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  1. Advocates are courageous and brave as they raise awareness or work tirelessly to change injustices and create a better world. Most people become advocates because they were personally affected by the cause they are fighting for. While they have smiles on their faces and work to inspire...there's a part of their hearts that are always grieving for the love they lost or the life that once was. At least thats true for me- even after 15 years. While our personal experience fuels us during advocacy events and awareness days we are also acutely aware of the absence of those who were lost to the disease and reminded that a part of our life is forever changed. Advocacy is a way to turn a terrible life experience into education, awareness, and support for soneone facing similar challenges. Advocacy events and activities can be personally rewarding and advocacy efforts can assist others and even change their lives. Being an advocate is amazing and meaningful. While I celebrate the progress I've been a part of and the lives I've helped to change, a part of me is alwaying grieving a little bit. I've learned that grief is most definitely one emotion that fuels advocacy. As long as I advocate for people with lung cancer, I will never stop grieving for my dad. Everything I advocate for reminds me that he's no longer here. Part of me finds comfort that he is still "with" me after all these years while other relatives have long stopped saying his name. While I'm on a mission to provide all these things to improve a patients survivorship, I'm reminded that my dad never had these things and he did not have a fair shot at survival. It's really bittersweet. Even though there is a an undercurrent of sadness-- turning tragedy into purpose and a mission honors my dad. Its also the most rewarding feeling to serve others and help to change their lives
  2. "Boy, what a week!" ...How many of you know that phrase by heart? All of you! (And not always starting with such an innocent word as "boy...") Well, that's been my week. And I know it probably has been for you, too. Just by way of illustration: I went to the grocery store a week ago. On the day of my mom's most recent treatment. Mom's treatment stays usually last about 6 hours, so the day is toast by the time we get home, and we are "pooped." So, back to the groceries. I. Just. Now. Finished. Unloading. The. Car. Don't get me wrong: I got the precious perishables out as soon as we went inside. But the rest? It slept in my car through a week of hot-cold-stormy-sunny. Once we had the front door locked, the outside world vanished. This week progressed similarly for the rest of our responsibilities, too: we felt under the weather (literally and figuratively), so the ticks on the tick-off list just didn't get ticked. I am absolutely sure that each of you knows that feeling. That's one of the safety nets of this community: nobody knows what it's like until they've been there. Not really. That's what helps to build our Caregiver community and our LC community. That's our familial bond. But, like most weapons, it can be a sword or a shield. Sometimes, that bond can also be a burned bridge. Have you ever been challenged by another Caregiver? Asked to defend why you chose a particular approach for your loved one? Asked why you haven't done this or tried that? I have. And I bet you have, too. It hurts. Not only does it imply that one approach is better (which is condescending), but such criticism places an additional burden on already overwhelmed shoulders: explain this to me! Justify this to me! Take the time to research my position! Even as we build our bonds as Caregivers, and even as we acknowledge the struggle that unites us, we must always remember that every family is different. Every patient has different needs, so every Caregiver must respond to THAT patient, OUR patient, rather than to some "ideal" formula of caregiving. Want a live-in aide? Hire one. Don't? Then don't. Same with choosing treatment plans, listening to holistic practitioners, which tasks to assign friends and family, which information to share with whom, how to make the calendar...anything. I'm as guilty of this as anyone, but I try to consistently remind myself: we are on the same journey, but along different paths. And that's okay. I would be honored if you would join us at our next monthly #LCCaregiver Twitter chat: tomorrow, Wednesday 4/5, at 8pm ET. Just follow #LCCaregiver to participate. Everyone is welcome. Bring a friend. Tell a fellow Caregiver. Have your loved ones chat alongside you. I am so excited to share with and learn from you. The questions and topics are below, so that you may review them before we "meet" tomorrow night. Love and thanks, Danielle ? Did you find support among other caregivers or do/did you find it more challenging? Why? Have you experienced feelings of guilt or judgement placed upon you by other #LCCaregivers? What are some of the tensions that can erupt between carers? What are the different tensions between #LCCaregivers in families vs in support groups? How can a new #LCCaregiver prevent caregiver conflict and competition? Are there any tips or resources that can help an #LCCaregiver dealing with competition and judgement?
