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Hello! I'm Ellen, I'm 40 years old and I was diagnosed with stage 4 adenocarcinoma of the right lung just a week ago. It was discovered when I went to hospital with severe upper right abdominal pain. It's still not clear what caused it, and it never came back, but it put me on the road to my diagnosis. I'm free of symptoms at the moment, so it's very surreal. Waiting for molecular testing to be done so I can get a treatment plan. I have young children and I'm very scared.
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There are so many ways to connect and learn virtually this week! Virtual meetups for people living with lung cancer and caregivers. A virtual coffeehouse and a Facebook Live. Sign up for the Tuesday, Wednesday and Thursday meetups here: https://www.lungevity.org/for-patients-caregivers/support-services/virtual-meetups Virtual Coffeehouse this Wednesday: https://smithcenter.org/programs-retreat/coffee-house-lungevity-04-26/ Facebook Live this Wednesday: https://www.facebook.com/events/1579733965850101
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"Hindsight is 20/20!" "You know, in retrospect..." "Looking back now, I'd..." "If I had it all to do over again..." "If I had known then what I know now..." Chances are, if you're a caregiver, you're guilty of saying at least one of these catchphrases at least a little bit often. I know I am. A LOT a bit often! Why is that? Why is it that we never feel prepared to be a caregiver, and always feel like a little of our well-earned wisdom would have been useful at the beginning of our experience? Here's what I think: our loved one's diagnosis knocks us for a loop; we stumble, we grasp, we stand back up, we take action, and then we can usually coast for a while--and occasionally, the cycle repeats. But: we were never given a chance to study for this test. We weren't given a warning. We catch the curveball using the only skill sets we already have, and we run with it. Stumble: What the **** just happened? Where do we go from here? Grasp: Get our heads back in focus, get info, get a plan. Stand back up: We go through our days--every day--as best we can. Somehow, stuff gets done. If it doesn't, we move on. Take action: Take the info we found and start acting on the plan: a testing plan, a treatment plan, a scheduling plan, a support plan, any plan. Coast: The plans in place gradually become blessedly routine. The less work we have to do to establish the plans as the plans settle, the more surprised we are that our days do still revolve--but they just revolve around something we never would have expected. (This is sometimes referred to as the "new normal.") Any caregiver is familiar with this basic framework. But: Finding the way that this paradigm can shift and meld onto any particular family, situation, or lifestyle? There's the rub. That's the part that's not so simple. The GOOD news is: that's the part where other caregivers are the best and most helpful resource. What calendaring app do you use? What foods help with nausea? What do you say to your kids? How do you organize medical information? Which chores should I prioritize? How can I draw boundaries with my family? How can I ask my friends for the support I need? How can I communicate better with my loved one's medical team? Where can I go for reliable supplemental information? How do I find self-care time? And, by the way, what IS self-care? At the end of the day, one thing is patently obvious: with most new life experiences, you may not even know what resource/help/knowledge you need (or needed!) until you are well on your way. Caregiving is a prime example. To that end: the best and most helpful source--the reference with the breadth and depth of life experience to draw upon--are your fellow caregivers. LUNGevity has TONS of ways to connect with a network of folks with similar experiences. Just to name a few: the LUNGevity Caregivers Facebook group (http://facebook.com/groups/1009865522379898), the LifeLine mentorship program (http://lungevity.org/for-patients-caregivers/support-services/peer-to-peer-mentoring), and the Caregivers message boards here on the Lung Cancer Support Community (http://lungevity.org/for-patients-caregivers/support-services/lung-cancer-support-community). (Not to mention the Caregiver materials library at http://lungevity.org/for-patients-caregivers/caregiver-resource-center). Also: LUNGevity hosts the only regular caregiver-focused Twitter chat in the lung cancer advocacy field. We meet on Twitter under the hashtag #LCCaregiver every first Wednesday of the month, starting at 8:00pm Eastern time. This is a sort of live chat room, addressing issues that caregivers want and need addressed. All are welcome! This month, we will be discussing this exact conundrum: what do you wish you had known before you became a caregiver? What can your fellow advocates (and advocacy organizations like LUNGevity) do to help you learn what you need to know at the front end? How can we help you "grasp" the info you need in order to make a smooth transition into your role, and get settled as quickly as possible in a somewhat comfortable routine? How can you be supported in your role by being given notice ahead of time of what you may need or want to know, do, or think of? How can you catch the signals ahead of other curveballs? To assist in answering these questions, and to continue this conversation, we'll be hosting a sort of "Caregiving 101" for our chat this Wednesday. Several experienced caregivers will offer their best advice--the things they wished they had known before starting their work of supporting their loved ones through a lung cancer diagnosis. Please join us to learn together; to hear from others who understand the ups and downs of what you're going through; to share your stories and your advice; and to help us understand how we can better help each other. Wednesday, June 6th, 8pmET, on Twitter, at #LCCaregiver. I can't wait to "see" you there! Thank you, my friends!
