Hospice Journey 12/10 t 12/17/21 - Advanced Prostate...

Advanced Prostate Cancer

21,056 members26,262 posts

Hospice Journey 12/10 t 12/17/21

JimBarringer profile image
45 Replies

Hello my bothers and sisters. I wish I could say that this week has been better than last, but that would not be true. There have been some areas of encouragement but not many. As I have been writing these posts I have recognized that I haven't shared this level of detail with my family. I certainly would have if I was asked how I was doing but I guessed I wasn't really asked. Your responses and questions have allowed me to recognize my family wants to know what's going on as well. So, my sisters my mom and step mom, and my four adult children have signed up and are having a better understanding of how I am handling this journey as well. That may be the extent of the good stuff. My pain level has increased significantly.

Way back during the chemo and Keytruda cycles I had a port for infusion. The port had not been accessed in probably a year so we weren't sure it would still flush. Fortunately it did and the hospice folks were able to get me a medicine pump. At this point I have the self controlled pump able to administer my own shot once every 10 minutes. The medicine in the pump is hydromorphone. The dosage is not as large as the pills, but being able to go directly to the blood stream is far cry better than having to be absorbed through the body. It allows the medicine to join the cancer fight right away. Early in the week the pain level was very high. So much so that after simply going to the bathroom I was nauseous almost immediately but taking medicine for that right away resolved that issue quickly. Early this week the pain radiating around my pelvis was almost unbearable and the fatigue factor was really tough. Because of the fatigue and pain, I have found myself sleeping a lot more than I had during the journey. In addition, my pain medicine has been increased to 60mg methadone per day, lorizem as needed and dexamethasone 20 mg two times per day. This is in addition to the as needed pump button every 10 minutes, I also seem to feel my back compressing when I am standing I don't know if that is actually happening but that's what it feels like.

I realized that I was starting to experience things I like for the "last time." This feeling was similar to when I sold my beautiful GoldWing motorcycle At that time I knew there were not going to be any more long distance rides. Man that hurt. I still felt I might have a Victoria Island Canadian ride in me or one more time to the Grand Canyon, but no good. Realizations this week were not as epic but they hit me nonetheless. There would be no more chance of a leisurely walk around our very short block. The pain would keep me from taking a long car ride. In fact, it appears that I will spend the rest of my life reclined in bed watching Netflix, Amazon Prime, etc.

Through all of this I remain steadfastly connected to my Lord and Savior. Jesus has everything under control and I know without a shadow of a doubt that I will be in His loving arms but I am told in the Bible that to be absent from the body (dead) is to be present with the Lord. I hold on to that truth and that promise. Good bless every one. Your questions and observations sustain me. Please don't be shy.

Jim

Written by
JimBarringer profile image
JimBarringer
To view profiles and participate in discussions please or .
Read more about...
45 Replies
noirhole profile image
noirhole

Thank you for you honesty. I fear we all may be in the same position someday. Freedom from constant pain is a godsend. I wish you and your family the best.

Tall_Allen profile image
Tall_Allen

I think it is wonderful that you are expressing yourself for the benefit of your family and your online family.

DesertDaisy profile image
DesertDaisy

God bless you and your family Jim. I'm so thankful for your updates. Much love and prayers from Arizona.

2dee profile image
2dee

Hi Jim,Pain. No one understands our pain like we do. To me the pain increase beyond tolerable is my biggest fear. In 2018 I got a six month taste and have no wish to revisit. Are you able with all the drugs to reach tolerable?

What, if anything are you able to do to accelerate the end process?

Hoping for the best for you. Your short time friend, Dennis

2Dee

JimBarringer profile image
JimBarringer in reply to 2dee

Hey 2dee. I’m not intending to extending the end time right now because so many of us seem to have questions I think need to be answered, I think I need to experience as many things as I can this. God bless you my friend and here’s to hoping we get some good mileage out of this poisoned body in the short months again.

ARIES29 profile image
ARIES29

Hello Jim, Reading your post made me realize things I may be also missing in the usual activities, like riding that bike, have I done that for the last time? Will I fall off it & brake a bone for instance?Then there is the unbearable pain that I have not experienced yet, but I will I know.

We will all be there someday also & God willing when it is time we will be in his grace.

