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Mother has extensive-SCLC and may move to hospice soon


Kmc

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What a wonderful community. I am grateful to have found it. 
 

My 72 year old mother has been battling cancer for 5 years; breast cancer returned from 20 years ago and she had a new diagnosis of SCLC December 2020. She completed one round (out of 4 assigned rounds) of chemo and developed serious pneumonia that landed her in the hospital for two weeks. We didn’t think she was going to make it, but she did! I have lovingly teased her for years that she is the kitty cat with nine lives. She always rallies and somehow pulls through. 
 

She is now at home and has my 75 year old father as her full time caregiver, plus home health PT and nursing to supplement. Father is doing a fine job and we are visiting (masked of course) and filling gaps where we can. 
 

I am most proud of my mother for asking the tough questions about her prognosis at this point. As she considers discontinuing the chemotherapy that compromised her to such an extent that nearly killed her, she is questioning the benefits of the treatment. How much time will it offer her? We are having a frank conversation with her palliative care and lung specialist team next week. She has appointed me her medical power of attorney, so I will attend to stay involved and continue to guide her when she asks for direction. 
 

My hope is that she denies treatment and moves to hospice. With her condition of multiple stage 4 cancers and general un wellness, I believe strongly in keeping her comfortable and managing her symptoms with lots of love and support is the way to go. I have not directly said that to her, as I am following her lead but she indicates the same sentiment. Next week we will discuss it further. 
 

I am going to miss her so much. 
 

thank you for listening. 

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Welcome. Sounds like you have a good plan to support your mother. I'm glad you found this site, even if it is late in the game. If you have any questions ask away. If not we are pretty good at listening as well.

Peace

Tom

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Kmc,

Welcome here.

Life, it seems, is about making touch choices. There is that crossover point in medical treatment where the cure is worse than the malady. Unfortunately, that point is most prevalent in cancer treatment.

My wife and I faced a time in 4th line treatment where we had slim odds of success. I'd had a total of 18 infusions of chemotherapy in nearly 3 years of treatment and a still tumor persisted. This was well before modern treatment methods of targeted therapy and immunotherapy, and another round of Taxol and Carboplatin for us had very high probability of yielding side effects without effecting my tumor. We turned to investigating hospice while I was lucid enough to understand and make choices.

We all face an end to life. For many it is a surprise; for lung cancer patients it can be a date on a calendar. I wanted to live each remaining day at home engaging with my family and friends in as normal a setting as possible. When cancer settled into bone and organs, I didn't want to feel the resultant pain. Home hospice care was my solution.

My situation turned during an oncologist consultation where my wife noted an article in the Cure Magazine announcing the approval of CyberKnife precision radiation as a treatment method for lung tumors. My oncologist agreed and referred me to a radiation oncologist who administered the treatment. We were very fortunate to have a new treatment method emerge just in time to remove the date certain death from my calendar. We were the benefit of uncommonly good fortune.

So I understand your hope for your mother. I believe you need to convey your belief to your mother so she buys into the hospice prospect. This can be a tough sell. You may want to read the journey of a forum member who cared for his beloved wife with SCLC through hospice here. This may give you some idea of the journey ahead for your mother and suggest ways to discuss the benefits of hospice care.

Stay the course.

Tom

 

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Welcome to our site. As usual there is not  much that can be added to Tom's post except wishing you well. When/If you have questions about Hospice  please do not hesitate to ask because some of us have first line experience. They are Godsend  for both patient and family. Again I wish you the best.

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Helo Kmc and welcome here. I'm sorry to hear about yoor mother's cancers and the tough decision she is facing. My mother died from metastatic breast cancer. She opted to discontinue her chemo, It was causing a rare form of neuropathy that affected motor rather than sensory nerves. She became progressively physically disabled and lost all mobility. When she began to lose the use of her hands, she decide to discontinue treatment and I supported the decsion. These are really hard choices.

It's a blessing that your mom can stay at home and has family caregivers. Let us know how we can support you.

Bridget O

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Kmc, your mother and your family have been through so much, and SCLC is a beast. You are wise to explore palliative care and consider hospice care. From personal experience, their mission is the comfort of both their patient and the family. They can offer not only nursing services but also support for grief and spiritual care. 