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I was first diagnosed with small cell lung cancer (SCLC) in January of 2014 from a biopsy of the tumor that was sitting on top of my left lung. I had no symptoms I was ill yet I was urged by a radiologist who was a friend of the family to get an early lung cancer detection CT scan of the chest because I had been a smoker years before and grew up in a household of heavy smokers. So for me, it came as a total shock when I was told my diagnosis and “to get into the city for treatment, ASAP. “ For the next two years, I went through the standard treatment for limited stage SCLC, -chemo, radiation to the tumor, and prophylactic radiation to my brain. Good news, the tumor had shrunk but bad news, a new one had begun to grow in my abdomen. Now there was no option left for me except to go on an immunotherapy clinical trial, which I began in June 2015. I know I’m one of the lucky ones. I’ve survived over two years thanks to being enrolled in the clinical trial with the bonus of having virtually no side effects. I first heard about LUNGevity through my oncologist when he invited me to be one of his “patient-guests” at LUNGevity’s Gala in 2016. Encouraged by the speakers and to learn about more about LUNGevity’s focus on increasing the quality of life for cancer survivors and their caregivers, I contacted Katie Brown, LUNGevity’s Vice President of Support & Survivorship, to become a volunteer. I wanted to support other SCLC patients who were probably as confused and conflicted about their choices as I was when I was first diagnosed with this less common type of lung cancer. Katie gave me information about “LifeLine”, LUNGevity’s peer-to-peer support program that matches patients and caregivers to mentors with similar diagnoses. LifeLine mentors forge a personal connection by getting to know their mentee, offering words of encouragement, and by sharing aspects of their own cancer experiences. LUNGevity connected me to my first LifeLine mentee in early 2017. When I’m on the phone with mentees, I try to get a quick take on what that individual would like to get from speaking with me. I usually keep my personal saga with SCLC brief so the mentees have a chance to tell me what’s been on their mind. Sometimes, a particular part of their cancer situation is upsetting or causing frustration, while other times, they would just like to talk it out and have me listen. If I hear we have points in common, I’ll say something like “I get it. X-Y-Z happened to me, too!” Then I reassure them that they will get though it and find the solution that’s right for them. Some mentees just want a one-time chat to know someone else has survived the same illness. Others, who don’t have anyone they feel close to, might call me more frequently. One time I called Katie to get her advice on how to handle a situation that I felt was beyond my capacity to deal with. She was very understanding and together we came up with workable solution. So if you become a LifeLine mentor, don’t be afraid to reach out to the LUNGevity staff. They’re there to support you, too. The most rewarding thing about being a mentor is hearing someone newly diagnosed with SCLC say, ”Oh I’m so glad I talked to you. I feel like this is doable now. If you survived, maybe I can too.” Hope is the most precious gift I could ever offer somebody, which may sound a bit drippy, but it’s so true. I get to offer hope every time I tell my story that I have survived longer than I, or anyone else, would’ve believed possible. Photo credit: Ben Hider for the CURE Magazine
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The Lung Cancer Support Community (LCSC) is the largest online lung cancer support network with over 11,000 members. LCSC members are people living with lung cancer, caregivers, medical and health professionals, and advocates, who are unified in our common goal to improve survivorship. Users can safely share information on LCSC. Member-generated usernames help keep information private and for those who wish, remain anonymous. Forum moderators help to maintain the integrity of the site, assisting new members, and participating in discussions to offer peer to peer support. Anyone may read the forums, but you must register and be logged in to post. Overview of Features Forums and Discussion Boards There are 27 forums with topics ranging from Survivor Stories to News and Advocacy to Living Well with lung cancer. Each forum has multiple discussion boards where you can post questions and thoughts that you’d like to share with the community. Or you can weigh in on discussions that other members have posted about topics that are relevant and interesting to you. If you’ve just joined LCSC, introduce yourself in the Welcome New Members forum. Tell us a bit about yourself and your motivation for joining the community. If you are someone living with cancer, tell us as much as you’re comfortable sharing about your diagnosis and prognosis. Many of the other survivors who are members have been in similar situations. While no two journeys are the same, it can be very helpful to connect with someone who has been on a similar path. And you’ll find that an online support system can be very empowering and uplifting! Blogs In this section, users can create personal blogs to tell personal stories, share news, and give commentary on current lung cancer topics. If you enjoy a particular blog, you can follow it by clicking the Follow button in the top right corner of the page. Photo Galleries In this section, users can create personal or shared photo galleries. Let people know a bit more about your life by sharing photos of the people, places, and things that are important to you. Chat If you need someone to talk to or want to make a new connection, click on the Chat tab on the top menu bar. On the right hand side of the page, you’ll see a list of users who are currently logged in and ready to chat! Calendar The Calendar section shows which members are celebrating birthdays as well as upcoming lung cancer events. Whether you’re looking for a support, advocacy, or fundraising event, you’ll find all of the important information here. We are glad that you’ve joined LCSC and look forward to getting to know you!