Haniff profile image
Haniff

Hi Jim,

Thanks for your update. We are all rooting for you. Good to keep your family and close friends in the loop.

Take good care and remember keep kicking the tin as far down the road as you can ❤️

Hugs and love

Haniff

Danielgreer profile image
Danielgreer

Hi Jim, thanks for the post. I know I’ll be in your position in 1 to 2 years so even though it’s difficult you help me get a better understanding of what I’m facing and that is invaluable to me. Like you and your super cool bike, one the hardest parts of this for me is not being able to surf again. I think I may have a few rounds of diminished golf in me, but I know that will be gone soon too. Please keep posting as long as you can.

treedown profile image
treedown

Victoria Island (assuming you mean Vancouver Island city of Victoria) is beautiful. Have you been to Tofino? I haven't made it yet but hope to someday.I hope it is a long time before I am where your at, but having an idea of what it might be like is oddly comforting. Thanks for taking the time.

spw1 profile image
spw1

Hi Jim, I am glad to hear that the port works and that you can get pain medication directly in the bloodstream. Hope that it will continue to give some relief. Keep up the faith. Sending prayers and love to you. I am sure that your family appreciates your being there and is very proud of you for the way you are bearing up with the challenges of this illness.

Sipj profile image
Sipj

You are amazing…you have no idea what you are giving us who will be having to go through this in the near future. My husband will be in your shoes at an unknown but most likely soon time. I am very grateful for your words. Bless you. Peace to you. Comfort to you and your family 🙏

Costarica1961 profile image
Costarica1961

Youre just a little further down the P.C journey road, and it is a double edge sword to hear your experience, on one hand i want to know, and on other not so much, although i read your posts when i see them. I work on staying in the present, carpe diem and all that, although that kinda thinking doesnt allow you to go to the end times. Ironically my new oncologist shared how things progress in the end times and it was sobering. I am sorry for your physical pain and leaving such a wonderful family, although grateful for your faith.

Sisira profile image
Sisira

Hi Jim, Every word you write matters. Becomes so important and heart rendering for us because your efforts at a time like this to communicate with your fellow men in the good hope that your sharing of experience till the end of your battle could yield some benefit to others, are so out of the ordinary! You and your family are in our prayers.God bless you and take away all your pains !

Faith1111 profile image
Faith1111

Jim, I read your post with tears in my eyes. Sharing your journey helps prepare us for our own path someday. Knowing what to expect takes some of the fear away. I am happy you have strong faith. May you continue to manage your pain so you can be comfortable. Thank you again for sharing. God bless you

Curehunter profile image
Curehunter

May God take away your pain and ease your final journey.

Tiger22Warrior profile image
Tiger22Warrior

God bless you and your family!! In my Prayers!!

Madbeach profile image
Madbeach

Dear Jim…you have memories and faith. Hold on to both. God Bless you.

Concerned-wife profile image
Concerned-wife

I am very sad that you have to suffer but so appreciative that you are sharing to help others.

jbskiatook profile image
jbskiatook

Your postings are very important to many of us and I'm I am so sorry that you have to go through this pain before you go see the Lord But perhaps the reason for it is the fact that you are educating many people who may have the same journey as to what the journey may entail. God bless you and I will see you face to face later.

Vindog29 profile image
Vindog29

Jim, you are such an extraordinary person, one of so many on this forum I have been blessed to meet. You are giving each one of us a light,your spirit to carry with us, no greater gift that so often is forgotten nowadays. I think of you watching over those you physically leave behind one day and you will live eternal. You have given me a gift with your posts, I will not forget you.

Hey Jim! , I am sorry to hear but I realize what your saying. And Yes keep your mind focused on Our Lord and Savior because thats where our second chapter begins. Reading this I had flash backs when I took care of my cousin when he had Advanced stage 4 cancer and I realize what your going thru as I watched him go thru the same things, toward the end. This time will come for all of us, however our Love reaches out to you and we will keep you in our prayers that your pain will be alleviated for you. Take Care Jim and share good memories with your family and close friends and let us know here what we can do for you! Keep us informed, Love you Jim!

Muffin2019 profile image
Muffin2019

Your faith is just incredible but I agree that your faith in God is very important to carry you through this disease, we all could be facing hospice some day and your posts are very enlightening . Goc bless you and your family and give you the strength you need.

