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Thread: Cancer--Would anyone like some cheese with this whine?

  1. #161
    @notcharlotte I am in hospice care and to my amazement, there is little difference between palliative care and hospice care. Their focus is comfort care, spiritual, nutritional, therapies etc. Wonderful human beings they are. I swear I saw a white feather fall from one nurse. ;p

    My husband and I tried to double team the doctors on our video visits. So much is lost with those tele-visits, but it’s nice not having to shave your legs before your appointment. Lol. Yes, even though I’m dying I still shave. My husband shaves around his ‘retirement beard.' Gads he’s wears it well. A handsome man he is. Have you ever known anyone who wakes up and says “Good morning! It’s a new day!” I’m a morning person, but I need about 15 minutes of quiet to hear the birds, luckily not frogs. After that I’m happy, but say good morning to me when I don’t want to hear it and my head spins around.

    Frogs. I don’t need an alarm clock to wake up, never have for some reason I don’t understand. My husband does. He had some that would make Mother Theresa swear. Then he found one that began with one frog sound—rib-bit , then more frogs joined in and if you hit the snooze, you were up because the sound of hundreds of frogs was too damn much. It was a novel idea. The frogs croaked, lol, and we could not find a replacement. Aww. NOT.
    Sorry, notcharlotte for the diversion;-/

    I do have one new pain med doc on my team who was honest about how pain meds are managed, even for the dying. He said he disagrees with how their hands are tied and how they are monitored. But he will meet with my surgical oncologist, my oncologist, my nephrologist, Primary Care doctors and get back with a plan. I told him I would be the squeaky wheel until I heard from him. I was given an opioid, with atarax and an increase in the prednisone I take might make the allergy symptoms tolerable. It worked, but I was so dizzy, I could not walk in a straight line, I’d bounce off a wall. I gave it time, but I was unable to function--starring off not moving or thinking too much. I slurred my words. So, they are figuring out a plan B. In the meantime, I have come to wonder if for some people, if we have pain or fear that stops us, we might have to continue doing what we want with that pain or fear. My needs are challenging because of how my head and kidney respond.

    Thank you for suggesting my husband becomes more involved. He’s going through his own grieving process. The difference is he doesn’t have my body, so his is emotional. I have been teaching him to do somethings he hasn’t had to do and he’s learning well, which helps him feel connected. I should have tried this training program years ago.;-) He also needed to feel more engaged, so he initiates phone calls to docs, sends out a typed list of questions and what I (we) want and need. He makes certain every question is answered, although it’s kind of funny. Because he hasn’t has as much experience with doctors, as fantastic he was at running a company, doctors master the side step. He’s taking that on as a challenge. I feel this is good for him.

    - - - Updated - - -

    @Hugor Hill,
    I understand the myriad of feelings that come along with having a chronic or terminal health condition. I also know those feelings change as one’s health declines, relationships change, dependence on others and medications—just to name a few. I know I’m terminally ill. I also know that any other undiagnosed or diagnosed illness or accident could end my life before the brain cancer, or kidney failure. I think I’m becoming better prepared for the dying process. I’m already there. Life is ever changing for me as it is for everyone.
    I didn’t think I would be very emotional, because I am usually a stoic type when faced with a challenge—just give me the facts and I will adapt. Surprise! It has been a roller coaster ride of emotions.

    I wish you a long life with as little pain as possible.

    When you said you were a wreak after reading my last post, I never intended for any of my posts to make anyone feel an emotional wreak after reading them. I regret that and I apologize.

    I’ve neglected to consider what other members are coping with when they read posts. Thank you for sharing that you felt a wreak, I would not have known, and I feel awful about that.

    I know my posts are for me to express my experiences and feelings, ask for help and support. Gratefully, I’ve received an abundance of that.

