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You’re listening to the Cornwall Cancer Cafe podcast with me, Matthew and me, Emma.
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Thanks to the National Lottery Community Fund for supporting this podcast.
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So we’ve spoken about support oodles in the podcasts up to now, lots of different sides of
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it. But one of the people who are with someone with a cancer diagnosis an awful lot
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is the consultant. And we really need to find out their part, don’t we, Emma?
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We do. They play such an important role. They’re the person that we look to for
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guidance, for knowledge. So yes, such an important person in our journey.
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And that whole sort of part of trust as well.
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Yeah, trust, friendship, hope, all of those things. You look to your consultant for those,
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so we asked around at the Royal Cornwall Hospital for someone willing to help us
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answer our questions. And, well, let’s have an intro from the person themselves who said yes.
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Dr David Tucker, I’m a consultant hematologist at the Royal Cornwall Hospital and I work
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in lymphoma and leukemia, mainly. So we went and sat in his consulting
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room. And it’s actually nice being in a consulting room and not actually having any
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consultation. It was really bizarre, actually sat there with a consultant not being
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delivered any news of any sort. And we were the ones pumping him for information.
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And he was so lovely about it, wasn’t he? And he’s a musician.
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Yes. He told me he was a drummer. Arrhythmias.
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Arrhythmias. Yeah, he’s in a band. He’s in a band. They’ve got a band.
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We’ll find out about that some other time. But OK, so we wanted to know a little bit about
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the whole role in support from the consultant. So let’s go back to David Tucker.
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The first thing you’re trying to do as a consultant is establish a relationship
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and establish some trust with the patient. And this is somebody you’ve never met before
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and they come into your office and you might have some really quite serious and potentially
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bad news for them. So you have to kind of very quickly establish some trust and some
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relationship with that patient. So that’s something that takes some skill to do.
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And then when patients come to see us, because we’re cancer doctors, often
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breaking that bad news about having a new diagnosis of cancer, that takes time.
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And it’s a little bit about going slowly through that so that you give patients time
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to process what you’re telling them, because often as soon as you say the word cancer,
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that’s the last word that the patient will remember from that particular consultation.
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So you have to remember that not everything that you say will be
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heard or processed in that moment. So we often encourage patients to bring someone with them
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first of all, because going through that on your own is really quite difficult and it brings huge
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emotional baggage. And we often worry about patients that we’ve given that diagnosis to,
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how are they going to cope just leaving the room and going home? How are they going to
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get home if it’s been a particularly difficult diagnosis? So bring someone with you,
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take time over that initial often bad news moment. And don’t worry about not
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remembering everything that is said, because we will make sure everything is written down
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in a letter to not just to the patient, but to the GP. We have loads and loads of resources,
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loads of books about the different diagnoses that we can give to the patient. They may want
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to make their own notes during that time, but they may also some people like to record
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that initial consultation. And as long as you have agreement with the consultant that you’re
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seeing that that’s okay. I personally don’t mind that at all, because it’s just another
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record for the patient to go away and look at. So that would be my first thought.
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Yeah. Emma, we were talking about when they bring some, a friend or a family member along
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about their part in this as well, weren’t we? Yes, we were. So I was lucky enough to have a
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plus one. A friend of mine came with me and she wrote everything down for me. And I know
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one of the things we were going to ask you or talk to you about was what we’ve got written
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down. Are there three questions that someone should ask at every consultation? Yeah. I mean,
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the things that I like to make sure that we’re all on the same page when we see patients
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are what’s the, what’s, if we’ve got a diagnosis, a cancer diagnosis, what’s the goal of our
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treatment? So what are we looking at here? Are we looking at trying to cure the patients?
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Are we looking at controlling the cancer? Because some cancers are just not curable and
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we have to kind of learn to live with that. Or are we looking at comfort as the priority?
