Mark Guymer – worries

WEBVTT

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You’re listening to the Cornwall Cancer Cafe podcast with me, Matthew and me, Emma. Thanks

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to the National Lottery Community Fund for supporting this podcast. So this week we are

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talking about worry that that’s such an all encapsulating is that the right word? I can’t

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think of it is encompassing encompassing. I can’t even think about how to speak English anymore.

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That’s that’s that’s brain fog, surely. Well, yeah, I can blame it on it. Yeah,

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and doesn’t brain fog come from worrying partially? Yes, maybe. That’s so although

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no one really knows. And we’ve had that conversation and we’re I’m not sure if we

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played that one yet. But anyway, we are talking to Mark Gaimer, the chief executive of Cancer

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UK this week about worries. So I’ve asked him to think about 10 things to do with worries

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during the cancer journey, if you like, and he’s come up with some interesting points.

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And worry plays a part all sorts of times they whether you are just signing that form,

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giving permission to, you know, do a treatment on you, or whether you are sitting in the

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waiting room, awaiting that consultation, and you don’t know what the scans results are,

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where all these sorts of things, but there are plenty of worries and you lie awake worrying,

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don’t you? Yeah, although then you get so exhausted that you fall asleep worrying,

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don’t you? But have you had those things where you fall asleep worrying and you actually

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start dreaming? Yeah, you start dreaming about the worries and then you wake up and then you’re

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not sure what was real and what was dreamed and oh my goodness. It’s a bit of a matrix situation.

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It is. Yeah, red pill or blue pill. And then you think, oh, what pills am I meant to be

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taking? Yeah, you get this handful of pills and you’re like, hang on a minute.

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That was a worry. I remember when I first had chemotherapy, I had loads of pills

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and I had one of those boxes so that you could plan your pills out and then I was worried at

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some point that I’d put all the right pills in the right place because you can’t then put them

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back in the box because you can’t tell what’s what. Yeah. And then I was worried about that.

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I know. Oh, pills. Don’t we love our pills? That sounds a bit dodgy saying it without

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context. It does. We like pills. Yeah, I mean, I still use a pill box every day,

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but the days have run off, I’ve rubbed off rather. So I’ve got this pill box, but it’s

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not actually labelled. So then I worry, did I take my pills today? I can’t remember if I

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took my pills today. So. Okay, so we’ve spoken to Mark Gimer and so let’s find out about

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his first point about worry. One of the challenges around cancer is that

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there’s still a strong association with this and the most negative of possible outcomes.

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As soon as you have the diagnosis, people may start to think immediately,

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am I going to get through this? You know, that’s the harsh reality. Now,

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if you look at the statistics, we continue to make really good progress in terms of

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treatments for cancer. There’s a big push over the next 10 years with the new NHS plan to

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significantly improve what we call survivorship. So we’re targeting 75% of all people that have

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cancer diagnosis will survive for five years or longer. And that means that the way you can

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support people is, you know, really helping them understand a little bit more of the

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facts, if you like, around what a cancer diagnosis means. If you find that someone

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immediately is getting drawn to the most negative of possible outcomes, there is a

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you something specific that, you know, we can actually get more information from credible

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sources and truly understand what we’re dealing with here. So there’s a little bit around

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trying to help someone understand the true picture, rather than getting drawn into the

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what ifs, which are often not accurate. And that’s a whole thing about being given

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that five year prognosis and what your chances of surviving are. I found that was a very

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challenging moment during my first diagnosis, because the consultant says to you, you’ve got

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a 70% chance of living for five years. And my brain immediately butts in with me and says,

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you’ve got a 30% chance of not making it through five years. And I mean,

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how dare my brain do that? I know. Yeah, I, until you started saying about the

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the percentage of prognosis, I was trying to think, I don’t remember having that conversation

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in my, when I was diagnosed, when I got the prognosis. But I think it’s because I did,

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I did what everybody does, you hear the word cancer, and that’s the last thing you hear.

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And afterwards, you read the letter, and it’s in the letter, actually, isn’t it? And it

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tells you you’re, you know, if you do nothing, it’s this, but if you do this, then it improves

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to this. And if you do, but yeah, your brain looks at it and goes, what 60%? That’s 40%,

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or 50% or 60% or 90 and 10. But you know, it immediately goes to the worst case.

