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Cancer: Lung Message Board
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Old 09-13-2004, 07:22 PM   #1
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Details

My mother has been diagnosed with small cell lung cancer. All the information I can find deals with treatment. My mom has opted for no treatment. I don't know what to expect, what is going to happen? She seems to be slipping so fast, diagnosed 8-4-2004 and already almost bed ridden. How much is drugs, disease, depressions? Has anyone been through this?

 
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Old 09-14-2004, 07:09 AM   #2
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Re: Details

Yes Sanderlings you will find alot of people that have and are going through this. Both my mother and father passed from this awful disease. You did not mention which stage she was in, but from her symptoms or her being bed ridden already it could be quite advanced. My moms lung cancer spread to her brain, at one point she looked at me and asked why I was holding her and her son prisoner. She actually thought I was a jailer in Mexico somewhere, she had never been to Mexico. Something no one shoud have to witness. How much pain medication is she on? What type? My mom of course with her advanced cancer she was on Morphine, awful side effects, holusionations (sp) she costanly seen big spiders on her bed. When we would give her something to settle her down she would sleep but then we felt guilty cause the sleep was taking time away from us. One thing to note she only had radiation and lived two years after her diagonsis. I will tell you attitude is everything, if she feels she is dying or is transfixed on dying she will. Attitude will not always help there are plenty here that can attest to that. Hold onto the moments you have. Have the doctors given her a prognosis? You will find a lot of people here that will help you with whatever they can. I wish I had know of this place when I was going through it with my mother. Prayers to your family.

Chazzzzzzzzzzzzz

 
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Old 09-14-2004, 08:17 AM   #3
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Re: Details

Thanks for the response. My mom was diagnosed with limited and the doctor sounded like he could do so much for her. But she is determined to die, as you mentioned. She wants no treatment, just for it to be over. She does seem to be sleeping all the time. She is on duragesic patch, percoset, and valium. We have to give pills every two hours, I need to change that, it is exhausting us. I wish I knew whether we had 3 days, weeks or months. After reading all the past posts, I guess everyone wishes for that info. I am so glad to have found a place to talk. Thanks again.

 
Old 09-14-2004, 09:10 AM   #4
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Re: Details

Did they say what stage she was in or if she had small cell or non-small cell ? I urge you if the doctor is doom and gloom or gives no hope find another doctor or oncologist it could make all the difference in the world, weeks could turn into years.

 
Old 09-15-2004, 07:34 AM   #5
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Re: Details

She has small cell - limited. Actually the doctor is full of hope and optimism, it is my mom who is doom and gloom. I cannot even get her to go back to the doctors and when her hospice nurse comes to her house it puts her in an angry funk for hours. I did get her some anti-depressents, so hoefully she will lighten up a bit. As for now, there is no fight in her at all. I understand this and respect her wishes, I just wish, like everyone on these boards that I knew how long I had. It is so hard to relax and visit, it seems I am always looking for signs.

 
Old 09-15-2004, 07:53 AM   #6
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Re: Details

Quote:
Originally Posted by sanderlings
She has small cell - limited. Actually the doctor is full of hope and optimism, it is my mom who is doom and gloom. I cannot even get her to go back to the doctors and when her hospice nurse comes to her house it puts her in an angry funk for hours. I did get her some anti-depressents, so hoefully she will lighten up a bit. As for now, there is no fight in her at all. I understand this and respect her wishes, I just wish, like everyone on these boards that I knew how long I had. It is so hard to relax and visit, it seems I am always looking for signs.
Sanderlings,

I am sorry for what you and your family is going through with this. I am not familiar with the limited part of the small cell. Has the doctor given any prognosis? It may be all the drugs she is on that is making her be in such a funk, what does the doctor say about her mental process? Attitude can make a big difference, not always but sometimes. I pray you find an answear, it is so hard to watch someone deteriate before your eyes. Have you though about some group help for you ? If your mom won't help herself there are things you can do to help yourself.

Prayers
Chazzzzzzzzzzz

 
Old 09-16-2004, 01:15 AM   #7
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Re: Details

