Help to understand what is next...

[Pattycakepgh]

I have been reading and asking questions of the Advanced Prostate Cancer group as my sweetheart has battled for the last 18 months. I have found it so helpful to read of others experiences and benefit from the wisdom of their journeys to help and support him. I am switching to talk to all of you now for me. We were told on Friday that the cancer that has metastasized to his liver has reached a point that there are no more treatment options, and so we have made an appointment to meet with Hospice this week. His doctor said that barring any other medical issue, that liver failure is what will take his life....Mike is feeling ok right now, a bit fatigued and he falls asleep while watching TV and needs to sit and rest after we are out. But this week we went to the golf course and hit golf balls, took a nice walk along the harbour, had swims in our pool.... but the doctor told us he has a few weeks to a few months. I wonder if based on your experiences, you can tell a bit of what to expect in these coming weeks as he becomes more ill? He would like to see his children and grandchildren who live a two to three day drive away (we are in Florida and they are in Ohio and he will not fly). I am very happy for us to take a road trip to be with them, as roads trips are something we have enjoyed so much over the years. We spoke to his children yesterday; they want us to come and for me to find us a place to stay there and possibly have him in Hospice there. They suggested we wait two weeks to come because of things in their own lives, and I am concerned that I may not have that kind of time. I am not sure how quickly the liver failure may progress as the "few weeks to months" projection is a varied time period. We can take our time and do things as we travel there as long as he is up to it, but I don't want him to become so ill on our road trip there that I end up needing to take him to a hospital in some city along the way. I am thinking I may just say we are leaving the end of this week just to be sure that I get him there while he is doing relatively well and then take the rest a day at a time. I just don't know what to expect and what kind of window I might have for us to travel. I would be so grateful for any thoughts you all might have.

[Bethpage]

Pattycake, I admin a group of women married to prostate cancer patients. We have questions like this about mets and "how long" all the time. It's the way women's minds work. There's really no way to know, but IMO your idea about leaving sooner would be what I would do. I so empathize with not wanting to be on the road and needing to find a hospital. This is the way women caregivers think. I admire you no end. 💕

[Pattycakepgh in reply to Bethpage]

Thank you Bethpage, for the reply.... I guess I was not so much looking for anyone to give me a time line as I was trying to understand better what Mike would start to experience as he becomes more ill, as right now he appears fine. He is a little more fatigued and the last few days since receiving this news, he has not really been very hungry. I was trying to learn what kind of symptoms may appear as his health declines - I understand to look for jaundice and pain in his stomach, but this is all the Dr. mentioned. Thank you for the support, I really appreciate it.

[Bethpage in reply to Pattycakepgh]

Pattycake, the women in my group are close-knit. The ones whose husband is palliative or hospice due to organ involvement post pretty much every day. From what I've noticed in 6 years of adminning the group is that live involvement typically means fairly precipitous decline to multiple pain meds. Precipitous as in a month. That is not always the case, though. I think that no two individuals follow exactly the same path. A member lost her husband last night just after 10:00 p.m. my time (EST). I looked back this a.m. to see if she posted about liver involvement. She did post - in mid May.

[Pattycakepgh in reply to Bethpage]

Thank you. Knowing that he will require pain management is very helpful. The doctor did mention that he would experience stomach pain. I did not know if he would not want to eat, or experience nausea or vomiting. I was hoping to be more prepared to help him.

[Blue-Mockingbird]

I found this online, maybe it’ll help.

IMO, I’d start making travel arrangements. Look for that short term rental near the kids/grandkids, make contact with hospice in the town you’ll be staying in; you don’t want him in an unfamiliar town without pain management. Like you said, make a list of possible stops along the way, restaurants to try, etc. Tell the kids you’re on the way and when it’s convenient for them they can visit. I hope you have a smooth uneventful trip and make some lasting memories.

mayoclinic.org/diseases-con...

[Pattycakepgh in reply to Blue-Mockingbird]

Thank you very much for the reply and suggestions. I have started to make plans for us to travel. We meet with Hospice tomorrow here at home and I will ask their advice for locating Hospice assistance Ohio. Right now he is fine. I just want to be prepared and be able to help him be comfortable once we leave our home.

[Cateydid in reply to Pattycakepgh]

where in Ohio are you headed? I’m in Findlay, and would love to meet you for coffee and conversation if you’ll be near anywhere between Toledo and Columbus.

[Pattycakepgh in reply to Cateydid]

Thank you Cateydid, that is so kind of you to offer to meet. We were due to leave on Friday to drive to the Dayton area, but during this week Mike's health has declined and so we've had to cancel our trip. His children are going to fly here later today. Thank you again though for the offer, I greatly appreciate your kindness.

[Cateydid in reply to Pattycakepgh]

I’m so sorry that you’re at this place now. Although I know we will all end up here, it saddens me to know you and your beloved have arrived.

I’m praying for YOUR peace and comfort as you usher you partner along his way.

[K-xo]

Unfortunately, there is no way to predict an exact time of any outcome with this awful disease. Whatever you decide to do, please make sure you have support. Sending love and prayers your way. Xo

[Pattycakepgh in reply to K-xo]

Thank you for the reply. I was not trying to predict an outcome. I was trying to understand what type of things Mike would experience as his conditioned worsened so I would know what to expect.