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Reply by CarolynMarie
25 Mar 2012, 1:56 PM

Dear Jimmie, 
Thank you for your lovely, warm and beautifully comforting response to my post!  I am deeply touched by your kindness and sensitivity, and appreciate your TLC so much!  You are an amazing person!  I am so grateful for all of you here who have touched me deeply with your understanding, and gentle yet powerful words of comfort!  

I was away in Mexico with my family during the March Break last week and after coming home on Monday, March 19, I felt that things were spinning out of control at home - just feeling overwhelmed and tense, etc. but all the while, I have been thinking of you and also praying for you - ever since I read your breautiful response!  I really appreciate you reaching out to me to offer your kindness and support.  I have been wanting to have the opportunity to respond properly ever since you wrote!  

Cath1, thank you too for your lovely response to Jimmie about my post too!  You are so beautiful! You both are gifted in the healing arts!  Well said, Cath.  

Jim, you sure have more than the lion's share to cope with.  I'm happy for now, that ypur cancer is in remission.  Although, you sure have paid more than your "price of admission"!  Thank you for writing to me as if we are in the same hospital ward.  I like that.  

I'm sorry your feel anger, but if it was my loved ones, children or husband who were going through this instead of me, I think anger might consume me too.  In my situation, I simply choose to affect what I can affect and I try to let go of things that I can't control anyway.  Sometimes that is easier said than done though.

How do you cope with not daring to look into the future too far?  

Well , my 2 kids are here on the bed with me chatting so I will sign off for now.  I wanted to be sure I expressed my gratitude to you for your kind and lovely offer of friendship!  Take care!
lots of love,
CarolynMarie
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Reply by Tian
02 Apr 2012, 4:14 PM

To all who have posted here, Jim in particular
 
I have not personally been involved in a situation similar to any related here. I am awed by the courage and wisdom of those who have posted here. Carolyn Marie and Jim - you can use all the help you can get but it seems that you are coping better than you think. Jim, you have every right to be angry but it need not cripple your spirit. Your reference to the price of admission, especially because of the genetic element in your situation, makes me think of the price of admission to life. You have paid a high price and received a front row seat to quite a show. And with that you have seen the lows but also you have received a view of all the highs that many of us have been too far from the stage to appreciate. I think you are a wiser and better person than you give yourself credit for. Meanwhile the show goes on. The lows will come into sharper focus but so may the highs.

 Tian
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Reply by Jimmie
02 Apr 2012, 10:25 PM

Carolyn:

Thanks for your note, Tian, and for your words of support and encouragement.

Carolyn, when you wrote last you were just back from Mexico and you mentioned you felt things were 'spinning out of control" and you were feeling "overwhelmed and tense". Sounds like a pretty challenging time. I have been thinking about you lately and wondering how things are going.

If you feel like it and have the energy, perhaps you could send a few words this way and let me know how you are.  If you don't have that energy, and writing feels like too much of a chore, that's no problem.  I just want you to know that I am thinking about you, and care about you.  Funny thing to say to a stranger, I know; but it's true.

Jim 
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Reply by CarolynMarie
02 Apr 2012, 11:05 PM

Hi Tian.
Thanks for your post too!  Thank you for saying that we seem to be coping well!  I like that I give that impression.  :)  Good!  

I always say, (one of my many useful little philosophies about life) that "Life is not a dress rehearsal."  You really seem to grasp and live life with this philosophy too!  

Yes, there is one thing about having to face death, etc. earlier that one might expect, is that it really gets your priorities straight!  

Thanks for your post and keep in touch when you can!  Thank you for your kind words of encouragement.  Take care! 

CarolynMarie 
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Reply by CarolynMarie
03 Apr 2012, 1:13 AM

Hi Jim,
I see my post in response to your lovely words did not show up!  Oh no, don't you just hate it when you pour your heart into words on a screen and with a sudden whim or click of a button, those words just never get to travel to the person they were written for.  I guess that is what happened.  I'm sorry.  Jim, I wrote to you earlier this evening, just after I saw your newest post, actually, as I was onlline then.  I will try to remember waht I said earlier and repost it.

If someone told me that I would feel comforted and supported from a voice on a page, of someone I have never met, I would have been skeptical, but now I realise how it means so much to feel the caring spirit of the human voice, as we have here in Virtual Hospice!  Jim, I am so grateful for your thoguhts!  I have been thinking of you as well and I hope things are as good as can be expected on your end!  It must be so difficult being the caregiver and also fighting your own battle!  I have the luxury (if I dare call it that!) of being on the receiving end of care.  This is a role I am far less comfortable with.  I am usually the one comforting others, so I guess it is good because this enables us to give comfort to others, even though the loved ones around us see us always as the one being in need of comforting.  

