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» Ship of Fools   » Community discussion   » Hell   » Cancer SUCKS (Page 13)

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Source: (consider it) Thread: Cancer SUCKS
Stercus Tauri
Shipmate
# 16668

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quote:
Originally posted by mr cheesy:
From the link I posted above:

The 5-year Disease-Free Survival (DFS) rates were 84% for letrozole and 81.4% for tamoxifen.

There is some other information, but that seems to be the overall message.

What can you actually do with those numbers? After 5 years, will you be 84% alive? If 16 people out of 100 will be dead, how do you know which group you are in? You don't know, and I find this approach really unhelpful. The statistics are mainly useful to the medics for assessing the effectiveness of the drugs over a large population of cancer patients, but they are no damn use whatsoever to the individual other than in providing a very rough indication of risk. It can't be stated too often that each patient is an individual data point, and nobody can say, especially at an early stage, where we will make our final mark on the survival graph. I am sure the best advice is to live according to how you feel. If you feel well, live life to the full. If not feeling so well, proceed carefully but enjoy it anyway.

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Thay haif said. Quhat say thay, Lat thame say (George Keith, 5th Earl Marischal)

Posts: 891 | From: On the traditional lands of the Six Nations. | Registered: Sep 2011  |  IP: Logged
Rossweisse

High Church Valkyrie
# 2349

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I still like knowing the odds.

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I'm not dead yet.

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Lamb Chopped
Ship's kebab
# 5528

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Some of us are just like that. In my case, it's how I manage my anxiety about my sister. Though her odds are worse than those quoted.

I want to know as much as I can.

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Er, this is what I've been up to (book).
Oh, that you would rend the heavens and come down!

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Rossweisse

High Church Valkyrie
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quote:
Originally posted by Lamb Chopped:
...I want to know as much as I can.

So do I. Some of the women in my cancer support group would rather not; each to her own taste.

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I'm not dead yet.

Posts: 14757 | From: Valhalla | Registered: Feb 2002  |  IP: Logged
Lamb Chopped
Ship's kebab
# 5528

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My sister prefers not to. She delegated her research duties to me, trusting that I would let her know whatever was necessary (say, a specially targeted useful treatment for her variety of ovarian c). I also undertake not to talk odds and etc. with her.

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Er, this is what I've been up to (book).
Oh, that you would rend the heavens and come down!

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Lothlorien
Ship's Grandma
# 4927

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quote:
Originally posted by Rossweisse:
I'm sorry to hear that, Moo. (It affected a friend of mine so badly that she gave up on it after just a couple of months.) I'm hoping my Ibrance pills keep working for me, since tamoxifen is one of the possibilities my oncologist has mentioned if/when it stops.

My sister took tamoxifen for five years, the standard length down here, after the first mastectomy. Then it returned. More tamoxifen. Various newer drugs are bad for the heart condition she has and it has been discovered that that the breast cancer for her is a rare mutation which repsonds only to tamoxifen. Any time she has stopped the tamoxifen, there has been a return. Twenty years down the track she still takes it and will for the rest of her life.

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Buy a bale. Help our Aussie rural communities and farmers. Another great cause needing support The High Country Patrol.

Posts: 9519 | From: girt by sea | Registered: Aug 2003  |  IP: Logged
Rossweisse

High Church Valkyrie
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quote:
Originally posted by Lamb Chopped:
My sister prefers not to. She delegated her research duties to me...

She's lucky to have you.

Lothlorien, I'm sorry to hear it, but relieved that she does have the tamoxifen.

I have been amazed by some of the things I would have said, pre-cancer, that I could never handle - but which I just deal with now, almost seven years into my new normal. One's perspective does change.

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I'm not dead yet.

Posts: 14757 | From: Valhalla | Registered: Feb 2002  |  IP: Logged
Lothlorien
Ship's Grandma
# 4927

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She gets bad hot flushes from it. One particularly bad time is around 9:00 pm every night without fail. Better that than the alternative.

