable on a domestic scale.
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Everything they did was based around the idea
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that it’s good to spend time in a garden, whether you’re
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coming here for a cup of tea, whether you’re working in the garden,
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whether you’re meeting up with friends, whether you’re learning new skills.
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There’s something fundamentally great about about being in a garden.
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When and for example, I came to Potterser
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a few years after it first opened as a boat builder to rent workshop space.
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And when I came here, there was also a blacksmith
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and there was a green woodworker and Peter had his painting studio here.
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So from the beginning around this idea that it’s
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it benefits everyone to come to this place, to come to this garden,
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whether it’s to pursue your own career painting
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or, in my case, boat building.
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And where did the idea come to have a collaboration with Macmillan?
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That is something that probably has a very long, gentle history to it.
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When Dan and Peter started this project with very limited funds,
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they both worked full time.
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The site didn’t generate any income.
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And so it naturally fell to friends and family and to volunteers
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to help with the initial clearance and the landscaping
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and subsequent maintenance of the garden.
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When I got involved, I came from a background of working in communities,
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in housing cooperatives, in in various types of communal settings.
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And we I think our shared vision was one of collaboration.
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And I suppose that over many years
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of looking after this garden with a lot of different volunteers,
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I saw the benefits that working together in this environment bring to people.
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And so we have been running a volunteer gardening program
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at Potterger now for 25 years and have seen people
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in various stages of their lives, in various emotional and physical states
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come to Potterger to garden.
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And the family is a family.
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The family environment that we created has been supportive
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and has really been conducive to helping people through difficult times,
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as well as providing opportunities to celebrate successes.
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We as long as probably six or seven years ago,
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maybe a little bit longer, we decided that the future of this place needed.
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We needed to formalize in some way what we offered
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in terms of the volunteer gardening and to make it available
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to a greater diversity of people.
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Our volunteer group, they’re very rarely room to join as a volunteer,
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because volunteers, many of them have been coming for,
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I mean, a few of them for more than a decade now.
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But the benefits of gardening and of working and of eating
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and cooking together and sharing meals together,
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we decided that it has a clearly beneficial effect.
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And we wanted to bring that to more people.
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And so we started a social enterprise and sought funding from a few sources.
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Been working with a local GP surgery with a more elderly group,
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a carers group, which was a project which was lovely.
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I designed with the existing carers group at the local GP surgery.
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We then went on to start our own group for socially isolated adults
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that the lottery had a big part in funding.
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And I became aware through one of my colleagues
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that the Cove was a rather special place
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and provided an amazing level of support to people with an oncology diagnosis.
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And rather nervously went along to have a meeting with them
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at the Cove, at the centre at Trilisk.
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And the response I had was encouraging and fantastic.
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And we’ve now been collaborating with them since last autumn.
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So that was Mark Harris from the Pottershire
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talking about how it was set up and how it started collaborating with Macmillan.
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You’ve been scribbling notes there.
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What did that bring to mind?
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So I’ve had a few conversations with Mark as we walk around
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as we walked around the garden, I’ve asked him, why do you do this?
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Why are you working with the Cove?
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What are you getting out of it?
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And what we’ve just heard, he basically has said to me.
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But then I thought, oh, I need I need to tell people what we get out of it.
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So my scribbling notes have been so the sessions that I’ve been.
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What have we done?
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Because there’s always an activity to do each week when you get there.
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Mark hasn’t mentioned it yet.
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I don’t know if he’ll mention it later on, but he’s
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he’s a carpenter, he’s a master carpenter, isn’t he?
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He’s a boat builder.
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So anything to do with building or screwing or drilling, he gets very excited.
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So we had a bit of that going on this week as we made a bug hotel.
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So that was great for him and for us.
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He also mentioned about the the garden itself.
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So we as a group, and I think your group is well offered
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and do flower arrangements to go on the tables in the cafe,
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which is something that we can all sit down and do together
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whilst chatting about what we’re going through.
