Lung 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.

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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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I'm new here!

Hi, my name is FunTiger92726. I am here because I have been searching for support and wisdom as I have been dealing with chronic pain and fatigue since developing late stage lung cancer over 6 years ago. Even though I am very grateful to be alive and have had the treatment work( so far), the damage to my lungs and body is chronic. I struggle daily to get going. I never wake up excited to get out of bed. Always a push. Some days better then others but usually I could easily spend most of day in bed, lie on my side with heating pad, and watch a series or read a book. I rarely allow myself to do this but it’s a challenge. Always a push!
As if the damage to my body is not enough, I feel isolated and lonely. I am again lucky, I have a lovely home, healthy dog, beautiful and healthy children and grandchildren (who live out of state), and I have enough money to get by. I try to go over my blessings multiple times a day. The isolation has happened because over the years I have canceled engagements and have stopped having guests as I tire so quickly and have had to ask friends and family to leave or I leave the room and climb into bed usually in tears. I then get embarrassed because I feel like a weakling. I have tried volunteering but again I struggled to get there on bad days, embarrassed, and I stop going. It’s all like the old saying “ the mind is strong but the body is weak”.
i know this is a lot. I look forward to hearing other’s stories and any advice and validation I may receive. I give so much credit to anyone going through chronic illness! It’s such a tough road!
Since it is the holiday-I wish all a very happy holiday holiday!🎅🎄

#MightyTogether

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I received some more bad medical news today. I wasn't mentally or emotionally prepared for it and I need time to process the information. I'm terrified, devastated and it put me into an immediate depression.

My chronic Lyme Disease seems to have never gone into remission, like I thought. I'm still infected with Chronic Lyme and Bartonella, assuming Rocky Mountain Spotted Fever too, but that one wasn't tested. I have a lot of unresolved trauma from treating my Lyme disease, and suffering for years.

It took two years to get that diagnosis when I was in my early 20s, having insane symptoms and that's when the suffering really started. I was 21. I started treatment at the age of 23. It was hell, the treatment was intense, painful and made me much sicker. I didn't have the long list of diseases and complications that I do now. I was also much younger and had more energy and spirit then.

Going through that again, with the body and physical ailments I have now, it's seriously frightening. I'm devastated that I didn't find out sooner. I knew that Lyme Disease caused a massive amount of damage in my body, I didn't know that it was still doing that to this day. It's a ton to process for me. I was 24 when my treatment ended. I'm 38 now. I'm feeling hopeless and I have already been tired of fighting. This body doesn't seem to want to live. It's very hard now, the idea of making it harder isn't fathomable to me right now.

I stopped reacting to new diagnoses a long time ago. The last time that I was truly afraid and shocked was when I had a Pulmonary Embolism in 2018. I survived. They are normally deadly. I remember getting the call 6 months later that I had a rare autoimmune blood clotting disorder and a genetic clotting disorder. Blood thinners for life. I didn't react. I literally laughed on the phone. Not because it was funny or not serious, because I couldn't take it anymore but I also wasn't even surprised that something else was wrong. Another one to add to the list.

I had internal struggles when I thought I had lung cancer in 2021. But I knew that I would fight it and I had a plan to be strong like I always am. 5 months later, I found out that it was Sarcoidosis. Also rare and can be deadly. It's a terrible disease. Add it to the list. Later in 2021, Autoimmune Polyneuropathy all over my body - small and large fiber nerve damage everywhere. I was just happy to get it over with and have it in writing finally, rather than my doctors and I just assuming that's what it was. I seem to get a new diagnosis every 12 to 24 months. I've grown used to it.

Today was different. I'm at my max. I just had my nerves burned from my spine a week ago. I'm still in recovery from that. My doctor gave me steroids while I was under without my knowledge or consent, knowing I'm allergic. I don't know why this is my life and why I was chosen to live in my own personal hell since childhood. I started crying while the doctor was talking about treatment options. The idea of going through that again is what set me off. I told her that I barely want to keep fighting now. I don't want to make my life harder.

Yes, I get depressed very often in the last year. I'm overburdened and overwhelmed. I'm angry and I'm sad. I am scared. I live one day at a time. Making distant plans is hard for me. When I get my handouts emailed to me for my intensive trauma class 24 hours prior, I don't even look at them. I don't know what tomorrow brings. I'm here today. Everything that is planned must be in my calendar or it's not real to me.

I hold onto those bit of love that I have in my life. That's what keeps me going. My animals and the important people in my life that share love and compassion with me.

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