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So the first thing is what would be the goal of my treatment? What are my options? And those
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options change. So that’s something that can always be discussed. There’s very rarely just
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one option. So, and often things have got various options for treatment. So talking about
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those and then what happens next? So what happens if something changes between now and
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my next consultation? Who do I get in touch with? What should I look out for? So what’s
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the goal? What are my options? And what happens next? Are three good questions to have in mind
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for patients as they, when they come to see us. But they will have their own questions and I
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would just, and those questions are not necessarily what we think they’re going to be. So we
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sometimes sort of project our own anxieties onto each other, don’t we? And I always
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encourage patients to write things down, bring them with them and then give them space
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to have those questions answered in the consultation. When it comes to the end of
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seeing the patient and they go out the room, do you get a full sense of how much they really
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did take in and understand? Yeah, I think the gap between what’s said and what’s heard is
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something that’s underappreciated. And I think as soon as you start mentioning words like
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cancer or in our cases, things like leukemia, then often very little can be remembered after
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that. So we do, we are aware of that. It’s human. That’s a normal response. That’s why
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we record everything in our letters. It’s why we try and keep things clear and it’s why we
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like to revisit things the next time we see the patient. And there’ll be other opportunities
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we were talking today about the support mechanisms in place for patients. And it’s not
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just the consultant in the room, obviously, that is involved in that. There’s a team of people
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there who can help to support them. You’ve got your clinical nurse specialists, the psychology
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team at the Cove. There’s a whole team in the back as well. There’s the pharmacists who are
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also looking out for that patient. So you may not know this, but whenever we do a prescription
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for new drugs, that is checked, sense-checked by a pharmacist. And that’s cross-checked against
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the patient’s kidney function, against their blood numbers so that we don’t over-prescribe
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or under-prescribe certain medication. So there’s the pharmacist, there’s the nurse
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specialists, there’s the psychologists, there’s our health care assistants. So there’s a whole
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team of people there who are there to support not just the patient, but to support us.
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You mentioned the CNS. Can you just sort of make a distinction between what they are there
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for and what you are there for? Yeah, sure. So the CNS, the clinical nurse specialist,
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is a really, really amazing and helpful role for us. They do a whole load of work. They
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slightly differ in terms of which specialty you’re in. So they tend to be specialized
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to particular cancer types. So there are different ones for different cancer types.
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They’ll provide psychological support to the patient, emotional support, logistical support.
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So often the treatments that we prescribe, they can be fiendishly complicated. Some of
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the regimes, they come with all sorts of supportive medication. That can be a massive
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new burden for the patient. So the nurse specialist will help them to understand
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what their treatment involves. And they can also be a good bridge between consultations.
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If the patient has questions or problems in between, they can get in touch with the
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clinical nurse specialist to discuss those. And they can also be a bridge to primary care.
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So they can help the patient with palliative care, for example. And by palliative care,
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that’s another whole topic of conversation. But it doesn’t mean that we’re giving up
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in terms of what we’re doing. It just means that we’re moving away from cure as our
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primary goal and into control or comfort. And that can take a very long time. But
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it’s really important that our clinical nurse specialists are involved in that conversation.
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And also signposting other types of support.
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Yeah, exactly. So there’s a whole host of online support that patients might not be aware of
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when they come into a new cancer diagnosis. There are websites, there are fora on Facebook
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and social media. Other patients who’ve been through the same thing might be helpful in
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support. There’s the Cornwall Lymphoma Group, just as an example, where people can get more
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information. And they can get support from more patients who’ve been through a similar
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thing that they’re going through. I think that must be really effective and supportive
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for patients. Emma Thorpe.
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Yeah. So you mentioned about the different types of groups that are out there supporting.
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I think patients have to be very careful which groups that they interact with. Because on
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Facebook, there’s groups from all over the world, as I found when I first got my diagnosis
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and dived into Mr. Google and Mrs. Facebook and found groups all over the world. And
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sometimes the news that was coming from the groups wasn’t positive news. And I found that
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challenging. So I then, after I spoke to a psychologist, she was like, why are you
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even looking at? Just leave the groups, leave the groups or silence them until you’re ready
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to interact with them again. So they are very supportive, but you need to be careful
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how you use them. And I think the other, another thing I was going to talk to you about
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when we were talking about support is you’re a human being as well. And obviously delivering
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this sort of news to your patients is, there’s an emotional toll on you as well, isn’t there?
