Lisa66 Posted January 31, 2018 Share Posted January 31, 2018 Hi I am Lisa and my father has just been diagnosed with matastis squamous carcinoma of the lungs. I will be my fathers main caregiver and I am looking for a support group. Any advice would be greatly appreciated as time goes on. Link to comment Share on other sites More sharing options...
Steff Posted January 31, 2018 Share Posted January 31, 2018 Welcome Lisa, I am also a caregiver/support person. I reached out to the Lungevity website and these forums soon after my mom was diagnosed with a recurrence of NSCLC. Like you, I was looking for support. I was also looking for some glimmer of hope and a space where I can cry/vent/completely lose it. I found all of that here. These forums have very active members who are both caregivers and warriors of lung cancer. I find both perspectives very helpful. I also appreciate that not all content here is "doom and gloom", which seems to be a common theme in many online support groups. This is not only a great place to find support, but it is also a great place to ask questions and get current answers - so much of the information on other websites are outdated, especially statistics. Lungevity's website is the best I have found so far. And who best to get answers from other than those who are currently or recently dealing with lung cancer?!! That being said, I want to offer you an invitation to feel free to join in and share any information you feel comfortable with, right here. Is there anything specific that you need? Do you want to share more about your dad's diagnosis? I also want to share 2 other resources with you....there is a Lungevity Caregiver Facebook group that I am a part of as well. I personally prefer these forums, but please feel free to request an invite from their group. The group is at: https://www.facebook.com/groups/LungCancerCaregivers/ Secondly, Lungevity offers a program called Lifeline Support Partners. I am not familiar with the program, but have seen it referenced here in the forums. Here is the webpage for more info: https://www.lungevity.org/for-patients-caregivers/support-services/peer-to-peer-mentoring/lungevity-lifeline Finally, I just want to let you know that I have probably felt/currently feel all of the emotions you are. We are all here for you, myself included. You have taken on a demanding and sometimes thankless job. You father is so lucky to have you. Take care, Steff Link to comment Share on other sites More sharing options...
Lisa66 Posted January 31, 2018 Author Share Posted January 31, 2018 Thank you so much for responding Steff. I do not have a lot of info yet, other than a name. Tomorrow we will go and discuss stages and treatment options. I feel like we are on a conveyer belt heading for disaster, and there is no way off. I guess I wonder how you and others deal with the helplessness of the situation. It threatens to overwhelm me and I fear I am only at the beginning of the battle. I hope as we speak your precious mother is doing well. Thanks again for responding. It is good to know there are people to reach out to. Link to comment Share on other sites More sharing options...
BridgetO Posted January 31, 2018 Share Posted January 31, 2018 Hi Lisa and welcome here. i second everything that Steff said. She's a great resource, especially for caregivers. Cancer is kind of like a conveyer belt. But I don't see it as a conveyer belt to disaster, but rather to the unknown. None of us, whether we have cancer or not, knows what's coming next. With cancer, it feels like whatever it is is coming faster. I've found it helpful to tthink of it as a journey, rather than a battle. Battles are always exhausing. A journey can be exhausting, too, but it can be interesting as well, and there are times when you can relax. But as Steff said, we've all been through a whole bunch of different emotions. This forum is a good place to find support and hope. Bridget O Link to comment Share on other sites More sharing options...
