Lung Cancer

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Lung Cancer
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I'm new here!

Hi, my name is Ellyn. I'm looking for community and friendship. I believe I may have introduced myself before, but I have not been looking into the Mighties for awhile and lost touch. I am a stage 4 lung cancer survivor ( remission). I was diagnosed in 2017 and feel blessed to still be living life.! Although, I am far from the person I was before ca and all the treatments needed to get me into remission. Physically suffer from chronic fatigue and chest and back pain daily. I feel as though I am trying hard, but find myself discouraged and blaming myself with thoughts of (if I only tried harder and ignore this pain and fatigue that feels crippling). I believe other people , besides my own husband and close family, think I just need to try harder and have a different mental outlook. Although when I really think about it I am trying hard every day. Today I cleaned windows for 3 - 4 hours and I am exhausted! I am looking to hear stories from others suffering from chronic illness ( what ever type). Love to hear secrets on how you make it through your day. How to make and keep friends when life feels like it is getting smalller and smaller. Also, how to make on feel like they make a difference in this world and not just someone struggling to make it through the day.

Question for anyone suffering from lung scarring / lung disease- what does it mean when my oxygen drops with exercise but than recovers quickly? I notice big variations in my O2 sat from 99%-86%.

#MightyTogether #Anxiety #Depression #LungCancer

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So I turned the big 65. This is not a post to illicit birthday wishes. Please don’t think it is. It’s just a bit of a lamentation on how debilitating illness causes you to lose so much living. I’m posting it for educational purposes for any who care to read it. Chronic and invisible illness is everywhere. Someone you know and love may be affected now or unexpectedly in the future. It affects every aspect of the ill person’s life and that of caregiver’s. The poor caregiver seldom gets a break and little recognition of the burden they carry.

I don’t feel like I’ve even lived enough to get old. There’s such a big gap between being at my peak just before I got sick at 33 and then being old. It happened so hard and so fast. I felt young and in my prime one day and 80, frail, and beyond sick the next. I still can’t comprehend how I was functioning one day, albeit struggling, and the next I was just broken never to recover and never to even level out or improve much.

These are not my “Golden Years”. They are hard and harsh and have been ever since I succumbed to illness 32 years ago. I will not be doing things I’ve always wanted to do and going on new adventures or enjoying simple things like spending time with grandchildren because illness robbed me of children of my own and a spouse. In general, people don’t stick around when your world is reeling and you can no longer be who you are. Nor can you meet and develop new friendships in the throes of illness and living in isolation.

As much as the only thing I ever really wanted in life was a simple life of home and family, it’s just as well I didn’t have children that I couldn’t take care of or a man who wasn’t in it when the going got tough. Even just the basics in life that children require take a lot of energy and a lot of going and doing. I know because of the big hand I had in helping raise my nephews before I succumbed to illness when their mother wasn’t expected to live. Then my mother was my neices’ daycare and I helped with them necause I wanted to. I lived in a mobile home in my parents’ back yard.

My nieces came along 10 years after my youngest nephew. They were the loves of my life and probably saved my life. I had lost everything when my oldest niece was born 3 years after I got sick and I really had nothing to live for and didn’t want to live. I had absolutely no income for two years until I won my meager disability and would have been on the streets if my parents had not graciously and without question taken me in. My body just wouldn’t work and I could no longer dance. Being a dancer was my identity. I wan’t happy not working. I had worked at something since I was 10 years old. I felt like a failure and a freeloader despite my parents never acting like I was and taking care of me willingly.

My nieces loved me dearly as did my nephews. I still felt a lot of guilt because I couldn’t be the fun aunt to my nieces that I was to my nephews and take them places and do things with them. They never knew me any other way, though, and they were always so eager to toddle across the walkway to my trailer once I let them know I was up in the mornings. It was part of their daily routine with us. We did simple low energy things together like read story books, play their children’s songs, watch their favorite children’s shows, sit on the steps and play “I Spy”, walk around the property on the days I could and look at flowers, and their favorite activity, lying on a quilt cloud watching. So even though I haven’t been a natural mother, I’ve been a surrogate mother of five.

I know no one ever really lives the life they imagined. Unexpected things derail plans all the time. Life limiting illness is a whole other curveball, though. It’s a boulder or falling rock off the side of a mountain. It comes out of nowhere at warp speed. It crushes you and injures you just as a literal falling rock would. You struggle to understand, your literal life is in jeopardy, your spirit is crushed, and in time your will to survive is because you can’t come back from the injury. Life as you’ve known it is over. You are permanently disabled and will never be anywhere near your former and true self again.

