Completely Scary Topic: How Do We Die?

hello everyone... can i call you friends, or is that presuming to much?....So today is TWO YEARS since i got my stage 4 DX....It's really amazing that i have had such a good response....and it is so scary that I'm so much closer to getting rid of that wallpaper..lol...all the scans are scheduled...(end of april)...and MO appt set...and ALL yes All i can think about is how is this gonna end...i mean, i know the final end part, its the part just ahead of it that really scares me and keeps me up at night...no matter how logical I am or how many distractions i can create, my mind just returns to "what horrible thing is my body gonna put me thru?....Yikes...whats gonna go first? (that was a question to myself again)..i know, no one knows...Doc said I wasnt very typical and couldnt even guess at my road thru progression....Yikes... whats gonna go last? ...thanks for listening to my lil rant tonite...there are very few people who can really understand this kind of topic, and I"m so thankful that you are out there with empathy for a stranger (altho you seem more understanding than real life friends right now )...BTW, I did go thru all those links re/end of life but right now my questions are just all about me...that personal end...private...you have to go into that unknown alone and that doesnt scare me for some reason (I never said no to an adventure)...its my body that has betrayed me and im pretty sure i know what i did to make it so mad...lol...I just pray that it will release my soul quietly without to much mess and screaming...mostly mess.

freya...how was your doc so sure about your trip? I know your labs tell alot, but to not make it?... Im just wondering if my doc will ever be that honest with me? Did you come right out and ask him?.... Im sorry, I know everything can happen very fast...I guess its silly to think I wont have enough warning dispite that... I hope you're feeling well this week and next too...thank you for your comments

freya, is it ok if i stay with you while you go thru this?

Nan and Freya, also Jennifer and Paula, is it OK if I stay with you while you go through this?

I mentioned on the previous page, I've been involved in hospice three times. I've seen loved one change, slow down, and eventually pass away. It's different for everyone, and yet some parts are the same.

Hospice was wonderful, and have a lot of resources. I think an open communication with one's doctor also helps. What can I expect in my situation? What are the pros/cons of this treatment? What can we do to alleviate these symptoms?

Nana was almost 97 and her kidneys were failing. However her heart was already failing first. The doctors in the hospital were so quick to prescribe some things, without looking at the whole picture. One doctor even insisted that we put Nana on dialysis. Her PCP was so good. He wanted to know, "what can I do for Nana? What do you want for Nana?" We said that we wanted her to be comfortable, to enjoy her great-grandchildren while she could, and have a peaceful end. And she did.  

If you have a worry or concern, ask your doctor.

Wishing you peace and comfort, and all the best, especially in these difficult circumstances, Madelyn

This Canadian site has some really good information.

Nan, I know who you are talking about, and I go from having empathy to wondering if she's a troll. I now just skim past her posts without reading them. She has been on here for years, and that does not look like changing, doesn't mean I have to interact with her. You were being kind, that is never a bad thing. Hugs

Hi Jen

I've been reading all the views and doing some thinking the last few months..

as much as have my own plans, my fantasy of having a sudden heart attack to transfer me to my next home is so strong that, my main concern nowadays are to have my legs shaved, no more Brasilian vaxing, it hurt like hell! )

Have manicure/pedicure with bright nailpolish, have my hair in good condition and have a bit of make up, so that the ones dealing with my body will not be disgusted at basic level.

I am serious. I know many pass away in their beds, surrounded by loved ones, yet my hope is something more like having coffee with DH somewhere, when I suddenly (yet calmly-working on that, still trying to prepare myself to it) drop dead.

I had the driving car during the attack fantasy for some time, but now that I no longer drive long-distance, Dying on the way to groceystore is not an ascar-winning scene. Anyway, I dread tubes in my body, machines beeping and the hospital smell. But if be it, I'll prefer the most expensive private one for my last breath.

I admit I am scared of dying, but lately am curious of what's next as I witness most of my dear friends here having gone before me.

There are only a few of my long-term BCO sisters left still alive, so it is somehow becoming easier to accept it coming for me at some point.

Ironic. We seek hope mostly on the boards, don't we? I no longer do that. Have read so much, witnessed so much, that now am at another level now, still occasionaly sharing info & experiences with newbies.

