Good Days and Bad Days
How many of you with loved ones near the end, or those that have already experienced the loss of your loved ones, saw him or her have some really great days and then some really bad days? Is this normal?
My dad has days where he's in bed in pain for all but two hours of the day, but then he has a day where he goes to a meeting and out to lunch, only to come home and sleep the rest of the day.
Mom had to call hospice in two nights ago because Dad started with his shakes and running a fever and was in so much pain she couldn't help him. Hospice came and stayed for over two hours until they could get him comfortable. Mom was so worried she almost called me to come over because she thought for sure we were going to lose him within a few days (she didn't call me in the end because she wanted to see if hospice could help and didn't want to worry me, I've since told her to call me ALWAYS). His heart rate was high, he had a fever and was bent over in pain, then writhing in bed uncomfortable, his swelling was back. Hospice got him through it, but it was scary evidently.
Today, he's doing a funeral for a 95-year old woman at the church he's the lay pastor for. Hospice told him he could no longer drive and that maybe, just maybe, he should take it easy because doing things really wipes him out and may be causing him more pain. Dad feels like if he stops doing things like funerals, he's giving in and he's not ready to go yet. He is arguing about the upped pain medication as well, because again, he feels like it's just one step closer to death if he has to take round the clock pain meds. My mom has told him that she simply can't handle him if he's in so much pain, that it's too much for her, so he's reluctantly taking them.
I love him so much and I love his fight, but sometimes it makes me wonder if he's doing too much and thus making himself sicker. It also seems like lately, his bad days are outweighing the good days and maybe it's because he's pushing himself?
By the way, I do not weigh in on any of this, I just listen and observe, I'm just worried about him and about Mom. I certainly don't want Dad to just sit around and wait to die, but I worry that by trying to prove something, he's actually making himself go quicker and in more pain. It's him in pain that I can't stand. I literally can't bear the thought of this.
Sorry for my rambling. You don't even need to respond, I just needed to get that out. It probably makes no sense to most of you and you probably think I'm ridiculous for worrying that my dad is doing "too much" when he knows he's dying. It's hard for me to explain why I feel this way.
Dad diagnosed pancreatic cancer October 2011
chemo/radiation Oct-December 2011
Whipple- January 2012
Found out cancer spread- May 2012
Stopping all treatment because it's not working- December 2012
Discharged from hospice December 2013
Cancer's Back- June 2015
Hospice Care Again- June 2015
Passed Away- October 26th, 2015
Kaye...you don't want your dad to be in pain and you don't want either of your parents to suffer. It makes perfect sense to those of us who are not living with the disease. We are the bystanders, we love, we worry, we try to do what we can and we offer advice, good, bad or indifferent because we care. Don't beat yourself up over every thing you think or fear (and I am choking on my own hypocrisy right now...because I desperately need to heed my own advice) we do the best we can with what we have got. Sending you hugs and a reminder for both of us to live for the now...we can worry about the other when the time comes.
hi mommyof two. You present a real issue in the area of end stage management. My opinion is that, if all treatments have stopped and the end is acknowledged as the next stop on the journey, then it is incumbent on us as family and oved ones to support the person who has the cancer in helping them to manage those last days in the way that is most important to them. That is what I hope my family will do for me should those days come, which they may.
From what yuo describe, it is reasonable that your Dad will have more bad than good in his daily life. What a great guy that he still wants to celebrate the good and meaningful! He can't really make himself sicker at this point, I don't believe. He can only make the best use of the time he has in the manner most important to him. It is not easy but, if he were mine, I would try to support that ambition in any way I could. When it is too much, he will know that.
When the world says, "Give up," Hope whispers, "Try it one more time."
Follicular lymphoma diagnosed August 08, Stage 1
2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09
Restaged to Stage 3 May 2010
Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.
Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.
Significant progression detected in PET scan - December 2012
Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.
July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.
August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".
February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.
June 2014 - started 2 year maintenance Rituxan, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.
February 2015 - Doc and I agreed to stop R maintenance as it is depressing my immune system too much.
June 2015 - Confirm that the beast is back by physical exam, will scan in August after esophageal issues settle down so we can get a clear view.
August 2015 - physical exam in error, PET/CT shows no evidence of disease. Remission continues well into second year!
December 2015 - Cardiologist tells me I have plaque buildup growing at an alarming rate. Stent or bypass down the road but not yet...
March 2016 - new tumor below the jaw so remission is over. Back to active surveillance until treatment is needed.
June 2016 - C/T scan indicates presence of multiple lesions in iliac chain.
August 2016 - PET/CT shows multiple areas of lymphoma as expected plus new areas of concern in bowel.
January 2017 - C/T scan shows significant progression in cervical and inguinal lymph chains, largest tumor is impacting hearing, measures 2.1x4.6 cm. 4 to 8 cycles of R-CVP, 1x3weeks to commence 2/6/17.
Hi Kaye. I feel the emotion and love for your dad in your post. And I know that this is a very difficult time for your family. But your dad seems like he has a mission to complete before he passes. The fact that he is performing funerals for others strikes me as very tender and loving. I think he will know when it is time for him to rest even though he may exhaust himself. While I am just an observer, he seems like a wonderful man who knows what is happening but still is in service and giving to others. My prayers will be with you.