[ 05. October 2017, 21:33: Message edited by: Lothlorien ]

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Buy a bale. Help our Aussie rural communities and farmers. Another great cause needing support The High Country Patrol.

Posts: 9519 | From: girt by sea | Registered: Aug 2003  |  IP: Logged
Stercus Tauri
Shipmate
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quote:
Originally posted by Rossweisse:
quote:
Originally posted by Lamb Chopped:
...I want to know as much as I can.

So do I. Some of the women in my cancer support group would rather not; each to her own taste.
I'm not dead yet either, but the early odds were against me making it this far. Now what? I think I'll just carry on not being dead for a while longer, as I still have a couple of projects to finish.

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Thay haif said. Quhat say thay, Lat thame say (George Keith, 5th Earl Marischal)

Posts: 891 | From: On the traditional lands of the Six Nations. | Registered: Sep 2011  |  IP: Logged
Rossweisse

High Church Valkyrie
# 2349

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quote:
Originally posted by Stercus Tauri:
I'm not dead yet either, but the early odds were against me making it this far. Now what? I think I'll just carry on not being dead for a while longer, as I still have a couple of projects to finish.

I prayed to be allowed to live long enough to achieve certain things, chiefly seeing my Pater through, and watching my younger daughter get her B.A. - and now those are done.

So I booked a cruise on the Nile for early 2019. Something more to achieve!

--------------------
I'm not dead yet.

Posts: 14757 | From: Valhalla | Registered: Feb 2002  |  IP: Logged
Martin60
Shipmate
# 368

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God speed. What are you doing next year?

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Love wins

Posts: 17007 | From: Never Dobunni after all. Corieltauvi after all. Just moved to the capital. | Registered: Jun 2001  |  IP: Logged
Leorning Cniht
Shipmate
# 17564

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quote:
Originally posted by Stercus Tauri:
What can you actually do with those numbers? After 5 years, will you be 84% alive? If 16 people out of 100 will be dead, how do you know which group you are in? You don't know, and I find this approach really unhelpful.

This approach is what we know. It is the only honest thing to say.

We know that of patients who look like this, and receive this treatment, about 5/6 will be alive after five years, and 1/6 will be dead. We don't know how to predict which group a particular person is in. (Although this is probably knowable with science that we don't know yet.)

If it was me in that position, I'd be reading medical journals to be sure I understood all the details of the state of our knowledge (actually, first I'd go talk to a colleague who did exactly that a couple of years ago when his wife was diagnosed with breast cancer, and learn what he knows).

But in the big picture, it means someone in that position has a 1/6 chance of being dead in five years. The same odds as Russian roulette.

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SusanDoris

Incurable Optimist
# 12618

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mr cheesy

Thank you for your two further posts. Apologies for delay in responding - I have only just seen them. Even when I had breast cancer 30 years ago, the odds were improving and I was lucky enough to be on the good side that time!I hope I'll be lucky this time too!

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I know that you believe that you understood what you think I said, but I am not sure you realize that what you heard is not what I meant.

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SusanDoris

Incurable Optimist
# 12618

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quote:
Originally posted by Stercus Tauri:
I'm not dead yet either, but the early odds were against me making it this far. Now what? I think I'll just carry on not being dead for a while longer, as I still have a couple of projects to finish.

A very sensible philosophy! [Smile]

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I know that you believe that you understood what you think I said, but I am not sure you realize that what you heard is not what I meant.

Posts: 2947 | From: UK | Registered: May 2007  |  IP: Logged
Rossweisse

High Church Valkyrie
# 2349

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quote:
Originally posted by Martin60:
God speed. What are you doing next year?

So far, I'm going on a parish pilgrimage to Greece and Rome. I'm hoping to get back to London, too.

--------------------
I'm not dead yet.

