I've been on hospice about 57 days now. Still can hardly walk due to how much my feet, legs, and muscles nerves got beaten up by the prior double chemo Carboplatin + Taxol I had as a last treatment for my comorbid advanced prostate cancer and also the advanced rare melanoma.
Painwise, I've been relatively OK, so far. I get a recurring lower right back/hip ache about every 5-6 yours. Very annoying over time, but it could be much worse. I take some relatively lesser over-the-counter pain meds about every 6 hours, 24/7.
As I've mentioned before, I've had decreasing mobility, strength, and toileting issues as things change. I can still "make it" from one room to the other for toileting issues, although I did have a couple of falls a while back. It's been getting harder and harder to "get up" again, though, and to walk back when I'm done. We got me a bedside commode frame with handrails from Hospice, in anticipation of a day coming when I will no longer be able to get far at all from my hospice bed for toileting issues.
The "Tip" I have recently found helpful is that the bedside commode frame with its very steady widespread footing, higher arm/hand rails, and a higher starting position can be put right over my existing toilet, and it's instantly much better for me now in all regards. Just remove the little catchment pail and position the frame & seat right over the existing toilet. Sooooo much easier for me now.
My thanks to my wonderful Hospice nurse who made the suggestion, based upon her years of experience with prior Hospice patients.
Written by
ctarleton
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Love the tip Charles. Every little bit of useful advice will help us all.I've learned to take my Lymparza pills using a shot glass rather than touching those toxic pills. I'm amazed by the results I'm getting after 2 months. I may not be following you so closely as I thought a couple of months ago. One benefit of BRCA2 I hadn't thought would evolve.
You have made a great many very intelligent and helpful postings to this forum over the years and I see that, in spite of your condition, you are still doing it.
I want you to know that I and many other participants in our forum are thinking of you and wish you the best.
Thank you , Charles, for the very useful tip … This works for the many of us that have pretty much the same mobility issues and aren’t even in hospice … yet ( me ).
I think that a very important final part of our cancer journeys, hospice , has been little talked about , in detail , since I’ve been on the group , and thanks to generous people like you and JimBarringer , for the rest of us that are knocking on the door …or just curious about “ next “ ….. thanks for this closer look at hospice , I , for one, know I’ve really found all this help to be very useful and reassuring. …. I know there are many others.
Charles, It’s so good to hear from you. I’ve been thinking about you. Thank you for taking the time to post this tip that will help so many others here. Take care. Alana
Nice tip ctarleton. We recently refinished our bathroom and my wife insisted on a higher toilet and counter top as I am almost 6’4”. The taller commode is much better than the main house, standard height toilet.
I even have trouble getting my hands in the right position for the wiping portion of this operation. We recently also got a higher toilet and added what my grandson calls a butt washer. Yes the bidet add on is great. Hot, warm, cold, mild or hard spray. All clean and dry with a wash cloth. Works wonders... Now for the frame to get back up (I don't need it yet, but might some day.) Thanks for the hint.. Best of luck and comfort to you...
+1 on the add-on bidet. They're as cheap as $50 - about what a deluxe toilet seat costs. If you do the unheated one - no outlet is needed and only 1 very simple water connection. Highly recommended!
How courageous of you to continue to help others with your experience. I see my future and doubt that I will have the graciousness to think of others. Thank you so much
Thanks, j-o-h-n. My "chin is up" today. I even summoned the energy to shave myself today. It's a more involved process when you try to do it sitting up in bed or on the couch because you can no longer stand up for that long in front of a sink and bathroom mirror. All the "little things" that day-to-day caregivers help you do are unimaginable until you've actually "been there" and "done that", particularly toward the final stages of any long term disease progression. If in doubt, Hug a Caregiver!
(FYI, I did 14 rounds of Keytruda for my melanoma as an earler treatment. I think Keytruda may have held some of the cancer(s) back for a while, but it was eventually stopped due to obvious radiographic progression, with a pretty steep autoimmune reaction to all my "liver" markers right toward the end, which responded well to the dose cessation and some temporary higher dose rescue steroids.)
I guess it's time for you to get an electric razor (which I hate). Who knew we would need help in doing the mundane chores of our daily lives. Like most of us, wouldn't it grand to go back in time when things were simpler? Before you go to sleep let your mind wonder back to your youthful days and you'll dream of those days. It's life a temporary escape from your current life. It's good to know that the caregivers are giving you care. I don't mean to pry but what was your location and what did you do for a living. If you don't wish to answer I certainly understand why not. Take care of yourself and keep posting (we miss you)...
I can’t stand very long as well. I have one of those plushy 8 wheel office chairs I leave in the main bathroom all the time. Nearly the entire wall is a mirror but too far to help much , seated at the counter sink. I also have one of those nice , largish, mirrors on a stand that is flat on one side and curved for a close up on the other. I keep that mirror on the counter. If I need to shave I have all my accessories in a drawer in front of me , I place the mirror just right of the sink and it’s easy to shave and see everything, easy as pie. You can leave that office chair by your bed at night and get up into the chair…. When you wake up, and push yourself, backwards, into the bathroom to clean up, or kitchen for meds .. all over the house if need be. Saves a lot of painful walking and standing.
After using the chair to sit in the morning bathroom , I get up and push it like a walker ( holding onto the top back , good walking exercise ) …. Push it to the kitchen counters and sit down again for my morning meds, supplements, juices to wash everything down, make coffee …all from the chair.
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Moving on with hospice care.
Hospice or an Aggressive Oncologist
Decided to go into hospice
Two Questions: 1) Zytiga and Liver; 2) Minor Pains
