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Old 10-21-2004, 06:34 AM   #1
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Location: Rochester, NY USA
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sawbuck44 HB Usersawbuck44 HB Usersawbuck44 HB User
Lingering questions re: stage iiib nonsmall cell

My family has lingering questions about the treatment my brother received in the last few days. The week before he died my sister took him to get the doctor's to get him a blood transfusion because he was really weak. After that didn't help they decided to admit him. He was in the hospital for four days when they put him in critical care unit. They did tests and wanted to do another cat scan which my brother refused due to not being able to lay on his back because he could not breath. Initially, when we got the call that he was being moved back to a regular room, we got excited. Wrong thought. He was being moved because there was nothing left they could do for him except keep him comfortable. He was back in this room for two days when we noticed his face was starting to swell and no where else on his body. He was getting intravenous fluids and was not going to the bathroom. They did not put a cathedar in at any time during his stay. He was eating but not having bm's either.

At one point, the doctor came - it was Tuesday night - and me and my brother's daughter-in-law asked the doctor why he was swelling. The doctor did not look phased when he told us he had no idea ?!??!! Even the nurses didn't know. One actually told me she thought it was the way he was laying. When we got to hospice they didn't give him any intravenous fluids and the reason they gave us was that he was too swollen because the fluids weren't going anywhere. They put a catheder in him that night.

Let me back up to Wednesday from noon to 6 - then he went to hospice where he was until he passed away at 3am Thursday morning. I spent that afternoon with him on Wednesday. He said on a scale of 1 - 10 his pain was a 6. They were giving him meds then every 2 1/2 hours. He slept a lot did not eat and it took a lot of effort for him to talk. I told him that I had asked the nurses about him because yesterday he was able to talk and eat and they told me that it was because they were giving him more morphin. When he did sleep he was doing that nasty snore. Once he had been sleeping and the next thing I knew he sat straight up and told me to get another chair. I was confused and asked him why. He said he wanted to put his feet up. Now I realize and was stupid to not realize it then - that this restlessness happens when the end is near. By the time I gave him the chair I was sitting in and he got his feet up and then I went to get another chair, when I got back to the room two minutes later he was laying down again.

Okay on Tuesday night we were told that he had a few weeks to a few months. When I was ready to leave that Wednesday about 4 my sister who was the proxy told me that I probably won't want to leave. She then told me that the lady who set up hospice told her that he only had a few days. I went to get my parents (their car wasn't working), we didn't want to tell them on the phone, but they were still anxious when they saw me walk into their house. My mother and father talked to David and my brother told my mother 'it's time ma.' It was very tough. When he was wheeled out to the ambulance to go to hospice he was looking at his great-niece 1 1/2 years old , all the way out. My oldest sister had come from out of state for what was supposed to be a surprise visit/reunion. Little did we know it would be for his funeral. I thank God that she was able to say a few words to him that day.

Unfortunately, my oldest sister got lost in the parking garage (she had gone out to the ambulance and then came to the garage and forgot where my other sister (the proxy) had parked) and it took us about 15 min longer than the ambulance so no one was there when my brother got to hospice. He was saying please tell me this is a nightmare and they gave him more morphin. He had just had some not even an hour before. By the time we got to hospice he was out and there was no way he was waking up. I know they probably had to give him the morphin to calm him down but I so wish that we had time to communicate with him.

I guess my questions are, has anyone had experience with the swelling of the face and especially eyes where he couldn't even open them to see without effort. Also, I know that it is very hard to determine time left but how could it have happened so fast? It went from 'a few weeks to a few months' on Tuesday to ' a few days' on Wednesday and then it was only a matter of hours?!?

This is part of the grieving process. I think we are all looking for closure on these lingering questions. It won't change anything now but maybe we, along with others, can learn how to handle things in the future.
If you open the door even a little bit - the devil will fling it open. Keep it closed with prayer.

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Old 10-21-2004, 08:52 AM   #2
Join Date: Aug 2004
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txchaz HB User
Re: Lingering questions re: stage iiib nonsmall cell

I have had that lingering question for a long time Sawbuck. Both my parents were given 8 months to a year to live when they were diagosed. My dad passed in 9 months and my mom lived two years. This did not happen the same year they passed 10 years apart, at one point my mom was taking a chemo treatment in the room my father passed away in. I think it boils down to no one really knows how that works, my dad lingered in a coma for weeks, my mom lingered days. Both caused bye smoking I just don't understand why people smoke or continue to smoke. The pain it causes their family is devistating. I guess I am getting off the quesiton. I pray that peace comes to you and your family to understand that you cannot understand. I am sorry if I cannot help you in your quest.

