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You’re listening to the Cornwall Cancer Cafe podcast with me Matthew Clark and me Emma Coom.
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Thanks to the National Lottery Community Fund for supporting this podcast.
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So I’m going to start the program today with the most important part of every program which is
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something about hugs. Yeah sending a big hug because when you give a hug you get a hug back.
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And I’m not saying that we won’t say that at the end again. I was just looking at Facebook this
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morning. Yeah okay I’m scrolling you know. Zoom scrolling but something came up which was really
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interesting. It was a picture of the Princess of Wales and it says Princess Kate Middleton
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and she said cancer doesn’t just affect the body it changes how you think and feel
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and profoundly affects every aspect of life. I know this personally and that the journey
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through and beyond treatment requires more than medicine alone. What are your thoughts on that?
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Well she’s she’s summed it up hasn’t she? I mean that she’s brilliant with words and you
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it’s amazing that she’s gone public with her cancer as has obviously the King as well.
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So I think by them doing it it helps us doesn’t it? Yes because I know it’s helped my mother
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understand what I’m going through because she’s a royal follower and she saw what
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the Princess was talking about and it rung bells with her with how I’m going through
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cancer recovery. Oh that’s interesting yeah I think whether you follow the royals or not
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their media presence is is very very high so obviously seeing the stories of both the
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royal family and all the celebrities we all like it’s great how more and more people
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with this high media profile are coming forward and sharing their journey because I think it
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helps people with a cancer diagnosis and also those trying to support us.
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And it’s interesting because she has been going through publicly her experience of cancer
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with having a family as well a young family that that’s a challenge in itself. It is yes
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because she’s got three children is it? I lose count. But it’s also about talking to
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children and explaining to the children what’s going on. Yeah and her family of course extends
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to the whole of the UK doesn’t it? So as well as having three children and a husband
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being a member of the royal household she she has to think about how she tells everybody
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how she tells her country how she tells the rest of the world what’s going on.
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It’s interesting because I’ve been reading this this book My Big Toe is Killing Me by Roland J
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Munger and it’s about something you’ll be interested in a melanoma diagnosis and the
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author got this book published for St Luke’s Hospice in Plymouth to raise money and it was
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he was going through his cancer journey and he’s got a family which obviously has a similar
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impact on lives and you know informing them what’s going on and coping with all the normal
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family stuff whilst going through treatments. Funnily enough because I’ve got online right
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now as if this was by magic no it was planned I’ve got Roland J Munger who wrote the book
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welcome Roland just tell me a little bit about how your journey started. It’s an interesting one
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I’ve told the story a few times and I never really know where to begin but essentially I
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had surgery in 2015 to deal with a particularly difficult gallbladder shall we say a very
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gallstones and during the recovery I felt a lump in my leg in my groin and I went to the
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doctors and I said you know what do you think this is and they said it’s probably a
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fatty lipoma if it if it doesn’t go away or it gets bigger come back in three months
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sure enough it didn’t go away got bigger and turned out to be melanoma but my particular
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melanoma they you know they were very confused because they were saying you don’t look
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like a sun worshiper or a you know sunbed user or anything like that and it meant that they had
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to sort of trace back through my files and I’d stubbed my toe about four or five years
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previously when I was living and working in London and that had caused the blunt trauma
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of that had caused a melanoma primary to occur in my big toe hence the title of the book
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and it sat there quite you know benignly and sort of just being contained until my
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immune system was weakened by the surgery and then it went on a little holiday up my
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lymphatic system and set up a new base camp in my groin which eventually before it was
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removed became the size of a grapefruit or a groin fruit so I call it in the book.
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Okay so that’s how you got diagnosed and where the the cancer came from.
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How easy was it to understand personally what you were just about to go through because
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you know you don’t at that stage you don’t realize what’s coming next do you?
