End Stages

I found out that my dad needed to go on hospice care 16 days ago due to lung cancer.  He passed away two days ago.  In the two weeks that I had to deal everything, the most frustrating thing for me was not knowing what the next stage would be.  I wanted to know what to expect.  I wanted to know the signs to look for to know that we were really in the "end stages".  What I found after reading messages boards, doing research, and talking with people was that every story is different.  There are common themes and similarities, but no definite signs that will tell you what to expect or when to expect it.  

With that being said, here are the stages that my dad went through.  They may be similar and helpful for some:

Day 1: Was mobile and even able to drive himself to the store early in day and communicate almost normally, but was exhausted early and often.  At night, sleep was restless. Appetite was light but ate 3 times.  Legs and feet began swelling.  

 Day 2: Not as mobile.  Driving out of the question.  Needed assistance walking and used wheelchair at times.  Less appetite.  Trips to the bathroom became more difficult and exhausting.  Could not stand alone.  Would doze off frequently while talking with someone.  Legs and feet experienced a lot of swelling since day one. Legs began to break out in small sores.  Swelling due to the cancer had spread to liver, other organs, and now effecting the kidneys.  Restless sleep due to frequent urination.  

Day 3: Less appetite.  More pain and tiredness. Swelling of legs and feet continued.  Morphine and Adavan (sp?) added to meds.  Trips to the bathroom became harder and more exhausting, used wheelchair more.  Also used a portable urinal to save energy and clothes.  Sleeping more frequently at kitchen table.  Dozed off in mid-sentence.  Seemed to have trouble with connecting his thoughts.  Some confusion set in.  Restless night of sleep.  These symptoms continued to worsen over the next couple of days.  

Day 5:  Ate small bites of food a couple of times a day, but none would equal a full meal.  Fluid in-take was still good.  Increased pain.

Day 8:  Swelling of legs and feet continued to points that one would think were impossible.  Some sores on legs began to bleed.  Appetite diminished. Connecting of thoughts seem to be more difficult.  Loss of bladder control.  Would say he needed to go to the bathroom after it was too late.  To this point, he had refused a catheter and hospice would not install one because they were afraid he would pull it out.  Sleep at night was very restless.  

Day 9: Catheter installed.  Even though confusion and exhaustion set in, he insisted on keeping a doctor's appointment.  Doctor said that cancer had matastasized to the brain.  Still able to sit at table and be around other people.  Appetite going.  Talked in sleep to people that were not there (like deceased parents and realitives).

Day 10: Swelling of legs diminishing.  Feet were still swollen. Virtually no appetite this day.  Some blood in urine. Still taking in some fluids.

Day 11: Only out of bed for a short time.  Slept most of the day.  Feet swelling also diminishing.    No appetite.  No fluid intake.  Increased talking to people not there.  When calling out for someone, could only call out one name.  Managed pain with medication.  Slept at night as he did most of the day.  Sleep apnea occured frequently, sometimes taking 15 seconds in between breaths.

Day 12-13:  Same as above except for the fact he did not get out of bed at all.  It appeared as he had had a stroke.  Left eye and edge of mouth drooped.  Little communication.

Day 14: Extreme pain early in the day.  I moved his head to adjust position and he cried out in pain.  That was the first time he cried out. To that point, he would say he was in pain or moan slightly.  Increased blood in urine.  Swelling on legs and feet were completely gone by mid-afternoon.  Later in day tempature began to rise.  Blood pressure dropped to 78 over 72.  Pain increased.  Hospice recommended increased morphine to make comfortable.  Could not swallow liquid medicine without assistance.  Breathing became labored.  Pulse rate, which had been in the mid 80's, dropped to 54 bpm.  His feet and toes were bluish in color for days, but his hands and fingers also began to blue.  Beds under fingernails were white in color instead of a healthy pinkish.  By 6:30 pm, he was gone.  At the very end, his breathing went for labored/snoring-like to the "fish out of water" gasping.  Lips also became bluish.  

That's my dad's story.  As I said before, by sharing the past few days of his fight with cancer I hope it helps to have another story out there to compare with the many others.     

Good luck to and God Bless all who are going through similar situations.  

 

 

 