    I will do some soul searching and decide if continuing to post is wise or not.
    Namaste

    - - - Updated - - -
    @Hugor Hill,
    I understand the myriad of feelings that come along with having a chronic or terminal health condition. I also know those feelings change as one’s health declines, relationships change, dependence on others and medications—just to name a few. I know I’m terminally ill. I also know that any other undiagnosed or diagnosed illness or accident could end my life before the brain cancer, or kidney failure. I think I’m becoming better prepared for the dying process. I’m already there. Life is ever changing for me as it is for everyone.

    I didn’t think I would be very emotional, because I am usually a stoic type when faced with a challenge—just give me the facts and I will adapt. Surprise! It has been a roller coaster ride of emotions.

    I wish you a long life with as little pain as possible.

    When you said you were a wreak after reading my last post, I never intended for any of my posts to make anyone feel an emotional wreak after reading them. I regret that and I apologize.

    I’ve neglected to consider what other members are coping with when they read posts. Thank you for sharing that you felt a wreak, I would not have known, and I feel awful about that.

    I know my posts are for me to express my experiences and feelings, ask for help and support. Gratefully, I’ve received an abundance of that.

    I will do some soul searching and decide if continuing to post is wise or not.
    Namaste

    - - - Updated - - -

    Ok, I clearly am having trouble posting and will come back to this. I think I forgot how to reply, or I need chocolate. I hope it's the later.

    - - - Updated - - -
    @karuna
    Test--
    Hmm, everything I post is in one new message space. What am I doing wrong.

    - - - Updated - - -

    Okay, I must be having a stroke. I post in a new reply section, and when done hit post quick reply and... lets see what happens...

    - - - Updated - - -

    Good grief! Any suggestions? Maybe "go advanced"?

    - - - Updated - - -

    I'm sorry. This is unfair to all of you. hmm

  2. #162
    It’s no big deal just wait about 5 minutes before you post again and that will not occur again.

    You are a PR jewel, never stop posting your feelings and other thoughts, especially about chocolates. Major hugs and love. M
    Last edited by Mecha; 3 Weeks Ago at 05:41 PM.
    Listen to the LOVE. Inspired by Harry Irene (2015)

  3. #163
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    Quote Originally Posted by Mecha View Post
    It’s no big deal just wait about 5 minutes before you post again and that will not occur again.

    You are a PR jewel, never stop posting your feelings and other thoughts, especially about chocolates. Major hugs and love. M
    EXACTLY!!!
    @karuna. Please don’t stop posting and certainly DONT WORRY about the clerical stuff. We just want to hear from you!
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    The cause of all suffering is attachment...

  4. #164
    @Ellyn
    Thank you. My nephews need me and I need them. We speak or text every day. They are angry and I'm trying to calm that because after you let the anger out, let it go. They want me to visit but they know it would put me at a higher risk of contracting covid. I feel it doesn't matter if I die from it or something else. I want to hug them and have a memorial service for their dad. I don't know what to do. My nephew secured the cremains while my sister left the house. My nephew found an audio file on one of his dad's computers and it was my brother-in-law and I playing Scarborough Fare. He played the guitar and I was on cello. We played many songs together. He had a wonderful voice and talent. Often we'd have the entire family involved and jam.
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  5. #165
    @Mecha

    {{{THANK YOU}}} You're so smart. Thanks for helping. Do others feel I need to re-post my replies? Let me know. I'll look it over and see who I left out.

    I don't know what to do about continuing to post if they make others feel a wreak. I don't want that. We all know how this will end, no spoiler here.

    I do know what to do about chocolate :-D Last night I impressed my husband by nearly finishing off a pint of Gelato. Chocolate calms me and I need the calcium, right?! ;p
    Have you ever had your favorite liquor in a chocolate ( little shot size) cup? Baileys, a German blackberry liquor, raspberry...there are endless options to enjoy.
    Like VEDA, peppergirl, djrick liked this post

