YoureNeverAlone Posted February 3, 2020 Share Posted February 3, 2020 The announcement by Rush Limbaugh led me here- he's been an important voice in my life, and there's just nobody else like him; I wanted to understand what he's about to go through, that's how I got here. Until now, I never realized how many people are suffering from this and other horrible diseases, constantly in and out of hospitals and doctor's offices, I just can't imagine. So many are suffering quietly in their own homes, middle of the night, unable to sleep or to get relief from constant pain and misery. And to think that this can come on without any warning at all, and you're whole world just comes to a crashing halt. My heart aches for everyone contending with this horrible disease, I can't even tell you. How we take things for granted when everything seems to be going just fine, and we forget about those who aren't so fortunate. Well, I don't want to be one of those people. I don't know that I can ever help any of you who are going through such awful times, but here I am, feeling powerless to help but hoping to be able to do so. Starting tonight, my kids and I will start praying EVERY night for all of you (instead of the same old memorized prayers), especially those of you who feel like you're alone- I've always believed that we can tolerate anything if we're with the people we love; but loneliness is the worst evil in the world. I pray that no one who suffers from this disease ever feels like they're fighting this alone. I haven't navigated this site yet, but I'm really hoping to find inspiring personal accounts of those who are healing, and accounts of those who may not be healing but are finding peace and acceptance with their circumstances. I want to hear your stories. Link to comment Share on other sites More sharing options...
Curt Posted February 4, 2020 Share Posted February 4, 2020 Hello @YoureNeverAlone Welcome to the site. The news that anyone has lung cancer is shocking. People diagnosed with lung cancer, like Rush, often have no symptoms until it is at an advanced stage. Lung cancer is the leading cause of cancer deaths in the world, it accounts for 25% of all cancer deaths. Lung cancer was always viewed as a disease that older people who smoked got. More and more young people and people who have never smoke are developing it. I was 42 and never smoked. I hate that Rush has this disease but I am encouraged that his fight might bring more awareness to it. More people need to talk about it and bring awareness to it. Link to comment Share on other sites More sharing options...
Rower Michelle Posted February 4, 2020 Share Posted February 4, 2020 Thank you for the prayers. I am a never smoker, diagnosed at the age of 51 with Stage IV lung cancer and an initial six month prognosis (that was 16 months ago!!!) Due to the advances in research, I’m doing well today however lung cancer receives the lowest level of federal funding. It is our great hope that those with the mega-phone get engaged. This year I will be honored to serve as the Kansas LungForce Hero for the American Lung Association. I will be in WDC to advocate for funding. I was beginning to think my letters to my Congressional Reps were never really read until one day Senator Moran’s Office called. There is hope. We need all the friends we can to fight this disease. Nice to meet you. Thanks for reacting out to us. Michelle Link to comment Share on other sites More sharing options...
D iane Posted February 4, 2020 Share Posted February 4, 2020 Morning. Welcome. I am not a lung cancer patient, my husband is. When we first were diagnosed my heart broke for our children. 33 and 26 is way too soon to lose a parent. Whenever our son talks about it there are tears in his eyes. Please keep them in your prayers. I do know what it is like to get a cancer diagnosis. It says a WHOLE lot that you came here and reached out after hearing about Rush's diagnosis. There are a bunch of misconceptions out there and at times it's only your fellow cancer fighters that truly understand the ups and downs of the journey. This morning we just heard another one, Shannen Doherty announced she is Stage IV. She said you only die once, but you get to live everyday. We so far are living a fairly normal life. My husband is still out there working and he is living. Yes, he's fighting for his life, but like so many here, we're doing it with as much grace and dignity as we can muster. I'm sure Rush will do the same. Thank you. We do need to find a better way and eradicate this epidemic called cancer. Link to comment Share on other sites More sharing options...