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What else have I written down?
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Oh, yeah, we made this.
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I don’t even know what you’d call it.
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We used willow and we made a pyramid for the
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for some of the flowers and the and the beans and things to climb up.
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So that was interesting, because you have to make sure
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that the willows wet and you have to bend it.
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And there’s yeah, you have to make sure you don’t whip it
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in people’s eyes as well.
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Anyway, OK, so let’s find out his thoughts on what is offered there.
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So this all falls broadly under the under the category of social
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and therapeutic horticulture.
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None of us is a therapist.
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We don’t offer therapy.
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But we do believe that working together,
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sitting around a table, drinking tea together, cooking a meal together,
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sowing seeds, working in the garden, weeding, planting out,
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generally doing useful activities,
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meaningful activities has a therapeutic benefit
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just through the through those actions of getting together
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and doing something meaningful with one another
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provides an opportunity for social interaction in a very relaxed
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and unpressured way in an environment that is all natural.
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And so working with plants, just the life cycle of plants,
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the way in which they respond without judgment to your to your interventions,
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the the whole growing process and the potential
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for bringing out ideas about renewal and regeneration.
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It’s it creates an environment where it doesn’t, if I’m entirely honest,
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it doesn’t really need to be horticulture, just horticulture
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just happens to provide a backbone that you can use
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to create opportunities for people to to bond, to feel useful,
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to learn new skills and to spend time together in a relaxed
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but gently structured way.
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What I found enjoyable was just by creating an environment
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that is supportive, unjudgmental,
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that people have the opportunity to work through.
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Obviously, with with a cancer diagnosis, I have not had one,
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but I can see that there are shifts in identity.
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There are shifts, obviously, in mood and anxiety.
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And it provided an informal way for people to work through some of those,
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to reestablish maybe, I think, not returning to where one once was,
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but establishing a new normal and a new way of interacting with others.
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And it was lovely to see very simple tasks.
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And just remember that life is about a series of simple tasks
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and that in that moment you can switch from talking about
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the anxiety associated with going to the next scan
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through to laughing at what Matthew’s putting in in the salad for lunch,
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really, and switch backwards and forwards from from very serious,
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very heavyweight topics of conversation through to much, much lighter ones
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and back and forth.
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And I think in doing so, perhaps normalize, share experience
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and and regulate alongside others facing similar issues.
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Now, I have to explain what he meant by that.
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What Matthew’s putting in the salad in the salad.
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Well, the thing is, is that pre cancer,
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one of my big hobbies was going out long walks and foraging.
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I love foraging. Yeah.
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And and I know quite a bit about foraging.
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So when they were all going around the vegetable garden, you know, picking
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properly grown official vegetables and leaves and things,
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I was rummaging around the hedgerow,
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putting out sorrel and nettle leaves and things like that.
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So that’s what his reference was.
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Anyway, what did you pull from what he was saying there?
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Well, yeah, I was just thinking about the walks we do around the garden,
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because that’s how we usually start to set.
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Well, we usually start with a cup of tea
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and then we go for a walk around the garden.
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Mark is just eating everything.
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He picks everything and he’s telling you to sniff or taste or.
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And for someone who’s never foraged, it can be a little bit like,
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oh, and you have to trust him.
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But you do because he’s eating it already.
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He’s munching away on something going, oh, this is so tasty.
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This taste of pepper or this taste of lemon or this taste of.
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So, yeah, so part of the session is to go out foraging
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and to fill a bowl full of stuff,
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which quite often includes flowers and leaves and things
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that you would never think of putting in your mouth.
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But you just think he knows what he’s doing
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because I’ve just seen him eat it.
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And then Peter comes and makes lunch from a lot of that.
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Oh, Peter, the lovely Peter and his dog, Jack, Jack.
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Yeah, the long leads you have to be aware of.
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Yeah, trip hazard.
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Yeah, because Jack’s not a very tall dog, is he?