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Yeah, that’s absolutely true. So just going back to your first point about the double
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edged sword, that is the internet and social media. You’re absolutely right that we now have
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access to everything from around the world in terms of that. And I have had patients come to
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me, you know, a bit misinformed and through no fault of their own. And you can have to spend
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some time on doing that or suggesting treatments that just not either not suitable or not
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any any available anywhere in, you know, in the NHS. We do have really good NHS and we
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do have excellent treatments compared with lots of countries, but treatment does vary
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according around the world. And so you do have to bear that in mind when you’re
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accessing these things. So I completely agree with you about that. Yeah, with regard to our,
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as a consultant, it being in hematology and cancer, it is quite a burden. It can be
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difficult, particularly if you get to know your patients. So a lot of our patients have been
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with us for decades or certainly years. We know them really well, almost like a GP would
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know them. And if things change, if, you know, if disease changes and what have you,
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that can be difficult. And it can be difficult to separate out that friendship from being a
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professional. It’s always important to maintain that professional status, but it’s impossible not
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to become friends with people that you’ve known a long time. So that can be quite hard
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And do you get actually support yourself in dealing with that sort of thing?
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Yeah, I mean, there are, we do have access to the sort of occupational health and
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they have psychology support. We support each other. So we don’t work in isolation. And
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that’s perhaps something we could talk about in another episode about the way the
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multidisciplinary team works. We tend not to make decisions on our own. That’s
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regarded as bad as not good practice anymore. So all the decisions go through our colleagues
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and we make sure that we’re sense checking everything with each other. And we share
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difficult cases and difficult times with each other. That’s probably the healthiest way that
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we can deal with it. So we work in a really close team and we have to share those things
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together. Yeah. I suppose you’ve also got to share the successes.
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Yeah. And we’re delighted when things go well and we’re there fighting with
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hematology consultants and cancer consultants for a reason because we want to do
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the best and we want to fight what can be very difficult diseases. So when we win
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with a patient, then that’s a really great feeling. And it’s one of the most rewarding
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things that you can go through. I mean, not just for the patient, but for us,
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it doesn’t always go that way. And we have to always bear that in mind. But that’s what
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being a doctor is about. And you learn to live with that. But you’re right. It can be
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extremely rewarding job. I was going to ask about the new cancer treatments that there’s
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new ones all the time. I mean, the in the background, the scientists are working. I say the
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scientists like I know them, the scientists are working and they’re coming up with these
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new ways to fix cancer. So it must be quite an exciting time as well. So obviously,
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you need to keep up with all of this. Do you want to talk a little bit about
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it? Well, I was just remembering because I relapsed twice with non Hodgkin’s lymphoma
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and my consultant told me when I relapse the second time, there are plenty of more
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treatments to come if we need them. So it was that was a big supportive thing for me.
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Yeah. So that’s my pet project, really. So I most hematologists are interested in
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research and keeping up with the latest treatments. And you’re right, the
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treatments are moving at a pace in many of the of the disease areas and things
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have really changed and continue to change. It was the reason I went into hematology
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was for the research really. So we have here a really big portfolio of clinical trials
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that we are actively recruiting into and trying new therapies or new combinations of therapies.
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And as a result, that has moved the dial in terms of prognosis and management of
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certain conditions. And it’s really rewarding to be part of that. We have to keep up to date
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as a professional, you have to do certain amounts of professional development every year.
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So everybody has to do that. But we are, I think here, blessed with a really fantastic
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trials unit. So and trials isn’t some people think trials mean I’m going to be a guinea pig
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on something that’s never been used before or there are nothing else left for me. So
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they’re putting me into a clinical trial. Those are common misconceptions and that’s not
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the case. So we offer patients clinical trials in some areas right from the get go from the
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from the word go, not because we haven’t got good treatments, but because we’re trying to
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improve on the treatments that we already have. I think from the the patient’s
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point of view, because I was on a trial when I went for my first lot of chemo
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with extra drugs on top to essentially stop the relapsing. I know I was on the active one.
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But it didn’t work for me. But that’s not the point of it. But what was beneficial for me
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is I felt that because I had people monitoring me even more because I was on a trials team,
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I felt a lot even more secure than I might have done without that.
