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

  1. #121
    Information on Palliative Care

    Posted by @Ellyn on this thread.
    I encourage all to read about Palliative care and consider if you meet the criteria. It’s been invaluable. I feel many members would benefit.

    @karuna, ...The main other thing I'd suggest right now is, insist on a consultation with a palliative care specialist and get palliative care early. Palliative care is NOT hospice and does NOT mean you're not pursuing treatment, it just means that you also deal aggressively with pain and other symptoms that affect quality of life. There are some fairly recent studies indicating that patients who have palliative care very early maintain a better quality of life and, in many instances, have more success in treating the disease itself.

    https://getpalliativecare.org/whatis/

    https://www.cancer.gov/about-cancer/...are-fact-sheet

    https://www.mayoclinic.org/tests-pro...t/pac-20384637

    https://www.emmisolutions.com/resour...-am-not-dying/
    @karuna - here are a few links to web pages about palliative care. Read through them when you have some time and energy to do so, and think about printing some of the information to share with your medical team. You CAN and SHOULD have this type of care alongside your cancer care - it helps and should begin as early as possible. Blessings to you.
    Last edited by karuna; 02-15-2020 at 07:49 PM.
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  2. #122
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    Bawston has a reputation beyond repute
    @karuna...it sounds like you’ve got a wonderful support team surrounding you, including your husband. I’m sorry that you are having to deal with pain. I think you are really inspiring so many of us here and also making us think about our individual circumstances. We all deal with situations in our own unique ways and try to find the balance and meaning in our lives. I love your frank discussions about your journey that not many would be willing to share. Thank you because this is a gift to us.
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  3. #123
    @Bawston I do have a good support team through palliative care and my husband who loves me and enjoys helping.

    I had surgery Monday and got home today. I had burr hole surgery, like I need more holes in my head LOL, but it was successful in relieving the intense pressure. Meh, part of my process of letting go.

    My pain management is OTC Tylenol. LOL. I have two new holes in my skull and Tylenol will control the discomfort I have. OK. I will see how that goes. Maybe it will, if I believe it will. Who knows.
    And so the journey goes...
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  4. #124
    @Bawston, @Ellyn.
    Thank you. With every passing month, additional surgeries and healing, I’m learning letting go is harder than I thought and it’s becoming harder, as well, to let go while alert— not heavily medicated. I will have to try to accept the inevitable ...and all that means.

    I don’t know how everyone on this forum, with their own pain, copes and functions. It’s sad and inspiring at the same time.

    Living can be rough, but the support I receive from so many is a heart warming feeling and inspiring. Namaste

    The OTC Tylenol that was suggested I take as pain management is not working— no big surprise is it!? I left a message with the surgeon’s answering service for some medication that will be more effective. The pain is quite strong and physically draining.

    I know we all struggle with something and everyone is an inspiration and a learning experience and helpful.
    Be well
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  5. #125
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    Quote Originally Posted by karuna View Post
    @Bawston, @Ellyn.
    Thank you. With every passing month, additional surgeries and healing, I’m learning letting go is harder than I thought and it’s becoming harder, as well, to let go while alert— not heavily medicated. I will have to try to accept the inevitable ...and all that means.

    I don’t know how everyone on this forum, with their own pain, copes and functions. It’s sad and inspiring at the same time.

    Living can be rough, but the support I receive from so many is a heart warming feeling and inspiring. Namaste

    The OTC Tylenol that was suggested I take as pain management is not working— no big surprise is it!? I left a message with the surgeon’s answering service for some medication that will be more effective. The pain is quite strong and physically draining.

    I know we all struggle with something and everyone is an inspiration and a learning experience and helpful.
    Be well
    @karuna I sure hope you get something stronger. I just don’t understand why make a person suffer when they have the meds that can prevent or in the very least bring down pain levels. All the best and I really hope you feel better. You are a true inspiration and warrior.
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  6. @karuna What a beautiful post. Your attitude is amazing and you're handling it better then I would be. Love & Hugs to you
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  7. #127
    @north19 and @peppergirl
    Thank you for your kindness and support. I believe you may be stronger than you believe you are. My journey, albeit a pain in the head ;p is not any greater than your pain, struggle or whatever you must live with. We are all doing our best. If I can help you in anyway...
    Namaste

  8. #128
    @H20shed65, @Ellyn, @blueroan17, @Danie, @jaders, @notcharlotte, @calgall99, @Bawston, @Guillible, @Romanov, @Mecha, @jakemoe, @lizzy222, @sillypuppiez, @djrick, @songsiren, @peppergirl, @north19, @gitmein, @Mrs Parker, @songsiren

    I’m trying to find my way. I think there are several reasons I’m resisting and struggling with the dying part of my life --- I love my life. I feel I have people who need me, and I want to contribute more to them and the life I have. Most of these reasons are absurd because I think of what I used to do. My life and capabilities have changed, so my expectations need to as well.

    I don’t know if I’m reacting from fear. I think so. When I have unbearable head pressure/pain, I cave. I’m not letting dying take its natural course. I hope I will get to that point and when I do, I am able to make that decision for myself and not have it made for me.

