A place to talk death and dying issues
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M360: From the energy and love you have, I can see you have a loooong way to go!
Happy thanksgiving to everyone
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M360 Sounds like a wonderful birthday and a very cool red antique desk and a new TV! I love watching foreign movies and always need closed caption (my hearing sucks and I wear hearing aides). Your daughters are super and yet I might be concerned about the youngest one. Hope the two girls go to counseling to get extra support. I have 2 of mine in counseling, one won't go.
I know what you mean about expiration dates..do they ever get it right? Lots of folks get bounced out of hospice! I mean I bounced in and out of hospice in August when I found out benefits were better off hospice. I signed up for palliative care and that was a GOOD thing folks. If it is available TAKE IT! I just edited this as I had total diarrhea of the fingers earlier.. jeez rambling.. dogs, cats kids..
But tomorrow is Thanksgiving and time to be with family. I am happy about that. I wish everyone a peaceful day full of what ever it is they enjoy and makes good memories. Happy Tofurky or Turkey Day to all! ((((Hugs))))
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Rosevalley I'm on Palliative Care and have a Palliative Care Doctor along with in home help for whatever or whenever I need such. This can also be a family member to whom the Federal Government pays for such, it's so much cheaper than a nursing home to them. If you can stay at home and be cared for they will do everything possible to make it work. I've been on Palliative Care for over three years and like you I feel it's a GOOD Thing in so many ways.
My Thanksgiving reflection is that I am Thankful for the Women on this site who have lifted me up when I was at my lowest and have given me the strength and courage to fight as hard as a I can for much more time in the coming year.
Here is a thing that we have done at times around the Dinner Table at Thanksgiving... You say what you feel is the strength or thing you like most about the person to your left, then you also say where and what you think that person will be doing five years from now. I hope this year the person to my right who will say where they think I will be, will be still living beating all odds and shocking my Oncologist and the whole medical team that takes care of me. What I will be doing then, still trudging along to the Cancer Center, but still alive! Wouldn't that be a blessing ummm!
Didn't sleep last night at all, just love the smell of the house with things baking and the leaves so vibrant outside. Hopefully I won't be sick and I'll be able to eat just a little bite of everything that is made. Lately I can't eat a whole meal, like only a forth of a sandwich. But I love Thanksgiving so much and what is being made by my daughters is a feast that will last the whole week long.
Again enjoy this day to the fullest, along with love and laughter.
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HAPPY BIRTHDAY TO M360 AND MORE TO COME!!!
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Rose, Blondie, I am sorry you are having such difficulties with your families.
We are here for you if/whether/in addition they cannot be [for one reason or another].
Hugs, Pam
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M360 Happy Birthday!! I hope it was full of happy memories and you could taste and enjoy the goodies.
You know I got an email from a friend who was "perplexed" how can you look so good and be so sick? Dying? How? Interesting question. My 14 year old can't get her mind around my good days and bad days either. Some days I have no energy. Friday I took a walk with my DH and our 2 dogs. I tripped on a ultility grate and did a face plant into the cement sidewalk. My right knee is purple and swollen and both palms are red and I jammed my left wrist so badly it hurts up into my shoulder and made my grip weak. Now my 14 year old can see the "hurt" and has sympathy but cancer you can't see. I wonder what the fall did, because I drained tonight and this was first time there was mucous and floating stuff in the pleurx bottle. I am amazed that even after a fall like that, radiation on the left humerus, both hips and the femur above the right knee (just 4 weeks ago)- I broke nothing and can still walk. Very slowly.. haha Wonder woman bones.
I never feel good; that's the problem. I always feel my gut, the hard lump/ ridge in my belly and distention and the painful heart burn. Stomach contents bubbles right up in to my mouth no matter how much prilosec I take. Small meals or a big drink and you are stuffed to the gills - even after I drain 2 liters off. Then my gut aches.. well right now everything aches because I fell. But to stand and talk to someone, they probably think I look great! Wish I could feel as good as I look. This is such a bizarre disease.. I meet the criteria for hospice. My oncology NP asked if they were making me better... I said not that I can tell. Tumor markers come back Monday. Nothing has changed and I surely do not feel any better. Slowly circling the drain.
