No treatments for me.
Comments
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***to Celine
Wow!!! I hope this is your sanctuary with the gorgeous flowers and swing with sun shine peaking down through the shade
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Hello Dear Lovely Ladies,
I thank each of you for being here -actively talking & supporting, reading quietly not sure what to say/not say, hoping against hope that diagnosis not become a harsh reality, and anywhere in between.
I talked with Rick and he says Cindy is back in Hospice (her vacation home -wink, wink). Before I share the latest "diagnosis" I'd like to preface it with Rick's observations. The Hospice group Cindy's with has started rotating nurses assigned to patients every couple weeks-to help prevent attachment/boundary issues. Seems like a good thing. However, with Cindy (I can't say for anyone else) it's not so good. Here's why Rick says that.
Beginning of cycle: Cindy is up and moving around, out pulling weeds, eating healthy meals daily -still needing the pain meds, but functioning with decent QOL. Bring in a new Hospice nurse: get a new "diagnosis" from the nurse, Cindy gets really depressed, wants only fritters, ice cream and donuts, ends up back in Hspc facility.
Rinse & Repeat-and these nurses are making extreme claims: ovarian cancer, another says if she doesn't exercise her circulation will decrease and they'll have to cut off her hands and/or foot, and more. So, yeah, I'd get more depressed after hearing these people tell me this stuff, too. Emotional stability is crucial to QOL and I'm rather ticked off -to put it mildly.
So, now the latest rotational nurse prediction: central nervous shutdown -meaning her organs are going to be shutting down --and Cindy's back in Hspc facility. Also, the nurse said her O2 stats were in the 70s ... and Rick says, "Really? Before you got here, it was 94."
So, Rick says until he hears something from Cindy's actual Doctor, he doesn't believe it. And the Doctor is why they are staying with this Hspc group. Rick was on the way out the door as we were talking; so I hope to hear back soon? if he gets to talk with the Doctor.
Another plus, Cindy got to spend more time with their granddaughter -she's been growing and smiling and such a joy!
***Linda, hopes that your family is able to support you more and more. I very much agree that some want the give it to me straight, and others don't want to know anything ... I'm in the former group -I may not like what you have to say, but give me the truth & I'll find a way to deal with it. Most of the rest of our family is on the fringes, concerned but not able to really get it.
Carpe-glad you've settled in safely and like it *except for the war zone aspect lol. Hope you're able to grow lots of foods and flowers.
Ali -I hope you've been able to get some reliable information about the LE
Athena -may you be among us all, sprinkling love and laughter in our lives when we need it most.
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Elaine, thanks so much for the update. I think I really disagree with the rotation thing with the hospice nurses - I DO understand the attachment thing, but isn't that approach to make it easier for the NURSES rather than the PATIENT? What does the PATIENT need????? I am so hoping Cin's little vacation getaway can help her get herself centered so she can continue enjoying that precious granddaughter.
Ali, have you made it over to one of the LE threads? I haven't seen you on the couple I am on, but there is a LOT of support there. It has been 4 months for me, and I am finally beginning to get a bit better overall, still don't have a glove/sleeve that works for me, so still bandaging most of the time, but today I got very rebellious and just using a sleeve that "sort of" works ..... but I enjoyed my day!
Hugs, love, and peace to each of you tonight.0 -
So good to hear from you Elaine. I'm so happy Cindy is able to spend time with that beautiful grandbaby.
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hello all, nothing new on Cindy yet.
Linda, I'm right there with you on 'a patient's needs' requiring evaluation 'specially when it doesn't mesh with general rules/guidelines. everyone is different & we all know how different Cindy is LOL ~rules are made to be broken anyways!
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thanks Elaine for updating, I would be depressed hearing all that stuff also.....
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Hi Elaine, I did read your update but didn't post as I was so angry and upset for Cindy. These nurses should be giving Cindy as much light and love and no negative comments.
I also think what they say to patients, would they like to hear themselves. I can't understand anyone telling a dying woman who has been through what she has, more terrifying news. Can they not give Cindy a break from this shit.
Omg I wish she could be on a little island waited on and live the rest of her days in peace.
I have got my second sleeve the first one was wrong and my hand swelled twice the size. DD with eating disorder had taken a turn for the worst so they have increased the anti depressants.
Hope you all find some joy and laughter in your day. Xxx0 -
Thanks Elaine for keeping us all up to date with Cindy. I am also upset to hear about this new hospice policy for her. As ali says this seems to be born from concern for the nurses over the patients like someone high up got some “business course idea” and thought it would be good to implement it.