You should seek out a reputable service with a strong track record. (Over the last several weeks, I've had to fire one hospice company for my father and hire a new one. His health has declined significantly since Christmas, so I'm not posting much here lately.) You are entitled to a timely response from them for all your mother's needs. They should also have a crisis nurse(s) who can be on call. 

Keep in mind that caregiving will take a toll on your father. He will need extra support too. 

If further treatment is not feasible, I hope your mother can be at peace with the decision. We will all face this at some point, and it's tough when you have to make decisions for your parent. (Although I know I'm doing the right thing, I am wrestling with guilt myself and have discussed this with the hospice chaplain, even though I'm not religious.) Knowing her wishes is very helpful. Your mother is fortunate to have such a caring family who can be with her. I wish you all peace and comfort. 

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This community is such a gift. I know each of you is encountering your own trials and yet you have made the time to share your concern, care and hope for my family. Thank you. 

Today she told me that she does not think she wants to continue chemo. She seems so centered. I asked her if she felt afraid and she said no, but that she wasn’t sure if she is just naive. 

Does anyone have any recommendations for excellent end of life reads? She said she is open to reading about death/dying.  

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I loved " When Breath Becomes Air" by Paul Kalanithi, an autobiography/memoir of a young neurosurgeon who is diagnosed with Stage 4 lung cancer. It was published after his death. You might want to look at some summaries or reviews of it first, to be sure it would be appropriate for your mom at this time,

Bridget O

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@Kmc, your palliative care or hospice provider should have resources, so don't hesitate to ask.

Chemo and/or radiation side effects almost killed me too. Last February when I was in the ICU right after emergency abdominal surgery and was so sick, I was ready to die. I know I scared my sister when I told her. I share this because I was also strangely at peace, as long as I didn't have to suffer anymore. So I understand why your mother says she's not afraid. 

I really admire you for being so supportive of both your parents, and I hope you can get some expert guidance to help all of you through this difficult time. All the best to your mother. 

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Kmc,

You've gotten some good input from the others.  I'm going to paste an email I received regarding end of life learning.  This one is more focused on the people that remain rather than the one leaving.  I hope the information can be of help to you.  The person I'm quoting below is from a group I'm part of as my wife is in late stage dementia, so like others we have to prepare for the end.  The DVD is available on Amazon and other outlets and I hope it is of help to you.

Lou

-----------------------------

"While a subject we tend to avoid, end of life care is inevitable and coming to grips with it softens the blow when our loved one dies. Nancy was a RN and a hospice volunteer and from her experience I learned so much that was helpful as her parents, my parents and eventually she passed.  I recommend giving Karnes’ thoughts some consideration.  I have her DVD “New Rules for End of Life Care by Barbara Karnes”.  It was of great comfort to my family and me."

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Update: We spoke with the lung cancer specialist today for that direct conversation about prognosis. Mom is discontinuing chemo (they don’t really recommend it for her in her condition anyhow, though I don’t think it’s entirely off the table if she would choose the modified dose). She’s in that window now between palliative and hospice. 
 

Doctor said we can wait on hospice until we’re sure she needs it since she’s stable right now. She quoted us “month....probably 3 months....maybe weeks”. I knew it was coming but that hit hard. Just hearing those words. 
 

Thanks for listening. 

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I'm so sorry.  Keeping you and your mom in my thoughts.  I'm just going to share this section of the website that deals with hospice decisions so you have the resources when you are ready for them. https://lungevity.org/for-patients-caregivers/caregiver-resource-center/end-of-life-planning

Please let us know if there is anything we can do to support you.

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KMC,

I'm sorry that you, your Mom and family are going through this. Having been in your shoes last year, I know how difficult not to mention heartbreaking it is. You may want to think about bringing hospice in sooner rather than later. This way they are in place and familiar with your Mom and your family when things come up as you all go down this road. My experience with them with my Mom was that they we’re invaluable in terms of providing what we needed to keep my Mom comfortable in her own home for the last five months of her life. They were a great support to me as her caregiver. It was the most difficult thing I’ve ever done but I would do it all again in a heartbeat. I pray for strength and peace for you and your family.

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