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No it’s I’m a big my career I’ve always worked in and around communication and I think
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it’s you know such an important part of modern life and the way I was told over the phone by
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my GP when I was away from home and with very outdated knowledge from the part of my GP so I
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was told you’ve got 12 to 15 months to live that’s you know that’s your lot and at that
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point I had an 18 month old son so I was thinking all sorts of ridiculous things like
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oh maybe I’ll just get away and then he won’t ever remember me and that’ll be easier than
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losing me and that kind of thing and it was only then about six weeks later when I got to
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see the screen cancer nurse specialist team at Derriford in Plymouth they were quite angry
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because they said that’s really outdated information you know we’ve had lots of
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patients likely that go on for years and decades so you know we can do stuff about
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this so there is this you know obviously people always advise to avoid Dr Google and
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things like that but there are temptations aren’t they you just want answers you want to know
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how long and there’s also there’s also friends as well they mean well-meaning friends they’ll
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say oh have you looked at this treatment or have you looked at this thing you can take
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yeah absolutely and you know I’ve had a contact from a former colleague recently who’s
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been diagnosed with motor neurone disease and so he just said how do you cope with all the
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giving you advice when they have no knowledge of it and I said you have to take it with good
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grace because it’s their way of helping but you know if people are saying to you eat three leaves
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of sage and turn anti-clockwise four times on a Tuesday night in a month beginning with an M
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probably not based in science but it’s not going to hurt you you know so if you want to
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do it do it you know and you do at that point you think I’ll try anything at this stage so
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you know it’s yeah you get it from all angles but you have to sort of take it with the this
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is people saying I don’t know how to help you but I want to help you and this is how I can do
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that and how did you tell your family so it’s an interesting thing so you mentioned the blog
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and I think that kind of after the initial kind of close immediate family and friends
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the blog became a big became a big part of that because I got very tired very quickly
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of retelling the same thing over and over and over again and people misunderstanding or getting
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it third hand so I did I we sat down with my stepchildren and explained to them the process
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rather than the the diagnosis so you know I would have to have an operation
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but they’d already seen me go into hospital so that wasn’t too big of an issue and I
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might have to have some treatment afterwards I had radiotherapy at that point on my groin
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after the surgery to try and zap away anything it’s very kind of
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James Bond like you know it felt like a laser coming towards my crotch and
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them expecting me to talk what’s the what’s the phrase from James Bond you mention it in
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the book yeah so you expect me to talk no I expect you to die
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which is you know didn’t really go down well as banter with the
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radiotherapists but anyway and and then it was my sister-in-law said like you know you love to
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write I write a blog about music as well and she said why don’t you write about your
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experience and it was that that spawned the blog because it meant that people could understand
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what I was going through I found that easier than talking face to face with lots of people
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and it then led to other people being able to kind of unpick some of their emotions
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about similar experiences which has been really rewarding for me well I mean you tell the story
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with a lot of humor and good grace you mentioned earlier but I think it’s also all right to if
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people if you’re not in a good place you know you’re allowed to bark at people because
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if you’re not feeling very well you know you need all your energy to look after yourself and
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sometimes you’ve got to bark at people and they’ll back away and you know you can go back
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them later and say I’m sorry I was you know I was suffering on that day but um yeah you
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I think you’re being uh very nice at the moment
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I think that’s that’s one of my coping mechanisms humor has always been a coping
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mechanism for me throughout my life so I find it kind of easier and but that’s not to say
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I haven’t had moments when I’ve been an absolute pool of tears and snot and all kinds
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of you know what am I gonna do and what’s my son gonna do and all this kind of stuff so it
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does happen and I have written about that and I you know try and face up to that as well but
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I think with a lot of these things my wife is always one of these very um positive mental
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attitudes kind of people not to the point of being pathological but just kind of like come
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on let’s go and take the dog for a walk on the beach or let’s go and have a carvery or
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it is that will just lift us out of this funk um and you know you say about talking to the children
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in the early days there was a lot of we were quite honest with them and they would see us
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crying but it was very much a contained thing and then we’d go to bed at night when all the
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lights were off and the kids were asleep we’d have these moments of just holding
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each other and sobbing and then until we fell asleep and then after a few weeks you go
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hey we haven’t neither of us have cried today that’s that’s progress you know that’s
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movement but with my journey over the last 10 years i’ve had three diagnoses now where
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they’ve said that’s it you’ve got a year or so to go share this podcast on your social media
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so others may benefit so emma and myself are talking to roland j munger who’s written a book