    When I was released after the bore hole surgery to relieve pressure, I was prescribed OTC Tylenol and an antihistamine for anxiety. This was different than what I received after other surgeries.
    I finally had a talk with my team and let the team know what I needed and wanted, which is some pain relief and just give me a valium already ;p Remember the 70’s anyone? We carried them in our pockets like…I guess we did weed and papers. Alright not everyone did ;=)

    I recall feeling I’m asking for the sky and something must give. I was thinking my care team and I could not come to an understanding and I would have to give in. I now understand my kidney failure is also part of the equation as well as a higher risk for falling while taking more than one CNS drug. I’m accepting this new pain, to a point, as something I need to do. I asked if I signed away their responsibility, and I totally understood and accepted the risks, if they had a form I could sign? Well, that wouldn’t be what they would suggest. Look I can die when I stand up and so can they. Of course, my risk for falls will be higher, but I no longer care if I am slightly groggy some days. I will have a caregiver, my friend Mary, when I am alone or decide to take a walk. These conditions are also to calm my husband. Just reading his mind and body language.

    I know my body better, even with cancer and hematoma growing, than anyone else. I am, for now, able to make decisions and if I feel confused or my husband or Mary (the caregiver) observe I’m not thinking clearly, then the plan of care can change. Or, maybe I can let go and see where that takes me. We came to an agreement.

    Before this diagnosis began, I lived with pain and for some reason, head pain is difficult for me to cope with. It’s more intense than my migraines. I’m quietly thinking I can’t cope because I know a migraine just feels like it will kill me. The brain cancer and bleeds will kill me. I mean what more can I do about it. I can’t. Yes, I could have chemo and radiation. Now, that’s scary and would really give me something to complain about. Yikes.

    But, for now I can cope, and I will have enough time to help my family and contribute to my community as much as I can. I understand I can’t do this the same way. And, have some fun?

    I am making progress thinning out the house, so my husband will have more room. That was until he asked me what I was doing packing boxes? He laughed and joked and asked to see what I had packed and went through everything. Dang. He said “Cashmere! You’re donating your cashmere sweaters?!!!” “Yes I am. They won’t fit you. I responded.” He said “Books? You’re finally giving away your books?!” “Yes, yes I am.” He finally laughed and asked me if I was ready to "pack up", because he likes having me around. Sigh. I like being around him too.

    For all of you who are going through whatever pain, sorrow, anxiety, feeling overwhelmed or have a helpless feeling, please know I think I might understand better now, and I am here if I can help.

    I often sit in the Neurology waiting room area, I look around and people watch, trying to gauge how it is they are laughing, and yet understanding why some look pale, fragile and alone when we surround each other. They are patients who have similar experiences. There was a very elderly man and he was hunched over in a wheelchair, looking down at his coat sleeve, pulling at and tucking in a loose thread. I didn’t understand why he was doing that, but it reminded me of my mother, pulling on her clothing as she digressed from Alzheimer’s disease. I went over to him, sat down and asked if he would like anything to drink, or a snack. He wanted some juice. I gave it to him and helped steady his shaking hand and take a sip. I asked if he had an appointment and he said no, his wife did. I wanted to hug him! OMG, just shut me up if I ever complain!

  9. #129
    @H20shed65, @Ellyn, @blueroan17, @Danie, @jaders, @notcharlotte, @calgall99, @Bawston, @Guillible, @Romanov, @Mecha, @jakemoe, @lizzy222, @sillypuppiez, @djrick, @songsiren, @peppergirl, @north19, @gitmein, @Mrs Parker, @songsiren


    ***Typed by my caregiver***

    I’ve been declining for the last week or so and I am not doing well. I don't have the flu. I don’t know every reason why these changes have happened; however, I will persist.

    Despite the added pain, weakness, blurred vision, loss of balance, difficulty walking, weight loss, bloated abdomen, low-grade fever and chills, I will persist.

    I’m having many symptoms I have no control over. But, all of you, in this community, have felt something similar and have had your own challenging struggles in your own lives. I know you understand it can be frustrating and exhausting. How do we do it?

    I’m at home receiving care and hope I can persist, right now it’s a little unnerving.

    If I can’t endure, send chocolate.

    Wash your hands, be well and don’t hoard toilet paper-- I haven’t shopped yet.
    Thank you for your support.

  10. #130
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    Would you like some vodka with that chocolate? The toilet paper thing has calmed down from what I've heard. I hope your symptoms stop declining and you regain what little control you did have. It's very cool to hear from you today.
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    F**k the DEA

  11. @karuna, i wish you peace and freedom from pain. you are inspiring. please feel better.
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  12. #132
    Quote Originally Posted by jakemoe View Post
    Would you like some vodka with that chocolate?
    ofursur ;-D. Yes. Thank you! How thoughtful ;=)

    Even feeling I have some control would be welcome. Maybe I just need to adjust my perspective?

    Thank you
    Last edited by karuna; 3 Weeks Ago at 09:04 PM.
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  13. #133
    @notcharlotte

    Thank you. Your are so kind. I wish pain free days for you too.
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  14. #134
    Sending love to you. Your husband can do the shopping - as far as I know there hasn't yet been a run on chocolate. And chocolate is WELL known for its soothing properties. Enjoy as much as you please! We all wish you whatever you need to be pain-free (or at least pain-managed) and soothed)
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  15. @karuna You're such a sweetheart and you're trying so hard to be so strong. You deserve a hug.

    Sending -a-hugHug across miles 1 smallest.jpg

  16. #136
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    Wishing so badly you feel better. You seem like a warrior and great person and I wish you the best. Hopefully, your pain is being controlled-I know there is a lot more to this than just physical pain but that be controlled, from my experiences would help a lot.

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