My Moms Story (SCLC) - Caregivers Please Please read this

[ksleeper99]

My mother was my best friend and hero... she passed away last Sunday, November 27, 2011 from small cell lung cancer, she was 63. She smoked for 40 years and quit smoking 2 years ago. She was never the same after she quit - she was nervous and smoking calmed her nerves. She would say that something was not right with her, but I assured her it was only because her body was not use to being smoke-free - that she had to get use to it. She was otherwise very healthy - did Zumba classes and ate right. I WISH they gave her a chest x-ray 10 years ago - but they didn't. They gave her one in August because she had neumonia and couldn't beat it. We found out August 4, 2011 that she had small cell lung cancer... after an MRI and ct scan, we found out it spread to her lymph nodes, liver, bones and brian. She had spots on her brian and liver and wanted to do radiation right away to the brain to prevent neurological damage. (she showed no signs of brain damage) She would start chemotherapy right after radiation. I WISH WE WERE TOLD THAT she would spend the rest of her time on earth spent bald and throwing up rather than having quality of life for whatever time she had left. But we never dealt with cancer before so we didn't know. We didn't know that when it spreads to the lymph nodes, it usually means that you are incurable even if they try to treat you - we just didn't know. I watched my 140 pound mother go through 3 rounds of chemotherapy. It made her very, very sick and I wish we said "no"! After all, it didn't help. With lung cancer, often times small tumors pop out all over the body... my mother's started with 2 small ones on her back and then there were more. Small ones, big ones and they caused her so much pain. The pain started almost right away and the vomiting. Other patients at the cancer center seemed to do fine with chemo - some even went there on their lunch breaks - my mom was so very sick from it - something we thought was part of chemo, but it turns out it was more the progression of the cancer. Tums, anti-acids, ginger to ease the stomach - we tried it all - she was sick - couldn't eat and was in pain. I rubbed her every night - massage helped. One thing is that my mother never really fully grasped or even wanted to grasp that her prognosis was not very good and this is something I struggled with every day. She was a smart lady and I listened to her tell her nurses that she was a figther and was going to beat the cancer - I loved that she was a fighter and it broke my heart to know that the cancer was probably going to take my mother quicker than she understood (statistically). I am a firm believer in HOPE and prayer. I believe life and death and between the person and God - no one else. No the disease and not doctors - but the person. My mom wanted to live - she wanted to dance more - see her grandchildren go to the prom - eat pumpkin cheesecake. In the 4 months from diagnosis to the last days of my mother's life, my brother, sister and I were there to care for her - hold her hand, talk - and love her. But we watched her suffer so very much. Hospice was good, but not good enough. My mother's pain was not managed properly by the nurse who was comin weekly (yes, weekly)

[dianew]

I am so very very sorry for the loss of your mother. I am a patient and not a caregiver, and so can't understand what it must be like to watch a loved one suffer and not be able to make it all okay. There are many many caregivers on this site who I know will respond soon and have been on the same journey as you and your family. I just wanted to say welcome, and I hope you will continue to come here as long as you need to. The folks here do understand and are so supportive - they have been exactly where you are now.

My thoughts and prayers are with you and your family.

Diane

[Nick C]

It's such a raw deal, to get a lung cancer diagnosis.

First off, I am so very sorry. I can tell by your post (5 years ago, I could have wrote parts of this myself) that this is still so raw and new for you. Loss is so hard. Cancer just sucks.

When you are in the midst of the fight, it just doesn't seem right that sometimes there are not alternatives, or at least no good ones.

No one should be in pain, so why is my loved one in pain and no one can do anything?

My loved one is a fighter, that should be enough!

It is so unfair.

It sounds like your mom was blessed to have you by her side. However, that doesn't make the ordeal and the memory of it any easier for you to digest.

You'll have a lot of emotions now. When you need to get it out, this is the place to do it.

[Joppette]

I understand. I'm in the battle right now, but also cared for my Mom as she lost her battle with this disease. I get it. I'm so sorry for your loss at such a painful time of year.

MI Judy

[D&TM]

Thank you for sharing this. I cried reading your story and am so sorry for your pain.

My mom was recently diagnosed with NSCLC stage IV. I have battled with this decision as to whether she will suvive long enough to have any quality after treatment. I know that sometimes the so called cure is worse than the disease. The Dr. told us that without treatment most only survive 3 months. That news really hit my mom hard. She's always been a survivor. She has survived the most horendous childhood. Her own mother and siblings basically disowned her years ago. Men have abused and taken advantage of her caring nature for most of her childhood and adult life. So, she now lives alone. I live 6 hrs away and go stay with her for her treatments and many days following. She has gone through 3 Chemo treatments and a target radiation treatment to the mets in her brain. The change in her appearance and overall daily abilities have decreased sagnificantly in these past two months. I can't imagine how much worse it's going to get. She has a horrible cough, her left hand shakes ferociously and her thought process is impaired as is her vision. The Dr won't give her a life expectancy based on her own case. He only would tell her what it would be without treatment. I have read the statistics and know that we'll be lucky for her to make it a year. But, I also know there are many survivors and knowing how much she's already survived in her life, I put nothing past her. Of course there is prayer and God's will. But, to see her deteriorate so fast in such a short time I wonder, " is treatment her best option?" Any thoughts out there?