Quite an adventure this week and not necessarily in a good way. I can feel weakness setting in, so much that I am actually having to press the keys harder in order to type. Last Saturday I did a very poor job of pain management. Resulted in extreme discomfort throughout the day.. When discussing with my hospice nurse she implored me to to stay ahead of the pain. Don't try to tough it out. Comfort and pain relief are the keys to success in hospice. I have tried to take her advice but in spite of the attempts, I am still in extreme discomfort from the pain.
The largest cancer burden for me is my pelvic and up and down my spine. That is where my pain is attacking me. Sometimes it's a stabbing pain, sometimes it's a throbbing pain and sometimes it's a combination of both. It just shoots up and down making me cry out. Typically as I lay down in bed I am able to relax and be pain free, but every time I get up to go to the bathroom, the pain is there. I need to press that button, knowing it won't help but that it will allow me some relief when I return to bed. My routine is "Uh oh, poop time." push button, gather up medicine pump, stumble on into bathroom, arrange medicine pump so I don't sit on the pic line, take poop. Use grab bar and countertop to push myself up (hard to do now with the lack of strength.} Gather up medicine pump, stumble back to the bed (As an aside, 26 years ago when we moved into this house I should have selected the side closest to the bathroom) Get in to bed, push the medicine pump button lay down in bed waiting for the medicine to give the good stuff so I can relax and enjoy whatever show I may be watching on TV. I can't be positive but I think the hospice folks have been out twice to increase the dosages from the pump each time the button is pushed. There are also automatic doses approximately every hour. I certainly did not complain about that.
I'm still forgetting things. Randomly I'll just wonder when Hector was supposed to be here, and I don't know anyone named Hector, I don't think. Or, wasn't the contractor supposed to be here today to start the new landscaping? But we are not doing new landscaping, I don't think. I guess as long as Geri is here and controls the checkbook I should be ok (J-O-H-N and Kalibar, no grand ideas) On a positive note, I think I mentioned that we have a seven month old boxer and I was reminded that because of the cancer, I am unable to get outside to clean up the poop. Geri is doing all of that. Caregiving goes a lot further than just getting your meds right.
At this point I would encourage you all to get your final arrangements taken care of. One of the first people you see from hospice is a social worker. That person is supposed to help you think of the things that need to be done. For me it was a relatively simple process as I am retired Air Force. There is a military cemetery right here in town which I love. The only thing I needed to determine was a casket or a burial urn. The folks at the cemetery were really great. the cemetery is expanding so they shared with us the two areas we might want to consider. Probably not a huge decision, but if Geri or the family wanted, for some reason, to come visit, it was nice to know if there were benches or shade nearby. You also want to make sure you have all of your phone numbers available, try to find out how many certified copies of the death certificate, as opposed to simple copies you will need. My wife retired from the DMV and we would recomend that you sign off your rights to cars, motorcycles, trailers, etc before entering hospice. Remember, we are Oregon so some of these suggestions may vary in other states, Also, remember, our family has no internal strife with ex wives, multiple homes.......you get the picture. Bottom line, try to make this as smooth as possible.
Going back to wanting to make sure everything is ready. We finally decided on cremation. I thought we had that all figured out until we made that final visit to the cemetery. The locations were just so much better than burial right now. So, back to the funeral home to select a burial urn. Surprisingly there was not a large selection to choose from (Unless you like Oregon Duck football. Then you're in good shape.) We were a little concerned about that until our director admitted the lack of available urns and suggested we go on line. WHO KNEW? The director also told us that if we wanted to go with the casket he would rate the COSTCO casket as a little below a 1. The guy at the funeral home had the same rating. Well we ordered a very nice urn and waited for its arrival. Because I don't think I'm dying in the next couple of week, we simply ordered UPS or Fed Ex. Good thing I didn't die early, the urn was late. So, advice to you, order early, and pay the faster shipping. If it does get there late, I suppose you could have someone simply put the ashes in leaf/lawn bag and sneak out to the cemetery with the director once the urn arrives and pour the ashes in the urn. What a great story for future generations.
Well I guess that's it for today. You may have read that my sisters and my mom and stepmom are following these posts. Most of the time they behave but if you see some gallows humor from anyone who's user ID appears to imply family member, don't be surprised. Thank you for reading and as always, may God richly bless you greatly.
Written by
JimBarringer
To view profiles and participate in discussions please or .
Great to see you are keeping your sense of humor to the end. My neighbor, when her mother died recently, got a box of ashes, then found a super-sized teapot for her (her mother loved tea). In the Spring, there is a fireworks service that will incorporate her ashes. Her mother loved color, and would love going out with a bang.
Jim you really are an inspiration. I hope that you can keep that pain down and continue to enjoy the humour and love around you. Much love from across the pond.
Jim, please know that we are all with you and thinking about you and your family. I know it's not easy, after going through a similar situation with my Dad.
God bless you Jim. Thank you for letting us know how you're doing. I'm sure it's not an easy thing to do - both mechanically and emotionally. Hoping for pain free and lucid days for you.