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and done a blog about his cancer experience and let’s find about his other diagnoses
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so yeah so following i had surgery in 2016 on the lymphatic system um had the radiotherapy
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for four weeks and then everything was pretty good we’re about to work and i had three
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monthly checkup scans things were doing pretty well and then in 2019 so we got married in 2019
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um and we were up in october we were in manchester visiting friends and on the way home
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i just felt awful really rough and i thought you know yeah i’ve had a couple of drinks with some
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friends so there’s that and i’m getting older but shouldn’t feel this bad and then for the
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next week it was a case if i would get up and then eat some breakfast and then fall asleep
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on the sofa and i just couldn’t get any energy and it turns out after about four or
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five days i managed to get to a gp and they said you need to be in the hospital now and
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what had happened was the melanoma had come back but wrapped itself around my pancreas
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so it had been gently squeezing it and then at some point during that process the pancreas just
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gave in and i became type 1 diabetic but had no indication of this i had no warning signs
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that this was going to happen um so they got me i got into dherafil again they kept me going
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but it was very touching again i had something called diabetic ketoacidosis where your body
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starts trying to consume its own energy which is not always a good idea that’s never a good idea
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and so i survived that and then into the early part of 2020 i started on an immunotherapy
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pathway and then after about three months of that they took a pause did a scan and said
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it’s not really working so we’re going to stop it and we’re talking palliative care now
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also by the way there’s a pandemic um so all the trials are shut down everything’s done and that
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was probably the bleakest moment because we had a phone call to save us going in anywhere near
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the hospital that said no more treatment nothing we can do get your affairs in order
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probably about eight months life expectancy um and that was one of those snotty
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tear-filled blob moments on the bedroom floor um but i decided that i would just go nuclear with
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it and shared the story on social media i managed to get interviewed on some bbc
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itv west country bbc news things like that and just said to everybody is there anything
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anyone can do that can help and in one of those weird twists of fate i had a school friend
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who i’ve known since i was probably about four and he’d met a doctor on a skiing trip
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years ago and she reckoned she could get my case in front of the lead pancreatic surgeon
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in london at king’s college hospital and he had a look at it and he went it’ll be tricky
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but i reckon we can have a go at it and i like a challenge so in the august of 2020
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we had this surreal trip of driving to london with no traffic and 25 five o’clock on friday
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dead you know you could have got out and done your ironing on the on the motorway it was
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completely deserted um and then my wife dropping me at the doors of the hospital not allowed
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to come in uh for a piece of surgery that had a 60 mortality rate so it was a very odd
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thing but it was like a real last roll of the dice um but obviously it works otherwise
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this would be a seance um and it was nine hours of surgery two hours of being in a hospital in
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isolation two weeks of being in a hospital in isolation with no visitors during a pandemic
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and um came out with no pancreas no spleen 10 of my stomach um on a lot of awful taken
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out of me um and then one of the most painful car rides i’ve ever had through a very
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potholed south london high street to get back to cornwall because i have 27 staples across my
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stomach where they’d have to open me up and take everything out so every pothole was like
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um it was very painful but it worked and it’s one of those things where you kind of have to
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just go you know yes now i’m type 1 diabetic and my digestive system is not what it used to
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be but i’m still here and you know in a couple of weeks my son is going to finish
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year six he’s going to go get ready to go up to senior school and you know over the last 10
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years i’ve been told three times i’m not going to you’re not going to see that moment so you
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have to kind of look back on it and go well it was worth it then so that’s kind of where
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that you know um approach comes from i think in my head was there another diagnosis
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so the third diagnosis came a couple of years ago um ironically i started working
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the nhs about three weeks three years ago i thought you know i don’t spend enough time at
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hospital let’s go and work there as well um and i had these kind of you know routine three
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month scans and i went in for the results and they went ah yeah we found a lesion on
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your liver and it’s a really awkward place so we think we can only do chemo and i said
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oh okay well how long how long is the course of chemo going to be and they went well
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for the rest of your life and that won’t be very long and that was that was again on a
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communication front quite poor because that was delivered to me at four o’clock on a friday
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afternoon and then i went home for the weekend and it was like you know i’ve done
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a lot of project management and one of the things we’re always told is don’t deliver bad
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news in a friday afternoon because people have got nothing to do with it for 48 hours
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um but again got i asked for sort of second opinion if you like and a surgeon jumped in
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right now we can get that out that’s fine but it was complicated because even though
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the surgery was fine and i was home after a week i then had a cyst formed between my lung
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and my rib cage and where they put the needle through to get to my liver and i was very