Hospice patients really need the constancy and stability of the same people around them, nurses, aids, etc as much as possible because they have seen so much else in their future become impossible to rely upon or predict. And such thoughtlessness (trying to be kind here!) for anyone, nurse or dr to heap yet more worries on a terminally ill patient by talking about amputation!. With so many new and difficult situations arising every day for hospice patients, I feel they sure don’t need new nurses to get used to on top of dealing with everything else their illness throws at them. I do volunteering in a hospice and I know this is not their policy. Everything is for the patients (as it should be). It’s the first thing out of everyone’s mouth – what does the patient need or want? What will improve their lives, etc.? Not, how can we make conditions better for the nurses or prevent attachment issues. Are attachment issues not just normal caring about one another! If the patients promised not to die would the nurses be allowed to become attached to them??? Don’t get me wrong, staff who work in hospice, I believe, are special people, extraordinarily kind, caring and compassionate. They know and understand that death is a part of life. So I'm also angry on their behalf - people must be allowed to be human beings and love others .....
I think this idea may be bureaucracy gone mad…..
Let’s hope some sense prevails and they reverse this “nutty” idea.
Thinking of everyone and imagining that lovely sunflower Linda in order to calm myself down...
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My Mom's hospice nurse attended her funeral in her white nurse outfit. We were so happy to see her there. At lunch with the family, she said she saved Mom for her last patient because she was so upbeat and ended the week on a good note. Switching nurses around so they don't get attached is stupid. Hospice nurses are special angels.
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Hello Dear Ladies,
I talked with Rick tonight, he said Cindy should be able to come home in a day or so!
He also updated me on some stuff. They've been doing MRI's every 3-4 weeks for a while, and had found new tumors. No big surprise there. Cindy's pain meds just weren't cutting it anymore. As luck would have it, while talking to the doctor about increasing the constant pain med drip & the bolus as needed every 30mins, more MRI results came in: several more tumors found. So, she's upset and agitated about that, too. Along with the increase of pain meds (upped from 35mg to 48mg), Cindy's memory is adversely affected -she's got to get used to the new dosage -nothing unusual with this.
Rick's been there most every day, visiting, watching tv, talking, being together and they talk on the phone 4-5x a day, too, but Cindy isn't remembering everything. Upon using Oxygen Treatments, Cindy's O2 stats get remarkably better. Go figure, right?!! She was agitated the other day and it dipped to 65 ... it went up to 73 after her moving around outside, then they put the oxygen on her, she took a nap, and it went up to 83.
So, a concerned family member {who we'll now call DMFM =Dear Misguided Family Member} visited -got her agitated and she started smoking more (Rick's had her down to 3-4 cigarettes a day and wearing the smoking patch), further reducing her O2 stats and memory. Then the DMFM took what Cindy recalled (with her memory really poor right now, it wasn't close to accurate) and sent an alert thru the family and stuff has been greatly exagerated ... leading me to the aggravated state I'm in now. Trying desperately to accept that this DMFM meant no harm, was only trying to update the family on a perceived serious decline in Cindy's health.
Now we have another group to add to family members -those who want the facts, those who really don't want the facts, and those who will drama-tize (intentionally or not) perceived facts.
Please, Dear Friends, help me remember we all make the world go 'round ... none are better than another ... and we do the best we can -until we know better; at which time, we are then able to do better =0)
Hugs & Happiness, Elaine
ps Reminder ... Good News! Cindy's pain is being better managed, her O2 stats are acceptable when staying on oxygen, and she'll be back home soon -where her Grand-daughter awaits!
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So very sorry about the family drama Elaine. Even though I have no extended family and can't relate, I can imagine having information come from other sources, particularly those who just blow in once in a while for a visit, can be aggravating. Your reminder is a good one. I'm sure it comes from a place of concern and love.
It sounds promising that Cindy's pain is under control and her oxygen level is hanging in. I don't want her to miss any opportunities to be with that beautiful baby who's awaiting her return home.0 -
Elaine, thank you for the update. I am offering special prayers for you as you do all you can for your beloved sister during this difficult time. You are so very special. May you feel loved, may you be free from pain and fear, may you experience peace.
Sending my most loving thoughts to Cin and Rick, as well as everyone here who supports them.0 -
Elaine, thanks for the update. Cindy and Rick you are in my thoughts and prayers.