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So that’s a really common, you know, emotion. So we have when you’re in clinical trials,
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it does mean more visits often and more monitoring. But and some people for that,
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for some people, that’s a drawback. But for others, that means more,
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you know, surveillance, and they’re very comfortable with that. So we, you know,
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don’t see that as a negative thing. Clinical trials are, you know, really important,
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not just for the patient, but for the future. So if things don’t work out, then at least
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you have contributed some new knowledge to the sort of landscape in that. So every time someone
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volunteers for a clinical trial, we’re absolutely delighted because it helps to build more
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knowledge in that area. When it goes well and the patient benefits directly, that’s an
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even bigger bonus. And we’ve seen that in my time here. We’ve tried drugs that were
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very experimental a few years ago, and now are mainstream and are part of the standard of care.
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And that’s absolutely, that’s really satisfying. And when we don’t have the trials open,
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we can always refer. So it’s never, it’s always a good idea if you’re seeing a consultant or
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whatever, and perhaps they’re talking about options, ask them, is there a clinical trial
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anywhere that might be appropriate for me? If we don’t have something, somewhere else might do,
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and we’re well connected as a community. So we would very much, it is part of making things
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better, not just experimenting, you know. And I suppose this is possibly the tricky one for
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both the patient and the consultant when the patient wants to ask for a second opinion.
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So that’s a really good question. So, and good point. Asking for a second opinion is very much
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within your rights as a patient. As long as it’s done in a sort of respectful way,
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there’s absolutely nothing wrong with it. And we would always encourage that because it’s good
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clinical practice to get second opinions if you’re not sure. So, you know, that does
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happen. We welcome it. It’s not, we shouldn’t, we don’t feel like it’s a sort of a,
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you know, a lack of trust. It’s just part of the process that people sometimes wish to have.
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And we often ask for second opinions ourselves.
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Well, we’re going to talk about this in another episode about MDT, isn’t it,
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where you talk amongst yourselves. So just very briefly, just mention that,
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and we’ll talk about it more in more detail to another point.
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Yeah, so as a consultant, you never work in isolation. You never make big decisions for
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patients in isolation. You always take things through the multidisciplinary team, other
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consultants, other specialties, radiology, pharmacists, nurses, histologists, to make sure
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that you’ve got it right. So decisions are always made as a group. But sometimes you might,
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not know exactly what the right thing to do is. And there is that sense of being honest about
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that and offering, asking for a second opinion. I’m part of a number of national groups where we
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share opinions on difficult cases. That’s just good practice.
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Okay, Emma, we’re getting near the end of our time on this one. So any final thoughts on
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this? So I think we’ve talked about the negative side, and then we’re back to the positive side.
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But the sort of like the in-betweeny bit, isn’t there, the in-betweeny, the
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I don’t know what’s next sort of thing, because this podcast is more about support,
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isn’t it? But it’s not just supporting the patient, it’s supporting the supporters of the
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patient, if you know what I mean. So we’ve sort of talked about how the patients,
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hear the word cancer or leukemia, and then at that point they can’t hear what comes next.
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So the plus one has to hear it. But obviously it takes a toll on that plus one as well.
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And then suddenly that plus one also needs to understand enough about what you’re trying to
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tell the patient. So I suppose in a very roundabout way, I’m trying to talk about the
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language that you use when you talk to patients. Because obviously you need to use
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proper medical terms, but then you need to explain what they mean. So you’re absolutely
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right. And we use so much terminology, and we get sort of desensitized to it a little bit,
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and we bandy around all sorts of acronyms and numbers. I was told you’ve got non-Hodgkin’s
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lymphoma. And I said, what’s that? Yeah, exactly. So going from, you know,
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if you don’t understand something being, you know, having the confidence to say,
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can you just slow down and put things in the language that I can understand? We have
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booklets and things that will help to sort of bust myths or explain acronyms.
