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As some of you may remember my cancer diagnosis was changed after the pathology report on the tumor to being a LCNEC stage IIIA. I have struggled finding much good information, including an oncologist who has extensive experience with large cell. So I reached out to Kristin to see if she could help. She came thru like a champ. I don't know if I will find what I am looking for or not, but I do know that I am a lot closer to finding it than before Kristin sent me a couple of great resources to check out. Regardless of the results, I just wanted to recognize your effort Kristin. I owe you a beer...😁 Peace Tom
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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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Do you want to learn how to become an empowered, informed lung cancer advocate? Join LUNGevity Wednesday, February 7, for a Twitter Chat about Caregiver Advocacy. Join or follow the conversation using the hashtag #LCCaregiver. Lung Cancer Caregiver chats are hosted the first Wednesday of every month from 8:00PM - 9:00PM ET.
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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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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 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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I'm a three and a half year survivor of Stage 2 Adenocarcinoma. I wanted to pay forward some of the great support and advice I received from others when I was first diagnosed and wrote a book about getting diagnosed, having my left upper lung removed, going through chemotherapy, losing my hair, and all the various points along the way. I included some terminology since I had no idea how to speak cancer as well as some resources - most of which I learned about after I was done and was researching for the book. Kirkus did a review of the book, (The Cancer Card, Dealing with a Diagnosis) and says: 'Reflective, upbeat, and hopeful; offers honest insight into the real trials and tribulations of a cancer patient as well as valuable advice for those facing treatment.' Here's a link if you have an interest: https://www.amazon.com/Cancer-Card-Dealing-Diagnosis-ebook/dp/B01LX8RIK1/ref=sr_1_1?ie=UTF8&qid=1476363189&sr=8-1&keywords=the+cancer+card+karen+van+de+water Please let me know if I can be of any help at all to anyone going through - it's a lot. I want to help if I can. All my best - Karen-
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