It's like a child growing to be adult, the longer we stay alive, the more we grow into perception of death. If I didn't have MBC, I'd be running around for my business meetings, planning our next summer holiday and insisting on moving to a much bigger house with 25-year mortgage, I know.

I am grateful for all that I have had so far, I am a luck lady for sure. From now on each breath is a bonus point.

Well, guess this sums up my view..

love

Ebru

hi jenn, I'm with you...i dont think the end of my body will be the end of me...no one knows what really happens, I just hope I can keep my wits about me and not go zooming someplace I would rather not be just because of the "pretty" colors or whatever happens to draw my attention. i wonder if I will finally find out all about God? I dont believe any of us humans has got it right about that yet. I dont believe our language even contains words that could come close to describing such a being... they say we are all energy and energy never goes away, it just changes form...wouldnt it be cool if one of us could use our energy to post from beyond to give us all a heads up....its that crazy making unknown again...just cant escape that...waiting to know...i never thought the waiting game attached to this disease would be so difficult...absolutely every aspect involves waiting...I now really believe that patience was the lesson that this lifetime was ment to teach me...not just because of bc....i took care of many loved ones, the toughest was my dad (he would like that),massive stroke at 60, paralized complete left side,stubborn , right off the boat german, needed 24 hour care.such an insult to his manhood not to mention he spent from age 6 to 12 in a russian concentration camp, didnt the bad crap ever stop...he lived the american dream i grew up very middle class which was a lil nicer back then it seemed..Mom passed at 48 from bc..Moved dear mother in law in for her final year with us..stage lV lung...we laughed so hard when flushing that feeding tube, water sprayed the room, then more laughing....till someone peed lol.....oh this late night rambling...it did help clear my head, altho nothing important came out my shoulders feel lighter all the same....be well tonight

Freya- the same thing happened to me In November as to what is going on with you. One week my blood work was fine then it all went crazy. Liver was failing, platelets dropped to 37, I was yellow as can be. All my red counts were crazy and my heart rate was around 130 most of the time. Blood vessels in my eyes were exploding and I was too weak to walk or talk. MO said we didn't have time to do an echocardiogram but wanted to give me A/C and Taxol to see if we could try to turn things around. She said I probably would not make it through the weekend. I agreed to do it as it was my only hope. I also got the first of five transactions. I think she was shocked when I showed up on Monday. It took several weeks but slowly things started to get better. I must say being that close to death was a strange experience. I wasn't prepared at all. I didn't feel afraid but instead I felt more sadness then I had ever felt. I didn't want to leave my family. I love my life and the people in it. So many people we're praying and I strongly feel God pulled me through because I didn't have the strength to fight. Four weeks ago my blood started to get all crazy again and MO put me back on a weekly dose of A/C and things are getting back to good again. Liver is back to normal. She feels the cancer just keeps getting ahead of us. If platelets and other things look ok on Thursday I will start Ibrance. I will pray that the chemo turns things around for you as it is for me. I know your fears too well. Hugs.... Dian

Nan, have you read any of end of life/hospice materials? Lack of appetite is common in terminal illness.

People don't intentionally fast, but they do lose their appetites as their bodies slow down. The digestive system no long works properly: food isn't completely digested and/or blockages may occur. It becomes uncomfortable to eat and people stop eating.

http://www.arborhospice.org/we-can-help/nutrition

This happened with my friend Lori. It was distressing to watch her husband feed her, as she had no appetite and he was forcing the food into her mouth some mornings. (Husband really didn't take the time to read the hospice information. It just sat in a folder on the counter.) Unfortunately, most terminal patients have anorexia, which a loss of appetite and most develop cachexia, which is the loss of weight. Cachexia cannot be reversed nutritionally; even if the number of calories consumed increased, the terminally ill person will continue to lose weight. Her husband seem to feel that if he could keep feeding her, he could keep her with him longer.

Nana and Ann also lost their appetites. The difference was that no one was force-feeding them.

Anorexia/loss of appetite is the body's way to keep itself comfortable as the digestive systems slow down.

yes Jen, I sure am getting rid of everything I no longer need and have been rearranging the house for DH & DS for sometime now. Without making them feel it

I had attended the funeral of my ex boss from years ago, with whom we parted on not very good terms at that time. He was unfair to my performance and I lived professional hell, going through serious office mobbing for almost 2 years after which I quit .. yet, when I heard he suddenly passed away in a home accident ( was young), I went to the funeral, stopd by him and told him, I forgave him. Prayed for him. About a week later, I saw a dream him smiling at me and he thanked. This has been the ultimate example for me to believe the soul doesn't die.. at least no harm in believing so.