Don’t think I just let this happen. I fought against it tooth and nail. Mostly to my own detriment and certainly to my own and my family’s emotional distress. I’m truly surprised I’m still living. Not just because of the emotional upheaval and desperate thoughts of the early years, but because of the multiple real life-threatening conditions I live with that can go bad in a moment, the constant assault on my body on a daily basis and new ones always developing, muscles that don’t work well including autonomic ones like breathing, lung cancer that was undiagnosed for three years and the tuberculosis type infection that I still deal with that likely caused the cancer. I really don’t know why this body doesn’t just give up. I get up and push through every day and try to find some motivation, purpose, and small joys, not necessarily because I’m a fighter and all that lofty stuff, but necause it’s survival.

I don’t look forward to waking up every single morning slammed with such lack of energy I feel like my body shut down during the night to survival state, often wracked with pain, seldom having slept much or well, often feeling so overwhelmed with it all I want to cry, but that’s physical and emotional energy I don’t have. Life is miserable and the days are so long and tedious when I can’t manage to do something no matter how minuscule it is so I prod myself out of bed, literally stumble to the kitchen because my legs don’t have the energy to work right yet, make my tea and a little sustenance and try not to be too disheartened for, at least, a couple hours until I get a little more functional. Then I try to do something useful.

Chronically ill, homebound, and bedridden people have the same needs as everyone else. They mostly go unmet because the onus is left on the sick to initiate social interaction and since we can’t go and do, we are mostly out of sight and out of mind. The sick are often left caring for the sick because so many conditions are multigenerational. It’s a lonely and isolated life. We didn’t chose it. Others just don’t see us. If you don’t understand that we have the same needs you would have if you were in our position, you simply don’t understand the basic human condition. We don’t have the energy to stand on our soapboxes and try to explain it. We wouldn’t anyway. We need more than thoughts and prayers. We need tangible action.

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I’m new here!

Hi, my name is CalmingCrocodile43.
My Husband was diagnosed with bi-lateral The beginning of our journey.

#MightyTogether #LungCancer #BrainCancer

6 reactions 1 comment

5 Young Adult Books Featuring Characters With #Cancer

Being diagnosed with #Cancer is really hard. Finding a book with characters to “guide you” along the way shouldn’t be. So here are 5 YA books featuring characters with #Cancer :

1.”Ask My Mood Ring How I Feel” by Diana Lopez

This read combines the challenges of growing up, Tex-Mex culture, with facing a mother’s cancer diagnosis and how to cope. The author’s aunt was diagnosed with #BreastCancer , so readers should hopefully find this might align with some of their experiences (I hope). It’s the summer before eighth grade, and Erica “Chia” Montergo is feeling so many things that she needs a mood ring to keep track of her emotions. She's happy when she hangs out with her best friends, the Robins. She's jealous that her genius little sister, who has #ObsessiveCompulsiveDisorder , skipped two grades. And when Erica's mom is diagnosed with #BreastCancer , she feels worried and doesn't know what she can do to help. When her family visits a miracle room in a famous church, Erica decides to make a promise to God in exchange for her mom's health. As her mom gets sicker, Erica quickly learns that juggling family, friends, school, and fulfilling a promesa is stressful, but with a little bit of hope and a lot of love, she just might be able to figure it out.

2.”Brave Enough” by Kati Gardner

Author Kati Gardner tells her story authentically, as she had a #LimbAmputation and #Cancer . *This might be triggering for readers who are battling addiction. Teenager Cason Martin is the youngest ballerina in the Atlanta Ballet Conservatory. She never really had a choice of whether she learned to dance or not. Her mother, the conservatory's artistic director, has made all the decisions in Cason's life. But that's about to change. Cason has been hiding an injury, and it's much worse than anyone imagines. Davis Channing understands all too well what it's like to give up control of your life. He's survived #Cancer , but his drug #Addiction nearly killed him. Now he's been sober for seven months and enjoying his community service at the hospital. But just when he thinks he's got it together, Davis's ex-girlfriend, who is still battling her #Addiction , barrels back into his life. Cason and Davis are not friends. But, as their worlds collide, they will start to depend on one another. Can they both be brave enough to beat the odds?

3.”Finding Balance” by Kati Gardner

Jase Ellison doesn’t remember having #AcuteLymphoblasticLeukemia when he was three years old. His #Cancer diagnosis only enters his mind twice a year. Once at his yearly checkup at the oncology clinic and when he attends Camp Chemo in the summer. No one in his “real” life knows about his past, especially his friends at Atlanta West Prep. Mari Manos has never been able to hide her #Cancer survivorship. She wakes every morning, grabs her pink forearm clip crutches, and starts her day. Mari loves Camp Chemo—where she’s developed a healthy crush on fellow camper Jase. At Camp, she knows that she’ll never get “the look” or have to explain her #LimbAmputation to anyone. Jase wants to move on, to never reveal his past. But when Mari transfers to his school, he knows she could blow his cover. That’s the last thing he wants, but he also cannot ignore his attraction to her. For Mari, she only wants to be looked at like a girl, a person, and not only known for her #Disability . But how do you move on from cancer when the world won’t let you?