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Yeah. And what if I’m in that 10%? Yes, yes, exactly. And he was there talking about

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understanding the true picture, the realistic picture.

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Yeah. He also mentioned about credible sources as well, which I know is something we’re

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going to cover later. But you know, you’ve just got to make sure that you listen to the

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right people and listen to the right things. There has been an interesting article in

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Lymphoma Action News, which is about using online AI overviews for health information.

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And it says, with the rise in the use of search engine AI overviews, it’s important

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to use trusted sources for health information. They say the use of artificial intelligence

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is growing rapidly, and it can be a powerful tool in providing health care, for example,

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in improving efficiency or aiding diagnostics. And they are commonly displayed first by search

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engines like Google. They’re a short summary of text created from many different internet

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sources that appears at the top of the results page. While they might be quick and

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convenient, how do we know we can trust that information provided? And I’ve always

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gone from the opinion that if I want to trust the information, either ask your

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consultant, your GP, or your nurse specialist, or Macmillan. Yeah, you need to talk to the

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people that have undergone the training and have got, they’re doing their CPD.

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They know what they’re talking about. They’re invested in you. They’re the people that you

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need to talk to. And I will also say, if you’re listening to this, don’t take our word for it.

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Check out what we say as well. You know, we aren’t trained people, are we Emma? No,

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when we don’t have any qualifications, we’re just talking about it. But we are talking to

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the people that are qualified. So please get your information from the right places.

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Good advice there. That’s good advice. So we then continued with our point two from Mark

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Gimer from Cancer Support UK. The second thing that I think people worry about is that feeling

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of being alone and isolated with this situation. And the way that I’ve heard people

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describe that is saying, you know, even for example, my partner doesn’t really understand

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what I’m going through. They’re not able to because they’re not in my shoes. So

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they can very quickly feel quite isolated and feel like they’re doing this alone, even

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they may have close friends and family who love them dearly. It’s very easy for them to start

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feeling isolated. So this is where it’s really important that you stay available to them,

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but you also start to engage with them to try and understand, excuse me, you understand the

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ways to communicate with them around this topic, and try and understand things from

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their perspective. And there’s a lot to be said for just listening to someone,

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not trying to solve the problem, but just letting them tell you how they feel.

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And it might be hard to hear if it’s a loved one. You know, if someone tells me,

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I feel like I’m doing this on my own, and I feel isolated, and I’m there going,

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I’m coming to you to every appointment, I’m doing my best. If you start pushing back and

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trying to justify what you’re doing, that’s not really going to help. In those situations,

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what we would recommend is you just listen to what they’re saying. And as hard as it is,

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you have to kind of say, well, I’m really glad you told me that. You know,

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I feel better that I understand a little bit about how you feel about it. And that will

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help keep people connected and make them feel less isolated.

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And I think this whole thing about feeling alone, I mean, you can feel alone in a busy place.

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And this is where the power of support groups comes in, because you are with people who’ve

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been through, sometimes very similar, sometimes not so similar, but will be able to listen

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more keenly to what you have experienced.

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Yeah. So the word I wanted to use to summarize that up is communication.

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So this is about you communicating with your partner, your loved ones, your parents,

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your kids, sorry, children. Some people don’t like the word.

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Tackers.

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Yeah, the little ones. But as Matthew said, going to support groups can help you

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to communicate because if you go to a closed support group where it’s only people that are

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with cancer, you can have really raw conversations with them, but you can also say to them,

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I don’t know how to express this to my partner, my whoever. And they can help you

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do that. And then there’s also support groups where you can bring your supporters with you.

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So then you get a different vibe going on in those groups. And they can talk to

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other cancer sufferers. They can talk to other supporters. And I just, I think both of those

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types of groups are really, really important, but it is all about communicating. So it’s

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acknowledging that there’s something going on with you. And then obviously you’ve got

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to think about actually, how is this making me feel? How can I communicate that?

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And you might not be able to do that straight away. It might take a while. So

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don’t beat yourself up about the fact that you’re, you know, you’re not being able to

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explain yourself to somebody because you probably haven’t figured it out for yourself yet.

