I know I have not been on for awhile but we have been have a rather hard time. My Dad has tried the second line treatment (irenotecan and carboplatin). He has gotten weaker to the point the he can hardly stand alone. He has a really hard time eating now because he can't swallow well. The tumor is pressing on the esophagus. He dehydrates and that effects his mind. It is heart breaking. We infuse him 4 times a week but he swells, so we have to be careful. He just had a cat scan to see if the treatment is working. It is stable. No worse no better, Dr. suggested third line Taxol. Cancer is stable but he is getting weaker. My Dad is tired he said no more. He said he has worked hard his whole life he just wants to rest now. This is the hardest thing I have ever had to experience in my life. How do you watch your parent die? I don't know what is better this way, so you can prepare yourself or quickly. I just know my heart is breaking and every time I look at him I know what is coming and I can't help but cry and I have to try not to. It is so hard.......
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My Dad
- By DESIGRAM
- Posted March 8, 2009 at 10:00 am · 23 replies
- In Small cell lung cancer
- Shared with the public
Explore topics in this discussion:
Cancer Taxol Pain Heart attack Hospice care Carboplatin Stress
23 replies
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- Newest first
- By pattyp1
- Posted March 8, 2009 at 12:03 pm
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honey - let's talk - I was exactly where you are not so long ago - and I had to sit down and have a talk with myself - I honestly used to believe that my fondest wish would have been to have my daddy pass quietly in his sleep when it was his time. here's what I figured out - it might help you - God gave me 151 days to say goodbye to the sweetest, most wonderful man on this planet - every moment of which I treasured - when it was finally his time, there was nothing un-said or un-done. each one of those moments, I was lucky beyond measure to have my daddy. I went to every single doctor's appointment and chemo session. I gave him pills every two hours. and I loved every second.
what it boils down to is that this sucks - and you have a choice to make - you can either look at him as living or dying ... in the broader scope of life, today is a day where you're lucky as all get out to have your daddy. it honestly is just as simple as that. based on the simple fact that years from now you'd give anything for just one more moment with him - my suggestion is that looking at yourself as lucky and blessed is the way to go...
now....go blow your nose, splash some water on your face, and make you and your daddy a big milkshake with two straws.....
many hugs - and hang in there....
Pat
- By scared1
- Posted March 8, 2009 at 12:17 pm
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Desigram- I am going thru the same thing you are. My dad who is my hero was diagnosed with stage 4 in November. He was given 4-6 months. It is so hard to think about my life without him....Pat thanks for the post....I try to do just that.
- By dylanb
- Posted March 8, 2009 at 12:24 pm
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I am so sorry for what you are feeling, I feel the same way. My dad has SCLC and is on his second line. His is stable as well but he is still fighting pretty hard, still goes to work, just is very tired. It sounds like maybe your dad just needs a break. My dad's onc gave him a 6week break in between 1st line and 2nd line and it did wonders for him. He was back to himself. They are going to give him another break after his next treatment too. Why don't you let him take a break, see if he gets his energy back, maybe clear his head and then maybe he will be up to trying again. I know you want the people you love to fight at all costs but if it is too much on their body, we have to respect that. I think you would rather have quality time with him right? I know I would. I treasure every minute I have with my dad and I cry every day too, several times a day but I know he wants to be coherent, he couldn't stand it if everyone had to do everything for him and he was too weak to even get out of bed. He wouldn't want to be in that way at all and I think he deserves whatever he wants and I am sure you feel the same way about your dad! So hang in there, don't let him give up but maybe let him take a break.
- By DESIGRAM
- Posted March 8, 2009 at 1:24 pm
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Thank you all for listening to me. I feel a little calmer. Today my Dad won't even get out of bed nor put his teeth in. He has decided he wants to go on hospice because he wants to die with dignity. I have been reading what are the signs of approaching death and I think it is getting closer. I just hope he doesn't suffer. I know they will keep him comfortable. Thanks Gigi
- By jmichelle
- Posted March 8, 2009 at 1:36 pm
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Hi Gigi...
Wow... this was a tough post to read... I just lost my Mom to SCLC a month ago. I know the pain and heartache that you are feeling all too well.
I think calling hospice is a good idea. They can make sure his needs are met and make him comfortable. He is worn out from all of the chemo and his body needs a break. I can't believe that the doctor was talking about another treatment right now with him being in a weakened state.
I agree with the others that at this point you need to consider quality over quantity not only for him but you as well. Cherish every day and leave nothing unsaid. If his wish is to die with dignity then you have to honor that however hard it my be for you and the rest of his loved ones. Trust me... it will be difficult but knowing that you did what HE wanted does make it a little easier. My heart goes out to you. Take care of yourself as well. I will keep you both in my prayers.
