Coping with Lung Cancer/Patient Perspective

Transcript

• 00:00He.
• 00:05OK, so Haley is our social worker. Hopefully you guys have had a chance to interact with Haley. I just want to put in a plug for our support group, I've said many times our support group is really the Crown jewel of the program and the threats can cology program. And it is what we put into it. So if you or somebody that you that you know, or care about as lung cancer. I really encourage you to be involved in our support group.
• 00:36And if there's ways to make it better let Haley are I know 'cause I think it's a critical part of our program.
• 00:44So Emily are you going to, she's so Haley cannot be here her children are not feeling well so.
• 00:53I Emily is going to step in.
• 00:57OK, thank you.
• 00:59So we're going to do a brief session on coping with cancer and kind of what that means and I think more than anything else talking about patients from a patient perspective is really important. So we actually have one of our patients that volunteered to talk about her experience a little bit with you and so will start off the session with that and so invite Don to come down.
• 01:25And and give a little bit of that perspective and then I'll fill in with some of the information in terms of what we really work on and focus on with patients here it's Milo.
• 01:36So thank you. Thank you thank you.
• 01:46Pretty evening, I'm done, I'm actually a two time lung cancer survivor an over 10 years ago, I was not living in Connecticut. I wasn't in New Haven. I was in the Boston area and they found my lung cancer by accident. I had a cold. Everyone said it's the Monia. They did the X Ray and the doctor came in and he said to me.
• 02:12You don't have no monia.
• 02:15But I am seeing uhm what I believe is cancer and I went through treatment cancer free moved back to New Haven.
• 02:25And it was recommended that I see Doctor Guettinger and so I began. My annual cat scan visits to see Doctor Guettinger. One of the first few times. I saw him he said to Maine. We're shooting for that 5 year. Mark that 5 year. Mark is what we want to achieve so I counted my years and I got to the 5th year and I walked in and he came in, he said. Everything looks great. I said, Do we break up now and he goes dawn?
• 02:55We never break up.
• 02:58Um, I'm glad we didn't.
• 03:01Because we found cancer again. It was a different cancer, but again in the long and that was in July of 2018.
• 03:13At that time I got involved with the lung Cancer Support group.
• 03:20And.
• 03:21It was one of the best choices I've made.
• 03:25The lung Cancer Support group is a group of people. We meet the 1st and 3rd Tuesdays of the month and it's a place where you can go and you can talk about your disease.
• 03:38And it's OK to cry when you hear those words you have cancer.
• 03:45Everything changes everything changes.
• 03:51You can throw a pity party. We have pity parties often at our lung Cancer Support group. We talk about the uncertainty of cancer? Is it going to show up? What are the chances it's coming back and just living with that uncertainty day today?
• 04:10We talk about scan ritis that annual scan skin. I dishan we all get it.
• 04:19We talk about the resources available at smile. Oh, and also in the greater community and there are so many resources at smile. I think that's one of the ways we're very lucky.
• 04:33And we talk about the agony of choosing between longevity and quality of life.
• 04:44But the one thing that I've taken from this group is I sat in that room with some of the most courageous people I've ever met.
• 04:55And their courage has inspired me to get up each day.
• 05:01And to do the best that I can.
• 05:06It's just a very wonderful wonderful group of people today I'm a cancer survivor.
• 05:14And I see so many of my friends here.
• 05:19Today we are survivors.
• 05:21And I am so happy to have an opportunity to thank you and all of you professionals from smile Oh.
• 05:30You are an exceptional team. I don't care if you're in the Top 20 in my mind, you are the Top you are the best and it's not just.
• 05:41Your professional qualifications that you bring each day. It's your person your Personhood. I think Leo Biscaya talks about Personhood.
• 05:53And there isn't a person that's on my team that I don't.
• 05:59Cherish I have an awesome team. I'm standing here today cancer free so.
• 06:11Thank you smile, Oh thanks so much.
• 06:18That's a little bit of a tough act to follow but thank you so much for sharing that and a little little insight into your experience going through this.
• 06:34So as we think about coping with cancer. I think it's important to recognize people really will cope with cancer in very different ways. And it's going to be an individual process for each and every patient going through this and even different strategies throughout the course of the process from diagnosis to treatment and then survivorship sort of end beyond I think it's critical for people as you as you go through the process to really think about maintaining what's important to you. Whether that's relationships different activities that you enjoy participating in.