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We are excited to announce that BridgetO will be a new LCSC Moderator of the Introduce Yourself and NSCLC forums. BridgetO is a survivor from Portland, OR. She joined LCSC in December 2016 after being diagnosed with lung adenocarcinoma, grade 1, stage 1a, with a KRAS mutation. BridgetO is an invaluable member of this community, and we look forward to seeing her shine in her new role as Moderator!
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Hello, my dear friends! I. Have. Missed. You! It is so tempting, in my relationship with caregiving, to take on blame. Blame myself for this or that. Plans didn’t go off accordingly? It’s my fault. Time got away from me without my control? Oh, that’s my fault, too. Sign me up! Since my last post, our “best laid plans” were thrown out the window. Forcefully. To be totally real with you, my friends, I had wanted so badly to post about ALL THE HOPE in May. I wanted to fill your inboxes with notifications that there was a new post here every day. I wanted to fill your “Caregiver Quiver” (ooooh, I like that, I’m gonna use that!) with so many HOPE arrows that you would have a weapon to combat every moment of hopelessness. After all, May was Lung Cancer Hope Month (thanks to LUNGevity!). That’s huge. For a diagnosis that used to be like a flipped hourglass, any dose of HOPE can make the difference between having or losing the will to fight. We who spend every day in the LC community know there is SO MUCH HOPE, and yet Society At Large still sees the hourglass. So: I had wanted so badly to fill your May with links and resources and information on the newest and best stories and breakthroughs and answers. That was my “best laid plan.” But then, my dad ended up in the hospital for the entire month of May. My mom is my LC patient, but my dad has his own chronic health issues that require frequent hospital stays. You know the darndest thing about hospital stays? They aren’t always marked out in my day-planner! Shoot. Go figure! So. There went May. And I have been tossing and turning and being grumpy and angsty about letting you guys down. I went and pulled the tweets from our last #LCCaregiver twitter chat, when we talked about HOPE and how we could spread hope and share hope and how we as caregivers could encourage our loved ones to have ALL THE HOPE. I was in a real funk, guys. I really felt like I had lost the chance to really make Lung Cancer Hope Month “count.” Then, it hit me… Do you remember what we talked about in that chat? Because I do, and I will NEVER, ever forget it. We talked about HOPE, and sources of hope, and we said: this community is our source of hope. This group of souls going through the same thing is our source of hope. We feel hopeful by being there for each other, thick and thin. And my angsty funk? My trying to stick to plans? That was all making me feel hopeLESS. I was acting and talking like a person who felt hopeLESS. No more. I reject that trap. You are my family, and I am yours. I don’t need deadlines and set schedules to be there for you, and you don’t need that to be there for me! The most relieved I have felt along this entire walk with lung cancer have been the times when I let go of trying to keep to an ironclad schedule, and have instead followed my gut and allowed myself to really be present in the current moment and what the moment needed. I want to be present for you, and I know you are present for me. We are all in this together. Now, don’t get me wrong: I DO want to catch up and write some posts about ASCO (the major oncology conference that just took place in Chicago); about recent drug approvals; about ways caregivers can find peace. And I will. But I also know I won’t be letting you down. Let’s chat! TONIGHT (Wednesday) at 8pm ET, let’s chat about the support network you keep around you. Let’s talk about what you need, where you feel most confident and least confident, and what you can do to help your support system help YOU. This is an ongoing conversation, believe me; let’s all grab our tea and put on our slippers and come together to follow #LCCaregiver tonight. Questions are below. I hope to “see” you there! Bring a friend; all are welcome. Love always, Danielle #LCCaregiver Twitter chat, tonight (Wednesday) at 8:00PM ET. Follow #LCCaregiver on Twitter to participate! T1: Who do you consider your “support system?” T2: What are the strengths in your support system? T3: What are the gaps or weaknesses in your support system? T4: What has been the hardest thing to ask someone? What kind of help is hard to find? T5: Would you rather people ask what you need, or just volunteer specific help? T6: What resources or tools would you like to have in your Caregiver Quiver? (sorry, can’t help it, I really love that phrase now) (If you’ve never used the LUNGevity Navigator App, just wait: I’ll tell you about it tonight!) T7: Are there local resources for caregivers where you live? What local resources would be cool to create? T8: What can the nonprofit orgs like LUNGevity do for you? (have you checked out LUNGevity’s awesome caregiver resource center?!) T9: What can your fellow caregivers best do to support you from afar?