God bless you and yours

Old 10-21-2004, 09:11 AM   #3
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Location: Louisville, KY
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renee_ky HB Userrenee_ky HB User
Re: Lingering questions re: stage iiib nonsmall cell

Sawbuck- Similar things happened with Scott as well. Once his organs started shutting down, he did have some swelling, because the fluid was not going anywhere. Which is why he had a catherdar. As a practice, Hospice does not give patients IV fluids, they only keep them comforatble. Thsi is why they would have given him so much morphine. before Scott dies, he did not eat or drink for a week, he had no hunger and no thirst. The body takes over and sustains them naturally, so that they are comfortable, towards the end of life. The endorphins kick in, and less pain medicine is then required, this is how it was for Scott.

I know your brothers death is very hard for everyone. I have the same questions about Scott. But what I do know (as should you), I was there, I did everything I could to make his journey as best it could be. I remember all of the time you spent with your brother. If you are wondering if you could have done more, no, you couldn't. Please do not question things now, you will only make yourself bear a burden that does not belong to you.


Old 10-22-2004, 08:14 AM   #4
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Join Date: Oct 2004
Posts: 35
Re: Lingering questions re: stage iiib nonsmall cell

SB 44 :

I'm sorry to read about your loss. I came to this forum in search of an answer to my wife's mystery symptom of swelling and redness around her eyes. And, much to my surprise, I find your post. Please read my post.

Best to you.


Old 10-22-2004, 07:59 PM   #5
Join Date: Oct 2004
Posts: 8
Leslie Mac HB User
Re: Lingering questions re: stage iiib nonsmall cell

SB44 and Renee,

When were your loved ones diagnosed? How long did they live after diagnosis?

(worried for Mom)

Old 10-23-2004, 05:37 AM   #6
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sawbuck44 HB Usersawbuck44 HB Usersawbuck44 HB User
Re: Lingering questions re: stage iiib nonsmall cell

Hi Les, sorry we have to "meet" in such a devastating forum. But I am glad to be here to support whomever needs a shoulder. My dear brother, 49, was diagnosed 8 months before he passed away. I have other threads on this board if you'd like to read his story. This disease is so much in the 'unknown' zone that even some doctors don't have answers for our questions. Research on the web is a God-send. I don't know how we lived without it! God Bless.
If you open the door even a little bit - the devil will fling it open. Keep it closed with prayer.

Old 10-23-2004, 09:52 AM   #7
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renee_ky HB Userrenee_ky HB User
Re: Lingering questions re: stage iiib nonsmall cell

Les- My husband was diagnosed with extensive small cell lung cancer, with metastisis to his liver, lymph nodes, left hip, brain & spine. His diagnosis was on December 26th, 2003. Scott passed away almost 9 months later, on September 18, 2004.


Old 10-29-2004, 01:45 AM   #8
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Lady_J_1_01 HB User
Re: Lingering questions re: stage iiib nonsmall cell

Sawbuck, I am sorry...I feel your pain....
My mother was in and out of a coma for almost two weeks. Her kidneys shut down, her eyes actually wept, and had a thin 'bubble' of fluid over them. Being human we grasp and fight with ourselves over what I could have did different. I still have my moments, thinking maybe if I would have did this, or demanded that....maybe if I would have demanded they stop the hourly morphine she would have talked to me, or in some way would have came back to me for a time longer!!!
I cry.. become angry...I greive...I get anxious and play it over in my mind.. questioning if I missed something...all the events and how it all happened so fast....
I miss her so, she was my rock...Did I do all I could for her??Did I fight as hard as she would have for me... I beat myself up......
I know this gets me no where.. but the hurt and loss is always just below the surface....
I know at the time I did all I could do in the situation just as we all have...
My sons faith is strong, and when Im feeling those feelings, and struggling with "why" he reminds me .."mom, from the time we are born, God has HIS plan for our life, and although we choose and live as we want it still dosent change the fact that HE has the time set when he will bring us home......
Please take care of yourself sawbuck. Your going through so much its easy to become sick yourself. Thank God you had the time you did with him (although it is never enough). Ill continue to pray for you. Mattie

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