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Old 07-09-2018, 07:01 AM
  # 241 (permalink)  
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Though it is not your natural inclination, I think that you will need to focus on putting your wants and needs at the top of the priority list moving forward Kathy. You should not feel the slightest bit of guilt doing this!
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Old 07-09-2018, 11:00 AM
  # 242 (permalink)  
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Hi, Tang!

SG, I’ve just done that.

After having to scrap two appointments that were important to me to pencil in an event that I must attend but had forgotten, I am at the end of my rope.

From now on I give people one date. Take it or leave it!

I’m particularly exasperated right now.

But even when I cool off, I think I’m going to hold to that principle.

It’s honestly not that I feel so important that I think people should jump to my tune, but that this scheduling and rescheduling and total juggling of plans is driving me far more insane than the actual cancer!

I’ve got to draw the line—and I just have.

In a couple minutes I have an appointment with the hospice nurse. Looking forward to it!
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Old 07-09-2018, 12:59 PM
  # 243 (permalink)  
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I’ve mellowed.

If someone cannot accommodate the date I provide, I’ll tell them I’ll get back to them as soon as my schedule clears a little.

No more juggling—but no exasperation, either.
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Old 07-09-2018, 02:59 PM
  # 244 (permalink)  
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Originally Posted by Gilmer View Post
Thank you, Ann.

I may need the steel-toed bunny slippers sometime, too!
They're yours!! Feel free to use them on anyone who is difficult about agreeing to your available date!

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Old 07-09-2018, 04:58 PM
  # 245 (permalink)  
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The admissions nurse from the hospice service came to explain the program to me and assess my case.

My husband and I asked her all manner of pertinent questions, and she answered them fine.

She gave me a brief medical interview, and wrote lots of checkmarks on the chart that is going to be kept here at my house.

I looked it over before she left.

She had explained to me perfectly rationally the advancing levels of care they provide. It goes from weekly visits from a nurse and aides to round-the-clock shift nursing care to assistance if necessary in a nursing home.

As is my custom, I very cerebrally took it all in and nodded assent.

As I may have mentioned, I just happen to have been born pretty stoic with the whole medical process. I actually love being in the hospital. I get the Bucky Beaver Badge for being an exemplary patient for all the providers.

But when I saw the24-hour care checklist with my own eyes on paper, my heart stopped. The very basic care needs provided drove home images of my very dependent 90-y-o dad, who couldn’t even brush his own teeth.

I pride myself on my toughness and robustness, especially when I have an ailment.

I envisioned the progression of my cancer looked this: going about my business, growing gradually wearier and lying down more, than feeling pain in my stomach and back, and eventually lying suffering but valiant in bed, with all my faculties.

But today I saw the checklist—the checklist for me.

I instantly saw myself feeble, incoherent, and drooling in my bed, far beyond any sense of control.

I asked her, is it possible to be admitted to the hospital for care if I get bad?

I always feel like the emcee running the show in the hospital. It’s always been my milieu.

“Oh, no, When you qualify for hospice, you are at the point where you are no longer a candidate for aggressive treatment of your condition. Hospitals are for treatment, not for terminal patients.”

Wham.

I saw my own dissolution right before my eyes, and I had no clever boasts to stop it.
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Old 07-09-2018, 05:05 PM
  # 246 (permalink)  
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Oh, sweetheart. My heart aches for you.
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Old 07-09-2018, 05:08 PM
  # 247 (permalink)  
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All this stuff is brutal and raw, Gilly. I think it is positive that you are researching what is there/to do. And yes- WHAM! As you say- mellow and stoic to sudden pictures of 'what if's' in the future. All anyone can ever do- is try to prepare for such events and keep a firm grip on the here and now. There are not 'you should's' and grief effects all in different ways. You are absorbing a huge amount of info in a very short period of time and that can be exhausting...remember your HALTS stuff.
My empathy, support and prayers to you.
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Old 07-09-2018, 05:09 PM
  # 248 (permalink)  
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And something else major happened.

I have shared that my family is having a very tough time with the news. I empathize in my cerebral way, and reason that it will be very tough without me for quite awhile, but the Lord will bring them through as he always does.

But this evening my husband and I were watching GoT, and he sent me a one-line text that showed the absolutely devastating loneliness he is going to feel without me after 34 years together.

He wrote, “Everything I have is yours.”

That broke my heart in two.

There is nothing he can do, nobody he can talk to, nowhere he can go where he will not see me.

I wish I had been the one to survive him, because, unlike me, his heart is not made of stone.

Just so sad. So sad.

Back to a stiff upper lip with GoT.

Today was very important for me.

I’m crawling back inside my facade now—but for a second it humanized me.
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Old 07-09-2018, 05:14 PM
  # 249 (permalink)  
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Kathy,
You have all my love and prayers. I know this is not easy, by any means and my heart aches. Your grace, honesty and dignity are so moving and show how beautiful your spirit is.
God be with you. All my love, Aly ♥♥♥
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Old 07-09-2018, 05:18 PM
  # 250 (permalink)  
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No words, Gilly...many prayers.
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Old 07-09-2018, 05:34 PM
  # 251 (permalink)  
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Old 07-09-2018, 05:43 PM
  # 252 (permalink)  
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It's terrible to fathom the enormity of it all....and how much more it must be for you Kathy than it is for us

I can't understand His reasoning, but I find some comfort in the Word

Psalm 116:1-2
1 I love the LORD, for he heard my voice; he heard my cry for mercy. 2 Because he turned his ear to me, I will call on him as long as I live.

D
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Old 07-09-2018, 06:02 PM
  # 253 (permalink)  
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Shedding tears and sharing your pain, Kathy.
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Old 07-09-2018, 06:12 PM
  # 254 (permalink)  
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Thank you.
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Old 07-09-2018, 06:21 PM
  # 255 (permalink)  
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again, no words. just so much love to you and your husband.

always with you

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Old 07-09-2018, 07:49 PM
  # 256 (permalink)  
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dear Kathy,
you do not have the heart of stone you claim to have.
if you did, this would be far easier for you.

clearly, you and your husband chose wisely when you picked each other.

accepting the realities vs the imaginings of how it would be..i don't know about it first hand yet, only where others' deaths are concerned. so yes, no words.
but you are so bravely finding your way as the steps unfold...and that is a choice, no? some run, or hide, or pretend. you are living it and sharing and ...sorry, i am rambling.

Steven Levine has written a few books you or others might find of use, among them " Meetings at the Edge" and "Who Dies?"

and as you said before: you cannot give what you have not got. you didn't put it quite that way, though.

i keep hearing that word you used: dissolution.
is part of being stoic a fear of falling apart?

is it okay to ask you questions?
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Old 07-09-2018, 08:43 PM
  # 257 (permalink)  
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Sure. Questions are fine.

I’ll have to take some time to respond, though.

I see that I’m more at a loss than I’d thought.
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Old 07-09-2018, 08:56 PM
  # 258 (permalink)  
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Old 07-09-2018, 09:04 PM
  # 259 (permalink)  
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well yeah....how could you not be at more of a loss than you thought?
you have never done this before!
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Old 07-09-2018, 11:41 PM
  # 260 (permalink)  
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I'm so sorry to hear this Glimer. I read through this thread earlier and wanted to post but didn't know quite what to say, I still don't. Just wanted to send some love and let you know you'll be in my thoughts.
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