I have also been trying to be even more kinder to everyone, cos you know, we do break hearts without noticing.. I don't have many people left surrounding me after having retired, so enjoy the silence, cherish the quality time I have with the few who really care for me.

I thank God quite a lot each day for having had the chance to realise how lucky I have been so far with tolerable treatment so far and really not plan the next day any more.. go with the flow..

this past week, I have felt like sharing more on the boards, so I do.. I don't really think too deep about anything any more.

Tomorrow I'll be meeting MO to sort out the treatment, as TMs skyrockected to 2400+ fingers crossed once again

Hugs

Ebru

Hi everyone,

This is just a post to introduce myself, as it is quite late here in Western NY, and my grandchildren will be coming over tomorrow and I'll need to be awake. My name is Diane, and I was first dx with bc in Sept, 2010. I was originally thought to be early stage, but after surgery with lymph node dissection and an MRI which found a lesion on my spine, I became stage IV de novo. It's funny, 7 years ago I wouldn't even know these terms to describe my disease!

So, after surgery and radiation, I took anastrozole and zometa for 5 years without much change to my quality of life. I always knew in my heart, though, that I never wanted to have chemo and go through the horrifying treatments that I personally saw many family members and friends go through. I know that I am a bit of an anomaly, and even my oncologist admits that he doesn't have any patients like me.

In the Fall of 2015, I had a PETCT scan, and, although I wasn't having any pain, cancer had found it's way to many bones in my body and was making a meal of those bones. The biggest concern was the femur in my left leg, so I had the surgery to insert a rod in that leg. My onc advised that my meds had to change, and prescribed Ibrance and letrozole. The Ibrance was at the highest dosage, and I experienced almost all the side effects listed. I was ready to give up entirely, but he changed to a lower dosage that I was able to tolerate. That worked (I thought) for about 14 months when I had the last PET/CT. My intuition told me that something was amiss, but I wasn't prepared when he told me that it was now in my liver.

That's it for tonight ... gotta get some sleep ... I've enjoyed reading all your posts and "meeting" all of you.

Diane

Sleepless nights, I will be back to read more. I have been looking around the house..... making quiet plans to clear the path for everyone. Good info here.

How do we die. My mom dies years ago. On tubes. And one night she went into the coma and slept. Her breathing changed just before she left and it was the most beautiful experience. But to that point had been a hard path for all of us, especially her. She taught me so much of what to do and what not to do. And who she really was.

Hubby is in denial. I am not. I could live for forty more years. Or four hours. The airways are pressed upon and sometimes there is no air. Lungs at 50%. A lube collapsed since last Autumn. Coughing is frightening. It could be sudden. But the treatment of Ibrance and Letrozone combination is working, just so slowly. I also take help oil raw, CBD / CBDa. Yet I think the pulmonologist has pressed the issue with my dear onc and the subject of chemo infusion or IPT at least will be broached on Wednesday. And I just don't know.

I do know I need more underwear.

jen..imagine if someone told you that you were going to be ripped from the only world you have ever known...a place of warmth, comfort, and love... and forced you into a world of shocks to your senses.... where every thing was completely unknown and strange to you....if some one told you this before hand........would we be to scared to even be born?......."reverse birth"

I told my dad that it was ok if he didnt want to try so hard anymore ( I pushed alot of PT and OT which he always got kicked out of ) and within 24 hours he had a massive heart attack and passed...He had quad by pass surgery 6 months before my mom passed which was 15 yrs before he did...broken heart when my mom got sick I believe....My dad starved as a child and would never have even considered that but I do read that people use that in states without DWDL.

Somewhere in this thread it was suggested that journal writing might be helpful for those left behind. My Dad wrote one during his last 9 months. He died in 1999 from mesothelioma (asbestos induced cancer). I have it and read it regularly. It’s funny, sad, happy and tear jerking, especially at the end. I am SO grateful to have it. I feel less loss when I read it and have the comfort of feeling him help me flip the pages from the peaceful place he’s at now.

I’ve started a journal for my son. In the event that I should be taken by this bastard of a disease I want to help him flip the pages as I know my dear father does. This book is a precious gift.