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Thanks Elaine, I hope Cindy is home soon. Xx
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I think the nurses should receive additional training in handling the emotional aspects of their job. Constant changing of nurses is not only difficult for the patient it is also potentially dangerous. Using the same nurse allows the nurse to not only be fully aware of the details of that patient's health history it also allows the patient to build a trust with the nurse. I know myself I need to be with a person for a while before I trust them to be there for me and help me. I really don't know whose bright idea it was to change nurses for THEIR protection. I guess the patient doesn't NEED this protection.
I wish Cindy well and hope the hospice helps her spend her final days in peace. I guess the doctor who told her she probably only had a few months must feel like an idiot since she is still her, thank God, a year later. I would love for her to be around for at least another year but hopefully without any severe suffering. I pray that they keep any pain under control. Cindy, please don't let these insensitive nurses bring you down. They're not doctors and shouldn't be giving advice as it pertains to prognosis of your disease advancing. Next time they do that to you ask them what medical school they got their MD from.
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Hi Elaine,
Great to hear Cindy is getting home soon, it will uplift her spirits I'm sure - all that wonderful time with her grand daughter too!. Great for her to be able to look forward to good times at home with Rick and family. I hope they get her pain under control, she's a brave soldier.
Always thinking about everyone here.
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hello again =0)
Cindy didn't make it home today, still tweaking the pain meds & anxiety meds. her short term memory is terrible, she doesn't remember Rick visiting this morning -but she recognizes him immediately when he gets there. morning and night he visits and they talk throughout the day.
thank you for your support, here's to moments of peace & love!
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Elaine, thanks for the update. Cindy, Rick and the family are in my prayers.
Hugs to all, Cheryl
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Thank you for the updates, Elaine. I hope they get the drugs straightened out soon, so Cindy can go home.
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Happy Day! Cindy's home
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Thanks for the update, Elaine!
Wishing Cindy peace and comfort and lots of wonderful time spent with her granddaughter!0 -
Glad Cindy is home xx
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Great news Elaine!!!!! I'm sure Rick is delighted to have her with him again. There's nothing like beiing together in your own place.
Lots of love to her and you and the family xxxx
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Great to hear Cindy's home! I hope she is comfortable and surrounded by love. Sending lots of love to her family - may they have peace and love in abundance. Thanks, Elaine!
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Hey ladies! Checking in from the ME to see how everyone is doing and first of all, I was mad about Cindy's hospice providers making diagnosis, please - that is not what they are there for, or to make idle threats about health prognosis if you don't move around, etc. UGH. As for the family member drama, I've heard of that happening in other cases where it all starts becoming about them..selfish and childish, but it happens. Poor Cin. Then I kept reading and see that she is home, yay! No place like home. Hugs to all of you!
Well things are cooling down here, only felt like 110 yesterday and compared to 123, that's almost chilly, LOL! Crazy place over here, a mixture of very old, ancient traditions and stuff and the extremely modern. We're all getting the education of a lifetime. Hubby very busy as things heat up/cool down, rhetoric, talking heads, etc. Of course we don't want to go into Syria. Let's all pray that doesn't happen.
Linda, my gardening is starting this week, yay! I have a neighbor a few houses down who transformed her desert landscape into an amazing little respite. The compound walls are high so we get some full sun, some shade and mixed light. The sun sets here at 5:45 now, never could have predicted that at all! Of course it's up at 5 (but I'm not :-) and things start to bake...
Guess that's all from here, ladies. I am praying for no health problems over here, I am wayyyyy too far from home. Trying to use the opportunity here to drop some weight and be more active, and eat less/better food. Lots of fresh stuff here, not much is processed, so going with the fresh fruit and veggies as much as possible. Of course there is McDonalds so the fries are like my crack cocaine...I try to stay away or just get a kid's meal :-)
Love and hugs to all of you, be back soon. xo
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Carpediem, thanks for the update. So good to hear from you.
Sending my most loving thoughts to Cin, Elaine, Ric, and all you wonderful ladies today.0 -
yay Cin is home!!! Thanks elaine!
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Hi Cindy and everyone, DH & i had a great break away without the kids.
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Cindy, thinking of you and your family, sending hugs and rayers.
Ali68, happy you had a break away, we all need those once in a while.
Hugs to all.
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Thinking of all of you...Cindy, I hope you're enjoying your time at home with your granddaughter, and the rest of your family.
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