Posts: 14757 | From: Valhalla | Registered: Feb 2002  |  IP: Logged
Uncle Pete

Loyaute me lie
# 10422

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quote:
Originally posted by Uncle Pete:
My cousin, Bill, one of the few close to me in age: diagnosed with myeloma.

How often can you say FUCK?

FUCK to the power of 100 is not enough

This post was in 2015. Bill is still here and has just celebrated his 70th birthday. He has, however, been diagnosed with bowel cancer

He is a loving, gentle man, so like his father who died aged 90, many years back.

Happy Birthday, Bill, said Cancer. By the way, We're back. Did you miss us?

Like fuck.

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Even more so than I was before

Posts: 20431 | From: No longer where I was | Registered: Sep 2005  |  IP: Logged
Rossweisse

High Church Valkyrie
# 2349

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Oh, hell. I hope Bill kicks its ass again.

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I'm not dead yet.

Posts: 14757 | From: Valhalla | Registered: Feb 2002  |  IP: Logged
anoesis
Shipmate
# 14189

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quote:
Originally posted by anoesis:
I took my eight-year old to a specialist's appointment a couple of days ago. An appointment I had to push our GP to request, and which we waited six months to get. I expected five minutes and a polite brush-off. What we got was three-quarters of an hour of examination and note-taking, consulting with colleagues, the ordering of many tests, and at some point the phrase 'possibly a tumour' was uttered. I am not thinking too straight right now.

Thanks all for your responses and prayers. Time for an update. We have had all the tests, and the follow-up appointment with the specialist just last week. There is no further talk of a tumour, and no abnormalities on the x-rays ordered. In addition, her adrenal glands apparently function as expected. However, for some reason, she is carrying around in her body progesterone levels that (I've just remembered this from tests of my own - I had trouble getting pregnant) - are well above baseline even for a post-pubertal female. What exactly this means for the future, I don't know*, but it seems we can be confident there is a future.** Anyway, thank you all so much for extending a hand to me, out of your own darkness.

* I was told she is likely a carrier of congenital adrenal hyperplasia.

** I was further told she might want to consider genetic testing before starting a family, so I presume this is at least seen to be a possibility.

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The history of humanity give one little hope that strength left to its own devices won't be abused. Indeed, it gives one little ground to think that strength would continue to exist if it were not abused. -- Dafyd --

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Huia
Shipmate
# 3473

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It was good that they finally took you seriously and that there isn't a tumour, the rest sounds kind of puzzling. I suppose you just keep an eye on her and get any further tests as needed.

At least having had this result you shouldn't have to push so hard in the future. [Votive]

Huia

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Charity gives food from the table, Justice gives a place at the table.

Posts: 10169 | From: Te Wai Pounamu | Registered: Oct 2002  |  IP: Logged
Nicolemr
Shipmate
# 28

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Some good news! My ex-lover and very dear friend who is undergoing chemo for non-Hodgkin's lymphoma has been told is all goes well he is on track for being in remission by the end of the year!

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On pilgrimage in the endless realms of Cyberia, currently traveling by ship. Now with live journal!

Posts: 11686 | From: New York City "The City Carries On" | Registered: May 2001  |  IP: Logged
Rossweisse

High Church Valkyrie
# 2349

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I'm glad to hear such good news from you, Nicole!

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I'm not dead yet.

Posts: 14757 | From: Valhalla | Registered: Feb 2002  |  IP: Logged
no prophet's flag is set so...

Proceed to see sea
# 15560

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Spouse of colleague, child of another colleague. Just heard about both today. Child is flown to neighbouring province because of rarity and seriousness. Colleague's spouse is awaiting oncology determination. ictus oculi, gloriae finis mundi to which I say spero di no. Which what we said in school latin, "in the blink of an eye, the glories of the world end(?!); I hope not." And then we said "fuck".
Posts: 11181 | From: Treaty 6 territory in the nonexistant Province of Buffalo, Canada ↄ⃝' | Registered: Mar 2010  |  IP: Logged
Rossweisse

High Church Valkyrie
# 2349

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Dammit, Prophet.