You can find author Kati Gardner’s blog at

4.”The Fault In Our Stars” by John Green

Despite the tumor-shrinking medical miracle that has bought her a few years, Hazel has never been anything but terminal, her final chapter inscribed upon diagnosis. But when a gorgeous plot twist named Augustus Waters suddenly appears at #Cancer Kid Support Group, Hazel's story is about to be completely rewritten. Insightful, bold, irreverent, and raw, The Fault in Our Stars is award-winning author John Green's most ambitious and heartbreaking work yet, brilliantly exploring the funny, thrilling, and tragic business of being alive and in love.#LungCancer

5.”Don’t Die, My Love” by Lurlene McDaniel

Julie Ellis and Luke Muldenhower have always been school sweethearts. Now both are in high school and deeply in love. Luke, a talented football player, is almost certain to receive an athletic scholarship to a top college. And no matter what her parents say, wherever Luke goes, Julie intends to follow. When Luke can't shake what he thinks is a virus, Julie persuades him to see a doctor. Luke's test results are alarming, but Julie believes their love is stronger than anything. Can love survive, now and forever?

I hope that every reader can find a book to relate to in this list 💞

#themightyreaders #Cancer

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Follow up to last post #Insurance #income #Retirement

Fast follow up to Saturday's "too long yet not full story".
Saturday was about https://my.worries that my lung cancer progressed and that I had symptoms of mets to the brain or a stroke (slurred speech and worries about balance).

The main anxiety this weekend was the need to apply for my retirement after stressful years at my workplace. I have to mke it through to at least April so that I can continue with my current coverage for my spouse and I after retirement. This is important for my cancer treatment obviously, assuming it is still successful. Also for my husband (he's retired.)

This assuming that my HR does not release me before April (remaining sick leave days and the fact that I am starting to slur my )speech
OR that I dont trust our state government benefits administration (CALPERS for those of you inCalifornia) nor my union to back me up.

I am assuming all will go through for my sanit...and expecting planning for the worst from experience.

And planning for my husband is important. I have been taking care of legal paperwork and contracts since we've been married since I found he relies on trust, optimism and his hopes to be what will happen in contracts and legal documents.

If it were just me, and I had my current doubts about my survival, I would quit and stopped my expensive treatment and daily meds and let the cancer take its course.

Im old, nothing is working out in life, and I rarely leave my house or see friends since 2021. The world is turning into an ugly place. I have books to read and maybe the remaining ability to go for a occasional ride in a car before i die. If i have insurance with my current HPO, I can get hospice care for the end.

I'm tired this weekend was not the rest I needed. Work tomorrow. Sorry for the pos, but I needed to say this.

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Any positive thoughts today? Any depression you need to share to bear?

Since the hashtags are fighting me, I'll post at the start that this post deals with depression that I haven't had in awhile aging, camcer, End of Life preparation.

Basically. I turned 64 in November, was diagnosed with lung cancer in 2021. Was hoping to survive and all seemed to be going well,but a new mutation showed up this past September. Now after just using daily oral med,I'm now back to getting infusions every 3 weeks plus follow up injection to boost my immune system. Its debilitating, and has given me incontinence for a week after the session. My knee joints are affected. As a result my balance is off and am now using a walker and canes. I feel woozy some days, which may be due to less air or dehydration. I feel nervous while driving this week to my appointment. I feel disabled in my mobility , and confined to home.

My husband and i need to go out. I'll fill in more later (about job, insurance, and EOL planning).

I just need to vent finally,maybe get feedback.

10 reactions 1 comment

Took a mental health day today from work. #Work #HealthCare #panic #Stress #LungCancer

Had medical and financial stuff to do and needed more than a two day weekend to do it. And needed a weekday to make phone calls during busines hours.
So still worried about things medical,health, financial and future planning.
But i got some sleep. Yay me.

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What advice do you have for someone searching for a rare disease diagnosis?

Between managing symptoms, juggling doctors’ appointments, and trying to find a name for what you’re experiencing, the journey to a rare disease diagnosis can be a bumpy one. That’s why it helps to have a community that “gets it” in your corner.

If you’ve been through the rare disease diagnostic process before, what advice do you have for someone just starting their search for answers? Do you have any tips for communicating with health care providers?

And remember, no matter where you are in your rare disease journey, you’re your own best health advocate. We’re cheering you on!

✏️ P.S. We’re creating a story with one of our partners, Catalyst, to raise awareness around late-onset rare disease. We may use your answer in an upcoming story on The Mighty.

💡 If you’re looking for more resources on navigating life with a rare disease, check out Catalyst’s new program at Many Faces of LEMS - lemsaware

#RareDisease #LambertEatonMyasthenicSyndrome #MyastheniaGravis #LungCancer #SCLC #CheckInWithMe #Spoonie #MentalHealth #Caregiving #MuscularDystrophy #IntravenousImmunoglobulin

Many Faces of LEMS - lemsaware

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