Hey Brother. Have you been watching Last Man Standing? Hector Elizondo. Hector’s character,Ed often gives sage advice or wacky advice. Maybe with the drugs you are mimicking Hector. Okay all, just teasing my brother. Jim, your Determination to share your journey is very powerful. I know that all of the siblings, mom and Terry have been in prayer for your pain to subside. What is hard for us is to watch someone who we love dearly and treasure is living with indescribable pain 24/7. It is a test of our faith to know the Lord is in control of this situation. Your journey is so inspiring and a testimony to your faith in our Lord. I’m happy to hear you and Geri made your final arrangements. It truly will help Geri and the boys have peace knowing they are honoring your wishes. I love you brother 💕🙏💕
Thank you for sharing your insights! Sending prayers that the rest of your journey will be gentle and free of pain...and to your family as well, as they stand by you through this.
Jim you are a great guy. The humour and the courage in dealing with that kind of pain is amazing. I am sure your family is proud of you. I am praying that you find better pain relief and not need that urn any time soon. Much love to you.
Jim, you are an admirable person. Your integrity leaves me speechless. I wish you the best on this way, the least possible pain and a lot of peace. You are wonderful💕🙏
Thank you for the practical advice and insight. So glad you are able to maintain your sense of humor while dealing with such pain. Prayers for peace and pain free days.
Jim, you know we always behave. But I must say I was ticked pink to learn that the word for “brother” in Bulgarian (a country I lived in for 9 years) was “brat.” It explains everything. Love you, brat.
I can relate so intimately with your your journey, although I have'nt arrived there yet. Your even a fellow oregonian. Jim, I hope your pain is minimal and there is still some joy.
Hi Jim, Thanks for the update. You and I have been on hospice for a comparable amount of time. You have had more baseline pain and have been dealing with that, while I spent some period of time perhaps with lesser pain, but also more quicky losing my ability to even get out of bed to walk to a toilet or to do anything else.
A couple of weeks ago I had couple of painful, dangerous falls. Down in a heap, with the handwriting on the wall that my even being able to stand up again from my Hospice bed was rapidly disappearing. With similar good advice from my Hospice nurse, I've also let go of my past reluctances to stay ahead of the pains/trends, and to take meds like Norco and liquid morphine to stay ahead of breakthrough pain, which for me often involves a deep, recurring ache in my right back/hip area, and often in parts of my weakening legs.
I can now report that several things that I was afraid would happen, did happen. The drugs definitely did "slow down" and clog up my intestinal system. I did need to "stay on top" of this situation in better ways with earlier and better palliative interventions with the usual laxative agents, stool, sofeners, etc. Alas, things did not always work out, and I greatly suffered. It is hard to describe how one can get to crying out so loudly in pain while trying to use a bedpan for some very painful attempts at things that seem impossible in the moment.
To the extent that I was not able to do that more quickly and well, I can report that I went through several lower levels of personal, Painful Hell during the next couple of weeks.
Bowel/other pains. Great grief over the loss of my ability to walk. A myriad of toileting and bedpan issues. A lot of painful crying right out loud. An exponential jump in day-to-day caregiver assistance needs. Many more disruptions to much-need sleep. Watching and feeling the muscles, strength, and tissues in my legs atrophy away more with each passing day,
In hindsight, I am better this past week than I was during the 2 weeks prior. Fortunately, the few times when I had some other painful episodes are mostly memories now. I still cannot believe that I had these words go through my mind. .... "How is it feeeling now?" To which I replied, "Well, the closest I can come to describing it, is that it feels like a Crazed Prairie Dog is chewing though my Anus, trying to get to the Fire Ants on the other side."
(Human resilience still amazes me). I am so grateful for love and compassion in this world.
hello ctarleton, You too are a brave and sensitive warrior who is able to thank another member going through what you are going through. You deserve a thank you from all of your brothers here in H.U. We wish you No Pain but the love of your family, friends and your Pca brothers. Please post on here as much as possible and keep your spirits up. Take care!!!
James, You are the kind of man we all want to be and that I admire. Again I wish you No Pain but just happiness that God Has chosen you to show us the road we may have to travel. I hope and pray that my humor will get me through those torturous days and nights and that I can still speak without screaming. I owe you for bringing tears to my eyes, again a guy who depends on humor should not be crying. Please think of all of us as your true and loving Brothers. Oh, I almost forgot, I wanted to ask Geri how much is remaining in the checking account?
James, So long for now and God Bless you (and Geri and the family)...
Wow Jim a very powerful description of what you are enduring… my wife passed oh breast cancer that metastasis to her bones so I know the pain that bone cancer brings… I remember the hospice nurse saying… give her as much pain medication that she needs… wink wink… I believe she was suggesting if you give her to much and she overdoes at least she will pain free… I wish you all the best Jim ang God Bless you…..
Thanks for the Urn advice. Seems nice to choose it oneself. (I like the Ducks, but not THAT much!) nice thing about cremation as one could have a small portion taken to some significant place such as a favorite mountain or river or beach.You are not getting adequate pain management at all right now. No good.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Vancouver BC, Coffee meet & greet, Sunday Mar 17, 10:00 - 12:00
Facebook Memory came up 12/17/2015 - Fifteenth and last chemo that year😊
Moving on to hospice care
Moving on with hospice care.
Hospice or an Aggressive Oncologist