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I'm not dead yet.

Posts: 14757 | From: Valhalla | Registered: Feb 2002  |  IP: Logged
Huia
Shipmate
# 3473

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quote:
Originally posted by Rossweisse:
I have been amazed by some of the things I would have said, pre-cancer, that I could never handle - but which I just deal with now, almost seven years into my new normal. One's perspective does change.

Rosweisse, thank-you for that comment. I have never had cancer, just a breast lump that was removed and some symptoms of another cancer that were misleading, but I have worried about how I would handle it if I had to.

I hope I would handle it with a similar attitude to yours.

In New Zealand there is a Maori expression Kia Kaha which translates as "stand firm", or "be strong", but it has overtones of respect for and recognition the dignity of the the person.

Kia Kaha Roseweisse.

Huia

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Charity gives food from the table, Justice gives a place at the table.

Posts: 10169 | From: Te Wai Pounamu | Registered: Oct 2002  |  IP: Logged
Huia
Shipmate
# 3473

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[Hot and Hormonal] and that should read Kia Kaha Rossweisse

Apologies for the wrong spelling, I picked it up to late to edit [Hot and Hormonal]

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Charity gives food from the table, Justice gives a place at the table.

Posts: 10169 | From: Te Wai Pounamu | Registered: Oct 2002  |  IP: Logged
Rossweisse

High Church Valkyrie
# 2349

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quote:
Originally posted by Huia:
... Kia Kaha Rossweisse ...

Thank you!

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I'm not dead yet.

Posts: 14757 | From: Valhalla | Registered: Feb 2002  |  IP: Logged
no prophet's flag is set so...

Proceed to see sea
# 15560

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Colleague's spouse: "cancer is widespread". "Palliative treatment to improve quality of life for the months which are left." Organizing driving to cancer centre and will have to get on to the meals. Denial and catastrophe in the same minute. The wrong people at the wrong time.
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Stercus Tauri
Shipmate
# 16668

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A few days ago here we were talking about how many of us appeared to be getting away with it. Then S was told that the tumour had started growing again; last night L was rushed to emergency with an apparent sudden change in her latest recurrence; J died just this morning, not of the cancer, but from the side effects of chemo. Merde. But I'll have my regular check-up next week and will probably be pronounced NED again. Now some cursing and then perhaps some praying.

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Thay haif said. Quhat say thay, Lat thame say (George Keith, 5th Earl Marischal)

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Bishops Finger
Shipmate
# 5430

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Kia Kaha.

Thanks, Huia - a lovely phrase, with its positive overtones.

IJ

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Our words are giants when they do us an injury, and dwarfs when they do us a service. (Wilkie Collins)

Posts: 9449 | From: Behind The Wheel Again! | Registered: Jan 2004  |  IP: Logged
MrsBeaky
Shipmate
# 17663

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A dear friend, a man who married later in life and is father to two boys under 10 has just heard his cancer is back.

And the 11 year old grandchild of some other friends died on Saturday from the recurrence of a brain tumour.

I honestly have no words.

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"It is better to be kind than right."

http://davidandlizacooke.wordpress.com

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Bishops Finger
Shipmate
# 5430

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[Votive]

IJ

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Our words are giants when they do us an injury, and dwarfs when they do us a service. (Wilkie Collins)

Posts: 9449 | From: Behind The Wheel Again! | Registered: Jan 2004  |  IP: Logged
Rossweisse

High Church Valkyrie
# 2349

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[Votive]

--------------------
I'm not dead yet.

Posts: 14757 | From: Valhalla | Registered: Feb 2002  |  IP: Logged
Lamb Chopped
Ship's kebab
# 5528

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My sister's CA-125 has gone up enormously, and the worrying spot on her liver is much enlarged. I don't think the Zejula is working. They want to do a liver biopsy and have scared the shit out of her with the standard warnings delivered at the wrong time--on a day when they'd already given her the wrong results twice ("Oh what a great scan--you're clear--oops, we missed this whacking great bit here" and similar false good news about the number).