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He’s quite close to the ground as well.
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But yeah, I mean, what?
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Again, it’s like a therapy animal, isn’t it?
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He’s he’s friendly enough to everybody,
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but he doesn’t impose on anybody.
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I’m talking about the dog here, not Peter.
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And it’s not Peter whining under the table
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when the food’s on it. It’s Jack.
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It is Jack whining under the table.
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But, you know, Peter starts off the day
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by writing his name on his little label.
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And there’s already a smile on the face.
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I need to have a closer look at how he writes his name,
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but lovely smile there.
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But yeah, and then he takes over in the kitchen
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and he invites anybody who wants to join him into the kitchen.
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And last week, one of the ladies helped him make pasta from scratch.
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So it was the first time she’d ever done it.
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She really, really enjoyed it.
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We all sat down to eat it.
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And obviously, we all then said, how on earth did you do it?
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And then she shared.
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And yeah, it’s it’s it’s a little family, isn’t it?
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And he’s already described a bit about how a garden helps.
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But he’s sort of gone into that a bit more.
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The garden obviously provides opportunities to watch
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in nature, resilience and regrowth, regrowth and renewal.
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I find it in times when I feel like I need a bit of extra support.
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I find it very therapeutic to return to those really basic ideas
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of sunlight, warmth and water and what comes from that.
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And to feel like I’m just part of a cyclical process.
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And I think a lot of the things that we’re doing about the seedlings
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and doing cuttings, those are things that even if you’ve got
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just a small garden or even myself, just a balcony, it’s stuff
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that we can take away and have our own little part of that back home again.
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I think absolutely everyone.
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Yeah, whether it’s growing on a windowsill or in a small back garden
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or in pots on a patio, it works at every level and something
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having something to tend for.
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And obviously, we have a lot of ornamental planting here as well.
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But my particular interest is in growing productively
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and having the opportunity to go from seed to plate
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and to feel the satisfaction of knowing that you’ve tended for something
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and grow in it and then get to enjoy it too.
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Looking up any kind of therapeutic horticulture,
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the evidence base is really strong.
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There’s an organisation called Thrive who are based in Reading,
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who I think have been running since the late 70s
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and they have a great wealth of experience
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and we’ve certainly done some training with them.
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And they will have, I think they have a directory of other projects
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and places where one can go to to interact with gardens.
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They have also done a lot of work gathering evidence.
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And so that’s they’re phenomenally helpful in knowing that
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if we take a particular approach, then it’s very likely that benefits
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will accrue in the individuals that take part, which gives us the confidence
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and gives us some of the academic understanding of what we’re doing
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and why we’re doing it with theories of environmental press
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and the soft fascination of nature.
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I’m trying desperately to remember
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bits from my course a couple of years ago.
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But there’s sound trials based evidence to suggest
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that these ideas of meaningful work and time spent in company.
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And this has actually brought you to a point where you have actually
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tried some of this, where you probably wouldn’t have in the past.
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The gardening bit.
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Yeah, I was I was just thinking about the potting on that we did there.
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But also, I owned up to you when I came in earlier, didn’t I?
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I have actually done some gardening at home, which is a surprise.
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It was it was a surprise to me as well.
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But it was it was a beautiful day.
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And actually, Mark from Potterdure had given us all a hollyhock
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and I’d had it sat there.
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I’d been watering it, but I’d had it sat there in this little pot.
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And they said to me, it won’t grow unless you put it in something better.
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And I finally got around to doing it.
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And I’ve been out there every day making sure it’s still alive.
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But I’ve also I’ve got I haven’t got an awful lot in my garden,
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but I’ve been round and sort of trimmed things back.
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And I think it’s going to I think my garden might look quite nice this year.
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You have benefited clearly from the therapeutic benefits
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of horticulture that he was talking about.
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Maybe you’re not going to become,
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you know, the next presenter of gardeners world, are you?