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Hi everyone, I'm Jessica Meeks and, in December 2012, my mother died due to lung cancer. I've recently (about a year and a half ago) started volunteering for LUNGevity and am interested to know if anyone in the Atlanta, GA area would like to form a support group for caregivers and family members, particularly those who have lost someone to lung cancer. If anyone is interested, please let me know as I would love to get a group together to help us all get through some rough times! Thanks for reading! -
I was diagnosed with lung cancer in August of 2011 out of the blue, totally unexpected. I went for a regular checkup after experiencing some gastric reflux and abdominal pain. The doctor suggested an abdominal CT scan. He called me back into his office and told me that, although the scan was of my abdomen, a part of my lung had been included. A little shadow had shown up there that concerned him. He asked me to undergo a second CT scan, this time of my lungs. That scan revealed a prominent area of masslike consolidation in my left lower lobe. The next day I saw my pulmonologist, who scheduled me for a needle biopsy. At the time, he didn’t think that the scan findings really indicated a lung cancer. I was not concerned either, as I had never smoked and had little history of cancer in my family. I was traveling home from a visit with some friends when I got the call from the hospital. The emotional voice on the other end was cracking. I didn’t even realize that it was my pulmonologist. He said, “We got the results from your biopsy. You have a very large tumor taking up most of the left lower lobe of your lung. We have to get this right away. We’ll get through this honey.” It was surreal. I thought it was a mistake. I was diagnosed with non-small cell adenocarcinoma. They scheduled surgery right away to remove a lobe of my left lung. That was followed by chemotherapy. It was a very tough time. After I recovered from that surgery and the chemo, I just wanted to go back to my life. I’d been very happy with my life. I was a volunteer chaplain. I didn’t know any other survivors and I didn’t want to think about lung cancer anymore. They said I only had 15% chance of the cancer coming back so I wasn’t going to worry about it. A year later, the cancer came back. Looking at the scan, I felt like I was in a nightmare. The second surgery to remove the rest of my left lung was easier, because I knew what to expect. But after that surgery and treatment, I knew I needed to get plugged in and started searching online for an organization that could help. I liked that LUNGevity Foundation was constantly posting helpful information and seemed focused on survivors. Before I was diagnosed with cancer, I had enjoyed the experience of mentoring, so I applied to be a LifeLine support partner. Nikole from LUNGevity reached out and invited me to attend the HOPE Summit survivorship conference. One of my friends went with me and we had such a wonderful time. HOPE Summit changed my life. Before that time, I had been pretty isolated as a survivor. When I walked in and saw that many survivors, I was amazed and overwhelmed. Hearing others share their experiences changed my whole attitude. The main thing I came away with after HOPE Summit is “be your own advocate.” My amazing friends that I met through LUNGevity connected me with my current doctors at UT Southwest. Any time that you need support from LUNGevity, it is available. I am a LifeLine mentor to other survivors, but I also have LifeLine mentors who have helped me through two recurrences of cancer. They’ve really inspired me and kept me looking forward. Mentoring is a two-way relationship. If they’re feeling down, I can help them and if I’m feeling down, they can help me. It is so rewarding. I’m also a LUNGevity Social Media Ambassador. I’m a big believer in the power of connection. If we isolate ourselves, we focus more on the negatives and everything that’s wrong. But if you’re out there connecting with other survivors, you’re sharing the ups and the downs, you’re not alone. It really helps. The advice I like to share with other people who have lung cancer is if you don’t like what one doctor says, it’s very important to be your own advocate. It’s your life!
