How fast it all changed.

[Pea-n-Me]

Just catching up here. I'm sorry the last couple of days have been so difficult.

Let me ask you this - is he dehydrated? From the sound of things, I can't imagine how he wouldn't be, as he'd been eating and drinking so little for so long, and is now vomiting, etc. Dehydration can make a person feel really miserable! Are they giving him IV fluid to rehydrate? What about regular anti-emetics like zofran to help control the nausea? (As in, often!) And IV Proton Pump Inhibitors? How is the dilaudid working for his pain control? Is he awake and alert, or drowsy? If he's drowsy, it will be good for his body to get some rest and sleep. I'm hopeful, if these things are happening, that perhaps he'll feel a little better in the next couple of days. (Although I have certainly seen cases where, even with all that, people can still feel awful. The GI cancers can be so hard that way.) It would've been ideal if some of this could've been addressed last week, but it's not unusual to be sort of in limbo when the ball isn't fully rolling yet. But keep it as a hope that perhaps he might be feeling better if he's now getting some of these basic therapies to help him. I will pray for that. I took care of two young people this week also with metastatic cancer, and I was thinking about you all, too. Challenging times, for sure. But they are both holding out hope, and I think you should, too, at least for right now. Continue to re-assess over the next couple of days. Think of it as a holding patten until you see if they can get him to a place where he's feeling better.

I hope MIL/BIL are not a problem.

 

[Distinkt]

Just hugs. You are doing a great job as your husband's advocate and support. It is hard but it is an honor to be allowed to continue the journey with him. Don't second guess yourself, you are doing a good job.

 

[antmaril]

Rodeo. My heart is breaking for all of you. I am so sorry. I wish I could give you a hug.

 

[Tattylou]

Just reading through all of this. I'm thinking of you and your family. I can not even begin to imagine what you are feeling.

 

[excited family]

Rodeo, I am so sorry for what you are going through. I feel badly that I wasn't able to read this earlier but things have been hectic with my husband. We just had our first appointment at the cancer clinic and found out that his lung cancer has also spread to his bones, not just his liver. We heard the one year median survival talk and are now waiting to get genetic tests back to see if targeted therapy can give him an extra year or more. Fortunately he gets 5 days of radiation starting on Tuesday to try and make it easier to breathe and to now relieve pain in his back which he thought was a pulled muscle. We have to wait until May 1st to see the chemo oncologist who should have all tests back by then.

He had a chest x-ray on February 27th because of a stubborn cough. I totally understand how fast things can change and how hard it is to deal with everything that is thrown at you. I really hope that your husband is able to gain enough strength for chemotherapy. I have been thinking of you all week while dealing with my own nightmare. Strength in numbers. I have been stealing strength from your thread and it was the first thing I did when we got home. I still have to call the in-laws to update them.

I hope things take a positive turn for you. It is all too fast. You are always in my thoughts.

 

[2China2009]

Worst possible day today. Hmm. I think I said that before, so guess I was wrong.

Diagnosis: Stage Four - Pancreatic Adenocarcinoma with metastisization to the liver. (As the oncologist put it - it's the Patrick Swayze as opposed to the Steve Jobs)

Prognosis: Incurable. With chemo he might have two years. Maybe within that time more treatments are uncovered.

However, he is currently not in condition to receive chemotherapy. He is too sick, and weak. He has poor pain management, has started throwing up - once yesterday and once this morning before we left for the appointment. It took about ten minutes for him to finish being sick to leave for the appointment, it takes about ten minutes to drive there, another five to get the wheelchair and get him upstairs and he managed to sit for about another ten in the wheelchair before saying he needed a gurney; had to lie down. So out of bed for 35 minutes did him in for the day. To start chemo, she wants him to be up and functional for about half the day. He is currently bedridden.

The oncologist sent us down to emergency for triage and re-admittance. Further testing to determine what is going on. If this is a situation where poor pain management is leading to nausea is leading to anxiety and back again, then he has agreed to narcotic pain relief and they will adjust his anti-nausea meds to try and get him stable. Then if we can get his appetite back and get some food into him maybe he can get strong enough for chemo. That is the hope.

If this is the cancer taking over - his prognosis is weeks to a short number of months.