Husband Diagnosed "Borderline Resectable" pancreatic adenocarcinoma January 2012. Chemotherapy for six months. Successful Whipple August 2012 with clean margins, 3 out of 12 nodes positive. Post Whipple Chemo/Radiation for 5.5 weeks ended Dec. 2012. NED for 2.5 years with great quality of life. Lung spots identified and removed Nov 2014. Low Dose Chemo kept lung spots at bay for quite a while, then pleural efflusion started. Husband died peacefully at home on January 14, 2017 after electing no more chemo. He lived a few days over 5 years from diagnosis. "If love could have kept you alive, you would have lived forever."
This is a very similar issue that we were having with my dad as well. This summer, my parents LIVED. I mean, they didn't just go day to day...they went to Florida, New York City, day trips to the mountains, camping, Niagra Falls, and just the weekend before he died, sightseeing in Baltimore. They did more in this summer, knowing that it would most likely be his last, than they had done in the past years. But after each of these trips, he would be completely exhausted and feeling terrible. So my mother, and the rest of us, were always worried that he was being pushed too hard and that we were speeding up the process.
But, do you know what he was doing if he wasn't travelling and "living"? He was sitting on the couch, lots of the time crying, worrying about dying and just being miserable. It was definitely a trade off to have him feel so rotten after these trips, but during the trips, he was happy and he was alive.
My mother still feels guilt and has even said that she feels like she killed him, so we have to remind her that it was this damn cancer that killed him. She made him live and I think that is something that is priceless. I think that it's wonderful that your father still wants to be there for other people and that he still wants to push himself to live.
Anyway, I just wanted to let you know that I do know how you feel because I was in the same situation. I look back now and realize just how important making those memories were now.
Thinking of you always.
March 21, 2011 - Dad diagnosed. Pancreatic Adenocarcinoma on head of pancreas.
April 2011 - Gemcitabine and radiation for a total of 12 weeks.
October 14, 2011 - Successful Whipple procedure. Cancer free! Best 5 months of my life!!!
March 2, 2012 - CT scan and discovery of possible mets to both lungs.
March 23, 2012 - Biopsy confirmed recurrence.
May 2, 2012 - Folfiri regimen started. Stopped after 2 treatments due to infection.
June 2, 2012 - Switched to Xeloda
Sept. 21, 2012 - No more chemo...treatment not working anymore. Now we wait and pray.
October 6, 2012
- My dad is now at peace in Heaven, watching over us until we meet again.
♥ Forever in my heart! Miss you every day more than words can say! ♥
Like Kermica said he really can't make himself "sicker" at this point, the disease is going to run its course and if he is still having good days and getting out it is a good distraction. Everyone is so differently affected by PC, my dad stopped eating 2 weeks before he died, and about a week before he couldn't get out of bed at all. It is still very hard for me to talk about that time so there is maybe more I could offer but I am not ready to. I think you will instictively know when things get to a certain point.
You're in my thoughts as always,
Dad diagnosed with Stage IV PC with mets to liver March 4, 2011 ~ Died 11 months later, February 4, 2012.
I can't say I understand just where you're coming from, we often have the opposite problem with my grandpa and wish he got out and did more to lift his spirits. But putting myself in your shoes I can totally see why you would be concerned, you want him to enjoy as much life as possible and don't want him to suffer in any way. I would feel the exact same conflict. But like others have said, in order to enjoy as much life as possible, he has to ENJOY it. And only he can determine what he must do in order to live whatever time he last left to the fullest.
I hope that your dad gets as much life out of life as he can and that you can enjoy as much time with him as possible during those good days. I hope there are more good days in the future for you all.
Spring 2012 Grandpa diagnosed, Stage III PC
Summer 2012 Xeloda/Radiation
Fall 2012 Scan, Tumour grown and mets to liver, Stage IV
4.5 month break from treatment
Winter 2012 Scan, mets appear to be small enough that they can't say for sure what they are
3 weeks Gemcitabine
Spring 2013 Scan, no shrinking but no growth or spread
3 more weeks Gemcitabine
~ Made it to the one year milestone ~
Late Spring 2013 Scan showed more liver mets, end to chemo.
June 2013 He went to sleep.
Kaye, it just is. Today my husband woke up at 8:30, peppy, had toast for breakfast (after sleeping pretty much for the past 3 days), read the paper, made plans to the movies, talked more than he had in the past three days. Smiled! . Now he is asleep again, near the fire. I'm still betting on the movie later though. I know you didn't need response. Let's face it, the whole thing just sucks!!!!! And we always worry if we are doing the right thing. Sure sounds like you are! hugs to you. love,
"May you be held in compassion; May your pain and suffering be eased; May you be at Peace"
I think being active is actually beneficial. I have always been over the moon when he does something even if after he has to sleep hours. Fr my dad, even making dinner is an achievement, he would never have the ability to go on holiday now or any trips or work. So whatever he can do, do not worry......He will know when his body won't allow it anymore..
May 2012 - dad jaundice and weight loss, ultrasound sees lesion on pancreas
Summer 2012 - all tests possible, biopsies inconclusive
Nov 2012 - sees oncologist, put on gemcetabine - doesn't work
Dec 2012 - discharged under hospice care... Frail but ok...
December 2012 - Ascites
February 2013 - Now very weak.....
23rd February 2013
- Dad passes away, no more pain.....