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    Hi everyone! I love reading this thread! I have...

    Hi everyone!
    I love reading this thread! I have read lots of the books recommended but lots are new to me too! I wanted to let you know (especially old friends from CN and CN2) that I have a new...
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    My dear Rose, I am so glad that you both came...

    My dear Rose,
    I am so glad that you both came through the 1st round of quakes fine, but how are you after yesterday's? I was trying to figure out from the news what you might have been feeling with...
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    My dear Rose, I am sorry that I've been remiss...

    My dear Rose,
    I am sorry that I've been remiss lately at keeping my letter writing! I have been reading your messages though and I'm very happy to hear that Jim is doing so well. All because of...
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    Hi Rose, I am so glad to hear of Jim's...

    Hi Rose,
    I am so glad to hear of Jim's continuing progression. I wish he had more energy for bathing and shaving though. I wonder if a bit of 02 to get him upstairs might help even if he thinks he...
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    Oh, dear Rose. We want to hear it all!!!! Your...

    Oh, dear Rose. We want to hear it all!!!! Your small and big worries are our worries too. I wonder if a disability studies department at a university would be interested in your advocacy paperwork. I...
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    Oh, Rose - thank you for this update on John,...

    Oh, Rose - thank you for this update on John, you, Jim and everyone in your extended family. As always, your description of your conversations play like a movie in my head. I can so easily put myself...
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    Dear Rose, I am thinking of you and Jim today -...

    Dear Rose,
    I am thinking of you and Jim today - it must be so painful to have this first Father's Day without Jon and of course without Michael. Jim is doing his best and he is being absolutely...
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    Oh. Oh. Oh. I am so glad that you expressed your...

    Oh. Oh. Oh. I am so glad that you expressed your feelings to each other. I am so glad that you shared your experiences of Jon's last hours and of how you both feel now. I am so glad. Because you have...
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    Dear Rose, when is the appointment with Dr K? I...

    Dear Rose, when is the appointment with Dr K? I want to put it in my calendar and say special prayers that day.
    Donna
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    My dear Rose, Virginia has been eloquent - she...

    My dear Rose, Virginia has been eloquent - she has said what is in my heart. Thank you, Virginia!
    Your message about your neighourhood reminded me of a powerful memory, Rose. In 1987, we bought our...
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    Rose, I am so glad to hear that you are doing...

    Rose, I am so glad to hear that you are doing your morning walks. I remember you saying recently that you aren't able to walk as long or as far as you used to, but getting outside, breathing fresh...
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    Rose, your words ring so true for me. For years I...

    Rose, your words ring so true for me. For years I have visualized Nick's funeral - I have thought about how I would feel (but that was so hard to imagine), what I would wear (I would want to be so...
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    Oh Rose. I am so glad to read this today. A bit...

    Oh Rose. I am so glad to read this today. A bit of hope. A bit of stability and good test results. I am in Milwaukee with Jim visiting Natalie and today we went to UW Madison where Natalie will begin...
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    Dear Rose, I think the numbness is a...

    Dear Rose,
    I think the numbness is a self-protective response and also one that comes from absolute necessity. Sometimes numbness can become a habit (I speak from experience) and this is hard to...
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    Dear Rose, And whenever you are ready just let...

    Dear Rose,
    And whenever you are ready just let me know and I will come and help. (I am writing here because I think you look here, to CN, for support before you look at emails).
    Dearest Rose, my...
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    Rose? How are you doing? How is Jim? Thinking of...

    Rose? How are you doing? How is Jim? Thinking of you. xox Donna
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    My dear Rose, I am thinking of you today. This...

    My dear Rose,
    I am thinking of you today. This morning when all the world is saying "Happy Mother's Day." I will say it to you because you are and always will be the most amazing mother - you...
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    This is great news that Jim is stable and that is...

    This is great news that Jim is stable and that is all because of you, Rose. The bathing setup sounds great! I sure hope that you are able to find an intercom system that works. Thinking of you on...
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    Ahhhh Rose, my heart breaks for you. I surround...

    Ahhhh Rose, my heart breaks for you. I surround you in my love and I send you my energy just to keep going. I cannot imagine how hollow, sad, worried, exhausted you must feel. I am imagining your...
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    My dear Rose, I have said this before, but...