• 07:05Hobbies and if possible, and meaningful continuing to work and we really try and support that as much as possible for those patients that want to keep working through their treatment.
• 07:16And I think as as Don mentioned really trying to shift the focus and I think everybody. That's diagnosed with cancer is a survivor. You're living with your cancer regardless of where you are in this journey and we really want to help you if we can identify and figure out ways to live life to the fullest and maintain the best possible quality of life as you go through the whole spectrum of what it means to have a cancer diagnosis.
• 07:45One critical thing that I think is important because when you hear you have cancer is you automatically feel out of control and figuring out ways that you can regain that control and feel like you're not just kind of lost in this onslaught of appointment after appointment and scans and biopsies and meetings with different positions, but really learning about the diagnosis and treatment. If you want to you know for some people that's a component of taking back control, not everybody wants to know everything possible.
• 08:15You know about their diagnosis, but taking an active role in your treatment planning sharing with the team taking care of you? What's really important. You are there certain days of the week that are better for you to come into treatment? Are you trying to work treatment appointments around to work schedule or around family commitments, maybe, as a patient you're not driving but when's a family member available to drive you?
• 08:40Um and as you focus on what you can control remembering that it's normal to feel sad stressed uncertain. I mean, the anxiety and depression are real and sort of admitting those and working through those feelings with whether it's friends, relatives. You know talking to a counselor a social worker. If you don't want to feel like you're burdening family members with some of the emotions talking to trusted religious figures or even doing more private mechanisms like art therapy, drawing or keeping a private Journal.
• 09:12Just ways to kind of let those emotions be processed and get them out of you because if you can move through some of those negative emotions. It really will free up enerji to be able to focus on important sort of positive aspects of life as you go forward.
• 09:27I think it's also really critical to remember take care of yourself and put yourself first you're sort of the Nexus of this whole operation as the patient.
• 09:41And it's OK to say. No, you know, everybody has stresses and demands on them. But this is a big deal, and you know sort of make this journey? What you want trying to carve out time every day to do something that's important to you.
• 09:58I think maintaining relationships outside of cancer. It's really easy when you have a circle of friends and family that cares about you. They're calling and checking in and wanting to know well? How are things going kind of what's the latest news but really trying hard to not have cancer be the center of every conversation because it gets really easy when everybody is calling and once that update before you know it. All you're doing is talking about cancer and trying to kind of shift that focus and you know, maybe a brief word or 2 and then but what's going on with you and let's you know, let's talk about something else.
• 10:30Certainly exercise is beneficial there's plenty of research that shows as you go through cancer treatment. Exercise has multiple different benefits so as long as you have the energy and there's not sort of a physical limitation. That's certainly something that's recommended for physical and mental benefits and don't be afraid to ask for help. You know whether that's for us from friends or family really trying to kind of create the circle of support where if coming to support group is the right thing for you.
• 11:02Finding that safe place to share your fears in your hopes and really celebrate the triumphs as you go through treatment as well.
• 11:12And I think it's really important also to recognize the importance of caregivers because for every patient. There is generally a village of caregivers around them and sometimes a lot of that strain and stress. Does fall to one person and recognizing sort of. It is a big commitment and caregivers typically aren't trained for that caregiver role. So it's a whole new world for them. Just as much as it is for the patient, but these caregivers really are a lifeline for patients.
• 11:43And we have a lot of resources to help so don't be afraid to reach out, both if patient needs assistance or for caregivers that were here and can kind of help help offer some guidance to support really this whole village and family around the patient.
• 12:01And then you know looking at it from a more granular level. There are really day-to-day challenges of going through this cancer process. Getting to accepting the diagnosis is nonlinear. It's you know, there's going to be good days. There's going to be bad days, and it's OK to have some bad days, and not every day. He has to be Mister and Mrs positive. I'm going to beat. This left those negative emotions kind of washed through you and process them and work through this.
• 12:32Constant adaptive process, sometimes it's isolating you know, nobody else is walking in your shoes as the patient diagnosed with cancer and that's a hard thing.
