Fletch Posted November 12, 2019 Share Posted November 12, 2019 My mother, age 76, was recently diagnosed with Stage 2b (Limited) SCLC. Her oncologist is very optimistic. (no mets, whatsoever). She finished her second (round? session?)of chemo (cisplatin & irinotecan) last Wednesday and was doing very well until this past week. The nausea and extreme diarrhea hit her like a ton of bricks and now has her deciding that she doesn't want to do chemo/radiation. She says she will just take her chances. She says she believes she'll live longer without the poisons being put in her body. Now she's in hospital with severe dehydration and low wbc but she is getting better. They tried to release her today and she says she's too weak. It's almost like dealing with a child. When we first got the dx, she took it so well as if she really wasn't hearing it at all. We talked about it so I know she "got it"....but now, it seems like it's just hitting her and she has become obstinate and again, almost child-like. She wants to go to another hospital when she leaves this one. Is this her denial? She is scheduled to meet with radiology oncologist on Thursday but I don't think she will. My brother and I don't know what to do. We've about decided to confront her and tell her of all the people that are older and more frail than her that are fighting for that one more year, month or day....and to put on her big girl panties and get with the program....but we're afraid that that too will fail and she will shut down further. Sorry for the incessant rambling....just at a loss at the moment. In reading this again, I appear to sound very cold-hearted. Truth is...I love my Mom and I'm not ready to let her go. I'm so scared...both my brother and I are scared shitless. This is all so new and we are wanting to do what's best for Mother. She's the only one we have and it's breaking our hearts. Link to comment Share on other sites More sharing options...
Fletch Posted November 13, 2019 Author Share Posted November 13, 2019 Wow...I guess I came to the wrong place. After reading all the back and forth for a couple of weeks now, I thought this was someplace to go to get answers, vent, etc....I thought it was a place to "get real" if necessary. I apologize for saying my sick mom is being difficult....but I don't know how else to characterize it. I know she's scared, angry and somewhat in denial. I need to know how to help her realize where we are and what we need to do. Anyway...thanks for all the "views" and helpful responses. Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted November 13, 2019 Share Posted November 13, 2019 Hi Fletch, I'm sorry you didn't get any replies on your first post. Please don't take it personally. Some of the forum subgroups are more active than others and some days are just a little slower. There also is a Caregivers subforum if you ever need to vent in the future. Sometimes it's difficult for those undergoing treatment to hear the caregiver's perspective. Can you encourage your mom to keep her doctors appointment? Maybe there is a different dosage or combination if the side effects are getting to be too much for her? Would she want to be connected with a peer mentor? We can find someone her same age range that has been through similar treatment she can talk with. https://lungevity.org/for-patients-caregivers/support-services/peer-to-peer-mentoring Link to comment Share on other sites More sharing options...
Curt Posted November 13, 2019 Share Posted November 13, 2019 Hi @Fletch I’m sorry to hear about your moms diagnosis. Cancer is a really tough disease. Being scarred shitless is completely normal. The word cancer will illicit fear universally. I’ve dealt with it as a care giver to my father and now a patient myself. Your mom is surely going through a lot of emotions right now. A cancer diagnosis is a roller coaster. Cancer treatment can be absolutely brutal. My father was diagnosed at stage IV seven years ago and opted for the standard treatment regime available at the time. Based on the statistics at the time I was torn between him getting the treatment or just living his best life with the time left. He wanted treatment and I supported that. He lived ten months after diagnosis and those were ten very difficult months for him. Cancer treatments have progressed significantly since then and prognosis have improved, but the fight is still a difficult one to endure. People are usually more willing to fight when they feel like they have something to fight for. A milestone in their life or a loved one that they don’t want to miss is often a strong motivator. My advice is get the real skinny from the doctors. Are the treatments she is under curative or palliative? If they are curative what are the odds? If they are palliative what does it look like if she doesn’t take them? Doctors are trained to follow very specific courses of actions based on stage and prognosis. They sometimes don’t consider quality of life as strongly as they should. Your mom may not be in a place where she can easily absorb all of that. Once you have the info talk through it with her so she can make an informed decision. Also tell your mom that you love her, tell her that you don’t want her to die and want her to fight. Then tell her that it is her decision and you will support whatever she decides. That last part is really important. You need to let her know how you feel and also let her know that it is her decision and you will support it. Making the decision not to fight and enjoy your quality of life with the time you have left is often viewed as selfish...it is also often viewed as brave. As long as the decision is well informed, deciding to fight or not to fight are two incredibly brave decisions. I also recommend finding a local caregivers support group. This will be an unbelievably stressful time for you and your family. Having a support system will help tremendously. This group will surely stand in where we can. You’ll find support from both patients and caregivers here, but having someone or a group to talk to in person will also help. Hang in there. Link to comment Share on other sites More sharing options...
