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no offense to anyone, i neeeeed clinical, non inspirational answer , bottom line real answer. pleeeease?

faithbarbalace's picture
faithbarbalace
Posts: 15
Joined: Jul 2011

> I have been asking for a detailed description of what to expect, physically , on progression of a dying patient. I have always walked my life in gratitude and love.I am not ready to die....but I know that I am. With never having more than 4months remission.I am fearful of the unknown part. I am good with the dying part of it, struggling with the suffering the unknown. Am I asking an imposible to answer question? Whenever I have had something happen that others see as horrible , I dont see that. I simply ask what next? Just do what is necessary, because it is what it is. Am I being morbid or weird, because no one will answer me

daBeachBum's picture
daBeachBum
Posts: 164
Joined: Apr 2011

This is a reasonable question and one that everyone with cancer thinks or asks about.

This particular board is probably not going to be the best place for it though. This board was created about a month ago and thus far, very thankfully, we have not lost any members to my knowledge. You will probably get better answers on the Caregivers board, or if your peritoneal cancer is secondary, on the board that corresponds to your primary.

I have stage 4 colon cancer with mets to the omentum and lymph glands. I caught it very, very late in the game. I was in the hospital 29 nights this winter and had the chemo regimen they put me on not worked, would probably have died within a couple of weeks.

For me, it wasn't that painful. The hardest part was that I was bummed since I thought I would never step outside or be able to eat again. They were starving me since my colon was blocked and they wanted me ready for surgery at any time. The hospital kept me very comfortable and my family and friends made frequent "low impact" visits, usually some conversation and then they settled back to read when I was tired in the slightest. I spent a lot of time sleeping.

You have choices about how you want things to be in the end. The important thing is that you need to set them up now and clearly articulate them to your loved ones. If you have not set up a Living Will and Medical Power of Attorney then you must do this immediately. Choose the person who has the POA with great care and make sure they (and others) know your thoughts explicitly (and will FOLLOW your wishes). Your onc or hospital will have information and people to talk to about getting this set up.

When the time comes for me, I plan to be in a good hospice with plenty of pain medication. If a procedure will not offer me signifigant benefits or will only prolong a painful exit - then I don't want it, nor will it occur.

All that being said, I believe that while its critically important to have this all set up, its much more important to live the life you have now as best you can! Go out and have fun with people that you care about and do some things you have always wanted to do but never got around to.

Its not going to be apples and apples, but there was a very sad, touching and in-depth set of articles in the Philadelphia Inquirer this year where a journalist outlined her final months with her husband who had brain cancer. You should be able to find her other articles via this one:

http://www.philly.com/philly/health_and_science/Helping_a_husband_at_the_end_of_his_life.html

I wish you all the best and hope you enjoy good health and great happiness - for a lonnnng time :-)

Ray

faithbarbalace's picture
faithbarbalace
Posts: 15
Joined: Jul 2011

I do have the end plans in order. that is not my issue. I was diagnosed in 2007 with ovarian, originating in the peritinerial wall. yes stage IV , already mastitized,and yes already running through lymphs. 5 surgeries, doing the 6th go round of chemo now. never had more than 4 months remission. I have not given up on chemo yet. It has been working to keep at bay. My question is about the physical progression, when the chemo regime is worse than having the disease. I will want to stop, or if they want to cut me again. cant bring myself to deal with specifically, anything like wearing the bag. I cant see allowing someone to keep taking pieces of me, and not have to benifit of being cured. I am leary of things that i dont know. I want a doctor or anyone to say well when it gets to your liver expect this, or when it reaches your lungs, expect that. I am not asking anyone to try to predict the future, these I thought were reasonable medical questions????? I am kool with god and all his plans for me. At the end has already been planned.

LaundryQueen's picture
LaundryQueen
Posts: 682
Joined: Mar 2011

Sorry you are in the position of having to ask these questions. There is the possibility that you might get pneumonia and die from having a suppressed immune system rather than succumbing the the cancer itself. I am on my way to my first recurrence or probably already there (I haven't seen the doctor about my rising CA-125 yet).

I am staying off chemo as long as possible because new research as shown that there is no survival advantage to treating women based on their CA-125 alone. I think it is important to take the longest breaks from chemo possible.

I am also taking a product called VascuStatin made from bindweed...it is supposed to strangle the blood supply to the cancer. What I've got is just "caking of the omentum" and possibly tiny implants all over the belly that are too small to see with CT or MRI. I feel fine and just have to stay busy and get on with my life.