Jodi
- By scared1
- Posted March 8, 2009 at 2:02 pm
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Gigi- My dad has been on hospice for a couple months. Call them asap. Your dad can always go off hospice if he wants treatment. They are wonderful, and knowledge of whats going on really helps the stress level a bit. Please keep us updated.
Thinking of you,
K
- By pattyp1
- Posted March 8, 2009 at 2:40 pm
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hey Gigi,
I know.....if it helps, my daddy passed very peacefully - the doctors were very good to him and made sure he had both his dignity and no pain that was obvious - he slipped away in a whisper squeezing my hand - it was much harder on me than it was on him -
know that I'm here with you on your journey whenever you need me....
hugs
Pat
- By irmaly
- Posted March 8, 2009 at 3:55 pm
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Gigi, I am so sorry for what you are going through. I lost my Dad to SCLC a year ago. Please, please call Hospice right away. They have access to drugs and techniques that will make your Dad much more comfortable and which will either help your Dad get back up for another try OR help make his passing peaceful. Just to let you know, my Dad passed away at home very peacefully and in no pain whatsoever thanks to Hospice. We had all been through so much, and I have to tell you, I think his passing was worse on all of us than on him.
- By rebaj
- Posted March 8, 2009 at 5:13 pm
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Oh, I feel your pain D. It is an emotional roller coaster for all involved. I will pray for you and your father.
God be with you.
Reba J
- By bluestar30
- Posted March 8, 2009 at 5:24 pm
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Hi Gigi,
I remember asking the same question,was it better to watch my parents suffer for so many months, or would we all have preferred a quick heart attack.
My dad had SCLC and I thought I would die right along with him, it hurt so much to watch him suffer. My mom had NSCLC, which took her much quicker than I expected, I did not see that one coming. I cared for both of them until the end, and now I kind of wander around in a daze without them.
BUT, I can tell you this...I finally know the answer. I am glad I had them for several months before they died. Not all the days were bad, and there were a lots of laughs along the way. We were able to say all the things we ever wanted, and to ask questions along the way,
My dad had in-home hospice, which he wanted...but it was a little hard and scary because we couldn't always support him when he wanted to get up. I am glad for him that he was home....but it was hard for us. My mom was in a very nice hospice place...we thought about bringing her home, but she didn't seem to care all that much...and frankly, they were able to take much better care of her. Things like making sure she was positioned right to avoid bed sores...
What I notices about the hospice place was that we were better able to just be with her, as opposed to being responsible for changing diapers and all that, which I think she preferred. It's important to be able to just sit and be present.
I am not yet feeling strong, I buried my mom 5 months ago...so you know, you have a ways to go...for now, just hold his hand and talk, even if he seems asleep.
I am so sorry for you. I am sending you comfort through the air,
Chris
- By DESIGRAM
- Posted March 8, 2009 at 8:05 pm
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Well once again thank you all. I just got home from putting him to bed. When I had gotten there he was laying there in bed talking to friends that had dropped by telling them he has decided to stop everything, including eating and drinking. When I heard that I flipped. I said I understand you don't want to do treatment but no hydration your organs will start shutting down and that would be very painful. I also said the Dr. said you were stable which he did not remember her saying. Later he decided to get up to go into the living room so when I got him in there I said there you go that wasn't to bad and he said I was being selfish. I said so I am selfish and had to walk away until I could get a hold of myself. My stepmother is going to call hospice tomorrow but both of them are under the impression that they will stop all of his medication, only make him comfortable, and if he doesn't want to eat do nothing about it. I know I have to abide by his wishes but how do you sit and watch it and act like everything is fine with you. Cause it is not. I can live with him not wanting treatment. His cancer will not get better, but I can not watch him not eat or drink and get weaker and weaker because he now wants to die instead of living what life he has left. Am I selfish...........
- By RiaRia
- Posted March 9, 2009 at 12:28 am
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Hi Desi: I too have been in your shoes. My Dad passed from sclc on 1/21. He was under the care of hospice at home. I would recommend you call them, they will help you keep dad comfortable. But still, it was difficult for us to help Dad on our own. It was definitely a team effort, Mom, siblings etc.especially during the last week of Dad's life. Also, he did not eat the last few days, refused everything, only sipping water. Lastly, just sit with your Dad and enjoy every minute. It is not selfish to want him to stick around. Sometimes, the fear of what we were experiencing was overwhelming, but we took one minute at a time. Take care of yourself.
maria
- By Nin7366
- Posted March 9, 2009 at 6:36 am
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Desi
I know exactly how you feel. My Dad is on his second line of chemo, and the doc hasn't given as much hope. My Dad had said before that he didn't want more treatment, but once the onc told him it was active again......he changed his mind thank God. Whats hardest on me, is that my Dad is afraid of death, and always has been. I think of how afraid he must be going through all of this, and I am sure your Dad feels the same way deep down inside. You are NOT being selfish. I don't want my Dad to ever give up. You feel the same way, and its totally natural. You are doing all you can, being there and helping him. Keep spending time with him. I will pray for you and your dad.
