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SCLC Terminal Diagnosis DENIAL


tlsher

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My mom was diagnosed with stage IV SCLC in November.  Given just weeks to live without treatment.  Did one round of chemo and then decided to stop treatment as it made her so incredibly sick.  At the time of diagnosis, PET scan revealed cancer in left lung, liver, adrenal glands and pelvic bone.  Large areas of cancer, not just spots.  We decided, along with her doctors and her, that the most humane thing to do was let her live out her days more comfortable than living like she did with chemo - it was horrible (blood work came back poor - increasing liver enzymes, poor kidney function, among many other things).  Dec 3 we stopped treatment and oncologist told us she would live about a month once treatment ended - now here we are Feb 5 and she is still alive.  Hospice was brought in Dec 4.

Now, she is very weak, shakes sometimes uncontrollably, can not walk unassisted, down to 80 pounds, appetite decreasing (can only eat very soft foods now), having a lot of difficulty swallowing, incontinent, bleeding vaginally and rectally, her eye site is very compromised as sometimes everything is dark, tons of fluid retention in legs, face and abdomen, sleeping approx 18 hours a day, very disoriented at times, incredibly jaundiced . . . and absolutely refuses to believe this disease will take her life.  She pretends this is not happening and will have no part of discussing it with anyone.  We have tried but she just shuts it down, almost immediately.

Our family has resigned itself to the fact that the end is near and we are all there as much as possible with her and to help my dad care for her, and allow him to take time for himself (which he will not), hospice nurses are in a couple times a week, aides come in a few times a week to help with bathing, personal care, etc.

I know this is her journey . . . but watching her go through this is so tough, especially when we can not have a conversation with her about things.  Is there anyone she wants to see?  Is there anyone she wants to talk to?  Anything she feels like she needs to do before she dies?  We have had the hospice social workers in and chaplain and its always the same thing.  Nothing from her.  She doesnt even listen to them.

Any suggestions on how to help her let go or find some peace?  Suggestions on how to help this situation?  Shes one tough nut, I will tell you.  She is suffering so much now and again, I know this is her journey, but I feel like this suffering is getting out of hand - this disease is degrading and she is basically rotting from the inside out . . . until she lets go or finds some peace within herself I feel like this will continue for far too long.  Help :-)

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Hi there, and welcome.  I'm so sorry about your mom.  I watched my own mom die of breast cancer 30 years ago, and it's very distressing.

I would suggest trying to let go of your hope to help her accept her condition.  She apparently is not capable of it at this point--when you are that sick, I imagine it's pretty difficult to even consider what might give you comfort.  

She will continue to weaken and will, eventually, die from this disease, whether she accepts it or finds peace or not.  You can still help her, though, just by being there.  You can advocate for palliative measures to help relieve her suffering.  Let her know she is loved.  On some level, she may be able to process that she has someone who loves her there.

Try to remember to take good care of you, too.  If there are other family or friends who can give you a break from time to time, that might be helpful.  

Sending a hug,

 

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I’m so sorry about your mom and experiencing this. I have to agree with Lexi I’ve been through it twice and found no easy answers.  I think my brother accepted he was at the end when he saw my sister and I in California. He was in hospice and after saying our goodbyes he closed his eyes and went to sleep.

Now my sister who like your mom was at the end and didn’t want to accept it her poor little body was giving out. It was one of the hardest moments to go through. I remember her telling me how much she hurt and me not being able to help. I know she didn’t accept it even in the end but she knew she was loved. Just be there and give her your love and support. I wish I could give you a hug and tell you it’ll be ok but I think you know it’s going to be tough. 

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I'm so sorry that your mom, and your family, are going through this. My grandmother had SCLC and underwent treatment for about a year. We requested hospice for my grandmother when it was evident there was nothing further we could do, and my mom just couldn't do it all herself. My grandmother was so angry with us for calling hospice, even going so far as to tell her minister that she was furious with us. But once we all told her we would be okay, and that it was okay to go, she did. There is no easy part to this process. I know you are in a tough situation but please know we're all here for you.  

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I’m so sorry about your mom. My husband has extensive stage SCLC - he never wants to hear anything the doctors say - anytime they suggest something he is all for it - not asking well what benefit will this really have??? I’m happy to hear you and your family and her doctors are all on the same page, as I sometimes feel doctors will just keep throwing stuff at patients knowing fill well it isn’t going to make a difference. 

He thinks he will be back to fire fighting in the next couple months because his chemo is done. It has been frustrating for me, because I feel like let’s get stuff in order, let’s say the things we really want to say and see the people you really want to see. It just doesn’t go that way - so at this point, I know the outcome, I hear what the doctors are saying and I just do my best to listen to him, keep my opinions to myself and just be there for him. 