Pianodude profile image
Pianodude

Peace to you Jim. I hope the pain meds do their job and gives you some relief.

keepinon profile image
keepinon

Life is a bitch right now, but greater things await you. I admire your courage in what you are facing. Please keep on posting as long as you can. May God bless you and your family.

Blueslover profile image
Blueslover

God Bless you Jim. In my prayers!

Carlosbach profile image
Carlosbach

You are a blessing sir to those of us on this forum, and it sounds like you've been a blessing to others throughout your life. I have a friend who talks about wrapping others up in a soft, warm comforter of prayer. I'm doing that for you right now. God grant you peace and less pain during the remainder of your earthly journey.

Rsdutcher7 profile image
Rsdutcher7

Your willingness to be vulnerable and share is admirable. We all know what it’s like to live with the disease. We all know there will be peace after we die. But the time between is the scariest part. Pain is miserable. Each and every day I hope you find ONE thing to be grateful for.

Lowbed profile image
Lowbed

Jim, I hope you are able to get some relief from the pain and thank you for sharing your experience. You are helping us and appreciate your courage.

j-o-h-n profile image
j-o-h-n

So James, if only I could put my thoughts into words. Last time I called you "a jerk" since you referred to yourself as one. You are indeed a "hero" like many who are here. You are fortunate to have a wonderful home family as well as a family here in H.U. I wish I had a magic wand to stop your suffering the pain brought on by this ugly disease. I fight my Pca with humor but right now nothing seems funny to me. Christ suffered on the cross for all mankind and showed us the way to the kingdom of heaven. May we all meet in that kingdom and be with our maker. May your pain quickly fade away.

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 12/11/2021 1:57 PM EST

JimBarringer profile image
JimBarringer in reply to j-o-h-n

Thanks so much j-o-h-n. I was aware and very appreciative of your humor long before I started posting. I think humor is absolutely essential for us to get through this disease. I am also so happy to hear of your commitment to our Lord and Savior. I believe He, too, has a great sense of humor. After all, as I sit here and respond to you my cremation urn has just arrived. From Fed Ex. “Timing” in humor is everything. I’ll have to talk about making final arrangements next Friday, God willing. So John (hope we’re on first name basis now and I can type John) keep up the fight. Just as God has a specific job for me, He has one for you as well. In your prayer time, don’t forget that all important aspect of listening. Don’t make it a habit of asking, asking, asking. Take time to listen, and then do what God is telling you to do. God bless you and your family and thank you for reaching out.

Miket218 profile image
Miket218

Thank you for posting. I’m glad to know you will be walking the streets of gold when I arrive. ✝️

JimBarringer profile image
JimBarringer in reply to Miket218

Walking them with a new body..no more sorrow, no more pain. Can’t wait to experience the promises He has made. And I won’t even worry about being a street sweeper on those streets of gold.

Shooter1 profile image
Shooter1 in reply to JimBarringer

No more sorrow, no more pain. I've been telling my kids that for years, even before aPca. My poor old body has taken it's bumps and breaks over the years, now aPca is going to give me a whole new set of aches and pains.. So be it. Time here will be over soon and eternity will take over. God bless.

JimBarringer profile image
JimBarringer in reply to Shooter1

I guess in reality eternity has already been here. The important question has always been where will I spend eternity.

tsim profile image
tsim

Thank you for sharing your story

Nous profile image
Nous

thank-you for sharing this Jim ... your unselfishness and caring to help us by giving us insight into the road ahead is amazing ... i also admire your positive and confident attitude ... thank-you ... i will offer Sunday Mass for your intentions ... hugs and best wishes ... Nous :)

MateoBeach profile image
MateoBeach

Thank you for sharing your very poignant thoughts of things done “for the last time.” Also are most precious experiences we have had. How to honor them, be utterly grateful for them, celebrate them and then we must let them go. Will be thinking about that. Even as I am planning my next Vancouver Island and BC ride/tour for June on my new R1250 GS Adventure. Your remembrance will be with me.

julyturqsee profile image
julyturqsee

May gentle waves wash over your pain. i hope you can experience nature (from a window at least): to be one with the sky, trees, sun, changing light & receive some relief from that, your family, friends, the well-wishers of HU.we are so grateful to you Jim for sharing your feelings/experiences ... which we'll all encounter up the road.