  3. Welcome! Settle in. Get comfortable. If you’ve joined us here, lung cancer has touched the life of someone you love, and has thereby touched your life as well. I am sorry. Well: I am sorry you are going through this, for sure, but: I am so glad you have found us here. Excited, even. You have found a new family, and a new wealth of resources. You will not be alone in this (insert your preferred word: some say “fight,” some say “journey,” I say “process”)! A few words about me, so you know who you’re “talking” to: I’m 29, and I’m a full-time caregiver for my parents. My awesome mama was diagnosed with Stage IV NSCLC in March of 2015, and has been on an immunotherapy (PD-L1) clinical trial ever since. My awesome papa has other serious health issues, so we all hang out together, as a team, three stooges making the most fun we can (we’re good at that) and doing our best to keep the to-do lists at bay. Ahhh, those to-do lists… Ahem. I’m sorry. That’s a topic for another day! I’m a Social Media Ambassador for LUNGevity (more info here), and a volunteer for other projects of LUNGevity and for various other lung cancer organizations. I am a full-time advocate for better lung cancer care, research, and treatment. You can find me on Twitter @Actorielle, and on Facebook at Facebook.com/Actorielle or at danielleremkuspardue.com. Most importantly: I’m invested in YOU, in US, and in what it means to be a “Caregiver.” I have no particularly special training, and no specialized skill set for the tasks and responsibilities of “caregiving.” Here’s the secret: none of us do. We all learn by doing. We learn as we are called upon to fulfill needs. Bridging gaps between an uncompleted chore, an unshopped grocery trip, and an unresearched new treatment. We all tend to launch (or, rather, be launched) into this lung cancer world, with differing levels of healthcare experience, and all grasping for every bit of credible information we can find. Every bit of comfort, reassurance, honesty, and…help. That’s just it. We all begin this process needing all the help we can get. Your loved one, your patient, has his or her medical team, and has you. You, in turn, can have us. This. LUNGevity’s resources for Caregivers (start here) are vast, and practical, and vetted. You can find everything from peer-to-peer mentoring, to message boards, to an individualized app that organizes your specific lung cancer experience. However: amongst all these tools, where does that leave you, the person of the Caregiver? Where can you feel…Connected? Here. In addition to your family and friends and extended support network, join us here! LUNGevity is greeting 2017 by undertaking several exciting new endeavors, including this one: a new initiative to blog and chat specifically for the Caregiver audience. It’s almost like a New Year’s Resolution! As we explore this New Year’s Resolution together, you and I and LUNGevity, we will consider a different topic every month. I will introduce the topic here, on the blog, for your perusal. The following week, LUNGevity and I will host a chat over on Twitter, so that everyone (you, me, your family, your support network, and our entire community of fellow Caregivers) can come together to discuss, vent, learn, and grow. After each chat, I’ll review our conversations and post a de-briefing blog post. Where are we? What do we know now that we didn’t before? What do we need? Where can we go from here? So: it is my great honor to invite you to our inaugural #LCCaregiver Twitter chat of 2017, to be held next week, on Wednesday, February 1st at 8pm EST: “New Year’s Resolutions for Caregivers.” What do YOU want to say? What are YOU working on in your relationship with yourself as a Caregiver, and in your relationship with your loved one? If you have been a Caregiver for a while, what would you like to improve or change? If you are new to this role, what do you need in order to feel comfortable? As for me, I’m still working on what that title entails. I think we all are. In fact, that one word means something different for every survivor, every family, every household, every situation. “Caregiver.” Care partner, carer, caretaker? For me: daughter, friend, and advocate. Join me as we walk this road together. I am so excited to learn from you. Love and thanks, Danielle
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