Thats all you can really do. Just be there for her and tell her very chance you get that you love her.

Again, I am so very sorry. 

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I too am sorry. I'm not sure that I can offer any more advice or support than the other members have given you.  There is nothing easy about this process, but do know that you are not alone.  We cared for my grandma in our home until she passed away from lung cancer.  Luckily she went relatively peacefully, but I butted heads with her a few times before her passing.  She was quite bitter and I didn't want her to be remembered as a grumpy old lady. Even 10 years later, I think about my harsh words and tone with her and I wish I had just let her be.  Perhaps that might be the best thing for your situation? - just let your mom be, allow her to process and deal with this in the way she needs/wants to.  You might ask yourself, is this the way you want to spend the remaining time with your mom, or with anyone for that matter.  I wish I had a magic wand for you to take this hurt and worry away.  But the best I can do is offer our support here...we are here for you.  I am thinking of you and your family and sending hugs.

Take Care,

Steff

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I’m so sorry to hear about your mom. I went through this with my husband for 10 months before he passed away. Someone told me to talk to my husband about love ones that have already passed away because it gives them something to look forward to you. It was also therapeutic for me to speak about these things. Our Lord is with you and your family

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tlsher,

I wish I had helpful end-state disease suggestions.  I don't.  My mom didn't let go either. She passed from congestive heart failure complicated by COPD.  Right to the end she was ordering us to get her things ready because she was going to leave the hospital after the IV bag was empty. My mom was a WWII era woman. She made a living during the war, made a home for my dad and her 4 sons, and was large and in-charge.  Of her four sons, two were Army Colonels but we had no doubt who the Commanding General was! All 4 foot, eight and one-half inches, of her mighty stature and woe be the one to forget that one-half inch.

Just be with her. Hold her hand. 

I'll pray for your both.

Stay the course.

Tom

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  • 3 weeks later...

TIsher,

My 68 yo mom was diagnosed w/ SCLC extensive in the same timeframe. My thoughts and support are w/ you. I’m so incredibly sorry for the situation and the storm you’re weathering. Wishing your mom a speedy and painless transition. Sending love, hugs and tremendous strength.

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  • 3 months later...

It was a big mistake that your mom stopped the treatment. Chemotherapy has bad side-effects, but it's very effective in killing cancer cells. Your mom should complete at least 4 cycles of chemo, regardless of side effects. Chemo is hard, but it's effective. No cancer is terminal (meaning, no cancer has 100% mortality rate). While 10-year survival rate for SCLC is around 3%, there is still hope, and it's worth fighting for. I strongly suggest you to get your mom back into treatment as soon as possible.

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I disagree. Quality over quantity, and it is your moms choice. 

I mnow now my husband will try anything and everything and I disagree with him over that. 

Quality of life is most important. 

And my husband has terminal cancer. It’s a real thing. 

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Each of us reacts to lung cancer differently: treatment reactions differ as do results. Sadly, lung cancer is deadly and effective treatments for small cell lag those available for non small cell.

One of the benefits of living in a free society is our right to choose to receive or not receive medical treatment. As a lung cancer patient, having had 4 recurrences and facing a very short straw for future treatment success, I started preparing for the way I wanted to die. I would have entered hospice but for the FDA approving CyberKnife precision radiation for lung cancer patients. That treatment saved my life and it came out of the blue.

Still, there are only two absolutes in life: birth and death. We have no choice in the former and sometimes have a choice with the latter.  For me choosing is the preferred option but I completely understand people who decline to make this choice.

Stay the course.

Tom

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On 6/7/2019 at 7:06 PM, 0621121974 said:

I disagree. Quality over quantity, and it is your moms choice. 

I mnow now my husband will try anything and everything and I disagree with him over that. 

Quality of life is most important. 

And my husband has terminal cancer. It’s a real thing. 

Since your husband's cancer has metastasized into his brain, yes he will die. But not everyone will die. SCLC does not have 100% mortality rate.

Of course, quality over quantity, etc, that's your opinion. I have mine.

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11 hours ago, Tom Galli said:

As a lung cancer patient, having had 4 recurrences and facing a very short straw for future treatment success,

So far, you survived. It's a battle worth fighting for. Don't give up.

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You are correct about one thing, these are all opinions. We all hope the outcome will be good, but more often than not it isn’t. And the decision to fight, accept treatment or stop treatment, is a personal one, neither wrong or right. 

You can only hope that those that have this horrible disease, are at least at peace with whichever road they choose to take. 

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