Hospice again: Well it has been a few... - Advanced Prostate...

Advanced Prostate Cancer

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Hospice again

JimBarringer profile image

Well it has been a few days since my last post about my particular hospice journey. I will try to update every Friday if possible. I have to say that the last five days have been rather difficult. My pain has increased significantly. I'm currently on a 75 mcg/h fentanyl patch, 15mg methadone three times a day and 4mg Hydromorphone tablet one to three tablets every hour as needed, (one day I had 27 of those tablets but it really didn't help that much). Self diagnosing, I believe some of my pain is attributed to constipation brought on by so many narcotics. For that I'm taking two synocats (sp) in the morning as well as two in the evening. In the evening I'm also taking metamuzal and milk of magnesium. I think the ole enema is on the schedule for today.....sigh. I'm still doing my best to remain as positive as possible. Trying very hard to remember to say please and thank you to my wife, friends, family as well. My wife continues to be fantastic taking care of everything. We have a strong church family who have offered to help out with anything. Some of them also visit and they have been mindful of short visits rather than long extended stays. I appreciate that. I have also learned to be a little bold when necessary saying things such as "well, I think it's time for me to take a nap." Geri (my wife) has done a great job of backing that up if we have to. Fortunately it doesn't happen often. I know all of us have that little question in the back of our minds about how long we are going to be sticking around. Right now I think I might make it through Christmas, so I need to get going on the Christmas shopping. I thought I might get out of it this year. I am so happy for on-line shopping because even though I'm optimistic about sticking around til Christmas, I am not optimistic about getting out of the house ever again for shopping trips. Sitting in a chair, standing, or walking long distances are really out of the question now. Out of the question because of pain involved in those activities as well as weakness in the legs cause imbalance and lots of trouble just trying to step up one step. So, mixed bag this week. I hope to provide a more uplifting post next week. God bless each and everyone of you.

51 Replies

Bless you, Jim, for your continued updates in spite of your excruciating pain. Reading what you are enduring with such grace & fortitude makes me see my husband's deteriorating condition in a much different light. Despite his various struggles, he is not in any significant pain at this point. You thus give me a great gift by underscoring that reality for us. You are in my thoughts & prayers. Thoughts of caring & gratitude are going your way.

Lulu700 profile image
Lulu700 in reply to Lyubov

I agree Lyubov, Jim hits home for me also . So much pain . If one is not in that type of pain ,we must be thankful . We are all on the same ship . On different floors . 🙏❤️🕊

seabeejim profile image
seabeejim in reply to Lyubov

I love you all,knowing i am rite behind you.

Thanks for checking in. It's good hearing from you.

God bless Jim. It says a lot about your fortitude that you are doing your Christmas shopping. Praying that your pain can be eased and that there is a miracle right around the corner.

God bless you Jim, hang in there the best you can your wife will appreciate every day with you

That was a wonderful and enlightening post Jim. I hope that when my turn comes I can manifest the same courage, grace, thoughtfulness,and humanity as you have demonstrated here.

I think that all of us on this forum admire you and wish you the best.

Alan

"I need to get going on the Christmas shopping. I thought I might get out of it this year." That is the most hysterical gallows humor I have seen in a long time. Thank you for your observations and updates. I pray your pain lessens.

Good hearing your journey we all are on the same cruise ship, some in different Cabins.

👏👏

Brother, Brother this is a very tough part of the journey. Just as each man presents differently, it seems each man has a different journey in our final months here on earth. Concerning that the pain is still intense after the barrage of pain pills you have listed. Remember the good times, and the Wonder Years of your youth, and raising your children.

Dear Lord in Heaven I hope they can get your pain management under control. You deserve to exit gracefully.

Thank you for sharing this time with us,

Mike

St Pete

❤️🙏

Dear Sir, You are so strong to be writing us now . No getting out of gift giving this Christmas to you ! 😂 On line is the way for most of us .. The darned high end stores are getting bum rushed by thief’s . The world is insane . Yet you are lucid and amazingly coherent . I dont handle pain well . Especially opiates …. All I know Jim , is that JC is our ultimate mercy . You’re on board with the love of Jesus Christ …. May God Bless you in his mercy ,Mr . Barrnger ! 🙏🕊🕊

Just sent a prayer for you, God bless you and your family.

Is there any reason why you aren't using cannabis for the pain?