Steff Posted January 31, 2018 Share Posted January 31, 2018 Ohh yes, the feeling of the non-stop trip toward disaster is one I know well. And honestly, I felt that way up until a couple of months ago. My mom was in and out of the hospital and had one problem after another. But, she got over it and is doing pretty great, actually. I'm an only child, my mom is my best friend. I have a very small family, my dad is disabled and I can't really count on anyone else to be reliable. So, it's just me. The feeling of helplessness has been overwhelming at times. I'm a fixer and I can't "fix" cancer. How did I deal with the helplessness? I cried pretty much non-stop for weeks, probably even a few months. At times, I cried to my mom (I just couldn't help myself). She cried with me. It brought us even closer. Is crying the healthiest thing to do? -I don't know, but it got me through it. I also knew that my mom could handle seeing me cry and it gave her permission to cry in front of me too. I have never wanted to take an antidepressant, but I finally broke down and got one. I'm on the lowest dose of Zoloft. Does it help? -I don't know, but now I don't cry all day, everyday. I also reached out for help here. I feel hope that there are so many warriors who aren't just surviving lung cancer, but are living full lives. Some are living fuller lives after their diagnosis. My mom is one of them. I also know that I will survive, I have to, there is no choice. It may be painful, but I will survive and make the best of my time with my parents while I can. I personally find it helpful to gather as much information as possible about the type of lung cancer my mom has and the various treatment options available. Lungevity's website and these forums have been a huge help with that. Everyone is so supportive and willing to share any knowledge they have learned along the way. That's why I like to regularly update my mom's journey so that others may be able to learn from it. Although your dad's cancer is different from my mom's you might want to read my posts just to see that there is hope. The link to it will be at the bottom of this post. I really feel that the worst part of this journey is the waiting. Waiting for diagnosis, staging, treatment, etc. It's just awful. Both my mom and I felt better once a treatment plan was in place and she got through her first few treatments. Now don't get me wrong, treatment has been tough on my mom, but she got through the worst part for now. I am hoping that some of your helplessness feeling will go away once you have a treatment path to travel. There really is some validity behind the phrase "the new normal". Once I found that, life was a bit easier. Lisa, you WILL survive this!!! Link to comment Share on other sites More sharing options...
Tom Galli Posted February 1, 2018 Share Posted February 1, 2018 Welcome here Lisa! I've been on that conveyor belt heading for disaster. Fortunately, the belt broke caused by a successful treatment. In a couple of days, I'll borrow 4 of my granddaughter's toes, painted red, along with my 10, also painted red, and celebrate living 14 years after diagnosis with late stage squamous cell non small cell lung cancer. I'll post the picture in the blog section of the forum. Your dad and I share a disease and we can also share an outcome. The purpose of my celebratory photo is to make a very important point: if I can live, so can your dad. Steff's counsel on the challenges of lung cancer caregiving is beyond wise. Others here can tell you first hand about any treatment, therapy or drug used to treat lung cancer. We'll answer any question. We'll be honest and most importantly, we'll be here, almost 24/7/365. For now, the most important thing I can advise is to ensure you or another family member attends every consultation with every doctor your dad sees. Stay the course. Tom Link to comment Share on other sites More sharing options...
Lisa66 Posted February 1, 2018 Author Share Posted February 1, 2018 Thank you BridgetO and Steff. Y’all are very comforting. Steff, I am glad your mother is doing well. I will post again tomorrow after I know more. Link to comment Share on other sites More sharing options...
Lisa66 Posted February 1, 2018 Author Share Posted February 1, 2018 Tom, bless you for responding. As soon as I had a name for this terrible disease I started looking up information online, and as you must know being a warrior yourself, the information is not that uplifting. You however made me cry, but at the same time gave me hope. Thank you so much. I hope in time that I may be of some comfort to a new member the way that you and others have been to me. Link to comment Share on other sites More sharing options...
LaurenH Posted February 2, 2018 Share Posted February 2, 2018 Hi, Lisa, I'm very glad that you've connected with most of our moderators. They're incredible people and we're very grateful for the support and experience that they provide to our members. Steff mentioned some of LUNGevity's additional support programs - our Facebook groups and the LifeLine Support program. If you'd like any additional information about LifeLine, please let me know. I also wanted to share a link to our Caregiver Resource Center, where you'll find tips and information to help you transition into the caregiver role: https://www.lungevity.org/for-patients-caregivers/caregiver-resource-center/caregiving-tips We're very glad that you've joined this community. Please continue to ask questions and share updates. We are here for you! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation Link to comment Share on other sites More sharing options...
Lisa66 Posted February 2, 2018 Author Share Posted February 2, 2018 Tom, bless you for responding. As soon as I had a name for this terrible disease I started looking up information online, and as you must know being a warrior yourself, the information is not that uplifting. You however made me cry, but at the same time gave me hope. Thank you so much. I hope in time that I may be of some comfort to a new member the way that you and others have been to me. Link to comment Share on other sites More sharing options...
Lisa66 Posted February 2, 2018 Author Share Posted February 2, 2018 Hi Lauren, Thank you for introducing yourself. I am very fortunate to have found such a supportive site. Everyone here so far have been awesome. This journey is new for me, I feel like I am being given support without giving in return. I hope that my dads disease is treatable for many years and I may become an old pro, allowing me to give back. Link to comment Share on other sites More sharing options...
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