Hope4
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Hi to all, it’s been ages since I posted an updated about my dad.
Actually, it’s been since the site changed…. So here I am again.
My dad stopped all chemo as none of them were working.
The doctors were amazed, just 1 month ago, at how healthy he was, given the fact he should have started feeling the effects of his sickness. They were hopeful he’d be one of those unexplainable miracle cases, and so were we.
2 weeks ago he started having quite important ascites so he went into hospital to take 2.5L out. He was feeling much better after that although little by little he was finding it hard to walk and go up and down the stairs. Just on tuesday, he went into hospital again to take out the rest of the water in his abdomen, and this time they took out 3.7L. He woke up wednesday morning and has since been unable to get up from his bed unaccompanied and was quite yellow from a jaundice that was to be expected anyways. It honestly just changed SO suddenly it was hard to believe.
We waited to see if things would go better… convinced it was because he had been having really disordered sleep cycles, barely sleeping at night at all, and that it had just tired his body too much. He was then put on strong sleeping pills wednesday evening. Thursday he woke up, feeling a tiny bit better but not much. He threw up a lot in the evening which isn’t common with him. Friday again he was in the same state as wednesday. And this morning, out of nowhere, he starts sounding like he has a speech impedement or something. He sounds confused and seems to have difficulties saying long words. He keeps sleeping which wasn’t the case before. And is terribly yellow.
Because things came so suddenly, it’s been extremely hard to cope with. He keeps saying “Urgh, I don’t think I’m going to make it through this one” and it’s SO difficult to have to lie and be like “no, no, I’m sure you’ll get back up soon”.
We are now looking for hospice help and will be moving him downstairs. I’ve put university classes on hold because i actually have NO IDEA how much longer he’s going to last seeing as every day seems to get worse.
I was wondering – I heard that end stage liver disease patients suffer from the mentioned “confusion” and speech problems because of ammonia building up in their system. I was wondering if there is any medication that can slow that process down? And – although I know no one on this forum is God and will be able to answer this following question – but I’ll still give it a try- considering how fast he is degrading how long do you think he can last? To me 1 month seems miraculous – but I don’t know how long the whole process can last.
Also, does any one have any tips on meds or things we can do or give to him to prevent certain symptoms or discomfort?
He has no pain so far, which is beautiful. Just the confusion and sleepyness during the day. He seems to be more alert in the evenings.
And last, but not least, what can I expect ? As I mentioned in my first post months ago, I am 19, and I have no idea how to help my mother and older brother through this long and difficult process. I’m also too afraid to ask my mum “so what happens next?” because bringing up the subject of him dying is very hard.
I just want to know if life really does continue after, i mean… if any of us will be able to be happy again.
Thanks to all of you, for the support.
Elise
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Dr West
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Elise,
I’m very sorry to hear of how much he, and now you and your family, are going through now. It does sound like the time is getting close, perhaps even in the range of days to weeks, but you get far more in terms of assessing a patient by seeing them than just hearing about them. I think his doctor and/or hospice folks, once on board, will be able to provide some guidance.
The drug lactulose can be given to help with the serum ammonia buildup, but I don’t know that this would be worth doing in the absence of confusion with agitation. If he’s just somewhat sedated by the liver failure, as might well be the case, I don’t think there would be a clear motivation to intervene. It may even be a blessing to have him be sedated and comfortable as the end approaches.
In terms of what to expect, I wrote a post about this issue here:
http://cancergrace.org/cancer-treatments/2011/05/06/faq-dying-process/
There are a lot of posts about symptom management issues all throughout the section here on cancer treatments and symptom management. Beyond that, though, that’s really what the hospice team can be hugely helpful with. Many people find that they are wonderful and wish they had engaged hospice support earlier.
Good luck.
-Dr. West
Howard (Jack) West, MD
Medical Oncologist
Views expressed here represent my opinion, not those of GRACE or Swedish Cancer Institute. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor.
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Dr. Weiss
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I’m so sorry to hear this. It does sound as thought he’s beginning the dying process. You brought up hospice and I strongly endorse this–good hospice is a very powerful tool to ensuring comfort.
Dr. West brought up lactulose and I agree that in liver disease this can be very helpful. One easy test to see if ammonia buildup is contributing to confusion is to ask the patient to hold out their arms like they’re stopping traffic. The test is positive if the hands flap up and down. The one downside of lactulose (or upside if the patient is already constipated) is that it causes a lot of bowel movements.
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certain spring
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Hallo Hope, glad to find your post, though very sorry to hear about your dad.