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Glad every one had a family friendly dinner /-brunch, my fooi,is coming up . also i amm not eat muchas i was, 2 meals, not like b4 done, bt the snacks is going.
I feel myself decli ing scant explzain it just know it is there. Slept the past 2 ddayts to make up for beiout qwednedsat n thurs, so tired, exhausted,i know my body n wht it and whay it needs.gooluck for your rrcupation
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happy belated bday, M360! Hope it was just as you desired it to be! May your bday wish come true! Xo letranger
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anyone heard from skylotus
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Rosevalley... wow, you hit it right on the head when you said "Circling the drain". I'm going to write that down so I don't forget it.
JJ
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rose and dune. - I love your honesty about death and dying. I often look here. Just wish that I could give you both big hugs.
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Circiling the drain i love that. Wish we lived next door to each other rosie big hugs. Dont fo anywhere rosie i need u there for me selfishly...
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Oy Last night was one of the worst nights ever. I was up off and on all night..oxy/ ambien, multiple tums no difference. The contents of my stomach keeps coming up. The pain in my throat, taste and misery is too much. I am going to have to stop eating and sleep sitting up in a chair - laying flat is not an option. This is horrendous. As soon as the office opens I am on the phone maybe they can scope and see what the issue is. My tumor markers should be back. I feel awful, just awful.
My 14 year old is still off from Thanksgiving break.. seems like they are never in school, off all last week and today. No wonder she is 5 grades behind. The deaf school does the bare minimum; the only kids that are grade level have cochlear implants that give the kid useable hearing or are hard of hearing with aides. Those that are profoundly deaf are screwed. Apparently they are unable to teach English to profoundly deaf kids. Anyway my bored 14 year old will have to endure another day finding something to do, cause Mom is out of commision.
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Wish there was something I could fo to alleviate the pain and horrific uncomfortableness you and others are going through. I hear your miserableness. None of us can know. I think I writing about your experiences helps you and us. Blomdiex46 hanging with you as well with everyone else. Too bad there can't be a central meeting place for this group. Everyone could be together.
Much love
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I'm reading and following all your posts regularly. You gals are always in my thoughts and prayers. Sending love, hugs and peace. Wish I could do more than just sit here and type something trying to find the right words.
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Rosevalley, so very sorry for your miserable last night. It looked like your digestive system got very upset. Is it an option to bypass certain organs, such as the guts? I know it's an option for patients with incurable guts issues. They install a bottle thing to complete the digestion process. At least find it out?
Blondie, you are in my thoughts. Hope you breathe better today and feel less lonely.
M360, hope you had a great birthday with your loving daughters!
Skylotus, hang in there, we will celebrate your birthday on 12/25！
Hortense， how are you doing? Thinking of you. Hope you had a nice Thanksgiving and is looking forward to Christmas!
All, my warm regards!
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Oy.. last night sucked. I puked my guts up this morning and the pressure relief was good. My throat is raw from gastric reflux. Ginger ale feels like alcohol on a raw wound - burns all the way down. Sipping water. No one works on Mondays at the onc office.. talked to triage. I managed to get zofran down and a pain pill. Thus I can type and engage. If the fluid/food stoppage continues then IV fluids tomorrow. My tumor markers continue to climb. Herceptin isn't doing anything. Surprise.. nope. Oncologist knows I won't touch the big guns.. stuck between a rock and a hard place. She knows with malignant ascites the odds are not good no matter what she does.
My kid's birthdays are the 5th, 20th and xmas.. I have to pull something together to skate until January when school break is over and holidays are done. I need to last 4 weeks. My Father in Law had brain mets from colon cancer. He was 90 but lasted until first week of January.. he loved Christmas. I can understand how folks wait until holidays are over and then die. Don't anyone feel sorry when I pass, cause I am going to a better place out of cancerland and ditch this cancer filled body. I am deeply sad to leave my 14 year old and my other 2 are barely out of the nest, but being sick and holding everyone back isn't good either. In a strange way we all get set free from cancerland, Mom Dad and the kids.