JimBarringer profile image
JimBarringer in reply to cesces

Thanks for the thought. I probably won’t do it for personal reasons but it is worthy of consideration.

cesces profile image
cesces in reply to JimBarringer

It's just that those opioids have a reputation for running out of gas after a few weeks because you adapt to them.

And cannabis doesn't have all the side effects.

God Bless you and your family!!!

I admire your attitude and hope that pain can be managed better for you. Sending you best wishes and prayers.

Jim thank you for the info. You have amazing strength! God bless you

God Bless you Jim. I have nothing to give you but my heart felt prayers for an end to the pain. I give that freely and often.

Jim, your posts at a time like this show how concerned you are about us and the people around you. I respect you as a man of singular courage and thoughtfulness. May the Lord take all the pains out of you and bless you with peace and inner happiness ! 🙏

God bless 🙏🏻

Thank you. Your courage and your faith touch us all.

Thank you Jim for sharing, I appreciate your uplifting courage and thinking of your wife and family. I think its as hard if not harder for them to go thru this with us, so keeping them comforted is admirable. I recently became a member of this online chat group to see what others in our condition experience. I too have advanced stage4 prostate cancer with bone mets, I am finally calling Hospice next week to get prepared for my Hospice Journey, I think its time. The Xgeva I had been on for 19 months gave me ONJ on top of my cancer. Needless to say they stopped giving me the Xgeva, which I am noticing more pain in my bones now and teeth are hurting and gums are swollen and dissolving. Your darned if you do and darned if you dont. Anyrate Jim keep your head up and your spirit high, I think those who know our Lord are better prepared to handle what we are going though. I am praying for you my brother, thanks again. Give your wife a hug each day, thats important.

Thank you fo sharing our experiences, I am so sorry for your pain and suffering. Take care.

Thanks for checking in and your very brave updates. It’s likely that this comes to all of us eventually. My thoughts are with you on this journey.

Jim, I am so grateful to you for taking the time to share your experience with us. I have never wanted to die at home and put that whole thing on my wife, so I am very interested to know what it is like in a hospice, and how they deal with you. I admire the way you are coping with this and wish you comfort, peace and a pain free experience as you progress. Please know that we are all thinking of you.

Dastardly, thank you for your reply. Hospice for me is actually in home. The nurses and aids come here as needed and contact my wife almost every day. As I deteriorate the in home care should increase. I think it is better this way because my wife doesn’t need to get “fixed up” to come and visit. She also doesn’t need to make that awkward decision of when she should leave to go home. My step dad did in patient hospice in a facility and my mother in law did in home hospice. Based on those two experiences we decided on in home. I certainly understand your perspective. It is a difficult decision and I just want to encourage you that I don’t believe you can make a “wrong” decision. Here’s to hoping you don’t have to make that decision for a very long time.

Thanks for your reply Jim.I think some animals have the right idea. When they sense they are dying, they go off by themselves and find a nice quiet hideaway. Maybe it's just me, but that sort of end appeals to me. Of course, when the time comes, I may change my mind. I know you are right though - there is no right or wrong way, you must do whatever works for you.

Take care, and may all your choices be the right ones.

2 thoughts to share with you one - from personal experience - Cannabis is a wonderful medication which - unfortunately - has too much negative social baggage. My Drs are very please that I successfully use it for pain instead of stronger stuff and the quality of the professional medical stuff is very, very high - pun intended.

two - " Christmas Shopping " what about instead of a " thing that you buy " writing a letter to anyone you would buy for. Put a ribbon on it ... I know that if I was on the receiving end, that's what I would want from you.

This is a time of the year of change and hopefully it will be peaceful. The Winter light is wonderful.

Best to you

P

Darryl profile image
DarrylPartner

We are thinking of you

I love that you have kept a sense of humor. I hope you can keep that until the end. Prayers for you.

A blessing in disguise.... NOT having to go Christmas shopping... On line shopping is the way. Well James you should know that we all acknowledge you as one of our heroes...Pain is God's way of telling you it hurts. So tell God you already know that feeling and to please stop it asap. I am one of the few who is anti recreational drugs.... but if and when the time comes that I may need some, then lookout "here I come". I am glad you're at home hospice which gives you the opportunity to spend time with your wife and your friends. Keep posting and I wish you a Happy and a painless Christmas....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 11/27/2021 12:51 PM EST