Hope59 profile image
Hope59

Jim, I have read many of your posts and I have been rooting for you throughout. Such a beautiful post. I lost my warrior in April and I’ve been grieving for him ever since. One thing that gives me comfort is knowing he is at peace and free of pain. I’m thinking of you and your family. God bless you.

Runner4000 profile image
Runner4000

Jim, thanks so much for sharing your thoughts and feelings with us. It helps all of us! It lets us know that another real person shares our experience and situation and also hopes there is a good future for all of us. I give you a long "abrazo" hug and know you are making an important contribution.

Metaldraft profile image
Metaldraft

Jim i always said the roads that times has bestower upon us is something or sometimes not are request. I’ve want you to know that I embrace your strength,wisdom and spirit you share.I too will follow the path that lord has given me and will look up to guys like you Bless your journey

Yadifan profile image
Yadifan

Thank you for taking the time and energy to write this post. You're in my prayers for pain management and the ability to enjoy just a few more things. Prayers for strength for you and your family. God bless you Jim and comfort you. Your HU family appreciates your posts and your invaluable information. Hi Jim's family. You all are in our prayers for strength. Please know you can reach out to us.

jimslilsis profile image
jimslilsis

Brother Jim, funny thing about families - at least for me being your sister - I was never quite sure when and what to ask. Being distance by miles but ever joined by our hearts, your communication over this many-years cancer journey has been typically upbeat with your wonderful sense of humor always thrown in. You have focused on the life and days given you by our God. I think of Jesus' words in John 10:10 - I have come that they may have life, and that they may have it more abundantly. I remember you saying to me when you went off treatment earlier this year (that is if I remember right) that you simply decided to LIVE! And now as your journey becomes more pain-filled and the reality of eternity becomes more of a gift from our Loving Savior Jesus Christ, I am thankful that you have chosen to invite me and our family onto this written journey with you. I pray for you, Geri, your sons and their families, and our family daily. I pray each day will find joy spent with one another in whatever means possible. (I love our family group text.) My favorite going-to-heaven scripture is 2 Corinthians 5:4 - For we who are in this tent groan, being burdened, not because we want to be unclothed, but further clothed, that mortality may be swallowed up by life. For the life we have here is but our mortality with beginning and end, while our TRUE LIFE is eternal and found in Jesus Christ. I love you brother! Your lil sis, Sheri

Hailwood profile image
Hailwood

You are a brave man my friend and thank you for sharing all of this. I’m riding around right now at 0C and every day possible I will continue to ride as the changes that I have started to feel in my own body will eventually mean no more miles. I will be seeing my daughter next summer, illness depending and will do a ride around the Island thinking about you. I hope that you can manage the pain effectively and at least Amazon has some good motorcycle documentaries (“Why we ride” being my favourite). As long as you can keep sharing as you provide advice and direction for all of us who are bound to follow. Take care

JimBarringer profile image
JimBarringer in reply to Hailwood

Hailwood, getting on the GoldWing and taking a leisurely couple hundred mile ride is so desirable, although surrounded by snow right now would probably stop me. I never did like snow or red cinder marbles on the side of the road. Motorcycle rides are often on my mind. Keep those rides going but be safe. We don’t heal as fast. Take care. I’ll try to continue writing but I’m not sure much will change except more pain, more weakness, and then just gone. Keep the rubber side down and breath in God’s blessings which He sends to you every day.

You may also like...

Hospice Notes 12/27/21

some of my more instense \\"guts\\" issues got somewhat better as we worked to \\"dial-in\\" a...

Hospice journey - continued

my best to give an update every week or so. We’ll see how long we can ride this horse. Several...

Vancouver BC, Coffee meet & greet, Sunday Mar 17, 10:00 - 12:00

decided to post this open invitation to anybody who would like to join us. Time: Sunday, Mar 17,...

Entered Hospice at age 45. 21 months after diagnosis.

without an appetite. He is inpatient hospice and pain seems well controlled. I wanted to thank...

My PSCA CAR-T Journey

is an area of research that needs to be explored more.