  6. #166
    @jaders

    Thanks for cheering me on. It helps. {{{hugs}}}
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  7. #167
    Quote Originally Posted by karuna View Post
    @Ellyn
    Thank you. My nephews need me and I need them. We speak or text every day. They are angry and I'm trying to calm that because after you let the anger out, let it go. They want me to visit but they know it would put me at a higher risk of contracting covid. I feel it doesn't matter if I die from it or something else. I want to hug them and have a memorial service for their dad. I don't know what to do. My nephew secured the cremains while my sister left the house. My nephew found an audio file on one of his dad's computers and it was my brother-in-law and I playing Scarborough Fare. He played the guitar and I was on cello. We played many songs together. He had a wonderful voice and talent. Often we'd have the entire family involved and jam.
    @karuna, at this point I'd let your nephews visit, for you but also for them. They need to mourn their father, and in you they have the supportive family member that they lack in their mother. And you should have that contact also. It's summer, the weather is nice, you can keep your interaction outdoors (lower risk of transmission), and you can now fairly easily get hold of a surgical mask and face shield to protect you. I am unfamiliar with most Jewish traditions for memorial services, but I can't imagine that most faith traditions can't find some flexibility during a worldwide pandemic. Anyway, it seems that a get-together, and even just a "social memorial" to your brother-in-law would do you AND your nephews a world of good right now. They must be absolutely reeling from this.
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  8. #168
    @Ellyn

    My nephews would like me to visit them which is in a hot zone for Covid19. I agree that I could wear masks, I have n95 masks and I could get a shield. The flight— it would be what it will be.

    Then we could hug. Maybe? An outdoor gathering with their children and some close friends with the Rabbi and maybe bury the cremations. I don’t know about that. I could play the cello, no singing- have to check that out. This will have to be modified because he should have been buried, not cremated. Their Rabbi will guide us.

    It would be emotionally healthy for everyone involved. Not my sister.

    I’ll call them and ask what they would like. I know one of my nephews would like to spread his ashes in the Bay because their dad was an avid sailor and the kids have his boat.

    Whatever would comfort them. They are reeling from his diagnosis, his unexpected suicide and their mothers total lack of respect for them.
    (((Thank you Ellyn)))
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  9. #169
    Quote Originally Posted by karuna View Post
    @Ellyn

    My nephews would like me to visit them which is in a hot zone for Covid19. I agree that I could wear masks, I have n95 masks and I could get a shield. The flight— it would be what it will be.

    Then we could hug. Maybe? An outdoor gathering with their children and some close friends with the Rabbi and maybe bury the cremations. I don’t know about that. I could play the cello, no singing- have to check that out. This will have to be modified because he should have been buried, not cremated. Their Rabbi will guide us.

    It would be emotionally healthy for everyone involved. Not my sister.

    I’ll call them and ask what they would like. I know one of my nephews would like to spread his ashes in the Bay because their dad was an avid sailor and the kids have his boat.

    Whatever would comfort them. They are reeling from his diagnosis, his unexpected suicide and their mothers total lack of respect for them.
    (((Thank you Ellyn)))
    If you go, go with masks, shields (one for each leg of the flight - they're not expensive) and gloves. If it's a short enough flight try not to eat, drink or use the restroom on the flight. And if you can afford first class tickets right at the front of the cabin this would be the time to splurge - let the gate people you need to get on the plane last (fewer people walking past you) and off the plane first. Bring a physician's letter to back up the request.

    Just because a state or city is a Covid hot zone doesn't mean you'll get Covid. If you're staying in a hotel, go over everything with your own wipes, and pack a spray bottle of isopropyl alcohol - spritz the sheets and pillows with the alcohol a few hours before you're ready to go to bed. People are staying in hotels and doing fine. Avoid the restaurant, order room service and have them leave the tray outside the door for your husband to bring into the room.

    Right now emotional health may be more important to you than physical health, and only you can make that choice. But for sure your nephews need your support, either in person or via distance (and they can have a funeral with you participating via Zoom if you cannot travel). They have been dealt an awful blow - in a very real way they've lost both of their parents, as their mother will never be the same person in their eyes. They may forgive her, but I cannot imagine they'll ever feel the depth of love for her that they did when they were kids. That's a loss for them, and it's a loss for her too. She may not feel it now, but some day she will. She may not care that she lost her husband, but to at least some extent she's also lost her sons and her grandchildren. They may forgive this, but they won't forget it.
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  10. #170
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    Quote Originally Posted by karuna View Post
    @Mecha

    {{{THANK YOU}}} You're so smart. Thanks for helping. Do others feel I need to re-post my replies? Let me know. I'll look it over and see who I left out.