    My dear Rose,
    I have said this before, but reading your posts is like a movie playing in my head. I can see you robotically cleaning, pushing down the grief, concentrating hard on your hands and...
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    Rose, Bathing Jim on the toilet is a great...

    Rose,
    Bathing Jim on the toilet is a great idea! You are so right that the warm water will stay warm and it won't be so much bending for you. If you are washing Jim's legs and feet, maybe a pillow...
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    5213Daisy watched and loved it too! She barked at...

    5213Daisy watched and loved it too! She barked at WinWinWin!
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    Oh Rose, What a sad, final trio of documents....

    Oh Rose,
    What a sad, final trio of documents. The end of Jon's mortal life. But he will go on and on in your heart and in Jim's. He will go on and forever be remember by so many here and by your...
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    Hi Rose, It is very worrying that Jim's WBC and...

    Hi Rose,
    It is very worrying that Jim's WBC and platelets are down again. Of course you are absolutely right about the best course of treatment - day visit to the hospital and never again to the...
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    Oh Rose, your words "It is as though grieving is...

    Oh Rose, your words "It is as though grieving is a luxury for me." Those words are so true but so much at the heart of your situation right now. And yet grieving is as natural and necessary as...
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    Good for you, Rose!!!!!!!!!!! You have EXACTLY...

    Good for you, Rose!!!!!!!!!!! You have EXACTLY the right approach and you are RIGHT about everything. Your objectives and strategy are so sensible and so... right for you and Jim. Also based on...
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    @Funnylegs4 Absolutely, you right of course! If...

    @Funnylegs4 Absolutely, you right of course! If radiation is off the table then it might be worth exploring.
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    Dear Rose, You have never nursed Jim (or...

    Dear Rose,
    You have never nursed Jim (or anyone) through cancer before, so it sounds like such a terrible thing to try to judge new symptoms and not know whether to call 911, try treatments at home...
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    Oh dear, Rose. I am so sorry that Jim is so...

    Oh dear, Rose. I am so sorry that Jim is so unstable. Maybe the blood results will give some idea of what's happening as Nancy said. It is so distressing to witness such suffering of someone you so...
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    Dearest Rose, I can tell how exhausted you are...

    Dearest Rose,
    I can tell how exhausted you are in your words - you are still so eloquent, but I sense your 'beyond the pale' exhaustion through your words. I can't even imagine how emotionally...
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    What a WONDERFUL idea for a living memorial,...

    What a WONDERFUL idea for a living memorial, Rose! This is just beautiful. Thank you for sharing!
    xoxo Donna
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    Hi dear Rose, I am glad Jim is peeing - but...

    Hi dear Rose,
    I am glad Jim is peeing - but maybe a little moderation would be appreciated as Suze-Q said. Fluid balance is so tricky as you know too well from Jon. But each person is different and...
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    Lauren (from Leeds in the UK) sent this to you on...

    Lauren (from Leeds in the UK) sent this to you on facebook, Rose. For Jon. She can't access her account here anymore. 5202
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    My dear Rose, I have no idea whether this is...

    My dear Rose,
    I have no idea whether this is possible but what I thought of is this: would it be possible to set aside 15 minutes each day to meditate on Jonathan with the following words? "I love...
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    Hi Rose, I've been checking all day to see how...

    Hi Rose, I've been checking all day to see how you are doing - are you OK? Jim is home? I am thinking of you and praying - I hope it's better at home! Love you,
    Donna xoxo
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    Oh Rose. I am sorry that NOTHING is made easier...

    Oh Rose. I am sorry that NOTHING is made easier for you and Jim. I wish that nurses and the systems in care could listen to your wishes and that they would apply their strictest protocols for a...
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    Hi Rose, How are you doing today? I hope Jim is...

    Hi Rose,
    How are you doing today? I hope Jim is able to get some sleep in the hospital - he is exhausted and needs his sleep, as you say. You need rest too. I'm glad that the menu for Jim is better...
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    My dear Rose, You absolutely did the right...

    My dear Rose,
    You absolutely did the right thing bringing Jim in to the hospital. I'm so glad that he is receiving IV fluids, having his abdomen drained and getting antibiotics. He'll feel a lot...
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    Hi Rose, Funnylegs4 has a great idea of how to...