He had a morphine drip in the ER and slept for the afternoon. He woke around 5 and was starting to feel the pain coming back so they switched to I believe she said hydromorphone but not quite sure that was right. In any case - stronger at a lower dose but also longer lasting. I had to pick DD up from work at 6 and he said to just go home for the night and get some rest - he'd be asleep also. Still waiting for him to be moved up to a room - currently in ER still. He was pretty upset. Said when he woke up "well, I'm fu***d" I told him to take tonight to be pissed and cry and get out all the toxic energy he's entitled to feel but that won't help him - dump it all. Tomorrow we fight. He needs to eat, gain strength, sleep and be ready for chemo.

I've just told the kids.

He needs to onto hospice care. He can have a dilaudid pump at home along with nausea medications. I agree with the oncologist. He will never get enough strength or nutrition on board. Chemo will kill him and hasten his death. I also think your local hospice house would be a great idea. He will 24/7 care from staff that know everything. You can go home and sleep at night and get rest and just be his wife during the day and not his caregiver. From what is sounds like he most likely has less than a few weeks left. As he gets adequate pain control he will be sleeping more and more and have less awake times. He will slip into a coma and pass peacefully. Right now you need all the medical care you can get. DO NOT let him leave the hospital until his pain is very well controlled along with his nausea. Get a hospice consult ASAP and get their opinion about time frames and what they can do for him now. Also get a palliative care consult for pain control. You can not take him home and care for him yourself. Start yelling and screaming for what he needs and stand your ground. It sounds like your system for medical care is not good. You also need some supprort along with your kids. Let your community shower you with love. Let people know what you need and they will take care of you. If they want to bring food let them. Leave a cooler outside your front door. If you need help with the kids let them know. If you need your house cleaned every week let them know. I hope you have carved out some time to get all paperwork signed etc. At this point he will not be able to sign as he is on pain medication and that will alter his sense of the here and now. I know this has been a very fast rollercoaster for you all. Please know that I am not being negative,but I hope this will help.

 

[mom2rtk]

Rodeo, I am so sorry for what you are going through. I feel badly that I wasn't able to read this earlier but things have been hectic with my husband. We just had our first appointment at the cancer clinic and found out that his lung cancer has also spread to his bones, not just his liver. We heard the one year median survival talk and are now waiting to get genetic tests back to see if targeted therapy can give him an extra year or more. Fortunately he gets 5 days of radiation starting on Tuesday to try and make it easier to breathe and to now relieve pain in his back which he thought was a pulled muscle. We have to wait until May 1st to see the chemo oncologist who should have all tests back by then.

He had a chest x-ray on February 27th because of a stubborn cough. I totally understand how fast things can change and how hard it is to deal with everything that is thrown at you. I really hope that your husband is able to gain enough strength for chemotherapy. I have been thinking of you all week while dealing with my own nightmare. Strength in numbers. I have been stealing strength from your thread and it was the first thing I did when we got home. I still have to call the in-laws to update them.

I hope things take a positive turn for you. It is all too fast. You are always in my thoughts.

Your family is in my thoughts and prayers as well. Please take care of yourself.

 

[focusondisney]

He needs to onto hospice care. He can have a dilaudid pump at home along with nausea medications. I agree with the oncologist. He will never get enough strength or nutrition on board. Chemo will kill him and hasten his death. I also think your local hospice house would be a great idea. He will 24/7 care from staff that know everything. You can go home and sleep at night and get rest and just be his wife during the day and not his caregiver. From what is sounds like he most likely has less than a few weeks left. As he gets adequate pain control he will be sleeping more and more and have less awake times. He will slip into a coma and pass peacefully. Right now you need all the medical care you can get. DO NOT let him leave the hospital until his pain is very well controlled along with his nausea. Get a hospice consult ASAP and get their opinion about time frames and what they can do for him now. Also get a palliative care consult for pain control. You can not take him home and care for him yourself. Start yelling and screaming for what he needs and stand your ground. It sounds like your system for medical care is not good. You also need some supprort along with your kids. Let your community shower you with love. Let people know what you need and they will take care of you. If they want to bring food let them. Leave a cooler outside your front door. If you need help with the kids let them know. If you need your house cleaned every week let them know. I hope you have carved out some time to get all paperwork signed etc. At this point he will not be able to sign as he is on pain medication and that will alter his sense of the here and now. I know this has been a very fast rollercoaster for you all. Please know that I am not being negative,but I hope this will help.

