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Long Term Lung Cancer Survivorship....It's Lonely Out Here!


poloz

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Hello Everyone!

I'm not new. In fact, my Adenocarcinoma (Pancoast) lung cancer journey began in October 2004. I was diagnoised at State IV. Mets to chest wall and liver. I was given 2-6 months with treatment and 1 to 2 years with treatment. I've had reocurrences. One time, I was told to get my affairs in order. Yes, I'm still here. Thank God. It started off crazy (as I would imagine, everyone else did too). But, what I am searching for are connections.  People like myself. Someone to relate to. Anyone who has the same issues (or close) as mine. I have had my share of issues over the past (soon to be 17 years). The feelings, the thoughts they keep coming back to a word I discovered a few years ago. Guilt. Then there is the treatment. I'm still on Tarceva. I've been on Tarceva since 2005. Sometimes I feel stuck in time. The world moves on. My issues might be unique. I don't know. Sooo....

I have lost so many friends and family members during this 17 year survivorship. I can no longer count them on my fingers. I meet people at my checkups and I want to encourage them. But, I know in my heart they are asking WHY NOT ME??? You see, there is no reason. There is no medicine. No answer. Nothing I've done or didn't do. It was all out of my control. I've got nothing to say. No support. No advice. No secret. Nothing. That leaves me feeling like a failure. Like I'm not doing what was intended for me to do. But, what exactly is it I'm supposed to do? 

Doctors see me at my checkups. They read the scans. They check out new areas of interest. They say I am a miracle. I go back and forth between 3 month checkups to 6 month checkups and now again I have graduated to a yearly checkup. Please do not misunderstand, I am grateful. I am scared too. I am always scared. 

When I was diagnosed, my son was 6 years old. I grieved all the things I would miss. I have a 9 month old granddaughter now. Imagine that. I have everything to be grateful for. Yet, this old feeling seeps in. I think it's called Survivor Guilt. And I know it's a lonely place to be because there aren't many. I want more! I want you to know that I cry for you. All of you. I am so sorry that many of you are going through the worst fight of your life. Make everyday count. That's all I can do. That's all I did. I talk to God alot! I no longer take things for granted.  I am not a miracle. I am so much less. And Everything and Everyone I see is so very beautiful and so precious. Life has it's share of hard times. This body, this Cancer did not define me! I continue to turn it into a Blessing. Not an End. My body may end one day, but I won't. 

Since I am always searching for the Why (because I am human) I ran across this and I thought it would be worth sharing...

Isaiah 57:1-2 King James Version

"The righteous perisheth, and no man layeth it to heart: and merciful men are taken away, none considering that the righteous is taken away from the evil to come.

He shall enter into peace: they shall rest in their beds, each one walking in his uprightness."

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I have viral cardiomyopathy, a severe heart condition. Went in hospital for a scan. Heart has gotten worse but they found a mass in my lung.   Lung cancer.  For two months they checked everything in my body. I have cysts on my liver and pancreas which I have to have checked out every 6 months. So after 2 months of stressing the finally removed the cancerous part of my lung! The immediate relief was amazing but then I started working it would come back. My doc said I most likely have PTSD now from the shock of it all. I didn't suffer with it until after the surgery. Now I have pain where the chest tube went in. Sore ribs and nerves could last a year.

Like you there is survivors guilt, most lung patients don't survive and mine was there one minute and gone the next. I have a 15percent chance of it returning in the next 5 years then it decreases. So I'll stress for 5 years because that 15 percent might as well be 99.9 percent.  It's hard to explain to people but I see you understand. Besides a bad heart I also have Intercostal Neuropathy and fibromyalgia. So I am in pain a lot. Then I got cancer on top of it all. For those 4 months I was a total wreck, had a breakdown. I don't know how you have done it for so long 

God Bless You,

Kathie

 

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Sharron,

I disagree with you on one important point.  You do have something positive to share.  Your experience!  No, not everyone will survive the way or as long as you did, but there are many out there that do.  And hope is something we all need sprinkled over the tragedies in our life or else we give up the will to fight and live and then the chance of death is greatly increased.

So, let people know what you've gone through.  The good, the bad and the ugly.  Show them what a survivor looks like.  True, you didn't control the treatment or the molecular level of your protocol, but you were in control of your mind, heart and spirit and that had to surely play a role in your long-term survival.  So, bring hope to others.  You have a good story to tell.  

Lou

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Thank you for sharing your story, I found it uplifting.  One of my biggest fears is that I will leave my 16 year old at such a young age, and never get to share to goodness to come in her life with her, but as you say, I will not give up hope!  Stay well and keep us updated :0

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Thank you for sharing. As I read your story it brought tears to my eyes.  It is good to hear the journey of survivors, it provides hope for those that are continually struggling.  I too talk with God daily.   I have been diagnosed a stage 3a. My oncologist treated me as a stage 4 end of life recently approved trial therapy- Premetrix, Cisplatin and an immune therapy regimen before removing the growth through a lobectomy.   

I have my follow up appt with the oncologist coming up in early July to discuss the test results of the growth and 12 lymph nodes.  

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