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My how things have changed

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I am so thankful to have found this site and so appreciate everyone on it. Here’s why. On 1/14/91, my 63 year old father was diagnosed with Small cell lung cancer with brain mets after being hospitalized with what they thought was a heart problem. I was devastated. He lived only 5 months. Heartbroken and shell shocked don’t even begin to describe how I felt. And at that time, there was no online support, there were barely any in person support groups for adult children dealing with the horrors of what I had experienced. I truly thought I was going to lose my mind. It took me years to work through my grief. 

Fast forward to 11/4/18. I took my 89 year old Mom to the ER for what I thought was severe dehydration from “the flu”. Things began to happen very rapidly once we arrived. Within about 30 minutes the  ER doctor told me that my Mom was either having or had just had a heart attack and as an added complication, her kidneys were shutting down. Ok, that explains all the activity in & out of her room I thought. While I was trying to process that, they did a chest X-ray which I thought was odd and then took her for a chest CT which again I thought was odd but at that point didn’t question. Shortly after that, the ER doctor gave me the news. My mom had a mass in her right lung & enlarged lymph nodes all of which they thought meant lung cancer. Wait, what? I thought I was going to throw up or pass out or both. I was thrown immediately back to 1991 and thought this can’t be happening again! But no time to process that, immediate concern was back to her heart & kidneys. Over the next week in the hospital slowly she began to recover.  Oncologist came in the last day she was in the hospital & explained the CT scan results again and the tests that would follow. But none of the tests could be done until she was recovered from the heart attack. Finally in January they biopsied her lymph nodes, came back inconclusive. We then waited & waited for the lung biopsy to be scheduled. It wasn’t until I called the surgeons office and told them if they didn’t get it scheduled in the next week that my Mom had decided she wasn’t going to have the biopsy at all and just get on with her life. She had the biopsy the following week.  From November through mid March I couldn’t help going back to 1991 and feeling terrified for what I thought was the death sentence my Mom was about to get. And of course Dr. Google didn’t help my preconceived notion of what was going to happen. We finally received the biopsy results on 3/28 and stage 4 small cell/non small cell lung cancer combo was diagnosed. I went into panic mode and thought back to when my mom took care of my dad over his last 5 months. How will I do all that, can I do what it takes, am I strong enough to do it, what will she go through, what about her quality of life and on and on for weeks. Then I just happened across a website called Lungevity.org and began to read the forums. I couldn’t believe what I was reading, people posting that they are LIVING with lung cancer, people posting HOPE, people posting ENCOURAGEMENT! I felt like I’d hit the lottery! Having gone down this road once before with nothing available, I feel incredibly lucky to have a place where people are sharing their first hand, boots on the ground real life experiences with everything related to lung cancer.  This site is helping me dig my way out of the very deep black hole and is giving me the strength to get through whatever we face for which I will always be grateful for. 

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I’m glad we could be there for you and glad you will be for others.  I’ve been the caregiver and the patient.  Both are equally difficulty.  Hang in there.  

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I am very happy to hear that these forums and LUNGevity in general has helped you in your search for HOPE and your mom's LIFE.  I feel the same way about LUNGevity and was so happy to find it was well.

Take care,


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  • 3 weeks later...

I agree 100% - I'm the caregiver for Ed who was dx with stage 3B inoperable squamous cell lung cancer in May.  He wants to remain ignorant and not read anything about it or it's treatment.  I am the opposite and have read everything there is to read available and still confused.He lost his voice in December 2018 and has remained voiceless since the larygeal nerve is crushed by the tumor.

He starts actual treatment of cisplatin and etopiside on the 29th - so we will know first hand what is what but the fear of unknown is horrible, reading what everyone else has and is going through and all the suggestions has alievated some of the fear - so thankful.

So thankful to read positive outcomes as well - gives us both much hope.  thank you all.

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