welcome sanderlings!, your amoungst people who are 'their'' or have been 'their' as you...we all share a common thread as this states. I read your notes, and my first thought was, I should jot you a note of encouragement, and mention a few things we did..... When we found out about the cancer, we cried, didnt want to do much of anything except prepare for the worst. And then cry somemore... It was all out of our 'control' we felt helpless.
Cancer was like a for sure death sentance,,, BUT now a days their are more and more survivors!! Im not sure how old your mom is, but she may feel as I felt at 44... hopeless over the DX...
Given time, and allot of research I began to realize it isnt over till the fat lady sings... I grabbed the bull by the horns, and reached out.. as you have on here... I would go back to Clint and tell him the stories, the hope...he would mumble, sleep, want to just prepare where he would be burried... then I got angry.... I refused to give up.. I told him if he didnt have it in him to fight.. then I would fill in the gap and fight for him till he could join the ranks...I refused to watch him fade before me.. and then have the nerve to ask me to watch him do it...
I pulled all stops, I bought comedy vidios, read, prayed, talked to people, literally drug him outta the house... (lets go see this sunset, we only get a certain number, Im gonna make sure you dont miss any of yours!!.. then he came)
It gave me oppertunities to talk to him about the many more we could see if he would be willing to follow what the Dr. thought may work. We talked about the fears of the pain etc..verbalizing it helped him work through what the possible outcomes may be. When he would begin to 'shrink' into the depression I found babying him would only add to the depression,(and I love to baby him *smiles*) Its so outta character for me to be 'tuff' but I knew I had to make him know he was worth every ounce of energy to fight this. We used a game of "tokens" so I wouldnt push to hard.. he would tell me hunnie i have 10 tokens to use today (meaning the amount of energy he had)and we would pick and choose what we could do or acheive that day... others 4-5 tokens.
Im sure your mom is depressed, as I was.. (and still am on and off)So not only did/do we fight with cancer, but also depression, fear...finances....all the what if's and unknowns......
I dont pretend to know the answers..we are still in the 'ring' ourselves. But I do know how we made it to another day, another sunset. It may not work for you or your mom. Clint resigned to DIE... and at first I agreed.. why fight, go with dignity I thought...So He slept, didnt want to eat, wouldnt even answer the phone (almost like he had dies already)then I thought the dr's are saying you have 26% to live... WHY CANT YOU be one of the 26?? how will you ever know??
Then we planned his funeral,the songs, the article for the paper (his eyes lite up as he recalled all he had did in his life) his will, did up special trinkets, boxes of stuff for the kids, notes to those he had to 'tell tales to' , power of attorney incase he ended up unable to talk or decide for himself and once we got it all done. We then talked about all the what ifs..what if Im a burden to you, what if we use all our savings how will you live, what if Ill struggle in pain, we talked to hospice and they calmed our worries. all the hidden things we may think of but dont put to words...and ya know what happened for us??
It changed, it lessened the fears, he began to realize what he had done in his life and how special and precious he was... thier is only ONE clint....and he realized it. He did have control,he got his house 'in order' and then it was like he could breath.....he was finnally free to live.....He did the surgery and we have struggled, we still have our days of sorrow especially when he is unable to do what he use to like to do...(he was nsc stage 3b)
Maybe your mom just needs someone to help her work through getting some of her concerns taken care of like her will etc?...and time, time to deal with this life changing news.... we all handle things so differently....
Please do take care of you. Thank God your mom has you! I wish you well sanderlings,sorry I babbled...take what you can use and leave the rest..*smiles* Youll both be in my prayers.

 
Old 09-16-2004, 05:19 AM   #8
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Re: Details

Sanderlings- First of all, I am sorry you have to go through this, and sorry that your Mom has to suffer it. My husband has extensive small cell lung cancer. he did take treatment, and they bought him 8 good months. Now, he is in hospice care, and can die within hours to days, they are unsure, because of his age and strength. The good thing about hospice is, I can keep him comfortable, at home. He has what is called a "pick line", and I administer his medication through this line every 3 hours. Scott gets Methadone , Ativan and Haldol, this is a good combination. He sleeps most of the time, but when he is awake he is coherant, and he knows who we are. This medication does not have the horrible side affects that he had with Morphine and Diladid.

I wish you the best.

Renee

 
Old 09-16-2004, 09:17 AM   #9
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txchaz HB User
Re: Details

Sanderlings, I found this info on the web, you cannot post websites on these boards so I cut and pasted the information hope it helps.
Chazzzzzzzzzzzzzzzzzzz

Limited Small Cell Lung Cancer
About one third of patients with SCLC have limited disease at initial diagnosis. This stage is highly responsive to a combination of systemic chemotherapy and radiation. Substantial shrinkage of tumor occurs in as many as 80% to 90% of patients with this treatment. Complete clinical remission can be achieved in 50% to 60% of all patients with this stage of disease. Recent trials of chemotherapy and radiation show median survival times of 15 to 18 months, 2-year survival rates of 30% to 40%, and 5-year survival rates of 10% to 15%

 
Old 09-17-2004, 02:14 PM   #10
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Re: Details

Thanks Chazzz - but she won't consider or allow us to talk about any treatment. I can't even get her to go back to the doctor. She just wants to be home. She is so angry all of the time. It is hard to be with her and harder to be away from her. This is so horrible.

 
Old 09-17-2004, 02:23 PM   #11
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Re: Details

Thank you so much for your replies. They mean so much. Lady J, we are doing all those things you mentioned, funeral prep, power of attorney, will, etc. But you have given me hope, and even if she still refuses, at least I have something I can do - try to encourage her and make her feel valuable enough to live. Renee I am so sorry for where you are at. I wonder daily if I am in that place, days left. It is so hard not knowing, days, months????
I am so glad I found you all.

 
Old 09-17-2004, 02:24 PM   #12
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Re: Details

Sanderlings,
This is my own opinion, You don't want your last days with your mom to be bad. Accept that she does not want treatment and make her as comfortable as possible, ask her if there is anything that she needs to do or say or anyone she needs to see before she goes. Tell her you will miss her but assure her that you WILL be ok. My mom battled lung cancer for 5 years before she died, she had treatments for the first 3 years and it was a living hell. When her time came I was with her and holding her hand. When she passed she had the most angelic look on her face, a look I haden't seen in so long. My prayers are with you and your family at this difficult time. Please sander, if there is anything left unsaid, say it now. Tell your mom how much you love her. Try to help her not be angry, she may just need your support in dying. May the angels watch over you.
Lisa

 
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