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Er, this is what I've been up to (book).
Oh, that you would rend the heavens and come down!

Posts: 19995 | From: off in left field somewhere | Registered: Feb 2004  |  IP: Logged
Lamb Chopped
Ship's kebab
# 5528

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What do I do, besides pray? This bloody thing is moving so quickly, compared to other cancers. I'm not in Calif. and can't take her to doc, etc.

And I'm going bonkers with my mother dumping all her own fear and anxiety on me, and particularly now that she's fixated on my sister's drinking, which my mother can't stop worrying about and which she thinks is far more than I think it is, though I could be wrong. But my mother was married to an alcoholic.... Me, I don't see that her life is likely to be long enough to make alcoholism a very significant risk. I'm more concerned about possible drug interactions....

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Er, this is what I've been up to (book).
Oh, that you would rend the heavens and come down!

Posts: 19995 | From: off in left field somewhere | Registered: Feb 2004  |  IP: Logged
Rossweisse

High Church Valkyrie
# 2349

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Oh, Lamb Chopped... I've been wondering where you were, and worried that this was why. Prayers ascending. [Votive]

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I'm not dead yet.

Posts: 14757 | From: Valhalla | Registered: Feb 2002  |  IP: Logged
MaryLouise
Shipmate
# 18697

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(LC) and sister. [Votive]

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“As regards plots I find real life no help at all. Real life seems to have no plots.”

-- Ivy Compton-Burnett

Posts: 521 | From: Cape Town | Registered: Nov 2016  |  IP: Logged
Cathscats
Shipmate
# 17827

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[Votive] For Lamb Chopped and her family.

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"...damp hands and theological doubts - the two always seem to go together..." (O. Douglas, "The Setons")

Posts: 156 | From: Central Highlands | Registered: Sep 2013  |  IP: Logged
RooK

1 of 6
# 1852

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Posts: 15171 | From: Portland, Oregon, USA, Earth | Registered: Nov 2001  |  IP: Logged
RooK

1 of 6
# 1852

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Not sure how I failed to make that a hyperlink.
Randall Munroe groks things.

Posts: 15171 | From: Portland, Oregon, USA, Earth | Registered: Nov 2001  |  IP: Logged
no prophet's flag is set so...

Proceed to see sea
# 15560

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Hang in there Lamb Chopped! All any of us can do is the best that we can. The rest is out of our control.

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Out of this nettle, danger, we pluck this flower, safety.
\_(ツ)_/

Posts: 11181 | From: Treaty 6 territory in the nonexistant Province of Buffalo, Canada ↄ⃝' | Registered: Mar 2010  |  IP: Logged
Niteowl

Hopeless Insomniac
# 15841

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[Votive] [Votive] for Lamb Chopped and family

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"love all, trust few, do wrong to no one"
Wm. Shakespeare

Posts: 2435 | From: U.S. | Registered: Aug 2010  |  IP: Logged
Rossweisse

High Church Valkyrie
# 2349

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Oddly enough, the eclipse (which I saw from my front yard) was one of the things I was living for, too. And now I'm planning on seeing the next one, even though I'll have to drive for it. No surrender!

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I'm not dead yet.

Posts: 14757 | From: Valhalla | Registered: Feb 2002  |  IP: Logged
Moo

Ship's tough old bird
# 107

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quote:
Originally posted by Rossweisse:
Oddly enough, the eclipse (which I saw from my front yard) was one of the things I was living for, too. And now I'm planning on seeing the next one, even though I'll have to drive for it. No surrender!

Right on, sister!

Moo

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Kerygmania host
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See you later, alligator.

Posts: 20260 | From: Alleghany Mountains of Virginia | Registered: May 2001  |  IP: Logged



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