Everyone I’ve read about on GRACE who’s had hospice, for themselves or someone close to them, has praised the help they’ve been given and the practical understanding of symptoms and pain control.
As to what happens after: you’ll all help each other. My mum died when I was 25 – also of cancer, which she’d had on and off for ten years. Everyone reacted in different ways, focussing on different things and at different times, but we all looked after each other. Your love will help your mother and brother, and theirs will help you. And yes, although it will seem for a while that a bomb has exploded, you will be happy again.
I saw my mum die and it wasn’t frightening or terrible. She had told me that it’s like someone turning out the lights in a house, and that turned out to be true. Dr West wrote a post about the dying process – read it when you’re ready, or not at all, but it might help you get an idea of what to expect:
http://cancergrace.org/cancer-treatments/2011/05/06/faq-dying-process/
But ask us anything else you like.
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Hope4
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Hello to all and thank yo so much for your advice and input on my situation.
Things went fast since Friday, we got a hospital bed this morning that we put in the living room downstairs so we don’t have to carry him up and down the stairs when he wants to spend time with us. We had the first visit of the hospice help this morning – such a lovely nurse that took care of cleaning my dad. She made things really un-awkward and was really friendly (it probably helps she’s good looking too  ).
The doctor came in to make sure we didn’t need any sort of special prescription for pain or what not. We’ve been doing good so far… his ascites keeps on coming back but he’s not too bothered by it physically so we’re not doing another puncture in case that makes him go away faster.
We took him off the sleeping medication that really wasn’t helping and that was actually what made him sound like he had speech problems. He’s much better off without them.
I have a question though… I think he knows what is going on because he’s been acting very sweet, constantly thanking me for being there for him and he even made me get a bouquet of flowers for my mom from him. He cried when he gave it to her, and when the family came over he kept saying how fed up he is and how he can’t wait til it gets better. He keeps saying that he’ll need at least a year to recover. And that is what worries me. Is it good to let a patient have hope of recovery even when it is impossible? One of our friends who is a doctor said it was healthy because it was reassuring to them (the patient) , especially if others play along.
Also, I’m scared that he’ll eventually start realizing it’s getting even worse : again our doctor friend told us that dying from liver failure is quite a “beautiful way” to go, because you also lose a bit of your consciousness along the way so you don’t actually understand what is going on. Is this true? Of course, I trust him, but he is not an oncologist therefore I guess I need to be reassured my dad will leave this world with no feelings of fear.
Sorry to keep asking all these crazy things but I am so worried about him, I want him to leave peacefully and be as comfortable as he can be, and as unconscious of the situation as possible so that he does NOT panic.
Thank you all, again. It feels good to be able to ask questions about all of this, and to actually get answers. It honestly helps, in every possible way.
Elise
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Dr. Weiss
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You’re focussing on comfort and that’s good. Indeed, when a person dies of liver failure, the levels of ammonia build up along the way. This acts as a sort of sedative–the disease itself creates some peace and comfort.
Doctor’s struggle every day with the question that you ask–how much to force a patient to face reality vs. how much to allow them their denial. As a doc, we often push hard towards reality when there are practical decisions that can be made by the patient if they better face reality. An extreme example would be a patient with a very curable cancer who refuses surgery out of a belief that the cancer just might go away on it’s own. In this case, pushing the patient to accept reality might help them. On the other extreme end is a patient who has made a conscious choice to not think about the realities of an unchangeable bad situation. In between, it’s a matter of your personal beliefs and family dynamics. I have no greater wisdom to share, but other patients and caregivers here might.
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certain spring
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Glad the hospice people are good. And I’m so pleased to hear that your father is able to show love after all the hard times you’ve been through. That’s a very sweet story about the flowers. Hang onto these moments – they will keep you going afterwards.
I think the question of what people know and don’t know is complicated. My mother’s oncologist said he always took his cue from the patient, and he felt my mother understood that she was dying but did not want to discuss it or indeed acknowledge it. I think that was very perceptive on his part.
From your previous posts I got the clear impression that your father knew that he was going to die of his disease. What he says now might be different because he is trying to make you and your mother feel better, or because he is temporarily confused, or just because he is oscillating between acceptance and denial. I don’t think you have to worry that he’s in a fool’s paradise of believing he’s going to get better. There’s an element of fantasy in all of us. I like to speculate about what’s going to happen to my niece, who’s 20, when she’s older, but that doesn’t mean I believe I’ll live to see it.
