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teresa.t

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Diagnosed with NSCLC in march of this year. 4 months after caring for my precious mother who was diagnosed with the same and passed away 9 months after diagnosis. I had surgery and am living with less half a lung. I am terrified even though my 6 morning scan was clear. I cry EVERYDAY from grief and fear. My family has pushed me away telling me to go a support group when I clearly stated my need of their love and support so here I  am. I  have no birth family for the holidays, not even invited.😭 I  can't wrap my head around all this, it's heartbreaking. I feel so uncared about. Being the caretaker of this family, I need them now only for love, hugs and a ear/shoulder. I miss my mom although I am glad she doesn't have to see what I am going through. They call me a survivor but I need help living in that space rather than terror EVERYDAY. Ty for listening if anyone is. 

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T,

Welcome to our forums.  You're not alone anymore.  We are a group of lung cancer survivors who can understand all that you are going through.  Like you, I lost my mother to lung cancer and was diagnosed with NSCLC myself in 2019.  I had surgery, (lobectomy), and have had clear scans since.  Unlike you my mother had passed away years before my diagnosis.  So, while my fear, disbelief, and loneliness were much like yours I didn't have both tragedies so close together.  I can tell you that even after my initial scans I was still scared and worried each and everyday about a recurrence and I was losing the joy of living.  With the support of the great folks on these forums I came to realize that, there are many survivors out there and while this is still a deadly disease it was no longer the automatic death sentence that it once was.  I also realized that I could choose to live or that my survival could just be a depressing, lonely time.  So many here cherished each day of survival that I chose to follow them and live, determined to use my life dedicated to others in service.  I reconnected strongly with my children, dedicated a large amount of time to supporting others with this disease, joined and am a leader in an Alzheimer's Caregiver Support Group (my wife is a sufferer presently in hospice), and I sponsor others in Al Anon.

So, three years after my diagnosis I am still here.  My last scans (August of this year) were stable and NED (No Evidence of Disease) and I'm enjoying my life again.  I share all this with you not to say that this is easy, but with the help of others we who have suffered this disease can come to terms with it so we can enjoy life.  We learn to take care of ourselves (eating, exercising, etc.), connect with others (such as you are doing here), and not be afraid to reach out for help anywhere.  For example, my primary care physician was/is well aware of my disease and the psychological challenges I went through, and she helped me with a short-term medication treatment as well as suggesting I speak to someone for additional insight.  I did both and each step I took put my life into a better focus, restored my psychological well-being and sense of well-being.  You deserve the same.

Last point; I'm aware that LC is a disease of high recurrence and lethality, but right now I am healthy and living a life of purpose with an acceptance of whatever the future may bring, you can have that as well.  Please feel free to ask any questions and also take a look at some of the other information we offer here at Lungevity.  Please take a look at our Lungevity Support Services by clicking here.  Stay with us, join in the conversations, and reach out for the help you deserve.

Lou

 

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teresa.t,

Please contact our Registered Nurse Navigator Kristi (kgriffith@lungevity.org) and or our Lung Cancer Social Worker Angie (AJames@lungevity.org). Both are members of our Patient Services Department and stand ready to help you deal with our horrible disease.

Stay the course.

Tom

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Teresa T., 

I'm pleased that you have indeed found our LUNGevity community forum and have reached out.

Absolutely NO ONE, has to walk this path alone; our community is here for you today and each day going forward! I'd love to hear from you, I can also be reached via phone/text at 312.639.4529.

As Tom mentioned, Angela and I are both Navigators and are available for your support, information sharing and much more. 

Let's connect soon, I look forward to hearing from you. 

kmr  

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Teresa,

Let me answer your questions:

1. How do I do it?
Just give Kristi a call.  She is a dear and loving person who will connect you with resources to help you on this journey.

2. Why?
Because you deserve to be surrounded with support and caring and there are people here who will do that for you.

Lou

 

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Hi Teresa and welcome. I'm sorry you're having a hard time.  This is a terrible disease and having recently lost your mother to it makes it even harder. And then the holidays, which can be a stressful time for anyone, especially without family support. But hang in there-- things will get easier. You've taken the first step by reaching out to us. We have all been through, or are going through, lung cancer either as a patient/survivor or a caregiver/family member, so we'll have some notion of what you're dealing with . We'll support you however we can. Please reach out to Kristi as Lou and Tom suggest.

My mom also died of cancer, but many years ago. I've had three separate primary cancers. Lung cancer was the most recent, in 2016. I'm doing well today and have a good quality of life. I'm 77 and still work part time. I found these forums after my lung cancer diagnosis, when I couldn't find a lung-cancer-specific support group locally and the folks on here have been a really important support for me and I hope that  they can be for you too. Keep us posted.

Bridget O

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