    Hi Rose,
    Funnylegs4 has a great idea of how to include Jim in Jon's memorial service. One of the young ones from John's family (maybe his daughter?) could be Jim's friend/guide at the service using...
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    My dear Rose, how are you doing? How is Jim? I...

    My dear Rose, how are you doing? How is Jim?
    I read something today from my friend Brad who is gay and is a playwright. He has just finished writing his memoirs. I wonder if maybe this resonates...
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    My dear Rose and Jim, Here are more messages...

    My dear Rose and Jim,
    Here are more messages from the Facebook CN group:


    Lauren Fordham
    Lauren Fordham So sad to hear this. I too have not been able to log in for a long time. I did not...
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    Messages of condolence from the CN facebook...

    Messages of condolence from the CN facebook group:

    Marcie Stark Siciliano
    5 hrs
    I know many of us started on Braintalk in child neurology. I wanted to share that Earth Mother 2 Angels (Rose) her...
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    My dear, dear Rose and Jim. I have been crying...

    My dear, dear Rose and Jim.
    I have been crying all day. And reading all the years of archived messages about your Jon... and Michael... and our friendship and our motherhood. Oh Rose, my heart...
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    Oh dear, I can't stand that your beloved Jim and...

    Oh dear, I can't stand that your beloved Jim and Jon are both suffering with constipation right now. This is serious, I know. We use Golytely gastro flush with Nick - is this an option for either one...
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    Dear Rose, Ahhhh, again I am happy for small...

    Dear Rose,
    Ahhhh, again I am happy for small mercies in your message (thank you SO MUCH for keeping us up to date on all your family!!!) - I am grateful that Jim is eating well and that he got some...
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    Hi Rose, I am so relieved that Dr. K finally...

    Hi Rose,
    I am so relieved that Dr. K finally saw Jim and that you got speak to him as well. He listened. He was empathic and responsive. He changed course according to Jim's pre-conditions and his...
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    Oh Rose, this is just terrible - what a...

    Oh Rose, this is just terrible - what a nightmare. I'm so so sorry for Jim and for you. Of course it is the antibiotics that caused these side effects. The one good bit of news is that Jim's white...
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    Hi Rose, I'm relieved that Jim is feeling...

    Hi Rose,
    I'm relieved that Jim is feeling relaxed and that he's not coughing so much. He sounds better. I cringed when I read that you had to do taxes though - AND that there are so many phone...
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    My dear Rose, Remember our list of trueisms -...

    My dear Rose,
    Remember our list of trueisms - #1 is you know your loved one best - another is trust your gut instinct. You and Jim will make the best decision together. Whatever decision you make...
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    Dear Rose, Is it possible for you to call the...

    Dear Rose, Is it possible for you to call the nursing station and speak to the head nurse who can take your key messages to the doctor? The best checklists I've ever seen for Discharge planning are...
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    Dear Rose, I am glad that Jim is in the...

    Dear Rose,
    I am glad that Jim is in the hospital where he should be right now but my heart breaks for you. I have such a vivid image in my mind of you at the window waving to Jim - perhaps this is...
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    Hi Rose, thank you for your beautiful comment on...

    Hi Rose, thank you for your beautiful comment on my blog. I am so glad that younger caregivers will have the benefit of your wisdom. You are our wise elder.
    I know you are hanging on by a thread...
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    Oh Rose, Jim's cough is such a worry. Is there a...

    Oh Rose, Jim's cough is such a worry. Is there a way that you can borrow a phone and film it for the doctor? Anyone younger with a smart phone would be able to film and share (I'm not good at this...
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    Hi dear Rose, I can't remember the mattress...

    Hi dear Rose,
    I can't remember the mattress model but it has bolsters. The OT came today and made some changes to the settings. He also recommended that Nick sleep with the head of the bed raised...
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    He's still very nervous about eating orally and...

    He's still very nervous about eating orally and only just had a few teaspoons of ice cream. But I talk to him every day and encourage him. Tomorrow I have an appt at his place with the OT about his...
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    Dear Rose: Oh, how I wish I could be there to...

    Dear Rose:
    Oh, how I wish I could be there to drive Jim!!!! Is there anyone else in John's family who could step in? His wife or daughter if she's old enough to drive? Does John have a trusted...
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    Thank you! I'm going to blog about our list and...