Yes, last week I felt completely discombobulated.  Last week, I was not sleeping well and my pain returned.  Because my BC has metastised to my bones - left hip, femur, tibia, scarum, spine, etc. that is usually where I feel the pain, when it comes.  Last week the steroids were waking me up and my body waws exhaused beyond belief but I could not settle down.  Also, I feel more in sync with things this week.  I've been back on chemo daily, from a week ago and the pain is finally subsiding, due to the fact that I am now on about triple my morphine, so that helps a lot!  Today I feel so much better.  I walked my dogs about 2kms today in the glorious sunshine and it was Heaven!  I haven't been able to walk them at all in over 3 weeks, so it felt really great!  Today I have energy too and that feels so good.  I can almost trick myself in believing that I don't even have cancer!  Almost!  Oops time for me chemo now... back to reality!  I even sat down to do some editing on the final draft of my book earlier tonight!  I haven't gotten around to putting anything into that for a long time too!  I hope I don't crash tomorrow because I have so much great energy today.  Oh well, if I do, I do!  

Thanks for all your kindness and support everyone here.  Jim, thanks for reaching out, taking a chance and caring!  Keep in touch and let me know how you are doing, when you can!  Take care!
Hugs & love,
CarolynMarie :)
 
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Reply by CarolynMarie
03 Apr 2012, 2:13 AM

Hi Jim,
I see my post in response to your lovely words did not show up!  Oh no, don't you just hate it when you pour your heart into words on a screen and with a sudden whim or click of a button, those words just never get to travel to the person they were written for.  I guess that is what happened.  I'm sorry.  Jim, I wrote to you earlier this evening, just after I saw your newest post, actually, as I was onlline then.  I will try to remember waht I said earlier and repost it.

If someone told me that I would feel comforted and supported from a voice on a page, of someone I have never met, I would have been skeptical, but now I realise how it means so much to feel the caring spirit of the human voice, as we have here in Virtual Hospice!  Jim, I am so grateful for your thoguhts!  I have been thinking of you as well and I hope things are as good as can be expected on your end!  It must be so difficult being the caregiver and also fighting your own battle!  I have the luxury (if I dare call it that!) of being on the receiving end of care.  This is a role I am far less comfortable with.  I am usually the one comforting others, so I guess it is good because this enables us to give comfort to others, even though the loved ones around us see us always as the one being in need of comforting.  

Yes, last week I felt completely discombobulated.  Last week, I was not sleeping well and my pain returned.  Because my BC has metastised to my bones - left hip, femur, tibia, scarum, spine, etc. that is usually where I feel the pain, when it comes.  Last week the steroids were waking me up and my body waws exhaused beyond belief but I could not settle down.  Also, I feel more in sync with things this week.  I've been back on chemo daily, from a week ago and the pain is finally subsiding, due to the fact that I am now on about triple my morphine, so that helps a lot!  Today I feel so much better.  I walked my dogs about 2kms today in the glorious sunshine and it was Heaven!  I haven't been able to walk them at all in over 3 weeks, so it felt really great!  Today I have energy too and that feels so good.  I can almost trick myself in believing that I don't even have cancer!  Almost!  Oops time for me chemo now... back to reality!  I even sat down to do some editing on the final draft of my book earlier tonight!  I haven't gotten around to putting anything into that for a long time too!  I hope I don't crash tomorrow because I have so much great energy today.  Oh well, if I do, I do!  

Thanks for all your kindness and support everyone here.  Jim, thanks for reaching out, taking a chance and caring!  Keep in touch and let me know how you are doing, when you can!  Take care!
Hugs & love,
CarolynMarie :)
 
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Reply by Jimmie
03 Apr 2012, 12:20 PM

Carolyn:

Thanks for your response.  The details you provided gave me a deeper understanding of your day to day struggles and a deeper appreciation of the strength of your spirit.  You are a remarkable woman and I hope you understand that.  Actually "remarkable" is far too mundane and weak a word to describe you.

I did not know you were writing, or have written a book. I would really like to hear more about your writing.  If we were together in that imaginary ward I spoke about earlier, I'm afraid I would exhaust you with questions.  Fortunately for you, given this medium of conversation, you can filter my enthusiasm or simply, but firmly, tell me to please stop pestering you. Having said that, I am honestly very excited by this revelation and would love to hear more about both the content of the your book and the process of writing it.

I feel like a cocker spaniel that's caught sight of a treat tantalizingly out of  reach in someone's hand - my tail is wagging, my eyes are pleading (in a word - it's called "begging"). I'll pretend to be more reserved for the sake of appearances, Carolyn, and to preserve a modicum of self-dignity; however, if you get a chance and feel so inclined, you'd be doing me a great favour if you'd allow me to "listen" to you talk about your writing.

In the meantime, enjoy the dogs, the sunlight (nothing as lovely and numinous as a slant of sunlight on a wooden floor), and your family.  In other words, indulge yourself when and however you can.