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Oh, that’s very, that’s very true because there are so, there’s so much information,

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there’s so much to digest that it takes an awful long time. And sometimes you can go

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through treatments and come out of treatment, the other side, be in recovery and still

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haven’t worked it out. I mean, I can vouch for that.

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Yeah. And there’s another side of it that you might not want everybody to know how

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you’re feeling. So you might feel protective over your children and you think they don’t

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need to know all of this because some of it can be very, very personal. I mean,

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obviously depending on where your cancer is as well, you know, it might be somewhere

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that you find it very difficult to talk about because of where it is in your body.

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So you’ve got to overcome that as well to be able to talk about something that you

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feel very uncomfortable about in the first place.

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And we do find a lot of people now going public in the media about having a cancer

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diagnosis and they go public and explain the best that they can. They don’t give the

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whole diagnosis. And that’s even tougher, I imagine, you know, to have to go public

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in a meeting. You think about King Charles, you know, and Kate, what they went through

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in having to, I’m not saying having to, but in actually communicating their diagnosis

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to the whole world. Yeah. And they’ve had to be very

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careful how they do it because I think with King Charles, especially, he doesn’t want to

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tell us exactly what his cancer is because I think he wants to highlight the fact that

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cancer’s out there and he’s suffering with it. But I think if he said, oh, it’s, I don’t

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know, whatever cancer it is, people might start then honing in on just that one cancer.

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So I think he’s doing a really good job of highlighting the fact that cancer’s out

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there. There is recovery. I mean, he’s still with us. He hasn’t died. So, you know,

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he’s in, I think he said he’s in remission. I think we’ve heard that some something like

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from him. So he’s out there advocating that, you know, you can live with cancer,

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you can get over cancer. There’s life beyond cancer. So I think he’s done really well

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and his comms team have done really well in the way that they’ve told us about it.

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So let’s move on to the third point from Mark Gaimer, the Chief Executive of Cancer

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Support UK. My third item that I think people worry about when they’ve had a diagnosis

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is actually the physical impact that cancer has on them. And there are numerous side effects

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that people can can face through a cancer diagnosis or treatment. Sometimes it’s things

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you can see quite obviously, you know, it might be hair loss.

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But there are things that are not so easy to see, such as fatigue. We know that certain

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treatments will leave people feeling really tired, really drained, physically drained.

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And that can be harder to detect. And we know that people will worry about this and

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worry what does this mean. So again, you can support people in different ways,

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but making sure again that if they’re worried about a side effect, a physical appearance,

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there are lots of organisations that will provide specific support around that.

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But again, you can talk to your doctors, the medical people about this. They are very

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familiar with these issues because they do come up a lot. So they will either have

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specific advice or can guide you. But if you are, we always say if you are

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researching these things, as always, be really careful that you’re using trusted,

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reliable sources, because you’ll see lots of things on social media, people suggesting

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this, that and the other. And you’ve just got to be a little bit careful that it’s

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accurate information for your particular case.

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And at this point, it’s useful to point out that at the Cove, they have,

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which was run by Macmillan, they have a whole library of information which covers all

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cancers and about the physical and mental health impact as well, all those sort of things.

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And they have services. So we were talking about hair loss there. And a service which

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works through the Cove is called Roots to Rise. It’s a non-profit organisation

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supporting those suffering with hair loss with wigs and alternative hair replacements.

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And you can get information about that service through the Cove. They’re based in Plymouth,

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so not too far away. And their website address is Roots to Rise,

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R-o-o-t-s-t-o-r-i-s-e dot cove dot u-k. But so go to the Cove for information about that.

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So physical impact. What about from your perspective, Emma?

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Okay, so I’m going to go really personal on this. So it’s going to be all about me. Sorry, guys.

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So I’ve had melanoma on my head and then in my neck. And I had surgery on my head and

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surgery on my neck and the same surgeon, Mr Pinto, did both. And he did such a good job

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that nobody can see it. So it’s become invisible, but I know that it’s there.

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And I also suffer from fatigue following the treatment that I’ve had. So

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I try and explain that to anybody that’s sort of like if I have to say to someone,

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I need to sit down and go to sleep. It’s like I’ve got a button in between my eyes,

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between my eyebrows, and it feels like someone presses this button and I have to shut down.