Louise

Best Friend
Posts: 222
Joined: May 2011

I feel that if it were me I would need my family to accept the inevitable. I am hoping for my mom that i would be strong enough to let go. I know all kinds of things go through ur mind about how death will be! Ur not afraid but I think u are little scared to maybe leave everyone else. In certain circumstances Yes, it will get worse.
I look up alot on the computer to inform me of the things happening to my mom. I think that it's crazy how far it gets before they treat it. I am thinking my mom's was pretty bad. Her's was on her liver. She just always pushed herself. I know she felt like crap but the day before her surgery when we found out she was liftin mulch. So, I can only think we caught it in time. She was even at Disney World last summer and she was dying slowly. I am thinking that to have it in the lung is pretty much the worse. You would have the peritoneal and ovarian and than on top of that u would be suffering from lung cancer. The lungs filly up with the fluid and there is cancer in the fluid so u most likely would devolope pneumonia and die. But, if u are prepared they WILL take care of u! You at that time will be comfortable with knowin u are at peace. That's why I am suprised that the chemo almost eradicated the cancer on on my mom's liver. They were even gonna take part of her stomach, colon, and her spleen too. She had chemo and none of that had to happen. So if u keep getting chemo it may keep it off ur liver but if that's all it's doing and ur maintaining a life that is in no way rewarding than you will know when to stop. I know my mom would find this too. I think I am the only one in the family who will be able to sit by and be with her when she goes through the last days.

AussieMaddie's picture
AussieMaddie
Posts: 345
Joined: May 2011

Hi,

If I understand you correctly, you just want to know what happens to the body when it is dying. (Forgive me if I misunderstand). It is a question that your doctor could answer but doctors tend not to be very good at answering that type of question. The very best person to answer that question is a palliataive care nurse whose job it is to care exclusively for the dying (ask your doctor or the hospital to speak to one - especially one familiar with your case.

I don't believe we can ever know exactly what will happen because there is always something unexpected that can happen.

Years ago, I read a book about how forms of death occur. It was quite interesting. I can't find it now. You can probably still buy such a book. I just Googled the words 'signs that the body is dying' to find a list of web pages which discuss the stages of dying. Any large bookshops will have books on the subject.

I wonder if such books could fully answer your question however?

I don't know.

Take care,

AussieMaddie

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

I have read your post with sadness and wonder. I quickly faced up to the fact that my cancer was terminal and there was no cure for me. I think this is the best place to talk about dying because we are all facing it sooner than most.

My loved ones are not the people I want to talk to about dying as it upsets them too much, but on these boards we can be as open and honest as we want to.

I nursed my mum in her last weeks and can only talk about what I witnessed with her. She became very weak and was forced to stay in bed the whole of the time. She had no desire for food but enjoyed little sips of water. In the last 2 weeks before she died she slipped in and out of semi-consciousness (sp) She wasn't in any pain as the nurse has a morphine pump that kept her pain at zero.

I worry about not being able to breathe when I am dying ................... but this was not the case with my mum at all. She slept most of the time.

I too am not ready to die, my son is going to make me a grandma for the first time in September and I surely hope I get to meet him (yes they are having a boy). But like you I don't want to suffer but the palliative care nurses who looked after my mum were fantastic and my mum NEVER suffered.

Tina x

AussieMaddie's picture
AussieMaddie
Posts: 345
Joined: May 2011

Hi Tina,

my only concern is the quality of my life before I go. I don't have a grandchild to make want to stick around. Certainly, I think that children or grandchildren are the hardest things to part with when one consdiders dying.

I'm not close to my own grand-niece or grand-nephews, who are still very young. I hardly ever see them or their parents but there are reasons for that which don't make out them or I to be bad people. I'm always happy to see them when all the family gets together.

I want what your mother had - the very best of palliative care at the end. I look like being discharged from palliative when my chemo is stopped in over a month. As it is, I've never had palliative symptoms anyway. They've really supported me for my mental difficulities. I'm in the process of looking for support for those for when I am discharged from palliative. (Of course, when the time comes when chemo or other forms of therapy won't keep my symptoms at bay, I'll be returned to palliative care)

Take good care,

Love,

AussieMaddie

xxx

daBeachBum's picture
daBeachBum
Posts: 164
Joined: Apr 2011

I found these while noodling around on the site.

http://www.cancer.org/Treatment/NearingtheEndofLife/index

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