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But it’s I don’t know. Maybe I don’t know.
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I was trying to think, was that Percy Percy thrower?
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Percy thrower? Yeah, I don’t think I’m going to be the next Percy thrower.
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But yeah, I’d say I definitely benefited from it.
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The the other thing I wanted to mention was
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they’ve got an apple tree that’s got something wrong with it.
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I can’t remember what it’s called.
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And they’ve tried to
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put some cuttings from other trees to cut it back.
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Haven’t they quite quite hard?
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They have. Yes.
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Yeah. And they’ve they’ve they’ve put these cuttings on it
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and using, I don’t know, magic stuff that they go off.
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It’s a grafting technique, isn’t it?
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They’ve grafted little bits of another tree.
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Yeah. I’ll stick with my magic.
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They use magic.
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But these little twigs are now beginning to shoot
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and they’re beginning to grow.
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So what does that tell us?
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I’ll agree to what we’re going through.
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Well, it’s it’s new changes from old beginnings, isn’t it?
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Because the original apple tree is not what is now growing on it.
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So the the things that are growing on it now,
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although they’re still apple trees, they’re different types of apple trees.
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So, yes, it it it.
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What’s the word I want?
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It’s not an I can’t think of the word.
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I want doesn’t we don’t worry about the exact words.
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00:22:47.480 –> 00:22:52.240
I was just going to is quite a good reflection of a cancer journey, isn’t it?
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So I’ve asked Mark to give us
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just a tip to take away from all of this.
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Something to think about.
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Take some cuttings, buy some seeds, grow some herbs and windowsill,
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because not only is there using that sort of life cycle and the growth,
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but also you get the benefit of just, yeah,
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squeezing a few leaves and getting the scent and the aroma
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and enjoying the sort of sensory experience of having them around
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as well as then getting to cook with them.
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So there was Mark there
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giving us a little tip there about what we can do when we get home
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and things that we can do with gardening,
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even if we don’t have much space for that.
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And it’s also important to mention
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that at the Potterser with this project,
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there are other people involved, such as volunteers.
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00:23:40.080 –> 00:23:44.720
And then Naomi, who takes quite a role in delivering this.
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Yes, Naomi leads our mindfulness sessions.
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I couldn’t remember what it was called then.
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And she’s very much into her willow as well.
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She is. She’s yeah, she’s very much.
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I think of her as an eco lady.
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00:24:01.360 –> 00:24:03.820
Yeah, she’s there every week. She’s very calm.
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And yeah, an important part of the team.
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00:24:07.080 –> 00:24:09.200
So, yes, wanted to mention her too.
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Yes. OK, so what I want to mention also is the fact
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that if people have been listening to this of another podcast platform,
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they can find out about other projects and supportive things
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that Macmillan are doing and other organisations on our website.
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We’ve got a diary on www.cancercafepodcast.org.
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Cancer Cafe podcast is all one word.
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You can also actually rather cheekily find it through www.cancercafepodcast.org
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if you don’t want to put the podcast on there.
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So that is where you can find more information and other ways you can get support.
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We are not experts.
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We are lived, experienced people.
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But we want you to be able to share in the things that we’ve learnt
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and other people have learnt along the ways.
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And you might want to share this podcast with other people
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so that they can benefit too.
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00:25:14.980 –> 00:25:20.320
So if you’re using social media, please do copy and paste
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the link for this podcast or other podcasts we have posted online.
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So thank you very much, Emma, for coming straight out of Trilisk
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to come here with your holes and bandages
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and after your amazing, groundbreaking bit of treatment.
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Yes, scratchy scratch for two minutes, but it was worth it.
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Only a scratch.
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00:25:46.360 –> 00:25:49.980
Yeah, they say it’ll only be a scratch and you’re like ouch.
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OK, see you all next week.
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Here to support you, the Cornwall Cancer Cafe podcast.
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Thanks to the National Lottery Community Fund for supporting this podcast.