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I feel, I don’t know, I’ve got, I don’t know if you remember Metal Mickey from years ago,

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but he had this little on off button. Oh, that’s really 1980s.

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Yeah. But I think of that and I think I’ve got this on off button. But like I said,

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because my surgeries went, he did such a brilliant job on them. You can’t, you just don’t see them.

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And I know that others will have had surgeries that are not visible on their body when they’ve

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got their clothes on or, you know, they might have a stoma or although they, yeah, there’s

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things that are not visible. It’s the invisible disability, isn’t it?

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It is. I mean, from my perspective, I’ve had no surgery for the cancer. I mean, the only

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surgery I had was to fit a Hickman line, which was to deliver drugs. And so there’s nothing

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outwardly, apart from when I lost my hair, which I lost my hair twice. But once that had

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grown back, there was nothing to, I don’t know how to say, to show for it as though you’d gone and.

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You don’t need a badge, do you?

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No. Although I did have a badge once someone gave me. I can’t remember what it said.

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It was, it said, don’t blame me. I mean, I’m having chemo or something. I don’t know,

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something like that. That’s quite funny, isn’t it?

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But actually, I’ve seen lots of T-shirts for sale online, which have funny things

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like that on the T-shirts. And I suppose that’s people do that to a certain extent,

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because they want people to be aware that there is an issue, a physical impact which is,

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you know, affecting them.

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Yeah, because you don’t want to be going around all the time telling people, oh,

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I’ve had cancer. And because sometimes you just don’t want to have to be talking about it

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all the time. So if you’re the sort of person that can wear a T-shirt like that,

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I mean, go for it. How supportive. That’s wonderful.

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Okay, so now we’re moving on to another point.

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The fourth area that I’ve highlighted that I think people worry about, and this is something

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which is actually quite significant, but we think underrepresented is the financial pressure

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that people face when they have a cancer diagnosis.

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So there was a piece of research done some time ago, which suggested that somebody who

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has a cancer diagnosis, through the very nature of what that means in terms of getting

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to appointments, maybe needing slightly different items, whether that’s clothing,

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food, whatever it might be, it could be heating, which we know at the moment,

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energy costs are quite a significant impact on people’s cost of living.

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The treatment could mean that you need heating on more. So you’re using a lot more energy.

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So costs will go up. Now, on top of that, you may feel that your work or your work may be

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impacted. If you’re self-employed, having a cancer diagnosis can be incredibly challenging.

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If you work in an organization, is it a large company with a big support package around it,

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or is it a smaller company that would struggle a little bit more to support you?

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So there are certain aspects where you will get some help and some protection,

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but this is still an area where you are most likely to feel some kind of increased

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financial pressure when you’ve had a diagnosis. So again, people can be aware of that. You can

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think about, okay, so can I help, for example, with the cost of parking, if you’re paying for

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to go somewhere? Can I give someone a lift so they don’t have to pay the costs of fuel to get there,

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costs of parking? There are different little things that you can do just to try and ease

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the burden a little bit. Offering someone a warm space if they’re struggling with their

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heating bills rather than them having their heating on all the time. Little things like

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that can really help. And then obviously the research side. So where can they go and get

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financial support if they need it? Having somebody to help search on the various areas

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where they need support can be really, really important and really helpful.

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Financial advice is something else Macmillan give?

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Yeah, that was the first thing I was going to say. Macmillan, Macmillan, Macmillan.

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My background is in finance, so after I got the cancer diagnosis, I then,

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I suppose because my background was in finance, I thought about it a bit less.

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And then I thought about, hang on a minute, what’s available? So Mark Gaimer talked about

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a few things like parking was one of the things. And I don’t know if I should say this

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over the podcast, maybe I should. You might have to edit this out. But at Trilisk,

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if you are having cancer treatment or having any treatment to do with cancer,

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you do not have to pay for parking. You can park at the hospital and then on your way out,

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you press the button at the gate. Thank you. And someone will eventually answer the phone and you

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just say to them, I’m having cancer treatment. The gate will open and you can leave. So if you

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have to go in for a short appointment, you could be in there for a long treatment.

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You do not have to pay for parking at Trilisk.

