September 24, 2008 at 11:29 pm #22859sophieMember
Joyce, you and Butch are in my prayers and thoughts. I pray that God will bless you both with peace and comfort in your hearts, and Butch’s time will be so peaceful, and he’ll look at you and smile until you two are reunited.
SophieSeptember 24, 2008 at 12:48 am #22858
Thanks Belle, I really appreciate the response. I know how difficult these last months have been for you, and I am grateful for the information.
Joyce cSeptember 23, 2008 at 3:47 pm #22857belleParticipant
Having just come from the closing of this period of time with my sister, I’ll share a bit of what we did. Our initial consult with the palliative care team was in the beginning of July. That was when it was apparent that there wasn’t more to be done to stop the cancer. Though it seems so scary to be in touch with hospice care people, they are truly helpful (if you get the good ones on board. And if you don’t…CHUCK THEM and find the next one that is good.) My sister lived for two months from that time. For the first two to three weeks, she was semi-functional. When she was up to it, she came out of bed and even went out for short periods of time. As the cancer spread she was more and more and eventually completely bed ridden. The palliative nurses and drs. involvement intensified as she weakened.
At this time, you and your husband need to talk and make palliative care decisions. For instance, if he gets another infection, will you treat with antibiotics? If he can’t eat and drink, will you hydrate and/or give tpn or something similar? There are different ways to go and YOU not the dr or nurse should make that difficult decision.
You will still have important cherishing moments with Butch–as well as hard and excruciating ones as well. I am thinking of you and if you have more questions, you can e-mail me privately and I can try to help. Best of luck and strength to you, BelleSeptember 23, 2008 at 2:07 pm #22856lainyParticipant
Joyce, you write as much as you want. As many times as we may have heard these stories each one is new and all are important. You have been through so much that somehow I think you will logically make the right decisions. I think my reaction would be that Hospice should come in when you get to the point that you feel you are unable to make Butch physically comfortable. That is so wonderful that he could attend his granddaughter’s birthday party. Keep us posted and stay strong and know that you are in our thoughts!September 23, 2008 at 1:03 pm #22855
Thank you all so much for your kind messages. Things are REALLY starting to get crazy now! The Hospice nurse came yesterday morning. Now – Dr. Gamblin (from UPMC) told us to come home and find a good palliative care Doctor. He said the cancer spread – mets all over, and 3 small tumors where the original remaining 25 % of the liver is (Top Left). Otherwise – liver regenerated well, reading good, etc. He said he does not need hospice yet -just a palliative coordinator. We came home and went to our PCP. He said he IS the palliative care Doctor for that practice (Thank God – we love him). He took me aside, after reading the radiologist’s report from the CT scan from Pittsburgh, and siad he thinks Butch has only 4 or 5 weeks left to live. I should tell you that Butch contacted another infection – and is being treated with a course of antibiotics for it – another week in the hospital in Pittsburgh, and pills for home. He was horribly sick. Well , the Doctor said he would come to our home from now on to see him, and called hospice for us. Well, he has improved – a bit – and – when the hospice nurse came yesterday, she indicated that she does not think he is as far advanced as the Doctor seems to think, and thinks maybe he should stay on home health for another week or two – so we can monitor the ca 19-9 (it actually dropped a bit this week. So – we are totally confused now, and trying to make a decision. The real problem is that he cannot eat more than a few bites at a time. I have tried everything – small protions, more frequently, tempting foods, he doesn’t get enough calories. He dies drink ensure, and I have started giving him benecalorie also. He is down to 138 – from 180. He is not in much pain (couple of pain pills each day – sometimes 3), we are controlling the nausea as best we can – got some medication yesterday to get rid if the gerd (or whatever it is), and I try to get him out of the recliner (we went to our granddaughter’s birthday party Sunday). Since we got home from Pittsburgh last Tuesday, the confusion has cleared up and he is doing pretty well, mentally – I am not so sure about me!
I wrote this long, long message to describe where we are at – I guess you all have heard this story many times before, but – any light you can shed that will help me steer the ship away from the iceburg would be so welcome. I forgot to say that he is on lasix , as he can’t stand up w/o losing his breath (the Doctor’s in Pittsburg said he had Ascites, that is one of the reasons they kept him a week). We are going to get him on oxygen this week, I believe – that would help him, I believe.
Thank God for this forum. I love each and every one of you.
Joyce C.September 23, 2008 at 12:27 pm #22854karenParticipant
I pray for Butch that the Lord lets him pass gently when it is time and I pray for you to have the stength that is required to help Butch make this final life’s journey.
KarenSeptember 23, 2008 at 3:45 am #22853jmoneypennyMember
So sorry to hear about Butch, but I’m glad that he’s going to get some help – and it will help you, too, if it’s a good hospice team. It’s a terrible time for you right now, and I hope you have some shoulders to lean on.
All my good wishes going out to you and Butch. Please know that you always have a sympathetic ear.
Joyce MSeptember 22, 2008 at 11:17 pm #22852marionsModerator
My heart goes out to you and Butch at this very special time. Although, it may take time, acceptance can bring feelings of peace allowing you to live each day more fully.
Tons of hugs to you and Butch.
MarionSeptember 22, 2008 at 10:52 pm #22851darlaParticipant
I have to agree with Pauline as my experience was similar. You are both in my thoughts & prayers.
DarlaSeptember 22, 2008 at 9:25 pm #22850paulineMember
All I can say apart from how sorry I am is that this coming period is one that you are going to remember always. When Anthony was in his final stages the hospice staff didn’t realise it and kept giving me false hope and so I didn’t do things in exactly the way I would have if I had known that those were his (and our) last precious few weeks. I regret this very much and would hope that for you both it can be a peaceful time without pain where you will treasure some loving memories to keep forever.
Thinking of you and your Butch,
PaulineSeptember 22, 2008 at 6:09 pm #22849devoncatParticipant
I know it was a difficult decision but hospice is only there to help you and your loved ones. I hope he remains comfortable so the two of you can spend this time together as a loving couple and make so many precious memories.
KrisSeptember 22, 2008 at 4:09 pm #22848carol58Participant
I am so sad for you Joyce. Bless you and Butch.
CarolSeptember 22, 2008 at 2:25 pm #22847jeffgMember
Joyce— I echo Lainey’s sentiments exactly. Please tell Butch I give him a double thumbs up for his couragous fight ! He’s a man of all men without a doubt.
Jeff G.September 22, 2008 at 12:52 pm #22846lainyParticipant
Joyce, we are so, very, very sorry about Butch! You both fought this war and did everything you could and now, in a strange way, its not up to you anymore and we hope that the rest of this journey is peaceful! Our thoughts and prayers are with you!September 22, 2008 at 12:27 pm #1560
Hospice is coming his morning to set up. I am very, very sad, but at peace with the decision, and glad for the relief they will be able to give him. he is SO weak, and unable to eat properly, but he is not in much pain, Thank the Lord. The pain meds help him when the pain starts, and mentally he is less confused then he was when we were in Pittsburgh – actually, I am confused a bit of the time myself lately! It all seems sort of unreal. He fought so hard, and the operation has taken too much out of him. He says he couldn’t have made a different decision, with the options that we had, and, barring our miracle happening, has accepted what is happening. One of the things that is giving me peace is that I sent the letter to Lainy, and am waiting anxiously for them to be submitted to Oprah – I am so hopeful that something will come out of all this – more public awaremess, research, etc. This cancer is an unbelievable monster, and we must help to stamp it out.
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