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We all know that when someone receives a lung cancer diagnosis, it can be overwhelming. LUNGevity designed the Lung Cancer Navigator app is to empower patients and make understanding and living with lung cancer less daunting and considerably more manageable. The Lung Cancer Navigator mobile app puts your entire support network in the palm of your hand. It helps you understand your diagnosis and provides tools and forums for asking questions, detailing symptoms, and managing medications. The app is a great way to communicate with your healthcare providers and to request support from friends and family. Follow these easy steps to get started! WATCH the introductory video for a quick demonstration of how the Lung Cancer Navigator works. DOWNLOAD the free LUNGevity Lung Cancer Navigator from Google Play or the Apple App Store. VIEW these step-by-step instructions to set up your app. TELL US what you think! We’re eager to know what you find most beneficial and how we can make the Lung Cancer Navigator even more helpful in the future.
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LUNGevity Foundation Partners With CancerCare to Launch Lung Cancer HELPLine Free Service Addresses Emotional, Practical, and Information Needs of Lung Cancer Patients FOR IMMEDIATE RELEASE Media Contact: Amanda Greenfield amanda.greenfield@kingcompr.com 212-561-7430 WASHINGTON, DC (January 19, 2017) – LUNGevity, the nation’s leading lung cancer-focused nonprofit organization, today announced the launch of the LUNGevity Lung Cancer HELPLine, a free phone service through which a team of professional oncology social workers will be available to address the emotional, practical, and information needs of people diagnosed with lung cancer, their families, and caregivers. This year, more than 240,000 people in the U.S. will be diagnosed with lung cancer, which means that hundreds of thousands of lung cancer patients, family members, and caregivers will be responsible for navigating a disease that is likely unfamiliar to them. The LUNGevity Lung Cancer HELPLine will serve as a vital resource and source of support for all affected by the disease. LUNGevity has partnered with CancerCare®, the leading national organization providing free, professional support services and information to help people manage the emotional, practical, and financial challenges of cancer. CancerCare’s team of professional oncology social workers are uniquely qualified to address these needs. For nearly 73 years, CancerCare has provided free support services to cancer patients aimed at alleviating distress, helping them to obtain the best possible outcomes from their treatment. Those seeking assistance can call LUNGevity’s new toll-free HELPLine, 844-360-LUNG (5864), from 9:00am – 5:00pm ET, Monday through Friday to: Receive immediate access to reliable educational resources and programs Get personalized information about lung cancer and treatment options Learn effective ways to cope with cancer including managing emotions such as depression, anxiety, or sadness Improve communication with their health care team and loved ones Get referrals to financial assistance resources for needs including pain medication, homecare, childcare, medical supplies, transportation for treatment, and copayment assistance related to chemotherapy and targeted treatment therapies. (Provided to those who meet CancerCare’s eligibility guidelines; subject to funding availability.) Depression, anxiety, strains on relationships, loss of motivation, and financial burdens are commonly experienced by lung cancer patients and can compromise a patient’s ability to complete treatment. LUNGevity developed the Lung Cancer HELPLine to help patients, their caregivers, and families combat these symptoms by offering direct and personalized support for callers across the nation. “Providing lung cancer patients, their families, and caregivers with the resources and tools they need to address every phase of this disease is a priority,” said Andrea Ferris, President and Chairman of LUNGevity Foundation. “Our goal in setting up this HELPLine is to add dimension to these efforts and provide an additional resource to individuals affected by lung cancer to ensure that no one has to navigate this disease alone.” The HELPLine will join a number of other critical resources LUNGevity has created to support the needs of lung cancer patients, their caregivers, and loved ones, including Clinical Trial Finder, LifeLine Support Partners, and the recently launched Lung Cancer Navigator Mobile App. Charitable funding for the HELPLine was generously provided by Bristol-Myers Squibb Company and Genentech. For more information on LUNGevity, please visit www.LUNGevity.org. Click here to read the full press release. -