    Thank you! I'm going to blog about our list and ask readers to share their essential truths, too. I will let you know how other caregivers reply! xox
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    Hi Rose, I am so glad that you got a good sleep...

    Hi Rose,
    I am so glad that you got a good sleep and a walk!!! That's awesome and I'm so glad you got at least a tiny bit of rest. Before I forget (I'll forget if I get writing about another...
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    Hi Rose, As always there are so many things in...

    Hi Rose,
    As always there are so many things in your post that I'm grateful for and so many that worry me and make me sad. I'll start with the good things - Jon slept. His sats were excellent. The...
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    Oh, I'm so glad to hear that Jim is feeling...

    Oh, I'm so glad to hear that Jim is feeling better and so is Jon. I pray that everyone continues to keep getting stronger and that you all get another good night's sleep tonight. So I understand that...
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    My dear Rose, You are right, all these years...

    My dear Rose,
    You are right, all these years you HAVE been writing a book here! And I am an avid reader - your words play like a movie in my mind. I see everything and I know your home as if it's...
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    Oh dear Rose, you always find the words to...

    Oh dear Rose, you always find the words to comfort me (and so many others)! Yes, everything you say is true. There are a few real truths in the path we walk eh? Let's try to name them. 1) Nothing...
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    Hi everyone, Nick is much better! He is home...

    Hi everyone,
    Nick is much better! He is home and even went to a movie this week. He still isn't eating by mouth yet, but we are consulting with his nurse about when soft foods could be started. I'm...
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    Oh, that is so so difficult about Jon's...

    Oh, that is so so difficult about Jon's restraints. I don't know what to say other than to reflect on what I would do in your place. I would place the restraints and perhaps give him some time with...
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    Oh Rose, what a day. I was praying for Jim and...

    Oh Rose, what a day. I was praying for Jim and for you and Jon this afternoon and then I opened my emails and found your message. I am responding here because I think it's easier for you. I am so...
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    Oh, thank you for the update Rose! I am so glad...

    Oh, thank you for the update Rose! I am so glad to know what's happening so I can visualize everything and pray for specific outcomes. I got mixed up about the trial run - I was thinking that Jim had...
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    Oh dear Rose, I echo funnylegs4's comments and...

    Oh dear Rose,
    I echo funnylegs4's comments and ideas - to 'try' one treatment. I know he has had one already and that it was awful. But that was before Jim started exercising. Perhaps the exercise...
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    Hi Rose, reading this makes me sad that you are...

    Hi Rose, reading this makes me sad that you are so so so tired. I cannot even imagine functioning on so little sleep. I remember doing it, but I was in tears all the time and constantly in car...
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    Oh, Rose. Oh, Rose. I wish I could be there to...

    Oh, Rose. Oh, Rose. I wish I could be there to rush over and give you a hug too. Of course you are where you need to be, doing what you need to do. And I am so glad that Jon is doing better. May it...
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    Hi Dear Friends! I am happy to report that we...

    Hi Dear Friends! I am happy to report that we brought Nick home from the hospital today. He was so happy to come home. His nurses were ready and we sat down for a long chat about getting back to our...
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    Rose, your idea of exercise to help Jim cope with...

    Rose, your idea of exercise to help Jim cope with the position for radiation is wonderful. I think it will work - at least it is bound to REALLY help. The aging out of the equipment in the radiation...
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    Thank you Mary Grace! He is on the mend now,...

    Thank you Mary Grace! He is on the mend now, thankfully. :) I hope you and Kathleen are well!
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    Hi Rose, yes - that is exactly what Nick has....

    Hi Rose, yes - that is exactly what Nick has. It's a combination of having had breathing tubes, being in bed and also always lying on his left side. This is his most comfortable position because of...
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    Thank you thank you thank you everyone. Nick was...

    Thank you thank you thank you everyone. Nick was discharged from ICU to the surgery ward this afternoon and wouldn't you know it, just on checking his vitals on admission to surgery, he had a fever -...
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    I am so glad you had your treat, Rose!!! Prayers...

    I am so glad you had your treat, Rose!!! Prayers for Jim and Jon as always. Every. Single. Day. xoxo
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