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Rosevalley, it is heartbreaking to read your post. It is heartbreaking! You will at least last to see 2016. It seems if you could calm down the upset organs, you can maintain a kind of stability like you managed to have achieved before last night. I am so very sorry that you are suffering!
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sweet rose. So sorry you're unable to get relief today from the oncology office. It sounds very painful. So very sorry to hear about the school not doing the best I can to teach those kids. I totally understand about my whole family being set free from cancer plan when I'm gone. In the beginning when I was diagnosed I wanted to live every last day I could for my kids. But now I see them seeing me sick all the time just keeps them upset all the time. Yes but at they can start recovery.
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Rosevalley, you should go to the ER now to get the IV. It might be that your bowels are irritated and have inflammation. In that case, you probably should not eat and drink anything till the inflammation is gone.
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worried about you, rosevalley.
Waiting for a check in from hortense, skylotus and m360. But thinking of everyone even though I can't remember names. Sorry about that.
Xoxo letranger
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Love you ladies so much. Praying everyday for pain relief for you and sunny days with your children
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rose. Hope you got some sleep last night. Hope you're feeling much better today. Thanking of you
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rose. I know it's not the same but the only things that helped my reflux during chemo was gaviscon (OTC) and Ativan. I carried around a box of kix cereal or soup crackers to eat one at a time. Ginger or sleepy time tea helps an upset tummy. I piggybacked zofran, compezine and phenergen but they cause constipation. I hope you get some relief. We are pulling for you. Are here to listen. You all are my heroes.
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Rosevalley, just checking to be sure. You are using the oral disintegrating Zofran (ODT) not the tablets right? That's the only thing that works for me.
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I am still in my pjs and it's 2:20.. woke up with the headache from hell. I get these and they just wipe me out- pain meds and sleep. ugh.. Thank goodness I can swallow pain pills they are little. I will get disolving zofran.. it isn't. I have managed to drink water and eat jello and small amount of juice, so I am avoiding the IV trip. I shouldn't post, just upsets people.
My DD3 left for the dorms yesterday and I didn't see her to even say good bye. Slept most of the day. I feel bad that I can't participate. Thank goodness for internet shopping - there would be no gifts. Patty knows what I mean about worrying your kids and dampening the mood..what gets done, activities all of it in your family. Kids know and thank goodness they are resillient little buggers. I remember when my Grandmother was dying with IBC we would scare each other quietly tiptoeing around at night to check on her. My Grandmother had brain mets and it made her do some pretty goofy things so we constantly checked on her, not just my Mom but my brothers and me too.
I go back in to oncologist tomorrow, she called. Plan "B" herceptin isn't working..tumor markers keep rising, belly issues increasing and swallowing an issue. Do I try something else to make it through the holidays or throw in the towel and sleep until Jan? Honestly..this seems so futile. I need to increase the number of rings the phone makes before it flips to the answering machine.. I can't get to it before people hang up. ugh..
Sending you all lovingkindness and hugs - I am a firm believer that what ever you send out in prayers, lovingkindness and love gets returned more than doubled. Spin the prayer flags. I am thinking of you Skylotus, M360 and Hortense - (((Hugs)))) to all.
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Dear Rose...you're telling it like it is Rosie (I love that Blondie calls you that!). It all sucks...but talking about it & knowing we care...well, can't say that it makes it better...but, we want to know how you are. Sending hugs & always thinking about our sisters!!!
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Definitely get the disintegrating Zofran, Rosevalley. It works almost immediately for me and hope it will for you. And, please don't stop posting because you feel like it upsets others. I appreciate your posts immensely. We are all facing the same things you are going through and all we can do is support each other. I'm sorry it is so tough for you right now. Wishing you comfort and a good nights sleep tonight.
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I read this thread every day. True reality of breast cancer. Keep posting. All of your courage and thoughts and experiences mean so much to those of us following.
I love you all. This thread is the real deal and your postings are reality. Thoughtful and perceptive. The pain of dying of disease.
Hugs
Diana50
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yes please don't stop posting
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