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I'm really honored to be joined by Pamela Dacey, who is a patient who's experienced pancreatic cancer back in 2018 and has experienced cachexia as part of that journey, and she's here to tell us a little bit about her story. Thank you so much for joining us, Pamela. No problem. Delighted to be able to help. Um, Would you be able to tell us a little bit about yourself, your journey, maybe a little bit about your connection with Pancreatic Cancer Ireland. I suppose it began um back in the summer of 2018. I wasn't feeling great. I was attending my GP and there was a query of a kidney stone in August or September. But I was experiencing tiredness, which was my only major symptom. And my blood tests were clear. Everything was looking good. But I knew coming up to um September, October time. Things hadn't changed. The fatigue was getting worse. So I attended my, uh, GP and said that I needed to be sent somewhere because something wasn't right. So I went for a scan of my kidney in the end of October. And in November, I sat in a consultant's room to be told that the good news is you don't have cancer. And I went, oh my God, I hadn't even thought of cancer. And come December, the first week of December, I was physically exhausted. It was a stage where I'd have to get out of bed, go to work, come home, go back into bed, have an hour's sleep before I could do anything in the evening. And this was like getting worse, debilitating, basically. So I woke up one morning and I looked in the mirror and I thought I looked a bit jaundiced, but I wasn't taking much notice of it. I was just saying, what's the way this, the light is in the window. So I went to work, came home, and the following day, yes, I noticed I was very yellow. And I attended my GP and they thought that I might have a blocked bile duct. So I got referred to the hospital for another scan. And on the 7th of December 2018, I got a diagnosis at 10:45 that night of pancreatic cancer. Um, it's a lot to, to, to take in over a relatively short space of time, um. When did you, when did you first hear As part of that journey, the term cancer cachexia, and what did it mean to you at the time? I probably never heard it on my journey. It was afterwards, I was trying to figure out what is the term. I kind of, uh, liked looking into bits of research and things like that. And I was checking to see, um, muscle wastage, and that's when I came across cacaxia. I had heard of sarcopenia in the hospital, um, different at various stages, but that didn't register with me either. It wasn't until I went searching myself that I found out what I had had was cacaxia. Wow, OK, so you had not heard the term as part of that, that journey. When, when, from, from, from your perspective, how did, how did Pexia first show up in your journey? I think I never looked like a cancer patient when I was having my treatment, and I ended up having chemotherapy and radiotherapy, and I still looked like myself in the mirror, bar having no hair, but that didn't bother me. And it wasn't until after I had my whipple surgery, and in the space of, I think it was 7 or 8 weeks, I had lost 7.5 stone. Which is massive weight loss. And I was able to put my hand, join my hands together and put them around my thigh, and I still have plenty of room left over. I was someone who was always overweight and was paying a tenner every week to be told, you need, you, you know, after putting on 4 lbs or 5 lbs and that kind of a way, I'd have been that person. But then I had to go and see a dietitian about trying to put on weight. And I told her straight out, the first day, I never in my life expected to be sitting in front of a dietitian to put on weight, but it was severe what I had, the muscle wastage and sure it impacted every part of my life. What were the, what were the biggest day to day challenges associated with weight loss, Appetite changes or fatigue? Uh, fatigue and weakness would have been major because I, every night I'd make a plan of what I was going to do the following day. My mind was 100% able and willing for everything, but unfortunately, my body was probably at 30%. So the plans I'd make the night before never came into fruition the following day. Um, I lost my independence. I needed support to just basically move around the house. I couldn't walk from my bed to my bathroom, which is like en suite, without having a walking stick or my rollator or somebody beside me walking. It was that constant fear of if I fell, who was going to help me? How was I going to get back up? Um, no appetite. And then you're at the stage where you're constantly feeling full. You don't feel like you're hungry. So that's a knock-on effect then as well, because I'm looking at food and it's been brought to me to eat it, but there was just no willingness on my behalf to eat what was being given to me. And do you mind telling us a little bit about what kind of support you received from healthcare professionals when cachexia began to appear? And it was a referral from the dietitian in my community because the hospitals, I was attending 3 hospitals where I live, and it's about a 2 hour drive to the hospital. So they referred me to um a dietitian in my community. So I had to see that person about trying to put on weight and, um, ways, you know, she gave me a list of things to do and Well you're not physically able, you're not going to do them. And there was no follow-up to make sure that I was doing what was, I was being told to do. So, I found a big gap, kind of, when you're going through your treatment, you know, everything is planned out and everything is structured for you. But afterwards, there's nothing in place, um, and only for I've been referred to see them. But I wasn't, I was doing half probably of what I was told to do because I wasn't physically able, and then I had no motivation to do anything either. Before even getting to that stage, were there moments that you felt, so you, you, you've, you've mentioned that you did a lot of searching about the term cachexia. Um, were there moments you felt that it could have been recognized or addressed earlier? Yes, because I had been in the hospital quite a few times. Um, unintended long stays. I was there for 6 weeks at one time. And the dietitian was always coming to see me in the hospital and, you know, trying to give me the drinks, the calorie-laden drinks to put on weight. But I was not a sweet tooth, I had not a sweet tooth before I began this. So, those drinks I found were physically uh so off-putting for me. I said, it was like, cause I asked him one day, have you ever tasted them? And he went, no. And I went, well, you should maybe cause it felt like, you know, sugar on a spoon, but a small drop of water. It was that grainy texture I was getting, and I just physically couldn't stomach them. And I was trying to mix them into fruit smoothies. So at least I was, you know, getting some of the goodness in, but I physically could not drink it. As soon as I was drinking it, I was gagging and bringing it straight back up again. That was the only intervention to try and help me with extra calories and do things that way. And you've kind of hinted at it already in, in what you're, what you were being asked to do in, in, in order to, to kind of improve the, the situation. From your perspective, what kind of communication from doctors or nurses or other healthcare professionals was most helpful? I couldn't praise my laser nurse in the hospital enough. She was fantastic, and I felt she went up above and beyond for me. She used to come out to meet me at the door when I'd be going in with a walking stick, and you've to think I was in my 40s. I was in the prime of my health before I got this diagnosis, and your independence is taken away from you. I could not do anything by myself, and she used to come out and meet. me walk me in and, you know, tell me that I'm going to have to start introducing calorie laden foods and stuff again because I'll end up back in hospital and back being tube fed. And on the threat of my 4th time being tube fed, I was like, right, I have to do something here. And then it was, I came home and I tried to walk a bit further every day, no matter how much it was hurting me, so that at least I was trying to, you know, rebuilding the bit of muscle in my Um, legs again. And I felt each day I'd try and do a few, you know, more steps. That's the only way that I was able to change things myself cause food-wise and nutrition-wise, and sleeping-wise and everything else that's involved, there was nothing. It was me trying to move a bit more every day. That was my turning point, I think, myself. So we've talked a little bit about nutrition, we've talked a little bit about physiotherapy. How valuable is psychological care in managing. I think it's very important.