LUNGEVITY FOUNDATION INTRODUCES A NEW MOBILE APP TO HELP PATIENTS UNDERSTAND AND MANAGE LIFE WITH LUNG CANCER Lung Cancer Navigator is a Customized Communication Hub that Puts Education, Care Management and Personal Support in the Palm of Your Hand PR Newswire, WASHINGTON, DC (January 11, 2017) Click here to view the multimedia press release. LUNGevity, the nation’s leading lung cancer-focused nonprofit organization today launched a new mobile application designed to make understanding and living with lung cancer less daunting and considerably more manageable. The new Lung Cancer Navigator mobile app provides lung cancer patients with access to the latest medical and treatment information related to their specific lung cancer diagnosis, and serves as a convenient hub for organizing customized care and support networks, asking questions, describing and tracking symptoms, and managing multiple medications. Lung cancer is the second most commonly diagnosed cancer worldwide, with more than 1.8 million new cases diagnosed each year. The LUNGevity Lung Cancer Navigator app provides tools and forums to help those coping with the disease (including caregivers and support network members) communicate important details in real time, while handling care management needs with efficiency, medical guidance and less stress. “When someone receives a lung cancer diagnosis, it can be overwhelming,” said Andrea Ferris, President of LUNGevity Foundation. “Our goal with the LUNGevity Lung Cancer Navigator app is to empower patients and provide them with a forum for connecting to customized information and a support community that helps them navigate life with understanding and much less fear.” While lung cancer can affect anyone regardless of gender or ethnicity, only 18% of people diagnosed with the disease survive five years or more. LUNGevity Foundation strives to change outcomes for people living with lung cancer through research, education, support and advocacy. Through the LUNGevity Lung Cancer Navigator app, LUNGevity Foundation aims to provide patients and caregivers with a greater sense of empowerment, understanding and improved management of personal diagnostic, treatment and appointment information. The LUNGevity Lung Cancer Navigator was developed through an educational grant from Bristol-Myers Squibb. LUNGevity’s Lung Cancer Navigator Mobile App is available as a free download on iOS and Android devices. For more information and to view a demonstration video, visit https://www.lungevity.org/. About Lung Cancer: 1 in 15 Americans will be diagnosed with lung cancer in their lifetime More than 224,000 people in the U.S. will be diagnosed with lung cancer this year About 60% of all new lung cancer diagnoses are among people who have never smoked or are former smokers Lung cancer kills more people than the next three cancers (colorectal, breast, and pancreatic) combined Only 18% of all people diagnosed with lung cancer will survive 5 years or more, BUT if it's caught before it spreads, the chance for 5-year survival improves dramatically About LUNGevity Foundation: LUNGevity Foundation is firmly committed to making an immediate impact on increasing quality of life and survivorship of people with lung cancer by accelerating research into early detection and more effective treatments, as well as by providing community, support, and education for all those affected by the disease. Our vision is a world where no one dies of lung cancer. For more information about LUNGevity Foundation, please visit www.LUNGevity.org. ### Press Contact: Cynthia Inácio 212-561-7476 cynthia.inacio@kingcompr.com
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What Not to Say to a Cancer Patient By: Jane E. Brody What do you think is the most commonly asked question of a person who has, or has had, cancer? If you guessed, “How are you?” you got it right. But as caring as those words may seem, they are often not helpful and may even be harmful. At a celebratory family gathering a year after my own cancer treatment, a distant relative asked me just that. I answered, “I’m fine.” She then pressed, “How are you really?” “Really” I was fine, I told her. But what if I hadn’t been? Would I have wanted to launch into a description of bad medical news at what was supposed to be a fun event? Would I have wanted even to be reminded of a bout with cancer? Although my relative undoubtedly meant well, the way her concern was expressed struck me as intrusive. A diagnosis of cancer can tie the tongues of friends and family members or prompt them to utter inappropriate, albeit well-meaning, comments. Some who don’t know what to say simply avoid the cancer patient altogether, an act that can be more painful than if they said or did the wrong thing. A new book, “Loving, Supporting, and Caring for the Cancer Patient,” by a man who has been treated for a potentially life-threatening cancer and who has counseled dozens of others dealing with this disease, got me thinking about the best ways to talk with someone facing cancer — its diagnosis, treatment and aftermath. The book’s author, Stan Goldberg, happens to be a communications specialist, a professor emeritus of communicative disorders at San Francisco State University. Dr. Goldberg learned at age 57 that he had an aggressive form of prostate cancer. He said in an interview that cancer patients too often encounter people who assume the role of cheerleader, saying things like “Don’t worry about it,” “You’ll be fine,” “We’ll battle this together,” “They’ll find a cure.” However, he observed, “Words of optimism may work in the short run, but in the long run they can induce guilt if the cancer is more virulent and defeats a person’s best effort. “I was dealing with the possibility that my life would end shortly, or if it didn’t, it would be changed dramatically. False optimism devalued what was going on in my body. People were insensitive not from a lack of compassion but from not knowing what