Tom Galli Posted February 4, 2020 Share Posted February 4, 2020 Neveralone, My bottom line lesson learned is lung cancer is a disease of life. I endured nearly 4 years of constant treatment and had many opportunities to find joy while basking in NED (no evidence of disease). Instead I loaded up on worry, despair and depression. The Shawshank analogy now resonates with me. My objective for life is searching for joy and when I find it, I revel in it. I'm fortunate to be nearly a sixteen year survivor. Each year, in February, I anoint my toes with nail polish; one toe for each year of life beyond diagnosis. The last 5 I had to borrow a foot. This year, I'll need to borrow 2 feet! I paint to celebrate; my celebration suggests that if I can live, so can others. Besides hope, attitude towards treatment and outcomes is extremely important. A resilient or sanguine attitude is an idea I learned from Stephen Jay Gould. I was undone by survival statistics till I read his essay "The Median is Not the Message." I found his essay just in time and it rescued me from the mire of lung cancer survival statistics. I've learned, there is always hope, with high confidence. There is also always faith. Our society has turned away from the idea of faith as we've secularized. But faith is a distinctly human characteristic, not just a theologic construct. Indeed, in my view, there cannot be hope if there is not first faith. Because I have faith, hope is achievable and with hope, treatment success becomes probable, not possible but probable! In the last 4 years, lung cancer treatment for non small cell has seen many innovations. We benefit from targeted therapy and immunotherapy and these methods are having an impact on survival. Still, compared to other life threatening, "self induced diseases" funding research for new treatments is anemic, in the extreme! Many struggle to advocate for research. A newscaster made a big deal about our collective problem with opioid addiction citing that 40,000 Americans will die by overdose. Almost 4 times more will die from lung cancer! The National Institute of Health Budget projects FY 2019 Drug Abuse research at $1.633 billion while Lung Cancer research is only $415 million. It is ironic to realize that funding for drug abuse research is almost 4 times greater than lung cancer! The imbalance screams unfair when about 34,000 of us will be diagnosed this year as never smokers, just shy of the total number of deaths from self induced opioid addiction. I do hope you navigate this site. There is much to be learned here about lung cancer and even more to be learned about life. Stay the course. Tom Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted February 4, 2020 Share Posted February 4, 2020 Thank you for finding this forum to show you support! If you and your family would like to get involved in raising awareness and funding, here are some ways to be an advocate for lung cancer: https://lungevity.org/for-supporters-advocates If you have any questions or need additional information, please let me know! Link to comment Share on other sites More sharing options...
BridgetO Posted February 4, 2020 Share Posted February 4, 2020 Hi and thanks for your concern. Some of us are suffering and some aren't. Some of us have suffered through some pretty unpleasant treatments but are now OK, The last describes me. I've had an early stage lung cancer and two other unrelated cancers, one of them advanced and aggressive. I'm OK now, with No Evidence of Disease (NED). Most of us prefer the term NED to "cured" or "in remission." It describes where we are now (or hope to be). As for the future, you never know. I'm optimistic! I hope you'll become an advocate for folks with lung cancer. There's stigma attached to lung cancer because of the connection to smoking. Although smoking increases risk, anybody can get lung cancer whether they smoke or not. And nobody, smoker or not, "deserves" this disease. Bridget O Link to comment Share on other sites More sharing options...
Tomm Posted February 4, 2020 Share Posted February 4, 2020 YOURENEVERALONE ..you can help by supporting what most other countries have .. Free medical care. Ask whoever you vote for to support this too. Tom Galli made clear the lack of funding. thanks for your support Link to comment Share on other sites More sharing options...
YoureNeverAlone Posted February 11, 2020 Author Share Posted February 11, 2020 On 2/3/2020 at 7:21 PM, Rower Michelle said: Thank you for the prayers. I am a never smoker, diagnosed at the age of 51 with Stage IV lung cancer and an initial six month prognosis (that was 16 months ago!!!) Due to the advances in research, I’m doing well today however lung cancer receives the lowest level of federal funding. It is our great hope that those with the mega-phone get engaged. This year I will be honored to serve as the Kansas LungForce Hero for the American Lung Association. I will be in WDC to advocate for funding. I was beginning to think my letters to my Congressional Reps were never really read until one day Senator Moran’s Office called. There is hope. We need all the friends we can to fight this disease. Nice to meet you. Thanks for reacting out to us. Michelle Michelle, congratulations on your persistence Michelle, surviving against the odds and even landing a gig in DC!!! Not bad for an old gal!! (Ha! I'm 49). I've always been appalled at how breast cancer has become 'trendy', taking center stage and sucking all of the funding away from other critical causes such as this one. Like I said, I never gave it a second thought until Rush announced it. I'll definitely be bringing it up in social circles whenever the issue of 'health' comes up. I'm really pushing for you, truly, and I pray that life will continue to fulfill you and bring you peace. Feel free to give a shout any time, and thank you for your inspiration! Link to comment Share on other sites More sharing options...