Tom Galli Posted November 13, 2019 Share Posted November 13, 2019 Fletch, I read your initial post and normally respond to all who join us. What gave me second thoughts on crafting a response was your mother's decision not to see treatment. I've known good friends who've taken that course and recalling their experience dredges up difficult personal memories. What should your brother and you decide to do regarding your mom's conditions and choices? If she is fully informed of the consequences of stopping treatment, then I would support her choice. That is not an easy thing to do as I know from experience but I believe it is the right thing to do. True, people older have "tolerated" side effects of treatment but both treatment and side-effects affect everyone differently. You mom could be one who has an extreme reaction to chemo and this is underpinning her decision. I recall my experience with my mother's passing. It was not pleasant nor easy to endure. My brothers and I tried to make her as comfortable as possible and she was not alone in her passing. That strategy worked for us. I hope you find one with your mom. Stay the course. Tom Link to comment Share on other sites More sharing options...
Fletch Posted November 13, 2019 Author Share Posted November 13, 2019 Thanks so much for your kind, candid responses....and please forgive my "tantrum" earlier. I'm 57 years old and since my mother's dx, I feel like I'm 7 years old again. I constantly have a lump in my throat and I feel so helpless. We go back to her oncologist on the 20th where he will hopefully offer her alternative chemo meds (alternative to the irinotecan, as I hear it's a tough one). He said initially that he could "cure" this but he also explained the high risk of recurrence. I don't think my mom had the foggiest idea of how brutal chemo/radiation would be. She watched the folks come and go while she was getting her first infusion and I think she may have deduced from their demeanors, that chemo can't be that bad. She has Emphysema, COPD, diverticulitis among other ailments and chemo number 2 kicked her...behind. All I can keep hearing in my head is "I want my mom".....it's a overwhelmingly sad feeling. Thanks for listening. Link to comment Share on other sites More sharing options...
Curt Posted November 13, 2019 Share Posted November 13, 2019 No worries about the “tantrum” @Fletch. It is completely understood given what you are going through. Watching someone you love go through this is excruciating. It is a roller coaster of emotions. I hope the doctors find a better solution for your mom. Hang in there. Link to comment Share on other sites More sharing options...
Steff Posted November 13, 2019 Share Posted November 13, 2019 Hey Fletch, I am sorry your initial post didn't get the responses you were hoping for, I have been a bit out of the loop and am seeing your post for the first time. I am a caregiver for my mom as well. Well, I am more like an advocate that makes sure my mom is doing her best to take care of herself. From a caregiver's perspective, I don't think your rant is cold-hearted or uncaring. I understand 100% what you are going through. My mom is on her 1st lung cancer recurrence. I was crushed when she was diagnosed with it. I literally went to work and came home and cried and screamed. I am thankful my husband was working nights at the time, otherwise he would have had me committed. Again, I completely understand you and your brother's fear and heartbreak. Here's some food for thought: People are different in how they deal with a life threatening illness. Your mom is obviously responding in a way that you don't agree with. That isn't easy. My suggestion is to make sure she understands her disease and that if the lung cancer is left unchecked, she will likely die from it. The main LUNGevity website has great, easy to read information about all things lung cancer. There are also great checklists to use during doctor's appointments. Once you know that she absolutely understands what she is battling, ask her what she wants out of this battle. Does she want to deal with any type of treatment, even if the side effects are mild? If she does not want any treatment, ask her why - this can help you to understand her underlying reasons for her decision. And at the end of the day, it is ultimately her decision. If she is open to some type of treatment with little side effects, you can have this discussion with her docs. If she is not opening up to you, you can let her docs know of your concern and perhaps they can help with the conversation. But no matter what she understands, her answer may still be "no treatment". I'm sorry you are having to navigate these waters with you mom. It's really hard when the child has to step up and act like a parent to their parent. I've been doing that for 4 years now and it's exhausting. But as a caregiver, we just keep moving forward, there's no other choice. Please know that these forums are a safe place to vent and there is no judgement here. It's also a great place to get information. LUNGevity also offers a Lifeline Partner program. This program can pair you and/or your mom with a peer who understands what you are each going through. Perhaps it would be helpful for your mom to hear from others who have been in her same situation. You can look more into the program on LUNGevity's main web page. Please feel free to reach out anytime..we are here for YOU. Take Care, Steff Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted November 19, 2019 Share Posted November 19, 2019 Hi Fletch, Just wanted to check in and see how you and your mom are doing. Link to comment Share on other sites More sharing options...
Fletch Posted November 20, 2019 Author Share Posted November 20, 2019 Hi Kristin, Mom has been in the hospital since November 9th, dealing with chemo-induced side effects (severe diarrhea and extreme fatigue) . She initially was in our little po-dunk hospital (excuse my Southern-ese) and came home on the 14th with her issues unresolved. The following morning, she was still no better so we took her to one of the bigger hospitals within an hours drive from her home. She is still there but is doing much better. Diarrhea is under control and she's now eating. They are still trying to get all those fluids & electrolytes back to where they're supposed to be. Can't get her magnesium levels up. She missed her chemo this week. She's saying she'll re-schedule when she gets her strength back. I don't think she fully understands how this works. Hopefully, we can get her back to her oncologist and try a different regimen that is effective that she can tolerate. Thanks so much for checking in....Keep those prayers and positive vibes a'coming! Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted November 20, 2019 Share Posted November 20, 2019 Glad she is feeling a little better. While she's at the hospital maybe there is someone who can really go over the possible outcomes if she continues treatment or decides to stop? Link to comment Share on other sites More sharing options...
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