is really helpful.” What he and those he’s counseled have found to be most helpful were not words but actions, not “Let me know what I can do to help,” which places the burden on the patient, but “I’ll be bringing dinner for your family this week. What day is best for you?” As a self-described “independent cuss” reluctant to ask anyone for help, Dr. Goldberg said his son taught him this important lesson. “He came to my house during my recovery from surgery and said ‘Stop lifting those boxes, Dad. I’ll do it for you.’” Another author of very helpful books on living with cancer is Dr. Wendy Schlessel Harpham, who has had a recurring cancer for more than two decades. She suggests that people offer specific ways they can help. For example, they may say they can shop for groceries, care for children, take the dog for a run, or accompany the patient to the doctor, and then be sure to follow through with the offer. Many people now use online sites like caringbridge.org to keep people up to date on their health and needs or organizing platforms such as mealtrain.com or lotsahelpinghands.com to ask for specific help. Dr. Harpham said she came to dread the query “How are you?” because “no matter how it was intended, being asked ‘How are you?’ rattled my heightened sense of vulnerability. I found myself consoling those who asked and then fighting the contagion of grief and fear. Even when the news was good, I didn’t have the energy to include all the people who wanted updates.” Dr. Goldberg suggests that when visiting a cancer patient, people talk less and listen more. ”Often the greatest support comes from silently witnessing what a person with cancer is experiencing,” he wrote. “Sometimes only a calm presence and compassionate listening are necessary. Silence becomes the breathing space in which people living with cancer can begin difficult conversations.” In an article in Prevention magazine, Melissa Fiorenza offered this helpful suggestion for what to say to someone you deeply care for: “Feel free to cry with me, to talk, or not to talk. I’ll take my lead from you.” When talking, Dr. Goldberg suggested, “engage more in conversations and less in question-and-answer interactions.” But if questions are asked, they should be open-ended ones like “Do you want to tell me about your cancer and what you’re going through? Maybe I can find ways to be helpful.” Among the many suggested “don’ts” are these: • Don’t make light of a patient’s physical changes by saying things like “At least you finally lost those extra pounds.” • Don’t talk about other patients with similar cancers, even if they fared well — no two cancers are alike. It’s fine, though, to ask if the patient would like to talk with someone else who’s been through it. • Don’t say the patient is lucky to have one kind of cancer rather than another, which downplays what the person is going through. There’s nothing lucky about having cancer even if it’s a “good” cancer. • Don’t say “I know how you feel” because you can’t possibly know. Better to ask, “Do you want to talk about how you feel, how having cancer is affecting you?” • Don’t offer information about unproven treatments or referrals to doctors with questionable credentials. • Don’t suggest that the person’s lifestyle is to blame for the disease, even if it may have been a contributing cause. Blame is not helpful. Many factors influence cancer risk; even for lifelong smokers, getting cancer is often just bad luck. • Don’t preach to the patient about staying positive, which can induce feelings of guilt in the patient if things don’t go well. Better to say, “I’m here for you no matter what happens,” and mean it. • Don’t ask about prognosis. If the patient volunteers that information, it’s O.K. to talk further about its implications. Otherwise, it’s better to stifle your curiosity. • Don’t burden the patient with your own feelings of distress, although it’s fine to say, “I’m so sorry this happened to you.” If you feel overwhelmed by the prospect of interacting with a person with cancer, it’s better to say, “I don’t know what to say” than to say nothing at all or to avoid the person entirely, who may then feel abandoned and think you don’t care. This story was published on nytimes.com on 11/28/16. Link: http://www.nytimes.com/2016/11/28/well/live/what-not-to-say-to-a-cancer-patient.html?smid=fb-share&_r=0
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Are you a cancer patient or caregiver struggling with anxiety or depression? Are you worried that your fear, uncertainty or changes to your appearance or mobility will leave you depressed? Join the Cancer Support Community webinar, Frankly Speaking About Cancer: Coping with Anxiety and Depression on Wednesday, November 30 from 2:00pm-3:30pm ET. You will learn about ways to cope with the anxiety and depression that often accompany cancer. A psychologist and a social worker will both present information to help. The webinar features the following panelists: •Diane Robinson, PhD, UF Health Cancer Center – Orlando Health •Stacey Balkanski, LCSW, Program Director at Gilda’s Club South Florida •Shari Goldberg, Lung Cancer Survivor The webinar will be run through WebEx with a slide presentation. After the panelists’ presentations, participants will have the opportunity to ask questions through a chat feature during the Q&A session. Click here for more information or to register!