YoureNeverAlone Posted February 11, 2020 Author Share Posted February 11, 2020 On 2/4/2020 at 10:01 AM, Tom Galli said: Neveralone, My bottom line lesson learned is lung cancer is a disease of life. I endured nearly 4 years of constant treatment and had many opportunities to find joy while basking in NED (no evidence of disease). Instead I loaded up on worry, despair and depression. The Shawshank analogy now resonates with me. My objective for life is searching for joy and when I find it, I revel in it. I'm fortunate to be nearly a sixteen year survivor. Each year, in February, I anoint my toes with nail polish; one toe for each year of life beyond diagnosis. The last 5 I had to borrow a foot. This year, I'll need to borrow 2 feet! I paint to celebrate; my celebration suggests that if I can live, so can others. Besides hope, attitude towards treatment and outcomes is extremely important. A resilient or sanguine attitude is an idea I learned from Stephen Jay Gould. I was undone by survival statistics till I read his essay "The Median is Not the Message." I found his essay just in time and it rescued me from the mire of lung cancer survival statistics. I've learned, there is always hope, with high confidence. There is also always faith. Our society has turned away from the idea of faith as we've secularized. But faith is a distinctly human characteristic, not just a theologic construct. Indeed, in my view, there cannot be hope if there is not first faith. Because I have faith, hope is achievable and with hope, treatment success becomes probable, not possible but probable! In the last 4 years, lung cancer treatment for non small cell has seen many innovations. We benefit from targeted therapy and immunotherapy and these methods are having an impact on survival. Still, compared to other life threatening, "self induced diseases" funding research for new treatments is anemic, in the extreme! Many struggle to advocate for research. A newscaster made a big deal about our collective problem with opioid addiction citing that 40,000 Americans will die by overdose. Almost 4 times more will die from lung cancer! The National Institute of Health Budget projects FY 2019 Drug Abuse research at $1.633 billion while Lung Cancer research is only $415 million. It is ironic to realize that funding for drug abuse research is almost 4 times greater than lung cancer! The imbalance screams unfair when about 34,000 of us will be diagnosed this year as never smokers, just shy of the total number of deaths from self induced opioid addiction. I do hope you navigate this site. There is much to be learned here about lung cancer and even more to be learned about life. Stay the course. Tom I love the toenails story, and I've got an extra foot waiting to volunteer! (sure my young daughter would love an excuse to paint my toe!). I also loved the statistical comparison between lung cancer and opioids- unbelievable! A self-inflicted addiction getting more funding and attention, it's inexcusable. Tom, you've developed a great attitude and I like the way you think. I wish you happiness and peace, and keep up the good fight!! Take care- Link to comment Share on other sites More sharing options...
YoureNeverAlone Posted February 11, 2020 Author Share Posted February 11, 2020 On 2/4/2020 at 11:28 AM, BridgetO said: Hi and thanks for your concern. Some of us are suffering and some aren't. Some of us have suffered through some pretty unpleasant treatments but are now OK, The last describes me. I've had an early stage lung cancer and two other unrelated cancers, one of them advanced and aggressive. I'm OK now, with No Evidence of Disease (NED). Most of us prefer the term NED to "cured" or "in remission." It describes where we are now (or hope to be). As for the future, you never know. I'm optimistic! I hope you'll become an advocate for folks with lung cancer. There's stigma attached to lung cancer because of the connection to smoking. Although smoking increases risk, anybody can get lung cancer whether they smoke or not. And nobody, smoker or not, "deserves" this disease. Bridget O Hi Bridget, I would never say anyone 'deserves' a disease, but I'm thrilled that you're NED (I learned a new term, thanks!). Rush once said that smokers are the most discriminated people in the country, and I pretty much agree. I don't blame smokers for getting cancer- there may or may not be a correlation, but as you said, plenty of non-smokers get the disease as well, and nobody deserves to be afflicted. I'm so happy for you that you're doing so well, and hopefully it weighs less on your mind as time goes on. Sounds like you got a valuable experience out of your struggle, awful as it was to go through. Take care- Link to comment Share on other sites More sharing options...
YoureNeverAlone Posted February 11, 2020 Author Share Posted February 11, 2020 20 minutes ago, YoureNeverAlone said: I love the toenails story, and I've got an extra foot waiting to volunteer! (sure my young daughter would love an excuse to paint my toe!). I also loved the statistical comparison between lung cancer and opioids- unbelievable! A self-inflicted addiction getting more funding and attention, it's inexcusable. Tom, you've developed a great attitude and I like the way you think. I wish you happiness and peace, and keep up the good fight!! Take care- I'm reading Gould's January 2013 paper now . . . Link to comment Share on other sites More sharing options...
Rose Kaiser Posted February 12, 2020 Share Posted February 12, 2020 I didn't realize how lung cancer took a "back seat" to other cancers with funding until I was diagnosed last year. Many people think that lung cancer is self inflicted and have no idea how many who suffer have never smoked. Tom's mention of the drug abuse budget versus lung cancer budget really hit home. Since I have joined this forum, I have a better outlook about my treatment and look forward to a long and fulfilling life. I'd like to say a special thanks to Tom for all the great information he posts. You have changed my attitude for the better. Rose Link to comment Share on other sites More sharing options...
Rower Michelle Posted February 12, 2020 Share Posted February 12, 2020 Thank you for the warm encouragement! We learned in rowing to be successful it’s about the 3Ps: patience, persistence and perseverance. Same principles apply here. I can only speak for myself about “pink fatigue”. When I went for the annual mammogram last year totally exasperated I felt in a sea of pink. Lung cancer affects more women for an unknown reason. At a recent seminar the Head of the Canadian Oncology Service stated 100 years ago lung cancer was very rare but went it did occur it was considered a “woman’s disease”. Only later as smoking began to increase were men increasingly more affected. Now with a decrease in smoking trends the experts have no rationale for why an increasing number of younger never smokers women have seen an 87% increase in lung cancer. Go figure. Anyone with lungs is at risk. We really appreciate you circling back. Nice to have you here! Michelle Link to comment Share on other sites More sharing options...
Recommended Posts
Archived
This topic is now archived and is closed to further replies.