Take care, m'dear (I know I've broken the bounds of propriety with that familiar East Coast term of address, but after all, we've known each other for three emails now so I hope you'll be able to forgive my boldness.

I hope this day brings some comfort and supportive companionship to you.

Jim
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Reply by Tian
03 Apr 2012, 3:29 PM

CarolynMarie - My admiration for you is becoming boundless. You are reminding me of Randy Pausch. (For those who may be scratching their heads, google "The Last Lecture".) Though I think you are coping well, that is still a relative statement and I know you face a constant struggle on many fronts. I am incapable of contributing to the wonderful advice you have received here. I just want to add, continuing the metaphor from my previous post, none of the actors who have previously played your role can advise you how to play the final scene but so far you have been nothing short of inspirational.
 

Jim - I cannot imagine how difficult life is for you at the moment. I am wondering how the situations of your wife and children are impacting you. When did and your wife learn about her genetic condition? Before you were married? Before or after you had children? I have heard about Huntington's families and the immense pressure they are under. Are you in a comparable situation and with your own illness to deal with on top of all that? I sense that you are under a terrible burden but if you don't want to talk about it it's understandable.
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Reply by Tian
03 Apr 2012, 3:50 PM

Correction to previous post

When did YOU and your wife learn about her genetic condition?
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Reply by Cath1
03 Apr 2012, 3:51 PM

Good morning, CarolynMarie and Jim:

It is for many of us very difficult to be thrust into the position of receiving care from others, especially when we see ourselves as independent by nature and worse when we feel we have no choice but to accept it. It may be a humbling and awkward experience at times no matter which end we find ourselves on as the one giving or accepting support.

I just want to say for whatever it's worth, that I have been on both the giving and receiving end of care at various times of my life, and I always found it harder to be on the receiving end. Why, I wonder, do so many of us struggle with accepting help from others when we all know how rewarding it is to give of ourselves to others? Sometimes I have felt guilty for not having fully appreciated the giver's help as if I somehow had a responsibility to ensure them the pleasure we all receive from the act of giving. Expressing gratitude for each act of kindness is so important I feel, and yet I feel it is also important that one should never give in order to receive gratitude or any other reward. Giving must come straight from the heart to be trusted and any strings of attachment must be cut.

I have thought a lot about this and it seems most people prefer to give than to receive, yet in my experience there is little distinction between giving and receiving as they go together. Both giving and receiving are invaluable and virtuous. When the motive for offering help and understanding is pure and guided by a genuinely unselfish desire to be of service to another, it is a glorious gift. Giving is in my view receiving. I remind myself of that view often as it keeps me grounded and attuned to the fact that both are essential qualities of any relationship.

The times I have found it particularly hard to allow others to care for and about me have been when I have sensed that there was an imbalance of power or an ulterior motive on the part of the giver. Giving must not carry with it a price and the receiver must not be expected to pay one. Have you ever felt, in a vulnerable moment, sensitive about accepting help from others whom you feel may not be offering their help to you without strings attached? Do you feel indebted to those whom help you? Do you feel imposed upon at times by helpers?

Personally, I have an aversion to the notion of "do-gooders", those whom insinuate themselves into one's painful experience without any respect for one's privacy or dignity and expect by doing so to be fulfilled at the expense of another. Have you ever felt exploited or put upon by others whose motives are questionable?

Maybe I have lessons to learn around pride, and perhaps I am overly sensitive to the intrusions by givers to reluctant receivers, as in cases where my Mom had so many well-meaning helpers feel put out and offended when she chose not to accept their involvement. I always felt a responsibility to protect my Mom from prying eyes and wagging tongues and therefore in those times when she was hospitalized due a mental health crisis I respected her right to be cared for by professionals and rightly excluded her family from visits until she was stronger and felt more like herself and able to deal with their insensitive attitudes. These decisions were viewed as personal rejections by those willing and wanting to help, but the kind of help my Mom needed was to be left alone to heal without having the additional burden of embarrassment for being seen at her self-perceived worst in the eyes of those she loved best while she recovered. Every act of giving must make the effort to consider first the actual needs of the person before deciding that another knows best what someone else needs. Sometimes the best thing we can give is space.

I feel grateful for those who give willingly, lovingly and selflessly of their time, care and concern, but I think no matter which end we are one we must always strive to consider the other's feelings and respect them. Communicating honestly our wishes and feelings helps define the relationship between giver and receiver and the acknowledgement that we will all at some point - many points - of our lives be both.

Thinking of you both today and sending you positive thoughts and support your way.

Cath  

PS CarolynMarie: I wrote to you in your thread Your legacy ~ What to leave behind for your loved ones? I posted it the day we had technical difficulties on the forum and I just want to ensure that you know I responded to you and welcomed you home!:-)

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