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close to having sepsis so even after all the other stuff i then got my first ride
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in an ambulance which was very exciting and having a cannula fitted blue light
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wasn’t blue light but i did have a cannula fitted whilst on the tall point ferry which
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was an experience i wouldn’t care to repeat um on a slightly choppy day but it was um again
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yeah you kind of i my wife jokes that i’m trying to tick off all the different departments
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of the hospital in their sort of like i spy book kind of fashion but um yeah it was
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another thing that i had to go through and a lot of pain left me very weak but um
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came out the other side of it and touch wood been right for about two years so at the
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moment always good so how’s life now pretty good actually i mean you know
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getting to grips with diabetes is no easy thing and especially as someone who likes food
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and but that’s again i always say it’s a lot better than the alternative um i think as
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family we have a really good perspective on what’s important um we do try to do a lot of
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holidays and experiences together rather than having things um because you know we don’t know
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when the next sort of downturn is going to be for me because melanoma is one of those things
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that sort of tends to be a when it returns not an if which is always in the back of your
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mind um and my son although he’s 11 going on 16 and very teenage at the moment does have
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a lot of empathy for a child of his age which is great um and an appreciation of you know
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not getting too bogged down in the sort of when you shy of teenage drama and stuff like that
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you can shrug it off quite well which is a kind of weird fringe benefit i think um
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and then my wife and i are just you know very good at kind of going well
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yeah this is stressful you know we’ve got a leak under our sink at the moment in the
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kitchen but it’s not going to spin us for a leap because we’ve coped with all sorts of stuff
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um very bizarre stuff like when i went off in the ambulance a couple of years ago uh she was
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also wait or we were waiting for an aster shopping delivery because it was the afternoon
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so we had this slightly odd scenario an aster van turning up at the same time as an ambulance
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and trying to make sure i got put in the right vehicle um otherwise it could have been
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a disaster for the next person on the route but um yeah so you know generally speaking
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can’t complain one of the things that you just said is about melanoma it’s it’s a case of when
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it comes back so i’ve been told they’ve used the word cured with me and actually they used
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the word cured with me between both of my melanoma experiences so i had melanoma on my
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scalp which was um cut away and i was told i was cured and then um the melanoma came
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back in a lymph node in my neck now nobody’s used the word cured with me now but they’ve told
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me that there is no sign of melanoma in my body after a year’s um years worth of immunotherapy
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so hearing you say with melanoma it’s not a case of you know uh if it’s when it’s going
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to come back so i’m i’ve sort of been told that it shouldn’t come back with me um but
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but i was going to say there’s as as we say with dr google and all of these um there’s lots of
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like facebook pages and websites and things about it the more you read the more you learn but
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sometimes more knowledge is not good for you um and i think some people would rather
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just put a lid on it whereas other people leave the lid off if you know what i mean
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i don’t know what your thoughts on that all yeah i think there’s a couple of things
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one is that obviously i’m according to a number of doctors i’m not supposed to be alive now
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so they’re very much kind of like well it’ll probably come back because it’s because it’s
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got into my organs you know essentially you know it’s been in my liver it’s been in my
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lymphatic system um and they’ve now started when i do my three month scans every other one
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they’ll scan my head as well which the first time i was like why are you doing this
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they said well just in case you never know um so i think for my own kind of mental
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fortitude if you like i just kind of go right well i’ve got to be a little bit on alert for
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this all the time but if i’m being scanned every three months whatever they catch should
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be relatively early but obviously i’ve got this experience of 2019 where they were scanning
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and they didn’t see this thing wrapping around the pancreas you know whether it was hidden or
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what i don’t still don’t really know but they didn’t catch it before it did permanent damage
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to my body and and then in terms of the kind of the knowledge thing i’m not very good at
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learning about all the sort of terminology and you know the sort of medical side of it
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um but what i prefer to do is think about the sort of psychological and philosophical and
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emotional emotional sides of it and that helps me to be a better prepared person for what comes
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in the future and and for my family and you know we have between my wife and i have a
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relatively dark sense of humor we have you know imagined scenarios where um we would do a
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sort of blind date type situation where i would help us find a future partner in case
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i was to pop off and things like that because it’s kind of helps us to think about the future
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in a way that’s not too bleak um but i think in terms of putting a lid on it i’ve never had
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that kind of ringing a bell thing that you get at the end that people have on instagram
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and things like that i’ve never had that sort of that’s it you’re done with cancer
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here to support you the Cornwall cancer cafe podcast visit our website www.cancercafepodcast.org
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let’s move now on to some tips and i’m looking really for tips of parents with cancer and um
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and family life mainly so a phrase that we adopted quite early on was just um