• 12:43I think another really hard thing is there is still a fair amount of stigma associated with lung cancer diagnosis. There's still this feeling that well if you smoked. You kind of did this to yourself and like doctor doctor doctor deck was just mentioning that may not really be true and we certainly see patients that have certain targetable mutations that may have had some early smoking history. You know years ago. But when we find these mutations. We really have a pretty good confidence level that they're smoking had nothing to do with the lung cancer that they got diagnosed with.
• 13:15Down the road.
• 13:16Hum.
• 13:18Other changes include coping with physical and cognitive challenges. I think chemo brain really is real and can cause some lasting deficits. That's hard for patients to deal with, and kind of work into their daily life.
• 13:32Um certainly with this caregiver and patient relationship. There can be rules changes an role strain often you know children are caring for patients and that flip of who's really the caregiver can be difficult. and I think you know financial and insurance concerns, adding another layer of stress that we want to give everybody the best treatment possible but it does come at a cost and thinking about and recognizing What is this?
• 14:04Financial toxicity that we have that can be associated with treatment and be up front with your caregivers. You know, we have mechanisms to support that, but we don't know what you're getting billed so if there are challenges or issues with with the financial peace absolutely bring them to us discuss it in clinic and we can put into place a bunch of different supports when needed.
• 14:29And in many cases, you know, Don mentioned really you know.
• 14:37Having a positive way of positive experience in going to support group and meeting some of the people and I think I'm constantly amazed by the grace of patients coming in you know going through treatment fighting. This fight everyday but cancer really does help sort of distilled down? What is important you know what are the most critical things that are meaningful to us in our lives and as much as possible remaining positive that's not always an easy thing.
• 15:08But having goals staying engaged in in things that you enjoy doing responsive. You know, recognizing and identifying really what is your authentic self? What is important to you? What do you want to accomplish in in the course of your life?
• 15:27And then recognizing the limitations of life. We all you know are at some point, not going to be here. Unfortunately, but how do we transcend that limitation and how? Can we make? Whatever time we have left have the most sort of quality and importance that we can give it.
• 15:47So there's a whole bunch of layers of support that we offer through through smilow programs. There's meaning centered and either group or individual psychotherapy available certainly are lung Cancer Support group is a great Ave for many of our patients. We also have a caregiver support group that's available.
• 16:10And in terms of symptom control. We have nutritionists that are available to meet with patients. The Integrative Medicine Clinic is really growing and kind of gaining steam to be able to provide some of the more complementary and alternative. Medison peace to our patients. We have a pact program for parents with young children who are learning to sort of cope with the diagnosis and changes that go with cancer. The palliative care group certainly is fantastic in terms of.
• 16:41Improving quality of life, helping us to manage symptoms. They specialize in pain management and they also have an interdisciplinary team of Physicians nurse practitioners, a social worker, Chaplin and psychologists so another really nice layer of support that we can add in.
• 16:58Miss survivorship clinic has been fantastic. I think now we thankfully are having really great treatments and we're getting more and more patients. Even with the stage 4 lung cancer diagnosis out beyond that, 5 year mark where you know what do we call it? Are you in remission? Is it potentially you know there's the C word for cancer. But there's also the C word for cure and once we get you past that plane. You know what do we call it and it creates almost this existential crisis in patients where it's like?
• 17:30Well, I have stage 4 lung cancer. I'm out 5 years. What do I do now, um and how do you kind of rap your head around that it's great news but it's still anxiety, provoking 'cause you're waiting for the other shoe to drop and when am I going to get the bad news so working with those survivorship clinic thinking about you know are there. Other medical things that should be done in terms of ongoing preventive care that maybe aren't as important when you're newly diagnosed but you get out 5 years and there are different things that we need to evaluate.
• 18:02Um we mentioned earlier smoking cessation services also are really important as you go through the treatment journey for those who still are smoking.
• 18:14Uhm and then just a list of other community resources certainly for going to the Internet and looking for information, making sure you're going to reputable websites American Cancer Society American Lung Association. There's online support groups patient advocacy foundations. Various research initiatives couple of things for patients to live strong program is run through the why and can really help with focused exercise patients for cancer patients and survivors looking to improve.
• 18:44Their functional status, those resources for children for of patients with cancer. Various avenues for financial grants and also just a plug for visiting nursing can support services or people will actually come into your home and help monitor you as you go through treatment and really partner with us in clinic to make sure that we're giving you the best care that we can.
• 19:07So with that I'll stop and take take a minute or 2 for any questions and then.