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Some of the wording that we use needs defining and explaining words like palliative. Often
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people think, oh, that means that there’s nothing left for me, and there’s nothing
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that’s not the case. Palliative should mean we might not be able to cure this,
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but we can treat it and we can slow it down or we can control it. So we have to be aware
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that those words can have different meanings. We sometimes use a phrase which we’re trying
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to kind of move away from a little bit called watch and wait, which is if in certain
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conditions it’s not the right time to treat it straight away, you wait, but that can
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lead to a lot of anxiety because we’re watching and waiting for what exactly.
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We tend to use the words active monitoring now because it’s a bit more
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positive about that process that we’re not just waiting, we’re actually monitoring
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certain things. So those are words and all of those diagnostic terms like leukemia,
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as soon as we say the word leukemia, that is such an emotive word, but it doesn’t necessarily
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there are different forms and there are there are slow types and rapid types.
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So and lymphoma as well. There are hundreds of different forms of lymphoma.
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So yeah, that’s a good point. We need to be careful about the words that we use.
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I suppose also it’s a good time to mention that in the Cove and on the Macmillan website,
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there’s a lot of books and information to help explain some of these things.
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Absolutely. And there’s the Macmillan and there’s the lymphoma support groups
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and support groups for whatever type of cancer.
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Those are just the ones that I know about. But for every disease, there will be a support
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group here to support you. The Cornwall Cancer Cafe podcast.
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Share this podcast on your social media so others may benefit.
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So what a great guy. Yeah, what a lovely chat and so
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helpful and wanting to be part of what we’re doing.
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And we went in there. I’ve got a few notes that of things we wanted to ask and he pulls
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out a log list of things he prepared. Yeah, he’d obviously put a lot of time
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and effort into it and a lot of thought. It was brilliant, absolutely brilliant.
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So we’ve also got a chat lined up where we will be looking at some other things.
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Let’s look. I’ve got a list of, yeah, we talked about what is remission,
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what is being cancer free. That’s something we’ve got coming up.
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And also we’ll be talking in that same one about side effects, which
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is a very interesting chat. Not long off now we’ll be playing that.
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Yeah, and he was very easy to talk to and easy to ask and discuss those things with, wasn’t he?
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And I think that’s part of what makes a great consultant, isn’t it?
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That ease of being able to relate difficult information.
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Yeah, and also the questions we were firing at him because I was coming at,
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I think I came from a slightly different direction to you because we’ve lived with different cancers.
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But yeah, there was so much preparation had gone into what he does, but he cares.
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And I think that’s it. I think that was it. He really cares, doesn’t he?
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And so one of the things is to make a point here because he is an expert.
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I’m not a doctor. I’m not a consultant. I’m not a psychologist. Are you, Emma?
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No, I’m not. I think you might be a podcaster, though.
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Yes. But we’re also lived experience, aren’t we?
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We are lived with cancer.
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And we appreciate the support of anyone such as the consultant, as the Macmillan
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and other support organisations and of one another. One great way of showing support
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is a hug.
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Yeah. And as always, a little tagline now.
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Big hugs from us, because if you give a hug, you get a hug.
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I’m going to have to turn that into a rap with some music.
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That was a very sort of reticent OK.
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Oh, no, that’s basically translated as,
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maybe not.
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Yes. OK, so we are going to be playing you some more interviews with Dr David Tucker,
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who is a consultant haematologist.
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Although he was talking about haematology, there’s plenty of things in there which
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hopefully are relevant to anyone with a cancer diagnosis.
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As someone with melanoma, did you find those some interesting points?
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Yeah, there was. And I was able to ask him one or two things that
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widened the questions, didn’t it?
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Yes. OK, so once again, we are going to be back with you in a week’s time.
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In that time, we’d love you to help get the message of this podcast around to
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who might benefit, because we want to do this gently.
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We don’t want to charge up someone’s drive and say, listen to us.
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We want you to just if there’s someone who you think might benefit,
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just gently tell them about the podcast.
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Yeah, whether it’s someone that’s that’s been diagnosed or someone
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who’s got a family member or a friend or just someone that’s just genuinely
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interested in how we’re talking to people or you just never know when
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cancer is going to arrive in your life, do you?
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OK, so see you all next week. Bye bye.
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Bye bye.