Cindy
- By hunmum
- Posted March 9, 2009 at 9:59 am
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I am sorry for what you are going through. I too went through a similar experience. My dad was diagnosed in Oct.08. He was addmited to the hospital on Jan 1 09 (his birthday Dec 31 08). He was very weak and not always in his right state of mind. We found out with no help from the first doctor that the cancer had spread to his brain and was in his blood. He refused the treatment for the little time they could give him and I was devistated. But with that I was able to prepare as much as I could for the inevitable. I spent as much time as I could between my father and my family. I tried to make the best of time and make things comfortable for him. I tried not to let him know I was sad and scared for he knew his time was coming but never let his children know. I think he too wanted to make the time count. He passed away on Jan 28 09. He went peacfully and was in no obvious pain. My dad was a very big part of mine and my childrens lives and it was very hard to be by his side when he took his last breathe but today when I think about I feel that I was able to stay strong because I had the time to prepare. Keep you chin up and be there for him he needs you. The saying that got me through was God would'nt give you what you could'nt handle. My prayers are with you and I will keep you in my thoughts.
- By irmaly
- Posted March 9, 2009 at 11:09 am
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Gigi, my Dad was a fighter with sclc, but in the end, the cancer went to his spinal cord and that was the end of our hopes and treatments. I know how hard it was for him thjose last few weeks (after he got the final prognosis). He could not really walk, but we all helped get him in and out of bed and walk as much as possible. Even though he got to the point where he really couldn't talk, I remember the day he indicated he would no longer accept food or drink. Our Hospice materials had indicated that day would come and that we should not push food or drink on him. It is also normal for your father to pull away from family and friends towards the end. My father was only completely bedridden one day. We were very careful to make sure we were "generous" with the drugs provided to us by Hospice and he died peacefully with his loved ones by his side. Don't take anything personally at this point. Your father is going through the acceptance and realization that this cancer brings.
- By irmaly
- Posted March 9, 2009 at 11:12 am
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Gigi, this may help:
http://www.hospicenet.org/html/preparing_for.html
- By debra1
- Posted March 9, 2009 at 4:37 pm
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Desigram-
I can imagine how hard this is. I have not shared this info because it is really hard for me. I am ext. SCLC, diagnosed 11/06. Last year my 88 yr. old dad was diagnosed SCLC. He wanted no part of chemo. He had radiation to the tumor with success. New tumor and he finished radiation on that about 3 weeks ago. Too early for results. Last Friday he actually told me he is getting some energy back and sounded better. I often wonder which one of us will die first.
Maybe off the chemo your dad might feel better and want to live more. Is radiation only an option?
- By sheilabgood
- Posted March 9, 2009 at 5:15 pm
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I'll pray for you and your family. What's important to remember is that it is his choice and maybe he just wants you to respect it. Dont give up hope. Maybe he'll get rested enough to want to fight again. Of course you are selfish. We are all selfish when it comes to wanting our parents to stay here on earth with us.
- By DESIGRAM
- Posted March 9, 2009 at 9:47 pm
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Thank you all for your kindness. Hospice has been called. They will be starting Wed. My step mother is going to hire someone to stay over night. I can't. I am raising my granddaughter and have to get her off to school in the morning. He ate a little bit today. He was in a better mood so it was a more pleasant day. I told him I was ok with whatever he wanted , and that I loved him. I am going to take one day at a time instead of worrying about it.
Debra, my dad has extensive SCLC with mets to liver,bones and brain. He had 3 rounds of carboplatin and etopicide and did fantastic. Everything shrunk. Then the lesions in his brain started growing, stopped chemo did 14 treatments of WBR. He was without chemo about 7 weeks. Well cancer grew back and spread a lot more. DR. suggested second line chemo irinotecan and carboplatin. 2 rounds no change. That brings us to now. He has decided no more. He is tried. He is to weak to stand on his own. He needs help even going to the bathroom. He does not want to live like this. I really don't want that for him but it is so hard watching it just the same. I told him I will miss him and he said he will always love me. I guess I am glad we have this time together.
- By sheilabgood
- Posted March 9, 2009 at 11:00 pm
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Desi you have so much power and that's what he wanted to see. God bless you all.
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