Thank you for posting this information. My mom passed away April 30, 2007. We too set with her day and night for 2 weeks before she died not really knowing what to expect. She was diagnosed as having Unknown Primary Cancer .She had a met to the liver in April 2006. She was still taking chemotherapy treatments in March 2007. April 1st we took her to the emergency room for persistent vomiting and pain. She could barely get a good breath because of the pain and pressure from swelling in her abdomen. She had an inoperable mass that was laying in her pelvic area and they were using chemo to try to shrink it and kill the cancer in the liver. The mass had blocked her bowel so she ended up with a colostomy in May 2006. They did a scan on her that day in April when we took her to the ER and it showed 7 new blockages from tumors in the small intestine, so this explained the vomiting and pain. She was given pain control and had a J-tube inserted in her abdomen to drain the bile. The colostomy wasn't producing because her bowel was completely blocked off. She wasn't allowed to eat anything because the food could obstruct the J-tube and also she wasn't able to digest it. She came home from the hospital on April 5, 2007 with hospice care and died April 30, 2007. We were told when we left the hospital we may have 3 months at the most. We got 3 weeks. From the time she came home she had no food. Only liquids. I can relate to your story. My mom came home from the hospital able to get up. She even went to church Easter Sunday. One week after that everything changed. For 2 weeks each day something was different. She also did the snoring type breathing beginning on Sunday. The next day on Monday she was in so much pain it seemed to take hours to get it under control. She couldn't speak to us but she would moan out and cry in pain.  Then about 3:30 that day her breathing changed to being very shallow and low. At 5:00 she changed to the "fish out of water" breathing, gasping silently for air. At 5:20 she was gone. My heart goes out to you. I know they had a different kind of cancer but it seems to affect most people the same way in the end no matter where it started from. I feel for any family who has yet to face what we have had to already. I think your information will help them know what to look for.

I also thank you so much for posting this message.  My husband was dx Nov 2005 with Stage IV lung with mets to  other areas.  He has undergone radiation, chemo and was on Tarceva which did not work for him.  3 weeks ago the oncologist told us that she has done all that she can for him.  This was very difficult for all of us to hear.  They did emergency radiation the same day because his tumour in the lung had grown to 13.5cmX10cm and was causing swelling in the collar bone and corotic artery area.  They felt the tumour was causing a blockage.  His voice went hoarse 3 weeks ago and he feels like he has a hair ball size lump in his throat at all times.  The radiation specialist said that he would not be able to prolong his life but was hoping to slow the tumour down as he could become paralyzed if tumour was to pinch the nerves off at the base of the skull.  Also, was trying to give pain relief. 

His last CT Scan in May showed mets to the liver for the first time.  This past Monday his one knee and ankle was beginning to swell, by Thursday swelling went away.  As of yesterday his feet and ankles became very swollen again and weight gain of 1.4kg, now today his wrists and hands are swelling with another weight gain of 3kg overnight.  His stomach has been quite distended and hard for a couple of weeks now. 

Also, as of yesterday i started using a dosette for his medication.  He is becoming somewhat confused and is starting to repeat himself and not always understanding what i am talking about.  He is also falling asleep very quickly found him sitting on the side of his bed sleeping yesterday.

I know the end is near all the specialists have told us that within the last 3 weeks, and from what I have read it sure sounds that way. I am so emotionally confused I would like to see his pain and suffering relieved and him to become at rest but the closer it gets the more scared I get. He will be only the second person in my life that is close to me to pass away.  The first was my Nana and she only suffered for 3 days he has been suffering for 20 months.

Thank you again for your post it has given my alot of insight on what is going on.

Gayle

I urge you to get hospice involved.  We lost my Dad to lung cancer three years ago and his death was somewhat peaceful.  He died at home with my mom and husband by his side.  The were able to give him morphine drops as prescribed by his doctor.  The drops were gently placed into his mouth.  This eased his breathing and kept him serene.  We all spoke to him.  He was only on hospice for about 24 hours and seemed to have no pain.  He was aware up until the time he had the morphine.  Hospice was wonderful to my Dad and to the family.  They gave us a wonderful pamphlet called "Gone from my Sight" that explained what to expect through each step of the dying process.  I think we were fortunate to have this kind of peaceful passing, both for him and for us.  Three years later it still hurts but I guess that's to be expected when you love someone and they've been such an integral part of your life.  Hope this info helps.

Please find a hospice with a good reputation.  They are not all the same.  We live in NJ and they were wonderful.

Peace to you and your family.

Donna

I was just though the same thing only the steps happened much more quickly. My dad found out he had liver cancer which had also spread to the lungs and intestine. He went from living a totally normal life to being dead within 3 weeks. He went to the doctor because he was just not feeling good. He was very tired, white as a sheet, had shortness of breath,poor appetite, dark urine and light stools. The doctor at first didnt know what to think but then they did a chest x-ray and found the right lung totally filled with pneumonia. Gave him antibiotics and gave him the choice to go to the hospitol or go home and come back tommorrow. He chose to go home and go back the next day. The next day he seemed a little better. More antibiotics and was told to come back Tuesday for a followup. Monday comes and he just cant stand it. We took him to emergancy where they ran a bunch of tests and found nodules in his lungs. The doctor had also seen these. The hospitol admitted him to do more things. They did a cat scan and found the 2 huge masses in his liver. Got him to feel better by Thursday so they sent him home with oxygen 1 liter as needed. By the following Monday he was worsr than he had ever been before so we took him back to the hospitol and they admitted him to the cancer ward. They had also did a biopsy of the liver which showed adenocarcinoma in the liver. They told us that night that it was too advanced and that there was nothing they could do..He died 3 days later peacefully at home.