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the new normal which is very kind of social media speak but um as an example uh when i became
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diabetic um my son would have been probably where are we probably about um six something
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like that and he could see me starting to having to inject myself with insulin every day
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um so i got him to do it i was like come on i’ll show you how to do it because one day
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need to do it for yourself or for me or whatever um so i don’t hide anything like that away from
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him and if i’m feeling poorly he knows what to do if i’m blood sugars are going low he
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knows what to do that kind of thing and i think the same with the older kids it’s been
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a case of if you want to ask questions here’s here’s a kind of bullet point situation of
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what’s going on because sometimes you know particularly teenagers i don’t want to know i
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praise you of what’s happening if you want to know more anytime just come and have a chat and
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more often than not with my step kids they’re going to talk to their mom rather than me
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because they have that sort of close relationship and that’s fine um but you get these funny
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little glimpses you know i came back from hospital in london in 2020 having survived
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and my eldest stepson joe had written in a little welcome home card he just got stoked
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didn’t die which was like the most teenage thing you could put about you know having
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life-throwing surgeries i was stoked he didn’t die and like cool thanks you know and it’s
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but it’s about meeting where they are about you know being in a place that they’re
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um able to discuss it in a way that suits them sometimes i’ve had chats with my son
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when we’re driving to football training or i’m taking him to swimming or we’re playing
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so that his he doesn’t it’s not eye to eye it’s not awkward it’s not kind of 100% but
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you kind of go you know i’m all right don’t you or you know i might have to go back into
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hospital don’t you and how are you feeling about that kind of thing so um yeah you know
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it’s just kind of become part of you my son doesn’t know any different he doesn’t know
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me without various medications and needles and things like that now but that’s just part of
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thing my some people have cycling some people have golf i just have medication it’s my thing
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okay so we’re coming to the end of the show and uh we’ve got the most important question
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really from emma now sure you wanted to ask something yeah so you mentioned right at the
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beginning that you used to blog about music that was your thing and of course the beginning
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of your melanoma was caused by you stubbing your toe and of course there’s a very famous
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musician who had a similar experience is there not um the legendary bob marley
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and i recently visited his house in jamaica um yeah they it was i had to go it was absolutely
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brilliant going around the house and singing his songs and things but when you first got
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your diagnosis and they said it was caused by your stubbed toe did you immediately think oh
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you know and you know did you try and pick up a guitar and stuff no i didn’t know about the
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two years later um i think i kind of had it in the back of my head that he died from cancer
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but i didn’t know you know kind of just assumed like well he smoked a lot and therefore
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it’s probably something to do with that um but no so it was quite a sort of recently we
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actually only recently about six months ago watched the film of his life the most most
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recent film which features that slightly at the end as well um but yeah it’s i think it’s an
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interesting thing because most people when you say melanoma they go oh like sunburn and you’re
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like no like yes mostly but not for me yeah same with me they said exactly the same to
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me as they said to you oh you don’t look like a sun worshiper and i’m like no so
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why have i got this and they said you’re just unlucky and yeah same for you isn’t it
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just unlucky okay well thank you roland for being on the show and talking very openly
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about so many issues and i just want to finally give you a chance to
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tell people about the book and where to get it sure yes it’s my big toe is killing me
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it’s only available through my website which is www.rolandmunger.uk
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the reason for that was i thought i would try and not give any more money to amazon because
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i thought they’d probably had enough and i’d try and do it that way but now my wife is
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quite keen that i’d shift the book boxes of books from under the stairs so if anyone wants
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copy please do visit the website and order copy or you can find me on instagram as well
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and it’s uh raising money for for st leagues hospice yes and so st leagues hospice helped me
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in the early days i had lymphedema and they’ve also helped my my father passed away from
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esophageal cancer earlier this year and they treated him in his sort of palliative care
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days as well so definitely a good um good course to raise money for okay all the best
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and uh keep in touch okay so emma that was obviously very interesting uh chat for you
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being a melanoma patient yourself yeah uh roland’s the first melanoma patient that
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i’ve spoken to so hello homie and okay so um obviously we will come back to this
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in future episodes but i think first we haven’t we haven’t done this bit
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i’m not a doctor i’m not a psychologist i’m not a counselor are you i’m not no what are
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we we are people with lived experience okay just have to get that clear and i think it’s
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time to re-emphasize the hug big hugs and in a big hug you give a hug you get a hug
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okay and uh we will be back with more insights into lived experience of cancer
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and just take care of yourselves so long bye
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thanks to the national lottery community fund for supporting this podcast