Please read Rodeo's update today, they have gotten an option for hospice. And actually, earlier in the thread she listed all the options they have for assistance at home. So their system is not as bad as you think.

 

[focusondisney]

Rodeo, I am so sorry for what you are going through. I feel badly that I wasn't able to read this earlier but things have been hectic with my husband. We just had our first appointment at the cancer clinic and found out that his lung cancer has also spread to his bones, not just his liver. We heard the one year median survival talk and are now waiting to get genetic tests back to see if targeted therapy can give him an extra year or more. Fortunately he gets 5 days of radiation starting on Tuesday to try and make it easier to breathe and to now relieve pain in his back which he thought was a pulled muscle. We have to wait until May 1st to see the chemo oncologist who should have all tests back by then.

He had a chest x-ray on February 27th because of a stubborn cough. I totally understand how fast things can change and how hard it is to deal with everything that is thrown at you. I really hope that your husband is able to gain enough strength for chemotherapy. I have been thinking of you all week while dealing with my own nightmare. Strength in numbers. I have been stealing strength from your thread and it was the first thing I did when we got home. I still have to call the in-laws to update them.

I hope things take a positive turn for you. It is all too fast. You are always in my thoughts.

I am so sorry to hear your update. All of us are here for you too.

 

[LSUmiss]

Ok, I need to stop saying worst day ever. Apparently the universe is determined to prove me wrong. I was at the hospital where the palliative nurse and social worker came to visit us. His latest blood work from yesterday showed marked deterioration since three weeks ago. She said she can see the changes in his face. He has "that look." She said she never says never but is not hopeful that he will even regain the strength to have chemo. His is very aggressive.

So the morning consisted of discussions about hospice care and assisted end of life. Which I had no idea was even legal here but learned that yep, legal for terminal diagnoses. He does not want that route, but we will be meeting at the start of the week to see if he has improved at all; if he might like to try home again, which he doesn't seem to, if he wants hospice or if he needs to remain in hospital. He seemed to like the way the hospice house sounded and seems to be trying to reduce the burden on me. I said he needs to be where he feels best.

He gave me everything I need to shut down his business. We discussed what arrangements he wanted, which we have never really had a serious discussion about. He is choosing cremation. I honestly cannot believe all of this. I can't believe the speed. Twenty three days ago he went in thinking he had a back issue or maybe appendix.

I have to go back soon because his mother, who he has been estranged from for decades is on her way with his brother who is not altogether stable. When their dad was dying four years ago, they had to call the police bc he assaulted one of the doctors. I've alerted the hospital to that and they said security will be available should we need it. DH doesn't even want his brother there but his mom doesn't drive and that's who is bringing her.

I’m so sorry. I completely understand how you’ve said you sometimes can’t believe this is happening. I still have moments that I can’t believe what happened & it has been over a year. With my dad, they thought he had gall stones & the outcome was what you have been describing with the same diagnosis. While it’s unbelievably hard to come to terms with choosing hospice care, that is one of the regrets I have had about my dad’s care. At first we chose to fight too but mostly b/c no one really gave it to us straight. No one actually said he was wasn’t a candidate for chemo until the end b/c his bilirubin was too high. But once he went on hospice, he was so much more comfortable & happy. We also all took leave from work & stayed with him all day & night (he was home at my house). Unfortunately, we made that decision very late in his treatment so we only got a few days with him. I wish we had done that from the beginning so that he could be happy & comfortable for all the time he had left. But, it was impossible to know that then b/c your first instinct is to fight & survive.

 

[VictoriaT]

Many hugs and prayers from all of us!