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And you pointed out to me about if you have a blue badge.

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Yes. Also, if you have a blue badge, you can pay for your parking using the barcode on the

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back of your blue badge. So my work around with that. So because obviously you need to

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leave your blue badge in your car window, I’ve taken a photograph on my mobile phone of the

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back of the badge. So when I go to pay for my parking, I just pull that photograph up

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and use that. So I’m not doing anything wrong. It just saves the walk back to the car to go

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and get the card back to the parking machine. So I do that.

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We’ll see you in prison.

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OK, so let’s move on to the final point from Mark Geimer and Emma wants to come back in on this.

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Yeah, there’s so there was a few other things that happened when I was first

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diagnosed with cancer. One of them is prescriptions. So you can get free prescriptions,

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but you have to apply for it at your GP surgery. And I didn’t get not everybody gets told about

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this to begin with. And it’s something it’s another thing that I share with people. So

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if you have been given a cancer diagnosis, if you have not got free prescriptions yet,

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contact your GP surgery. They will give you some paperwork to fill in. You have to give

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it back to them. Your GP then has to do their bit. It gets sent off. You will then

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get an exemption card and it exempts you for five years.

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I got my form from my consultant, I believe.

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All right. No, I had to go to my GP surgery.

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OK, right. Let’s move on to the final point from Mark Geimer.

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The person who’s had the cancer diagnosis and we hear this surprisingly often

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will say things like, you know, OK, yes, it is difficult for me. But do you know what?

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I’m actually more worried about my partner and how they’re dealing with it. Or I’m more worried

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about the children and how they’re coping with it. And actually, people who have a cancer

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diagnosis do spend a lot of time worrying about the impact on other people. And this,

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again, is something which when you’re when you’re that other person, you might not

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realise because you’re so worried and consumed about them as the person with cancer,

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you forget that they’re expending a lot of their emotional energy worrying about you.

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So being really mindful of that and understanding that can be really,

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really helpful. And we think it’s such a big issue, actually, at Cancer Support UK.

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We are launching a new service within our cancer coach services, which is specifically

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aimed at friends and family, because we know that they need support as well.

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You know, it’s not just the person who’s had the diagnosis and the more that they can

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understand the topics, the issues around a cancer diagnosis, the better they feel prepared

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to help. And that takes a bit of the pressure off the person who’s had the diagnosis saying,

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you know, I know they’re struggling with it as well. So it’s a complex web,

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but I think it’s a really important issue to be aware of.

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So what Mark Gimer is saying there is about the impact on friends and family.

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And we are intending to find someone to chat about this for a whole programme about

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the perspective from the friends and family.

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Yeah, and hopefully we’ll be able to find some places that we can direct you to so

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we can signpost you to, as he’s mentioned, just mentioned, so that there’s going to be

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other places where friends and family can go to find out more about the cancer that

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your loved one’s been diagnosed with. And sometimes the more you know about it,

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the better or the worse it could be. So it’s just getting that balance right,

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isn’t it?

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And don’t forget, actually, once again, Macmillan on their website and at the

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books have information which is accessible to friends and family as well.

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Yeah, I think the Cove needs to be used a lot more. I mean, it’s a wonderful place.

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Friends and family, if you want to know anything, just go in there and speak to

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the ladies on reception. They’ve got a lot of knowledge. They can signpost you to places,

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but if they feel that you need some help, they can probably signpost you to particular

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people or particular websites.

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And I believe they do have a group for people who, not the people who have been

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diagnosed, but the friends and the family.

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Yeah, and also I think we mentioned earlier about there’s groups that people with

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cancer diagnosis can go to, but there’s also groups that they can go to with their

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friends and family. So they’ll be able to open up all of those channels for you.

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So that’s it for this week. I just got to point out that I’m not a doctor,

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I’m not a psychologist, I’m not a counselor or anything like that.

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It’s just lived experience on my part. Are you a doctor?

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No, not lived experience with me too.

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Okay, but what you are very good at doing is offering hugs.

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Yeah, big hugs, big hugs to everybody because when you give a hug, you get a hug.

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Right, I’ve got to do the bit of music about that.

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No, no.

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Okay, that’s it from us this week. Join us again next week.

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Bye.

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Bye.

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