    I don't know what to do about continuing to post if they make others feel a wreak. I don't want that. We all know how this will end, no spoiler here.

    I do know what to do about chocolate :-D Last night I impressed my husband by nearly finishing off a pint of Gelato. Chocolate calms me and I need the calcium, right?! ;p
    Have you ever had your favorite liquor in a chocolate ( little shot size) cup? Baileys, a German blackberry liquor, raspberry...there are endless options to enjoy.
    @karuna,
    Please continue to post and let us know how you’re doing, and what’s new. Whether it’s going well or not, you truly are an inspiration to so many of us here following your thread. I imagine it’s therapeutic for you as much as it is for us.
    I have been following your posts for a while now, but too timid to join in, as we haven’t interacted before. But I am just amazed at how strong you are, and how pure your heart is for others, and I just wanted to encourage you while dealing with everything else going on right now.

    You remind me so much of my grandma that it really hits home for me. She passed away when I was 18 (pancreatic cancer) and I was so devastated for a long time. Two years later my father passed away at 53 YO (healthy, worked out and ate clean) from a dissecting aorta. June 15th 2003. It was Father's Day. He was on vacation with my aunt, his sister.

    I kept telling myself that morning to give him a call, tell him Happy Father’s Day, and that I loved him.

    But I got busy and caught up with other things that morning, and it was at 3:38 that afternoon my aunt called me to tell me he passed away while they were in the living room talking and catching up. I didn’t get to tell him thanks for being such a great Dad. I regret it to this day. And I was a wreak for several years.
    Not sure why I’m saying this, except I guess following you on here, I so much sympathize with you and your loss of a close friend/ family. Life seems so cruel sometimes, but it’s people like you who truly make a difference. Even if it’s over the internet. Take care, and I will keep following you and your posts.
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  11. @karuna, thanks for the update. you continue to be so inspiring! your nephews are going through a stage of grief, anger. i don't blame them for being furious. they will work through it, and, i hope, to acceptance. no guarantee on timeline of course.

    i'm sorry for the emotional labor-your husband, your family-that's an exhausting amount of emotions to cope with. but i suspect you don't mind since you have people who care and you all tend each other's needs. i'm glad you put your husband to work. he needed the control. nothing makes us feel more helpless than the unknown, but you are all facing it with an astounding amount of courage.
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  12. #172
    @karuna I'd love to have you go line dancing with me. I can tell you're a sweetheart and we'd have a good time. Just pull on a pair of pair of jeans....grab your boots and lets go. Oh..don't forget you to wear a mask. That virus is still around.:
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  13. #173
    I will give personal thank you’s when I return. We, my husband and I, are going to a service his sons, the Rabbi and with my input planned. We will all feel better. We’re taking every precaution. He will be buried in a plot my nephews bought near theirs. We will also spread some of his ashes at sea, that he loved, we will use his sailboat, which his son owns. We’ll be in nature.

    I will not sing or dance, but I will give a eulogy and play cello and violin. It will be a wonderful honor of his life.

    Ellyn was right. My nephews have no plan to see their mother and their children feel the same. I do hope she can heal whatever is wrong with her spirit. She will have lost a lot of love from her children and grandchildren. Sad.

    I will be back next week or earlier if necessary, although there are doctors in the family. This will be positive and healing for everyone.

    Take care and be safe. The virus is spreading and is no joke. And thank you for caring. I appreciate you.
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  14. #174
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    @Hugor Hill,
    I understand the myriad of feelings that come along with having a chronic or terminal health condition. I also know those feelings change as one’s health declines, relationships change, dependence on others and medications—just to name a few. I know I’m terminally ill. I also know that any other undiagnosed or diagnosed illness or accident could end my life before the brain cancer, or kidney failure. I think I’m becoming better prepared for the dying process. I’m already there. Life is ever changing for me as it is for everyone.
    I didn’t think I would be very emotional, because I am usually a stoic type when faced with a challenge—just give me the facts and I will adapt. Surprise! It has been a roller coaster ride of emotions.

