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What does the end look like?
ellep
12 Posts
I hate to post something so somber here, as this forum has been a source of optimism for me in the past, but could really use some advice.

My mom has stage 4 NSCLC, currently in the ICU due paralyzed vocal cords. Today she was out on life support (due to suspected infection), and we were told she can no longer breathe on her own and will relying on the ventilator will likely be permanent. Her lung X-rays indicated possible infection weeks ago, but doctors just told us she didn’t seem like she had an infection.

I’m not sure what the end looks like, and I’m scared it’s close. I’m not sure if there’s hope, because the doctors don’t seem to think there is. Can anyone shed some light on what to expect? How to prepare? Is there anything we can do or is this inevitable?
11 Replies
ACH2015
2351 Posts

@ellep

I am sorry to learn your mother is at this stage. It is difficult to know exactly what the end will look like, and I did some research for you and have included this link for you:

https://www.verywellhealth.com/what-to-expect-in-the-final-stages-of-lung-cancer-2249015

May I also suggest speaking with the medical team as to the prognosis for your mother. It can help with decision making today and in the future. Another resource I can suggest are the social workers at the hospital where your mother is. They can offer support and suggestions moving forward for both your mother and you. Do you know your mother's final wishes? Would she want to live at all costs, or decline life saving measures if there is no hope of recovery.

I am sorry to ask you these things at a time like this, but I only want to help you with some information and options. I do hope this helps.

My thoughts are with you and your mother.

ACH2015

JenG
165 Posts

@ellep I too am sorry your mom is not doing well. It’s best to be prepared for death but you can still hope for recovery! I found virtualhospice.ca really helpful (I think that’s the address). It talks about all the stages of death and dying and what to look for. With your mom’s care team, you might have to really push to get honest answers. No one likes talking about death and medical teams are no exception!

How are things going today?

hugs,

jen

BigPopi
60 Posts
I am sorry to hear about your mother's stage 4 NSCLC. I have the same.I have been fortunate to being relatively well a year into immunotherapy, so I do not know what the end looks like. But when things go south, and I can see what it looks like, I shall explore the MAID route. Best wishes to you and your mother.
ellep
12 Posts

@BigPopi @JenG @ACH2015 thanks for sharing your thoughts. Mom passed away yesterday morning. We were told she was declining and rushed to the hospital. We said our farewells and expressed all our love. She was fully sedated, but we saw a tear before her heart stopped 5 minutes later. I think we want to believe she heard us and felt finally at peace. We only had a month together after her diagnosis, it feels so unfair.

ACH2015
2351 Posts

@ellep

May I offer my condolences to you and your family with the passing of your mother. My father passed away 6 years ago, and he was not conscious when he died. Like yourself with your mom, we were with him at the end, and I believe he heard what we said and knew we were with him. May it bring you some comfort in your grief.

My mother passed away in late June, and something posted on this site has given me some peace. I'd like to share it with you as well:

"The only cure for grief is to grieve"

Keep well

ACH2015

JenG
165 Posts

@ellep oh I’m so sorry! It’s a rip off big time. I too believe she heard you and felt your love.

It’s going to suck - the grief and all that comes with it - but you will make it through. There is no timeline, no reason to feel you have to do it a certain way. You just feel the feelings.

take care. There’s a coping with grief group if you want to join. We all understand.

jen

@ellep
I came to offer some hope and see that condolences are in order. I have no words for the sadness that I feel. May you find peace in the midst of your sorrow.

For others who come to this thread looking for some glimpse of what the end looks like may I recommend the excellent episode 9 “When time is running out” from the #waitingroomrevolution podcast. https://www.waitingroomrevolution.com/season1 More general than just lung cancer but it gives a sense of how the process of dying goes and gives us a better feel for the type of questions we can ask the professionals.

I must confess to feeling some anger personally at this story. #LungCancer is often discovered far too late and steals so many people before we are ready for them to go.

Again my sincere condolences.

Angus

ellep
12 Posts

@WestCoastSailor truthfully, this is a huge source of our pain and disbelief. We discovered it late, but Mom started on Tagrisso recently and we thought that bought us a few more years…

We had an unlucky series of events where her paralyzed vocal cords led to hospitalization, which led to infection, and septic shock. She went from stable to septic shock and passing in 24 hours… We knew our time together was cut short, but didn't expect it to be this soon. We had so much planned after she left the hospital, it's left us with a lot of regrets around what we couldn't give, do, and say to her before she left us.

BigPopi
60 Posts
So sorry for your loss. 8
Runner Girl
2894 Posts

@ellep
I am so sorry that you've lost your Mom. Please accept my heartfelt condolences.

Cynthia Mac
3983 Posts
ellep‍ I am sorry to hear that you lost your mom. My Dad, also a NSCLC patient, lasted a month in hospital at the end, Also like your mom, it wasn’t his lung cancer that caused his passing - although, what did cause it might have been related to either the disease or treatment. Maybe.

Dad’s nurses assured us that hearing is the last of the senses to dwindle, so I’d say you can confidently know that your mom did indeed, hear the family’s last loving words.

And, please try to banish those thoughts of regret. Those plans you were making were not meant to be, and it sounds as though all of you did everything you could to do the very best for her.

Again, my condolences on your loss.
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