Hi Jim …. So much thanks and praise for your courage sharing this with us has already been said above …I can’t amplify on that … I can just say I feel the same way about your doing this for us. Thank you so much. The 27 hydromorphone tablets you took in one day are nearly as many ( 30 ) as I get in one month. Like you I notice those have a very short period of effectiveness … for me about 2 hours max. I also eat a lot of opiates and wrestle with OIC ( opioid induced constipation ) and juggling laxatives and opiates is quite a circus trip. You know what I mean . Could you please look at the name of synocats ( sp ) laxative again and is that the correct spelling ? I’d like to check that out myself if it’s OTC or ask my GP if not. I take a bunch of senna pills with every dose of opiates I take right now …. I can tell that if you forget to take your opioids on time and they wear off before the stool softener is finished , I have to be prepared to ask for forgiveness at the porcelain throne and make sure the larders are stacked with the “ large “ bulk pak paper rolls.

Personally , I think it’s a really good thing you have so many helping hands that they become over the top. Its lucky to be loved so much by so many. … more really is better buddy … be thankful for that.

This look into home hospice is amazing .

Best wishes Jim ….❤️❤️❤️

JimBarringer profile image
JimBarringer in reply to Kaliber

Kaliber, it is over the counter. Synocat I believe is the correct spelling. My providers upped the opioids today so they asked me to up the synocat too. Now three pills morning and three pills evening-obviously for me. Check it out for your self so you don’t take too much. That could be a disaster.

Kaliber profile image
Kaliber in reply to JimBarringer

Thanks big guy , I appreciate the help very much …especially considering everything . You some kinda hearted guy .

❤️❤️❤️

Jim, have you tried music ( even Christmas music) with your pain meds? When napping I find the pain pathways are over ruled if I like or know the tunes!

Forget about earworms because even repeated melodies beat ( no pun intended) feeling pain.

When awake it’s there but a wonder as to how it gets obtunded will astound you.

Our cancer care centre has a music therapist who plays classical guitar bedside.

Very relaxing during treatments too!

DrRobin (retired dentist)

JimBarringer profile image
JimBarringer in reply to DrRobin

Thanks for the suggestion. Christian contemporary music coming up next nap time.

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

(Retired dental patient)........

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 11/28/2021 7:07 PM EST

God bless you Jim for your amazing attitude and inspiration ... praying that God will make your situation as comfortable as possible ... best wishes ... Nous :)

Jim. Please try the mini Fleet enema for the constipation. Easy to use and it did the trick for my husband. God bless. SM

Worked for us today too. Thanks

Magnesium Citrate down the hatch has been an Old World colonoscopy's flusher-outer for decades BUTT instead of drinking the solution I have applied it topically with less violent yet similar effects only taking longer to do so. I put it in an a small spray bottle and spray a few pumps on my wrists (front & back), inside of elbows, back of knees then lightly rub it in and also spray on hands and rub it onto my earlobes.

Not a Dr. with accredited learning but did stay at a Holiday Inn Express and tried it decades ago on my own thinking if transdermal patches worked and chemicals making skin contact can cause cancer maybe Mag-Cit via skin contact will be absorbed and flush out rather than using a Fleet/similar or oral products.

IMO it is easy - peasy. Good LUCK and always keep in mind YMMV 👍👍

I like how your mind works. Never would have thought of that maybe in the future all these meds and narcotics we ingest will be taken topically too. Have to get more of those researchers to stay at a Holiday Inn Express.😀 I’m ignorant concerning on line acronyms. Would you tell me what YMMV means? Seriously, thanks for the tip

Your Mileage May Vary

By bypassing the entire route of mouth to intestines, there is nothing to upset the enzyme balance of one's mouth to the digestive system, so it is much easier on the body.

My thoughts and prayers are with you. I’m happy to hear you have loving people supporting you. That says much about you. 🙏

Hello Jim - My dear baby sister passed away from Pancreatic cancer last year. She was on a very similar pain cocktail. A very warm bath helped her with her breakthrough pain. Sending you hugs, love and peace. 🙏

I’m so sorry for your loss and now having to work so hard to help your husband through this beast. God bless you.

Brave man w/loving wife... thanks for your updates.. Twice in my life, I have been a complete invalid.. Not easy. Green chocolate chip cookies gave me relief once for 4 hrs. Demerol also was my choice. Loving wife of mine saw me through second time at home. All best wishes to you in your painful battle. I've gotten mine pounded back down for now and doing well. Not looking forward to the coming days when I must walk in your shoes.

Thank you so much for your thoughtful and helpful updates, Jim.

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