    I wish you a long life with as little pain as possible.

    When you said you were a wreak after reading my last post, I never intended for any of my posts to make anyone feel an emotional wreak after reading them. I regret that and I apologize.

    I’ve neglected to consider what other members are coping with when they read posts. Thank you for sharing that you felt a wreak, I would not have known, and I feel awful about that.


    I know my posts are for me to express my experiences and feelings, ask for help and support. Gratefully, I’ve received an abundance of that.

    I will do some soul searching and decide if continuing to post is wise or not.
    Namaste



    Dear @karuna,

    I in no way wanted to make you feel as if you should censor your posts, I'm sorry about that, truly.
    For my part and I'm sure its the same for others, I hope you continue your post's, I value your honesty in them, I see you as brave and an inspiration and hope it is some how cathartic for you.

    Namaste

    * Sorry I haven't replied earlier
    ** the first part of my post is a quote from karuna that I Somehow messed up
    Last edited by Hugor Hill; 1 Week Ago at 07:05 AM.
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  15. #175
    I had an emotionally healing visit seeing my nephews, scattering some of David’s ashes at sea and had a small beautiful service which David wanted, and a burial in a grave my nephews bought next to theirs. They did not want to bury him in a grave next to my sister.

    The Rabbi was caring for feelings and traditions and about how David didn’t get the burial in the plot he had planned. He understood the pain and anger my nephews are feeling and we spoke about healing through love and understanding of everyone’s pain. It will take time as they work through what was intentional disregard for their fathers religion and wishes. But, we managed to keep a safe social distance, wore masks and the Rabbi sang, but he was at a distance. Except I needed to hug them and they needed to hug me and my husband. Worth the risk.

    My husband promised them to remain in close contact and after I die, he will visit, if it is healthy for everyone. I am so happy I had a loving nudge to do take this trip and how to do it safely.

    I had some medication that helped me with the cabin pressure and I lived through it. I have been tired, maybe that’s longing for what was and some concern, no, not concern- not wanting life to end just yet. You know, through it all I have grown in many ways. I appreciate my body and thank it for being strong.

    Oddly, I my husband and I can get tested for covid without symptoms, I think it has to do with protecting the clinic and
    hospital staff- my husband cannot accompany me on any visit. He sits in the car reading and waiting to receive a text update or questions and he is ready to make a decision. I will have scans this week if I am covid negative. I’m not sure why because it doesn’t matter if I have disease progression. Information perhaps. I feel I am more prepared to die yet the longer I live the longer I want to. Crazy.

    I hope you are well and I will get caught up soon.

    Oh, I now know a healthy 14 year old boy who is in the hospital with covid, and I found out a niece, we don’t have a lot of contact with, has covid and has to self quarantine in their home with children. Yikes. She’s in her early 40’s and all is looking good. It indeed is affecting every age, the healthy, mildly unhealthy and aging unhealthy as well as healthy older adults.

    Thank you for your support it has given me a positive attitude and strength. Thank you.
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  16. #176
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    He @karuna, so nice to hear from you. Your posts are always so caring, thoughtful and honest that I really look forward to reading them. It sounds like not much has changed with you of late, but I am sorry to hear about your niece.

    You mention you feel more prepared to die, but that the longer you live, the longer you want to. This makes sense to me. I've usually felt okay about dying myself but I just don't want to stop living yet. I think your thoughts are so important and I love that you share them with us. Please never stop doing that because I don't think we will ever grow tired of hearing from you. I hope you are able to enjoy some of the summer weather while staying safe. Peace.
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  17. @karuna, i'm happy you made a successful trip, albeit for the saddest reason. it sounds like you were very careful with social distancing. once they force schools to open, i imagine the infection rate will take off.
    you sound good. please take care!
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