 

[leebee]

Rodeo65 and Excited Family, you are both doing the hardest, most selfless thing you'll ever undertake in your life. Mets to the liver, mets to the bone... some of the ugliest words I've ever heard spoken about a loved one. I had the honor of supporting my best friend during her last 9 months of life, over 30 years ago, when she fought her battle with pancreatic cancer. She chose to live with my sister and me during that time, and although it was crushing for all of us, I'd do it for her again in a heartbeat... if only. Do not be afraid to talk about the hard stuff, don't be afraid to cry, to yell, to laugh out loud. Remember that you are your husband's best advocate, and if you have to push, annoy, and yell to be heard to get him what he needs, do so. Don't be intimidated by the staff, don't let yourself be quiet because you don't want the nurses to think you are "that person." You are who your husband has in his corner, and he's going to need you to fight for him because he's not going to be able to fight for himself. Regardless of the outcome, getting there will be the most difficult time you've had, but you'll find your love for your husband will make you stronger than you ever believed you could be. You are both remarkable women, and I can tell from reading your posts that you have the strength to do this. Remember that we are all here for both of you, keeping you and yours in our thoughts and hearts.

 

[fab1976]

I am an often reader, seldom poster, but wanted to give you my thoughts and prayers which I do rarely say to people. I am from Hamilton, living in Mississauga now. A friends father spent his last days at a very amazing hospice in Hamilton a couple of years ago, I won’t name it but hope you are able to find some care that brings you comfort and support. Your thread title really does say it all. I am so sorry for you and your family having to go through this .

 

[rodeo65]

Excited - your'e on my mind also; parallels and all...I so hope you get the time we are, it seems, going to be denied.

I have to say that while it seems our health care system has been slow to get us answers and in some areas has been really inadequate, the nursing care he has received with only one exception has been outstanding! As have the palliative staff and social workers.

He was moved up to a room tonight instead of the ER where he's been since re-admittance yesterday. I am so grateful he got to have a nice visit with his mother and brother. I was really nervous that BIL in particular was going to be an issue. I left them to it once I made sure that security was aware of the situation and the nurses did a couple of extra check ins to see how his pain was.

He had a little breakthrough pain because I believe they missed his 6pm dose while he was being moved. Otherwise, though he says he is much more comfortable. Yes, Pea-n-me he was dehydrated and has been on IV fluids since yesterday afternoon. Today they turned the flow down as he was drinking a fair amount himself. The dilaudid seems to be working and he has slept a lot today.

2China, I don't think you're being negative. I do still hope, obviously, that he might manage to get enough strength back to tolerate chemo, but I understand that is unlikely. He told me today he feels it is out of control now. He is barely texting anymore. Too tiring, when while he was in initially, he texted me almost non stop when I was not at the hospital. I think I mentioned last update that we will be meeting with the palliative team at the start of the week to see how his weekend went, if there is any improvement and what choices he is wanting to make in terms of hospice or home care.

I think the hardest thing for me today was seeing how broken my kids are. DD cried for four hours in her room tonight. DS opened up a lot, although said he is not open to cancer support groups or grief counsellors. He said he regrets fights they've had and just doesn't want his dad to die. Same. I would do anything if I could just change this for them.

 

[OhhBother]

Rodeo, just wanted you to know you and your family are in my thoughts throughout the day. I really wish there was something I could do for you other than send these words across the internet. My Southern upbringing compels me to bring you a cake or something. I pray for comfort and strength for you all.

 

[luvflorida]

Rodeo65- I read this whole thread yesterday and today and I just want to send hugs and prayers your way, and say that I am so sorry for all that you and your family are going through. My heart goes out to you and your children.

The DIS can be a wonderful place to come and let it all out, so to speak. I'm glad that this thread is bringing you a bit of comfort. Please know that we are all keeping you and your family in our prayers and thoughts.

 

[nycdisneygal]

Rodeo - I am so very sorry.

 

[BadgerGirl84]

I’m do sorry to hear things are declining quicker than expected for your husband. I hope he can gain some strength. I just said a prayer for peace, strength and bravery for your family.

 

[Neesy228]

Unfortunately, we made that decision very late in his treatment so we only got a few days with him. I wish we had done that from the beginning so that he could be happy & comfortable for all the time he had left. But, it was impossible to know that then b/c your first instinct is to fight & survive.

Hugs to you, LSUMiss. We had a very similar experience with my MIL. The first instinct is definitely to fight, but I wish we too had moved her to hospice care sooner. Her mental and physical suffering was unnecessary...