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Hope4
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Dr.Weiss : thank you for that. Actually we’ve now noticed that in the morning he’s pretty clear minded but throughout the day when he gets more and more tired that’s when he gets a little delirious. It’s such a relief to see that though! I don’t mind for my own personal “well being” that he can’t communicate with me clealy – just as long as he is comfortable and has no anxious thoughts or what not. If he’s just resting and not conscious of what it all means – I am more than happy with that.
We decided not to tell him anything. We’re getting another nurse from thursdays to fridays and fridays to saturdays to sleep in the same room as him because he wakes up all the time therefore my mom can’t sleep at all and constantly has to struggle pulling him up off the bed to bring him to the bathroom etc. Hopefully it will do her well to rest. We lied to him saying that the doctor had sent a nurse over several times a week to study his sleeping cycle as they wanted to determine why he wasn’t resting at night. He was actually enthusiastic about it so that’s also really good! Next scary step though: we think he’s eventually going to need diapers. It’s getting harder and harder for us to pull him up to get him to the bathroom. He really is finding it hard to walk but won’t admit it. I don’t know how we’re going to have to put it so he doesn’t feel diminished. We were thinking maybe telling him he has a blood clot in his leg and therefore has to try and get up as little as possible which is why we’ll give him diapers for a while. We’re still working on finding out a good enough excuse  It’s stressful because I don’t want him to feel embarassed.
Certain Spring: thank you for always having replied to my posts. It’s lovely to have people like you around here that are always willing to share their experience. I keep in my heart and in my head all the lovely things he has been saying so that I can have the best memories of him for the rest of my life. I’d be interested to know your opinion on the diaper matter, how do you think would be the best way to approach it? Our doctors here are of NO HELP what so ever at giving us advice. They think it’s just better to tell him he’s doing horribly bad and therefore just needs to use diapers and stay laying down. I’m not for that – because his hope is what gives him the will to wake up for an hour every day to eat and try his best to talk to us. If they take that away from him he’ll have such a hard time coping with it. I think, like you say, he knows but won’t admit it because that would be taking all his fantasy away.
Thank you both again!
E.
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certain spring
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Really tricky. Could the nurse talk to him about the diapers – easier coming from a professional than from a member of the family? Then you don’t need to discuss it with him, but just build it into the routine. The person who will have a good take on this is Dr Harman, if she is around. But in general I would go to a nurse for advice – perhaps someone from hospice? They’ll have a lot of experience at how to handle this in a way that saves your dad from embarrassment while keeping him comfortable.
Hope you and your mum and your brother are managing OK. Keep us posted.
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Hope4
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wow in less than 5 hours he’s managed to completely lose it.
he’s suddenly yelling our names every 5 minutes saying he can’t sleep, saying he doesn’t like his bed, then telling us to help him do his homework, that he needs to be at work in 2 hours etc.
The doctor gave us morphine + a sedative so that he stops panicking.
I hope, truly hope god has some heart and takes him back soon, I can’t stand seeing him panic like that and begging for help. It’s so hard. I don’t know how to handle it.
I know he can’t be in pain because of the morphin but he’s completely delirious.
I hope this all ends soon.
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laya d.
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Hi Elise:
I just came across this thread and am so sorry to read that your Dad’s health is declining. Having hospice involved in his care definitely sounds like a godsend, and I hope that they are able to keep him comfortable and pain-free for a long while. Coping with all of this is so hard. You are such a wonderful daughter and I’m sorry for all that you are going through. . .
Laya
1/10 – My Mom (58) dx w/ NSCLC-Adeno 3a; 1 cycle of neoadjuvent Carbo/Alimta before finding out EGFR+ (Ex. 19), then switched to 7 wks of neoadjuvent Tarceva/150 mg (major shrinkage); 4/10 – right pneumonectomy; 6/10 started 3 rounds of adjuvent Cis/Alimta w/ concurrent chest radiation (7 wks); 8/10 – NED; 11/10 – small nodule in left lung; 1/11 – 3 small nodules in left lung, start Tarceva/100 mg; 4/11 – suspected sclerotic met to hip, continue w/ Tarceva, add XGEVA, brain MRI clear; 9/11 – solitary 3 cm met (adeno w/ T790m mutation) to cerebellum, surgery and gamma knife, up Tarceva to 150 mg; 11/11 – 2 left lung nodules growing, biopsy on 1 shows mutation from adeno to squamous (shocker!), brain MRI clear, continue Tarceva & Xgeva; 2/12 – brain MRI clear, CT scan, remaining nodule slightly bigger – – monitor for now, Tarceva (reduced to 100 mg) & Xgeva continued; 4/12 progression and rebiopsy (confirmed adeno), stop Tarceva, switch to Carbo/Alimta; 6/12 maintenanceAlimta; 8/12 back to Tarceva; 10/12 Gemzar; 11/16 difficulty breathing; 12/12 hospice initiated…my Mom passed away peacefully on 12/19/12. Heartbroken.