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Hi my name is Terry Gillespie. I am a 13-year lung cancer survivor. I started my lung-cancer journey back in October 2003. In the fall, I am prone to sinus infections, so as usual I got one. It just so happened this time that I let it go a little longer because I had just lost my job and had no insurance. When it got so bad and I coughed so hard that I had a little blood in my sputum, I called the doctor and made an appointment. My doctor prescribed the usual antibiotics, and when I mentioned that this sinus infection was worse than normal, and that I must have hurt my throat coughing because I saw a little amount of blood. She said that she was concerned that I may have pneumonia or TB, so decided to run tests. That was when my world turned upside down. At that time, there was very little information about lung cancer treatments and very grim survival rates. I had very little support. After my biopsy, it was confirmed that it was cancer. I told the doctors that I did not want to know what they thought my end date would be. I was going to die at the ripe old age of 80, in my sleep. So on we went with the treatment with no mention of a termination date. I had my left lung removed, and then I had radiation and chemotherapy. I was bald and beautiful. I also had some pretty bad side effects. During surgery, my surgeon accidentally hit my right vocal chord and I was without a voice for two years. Let me tell you, I can now hit my target directly when I throw things to get attention! I have permanent sciatica on my left side. I am one of the lucky lung cancer survivors and I have not had a recurrence. People tell me that I look great for having lung cancer. It makes me wonder . . . What do people think that cancer survivors look like? The reality is that many lung cancer patients are not so lucky. I chose to be an advocate for lung cancer awareness as soon as I physically and mentally was able. I decided that I can help make a difference. My motto was “Nobody Deserves to Die from Lung Cancer.” I still believe that today. We have to do whatever we can to raise awareness, to educate people that this is NOT only a smoker’s disease, and to raise money for research to help eliminate lung cancer. (Terry, right, pictured with fellow survivor and friend Tommieanne Bolden, at National HOPE Summit)
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Your bone metastasis story can make a difference! If you or a loved one has bone metastasis, sharing your experience can help others. Learn more about the Voices of Experience volunteer network by calling 1-855-894-4352 or info@voicesofexperience.net
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Hi all, We have a 77 year old female looking for someone to talk to who has been diagnosed with SCLC. She does not mind if the support mentor is male or female. She just needs some support and encouragement from someone with the same diagnosis. Please let me know if you are willing to offer her an ear to listen. Thank you in advance. Best Regards, Nikole Support and Advocacy Coordinator nventrca@lungevity.org
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We are only weeks away from the LUNGevity Columbus, Ohio HOPE Summit! You will not want to miss this amazing opportunity. Please share this! www.lungevity.org/columbushope (The summit is free, however registration is required.)
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Help invite people to learn about LUNGevity by taking brochures with you next time you are in a place where other people who have been affected by lung cancer would benefit from them. The brochures have information about LifeLine - A peer to peer support program, advocacy opportunities, information about HOPE Summits, and more! http://www.lungevity.org/about-us/request-materials
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MAY 1-3, 2015 Our National HOPE Summit takes place the first week of May, Lung Cancer HOPE Month. The goal of the weekend is to provide a summit for survivors with educational sessions covering topics like research, immunotherapy, ask the oncologist, pulmonary rehabilitation, communicating with your caregivers, managing your medical team, living with lung cancer, nutrition, writing and blogging, becoming an empowered advocate, and sharing lung cancer survivor stories. This 2½ days of celebrating lung cancer survivorship is an experience you won't want to miss. http://lungevity.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=534
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LifeLine Partners can be a vital part of a newly diagnosed patient's support system and can help navigate through the logistics and emotions of a lung cancer diagnosis. Are you ready to INSPIRE someone with your story? Become a LifeLine Mentor today. http://lungevity.org/support-survivorship/get-connected/lungevity-lifeline
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LifeLine support mentors meeting for the first time. Watch this video to see the importance of support for people diagnosed with lung cancer.