Rodeo, is Cannabis oil an option for you in your area? I know there are a lot of hoops to jump through in the U.S. to get it if it’s deemed medically necessary, but maybe it’s different in Canada? He can take it in suppository form for pain and anxiety and who knows what other value it may deliver...I believe there are many unresearched benefits and, at this point, it doesn’t hurt to try.

Ask lots of questions of your palliative care team. Get phone numbers to call when you remember more. Those people were a tremendous help to us while we prepared to move my MIL into hospice care.

Don’t be afraid to speak with the different hospice options and see how you feel about them. While most hospice nurses and houses are wonderful, you may find that you feel more at ease with one over another.

And lastly....my MIL withdrew over her last couple of months...she didn’t want to burden anyone and she was so distraught. I sense your husband may be feeling the same. He may say that he wants a hospice house because he doesn’t want to feel like he’s causing you and the kids more heartache. I finally called my MIL and told her that she was most definitely not a burden to anyone, and if we only had a short time with her we wanted to spend those days holding her hand, leaving nothing unsaid and celebrating the good times. And after that, we did. We had about 2.5 weeks with her at home, on hospice...it was a difficult time, but none of us would have traded those days for anything. I encourage you to steal as much time as you can. Make sure he understands that you want time with him and he’s not a burden...

You and your family continue to be in my thoughts.

 

[lisaviolet]

It sounds like your system for medical care is not good.

Rodeo, I am so very sorry to hear about your update. Love sent to your entire family. I can only imagine how shocking it is for you all.

Also to you excited family.

________________________________________

2China2009, one of the issues in Ontario is the awkward separation of in hospital care and home care. That indeed is a true issue. As is the number of interviews one is put through if going back and forth between systems.

However, the support we have in Ontario for in home palliative care is beyond exceptional (Actually in home care in general). So "not good" doesn't even come near it. However, they can't be involved while the patient is in the hospital and here is the frustration of separation of care. And they have to have the diagnosis as well - a specific diagnosis - to jump in fully, and they just got it. But once again they can not jump into action while the patient is still in the hospital. When one is out and at home it is unreal the support that is given - not to mention the clarity, organization, and broad support team instantly looking after pain, anxiety, equipment in record speed and coordination. Educating at every turn. The team is overseen by a Nurse Practitioner and a care coordinator and includes a doctor, palliative nurse, PT, OT and PSWs. All simply given. No applying, no payment. Heck so much of the equipment needed is "free". In quotes because we all pay into our country and province's services, of course.

And as my father's nurse used to say "a lot of people don't realize that palliative care at home does not pressure anyone not to fight anything or search out chosen care, if that is where they are at. Or simply to do nothing, if that is where they are at". It is not an either/or here in Ontario. And I think that's a wonderful stance/choice in home care here. I remember my SIL telling me that in California a choice for palliative care meant a stoppage of other options for them. And they never made that choice.

I lost my brother and father within three weeks of each other, both of cancer. And it was a very hard lesson to learn that everyone sees their journey differently. Not to mention every family member as well. It was agonizing at times for me to see my brother fight up until the last minutes of his life, and all that brought to him both physically and mentally - how draining that could be for him and to see. At times I wanted to scream or cry about it all but I certainly did not want to bring any conflict to his family, wife and children. And was sensitive to that. But other parts brought me joy to see - my brother would travel in the worse physical state, grabbing whatever experience he could.

In contrast, it was comforting to look after my father in his home while he did the minimum needed and had his days filled with a bit more peace and ease of a day (my possibly slanted way of looking at it all but how I see it and saw it nonetheless). But it was agonizing for my brother and other loved ones to see our father not fight the same. They could not understand it. I saw my father as a man who had lived his life and was making an educated choice for his own life. But many were frustrated that he said no to certain avenues. His no to certain avenues made his last months filled with some wonderful memories in and out of the house. A huge lesson, hard to swallow. Everyone is different. Every cancer is different. You can decide what is right and wrong, but really so many people see things differently.
And it's tough to know that even if you love someone like no tomorrow, that it is not about us, our thoughts, our viewpoints - it is what they think is absolutely best for them. Hard to accept at times, but it is all our journey to choose. Anyway, rambling off topic now.

Rodeo, excited family and others on here dealing with all of this, love sent to you.