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certain spring
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Very upsetting for you all, but people can get really confused and agitated with some medications. It will pass for sure.
As Laya said, you are a wonderful daughter. I was thinking earlier today how strong you are being, and how some people really rise to the occasion. If your dad were not so ill he would be very proud of you.
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Hope4
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Thank you Laya and Certain Spring!
Sadly, my dad passed this afternoon but so peacefully I cry only because the past week has been tough for him and my family as he suffered quite a bit. He was so beautiful when he left – i don’t think i’ve ever looked at my dad in such a way. He waited til all family was gone and that it was just my mom, my brother and I holding his hand, to let go and rest in peace. He went into coma this morning but could still give little responses to what we were telling him my frowning or moving his hand onto ours or trying to smile. A really hard but beautiful moment I had with him.
It’s only been a few hours but I feel relaxed, simple because I know he’s still around because the house doesn’t feel empty. I can feel him by my side, and I am happy he is in peace and resting.
My mother and I will be giving a donation to Grace because this helped us SO MUCH through all the process, and he was thankful I had people online helping me understand and cope with his sickness that himself wasn’t able to explain sometimes.
Again, a HUGE thanks to everyone. A long road is in front of me but I know he’ll be holding my hand through it all. So proud of him for fighting this stupid disgusting disease.
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laya d.
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Oh Elise. . .
I’m so very sorry to read of your Dad’s passing. It is absolutely heartbreaking, and I give you and the rest of your family all my sympathies. Again, you are and have been a wonderful daughter and your Dad was an incredibly lucky man to have had you by his side throughout this horrible ordeal.
With a heavy heart,
Laya
1/10 – My Mom (58) dx w/ NSCLC-Adeno 3a; 1 cycle of neoadjuvent Carbo/Alimta before finding out EGFR+ (Ex. 19), then switched to 7 wks of neoadjuvent Tarceva/150 mg (major shrinkage); 4/10 – right pneumonectomy; 6/10 started 3 rounds of adjuvent Cis/Alimta w/ concurrent chest radiation (7 wks); 8/10 – NED; 11/10 – small nodule in left lung; 1/11 – 3 small nodules in left lung, start Tarceva/100 mg; 4/11 – suspected sclerotic met to hip, continue w/ Tarceva, add XGEVA, brain MRI clear; 9/11 – solitary 3 cm met (adeno w/ T790m mutation) to cerebellum, surgery and gamma knife, up Tarceva to 150 mg; 11/11 – 2 left lung nodules growing, biopsy on 1 shows mutation from adeno to squamous (shocker!), brain MRI clear, continue Tarceva & Xgeva; 2/12 – brain MRI clear, CT scan, remaining nodule slightly bigger – – monitor for now, Tarceva (reduced to 100 mg) & Xgeva continued; 4/12 progression and rebiopsy (confirmed adeno), stop Tarceva, switch to Carbo/Alimta; 6/12 maintenanceAlimta; 8/12 back to Tarceva; 10/12 Gemzar; 11/16 difficulty breathing; 12/12 hospice initiated…my Mom passed away peacefully on 12/19/12. Heartbroken.
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certain spring
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Dear Elise, I am so sorry to hear about your father. Even though you knew it was coming, it is still a big shock when it comes. I am glad you and your mother and brother were there to the very end. That is the most we can do for people – hold their hand until they have to go. Grief is terrible but I know you’re going to be a great support to your mother and brother, and they to you. You will see happiness again, for sure. And you’ll be a stronger person for what you have gone through with your father.
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Dr West
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Elise,
I am so sorry to hear of your father’s passing, though relieved that he is no longer suffering. Thank you for your kind words about GRACE…I am encouraged to think that any information we could provide, along with the sympathy of people who know very well what you and your family are going through, could have helped you all through such a difficult time.
Please accept my heartfelt condolences.
-Dr. West
Howard (Jack) West, MD
Medical Oncologist
Views expressed here represent my opinion, not those of GRACE or Swedish Cancer Institute. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor.
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Dr West 1 year, 2 months ago.
