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  #1  
Old 01-04-2008, 07:51 AM
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gracie82159 gracie82159 is offline
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Default Weekly Affirmation-What NOT To Say To A Cancer Survivor

When we honestly ask ourselves which persons in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, THAT is a friend who cares.
~ Henri Nouwen ~
"Out Of Solitude"




Whether you are a newly diagnosed survivor or someone who loves him or her, cancer rocks your world. We survivors have our own issues to face, but those of you who care for us can help by learning what not to say. We know you mean well, but please avoid the following platitudes:

"God won't give you more than you can handle." This implies that God gave me cancer. I don't buy it. The God I know is about goodness and light and love and healing. He doesn't throw down lightning bolts of cancer (or other catastrophes for that matter); that kind of thinking went out with ancient mythology. My cancer was caused by some cellular misfire, some rotten biological/chemical event, a chink in my body's immune system armor. Instead of telling me that God doesn't give us more than we can handle, remind me that God helps us handle what we are given.

"I could get hit by a bus tomorrow. You'll probably outlive me." Keep that up, and I can guarantee it. Look, if you're walking blindfolded down the middle of a major interstate highway during rush hour when you say this (because that's how I feel right now), it might make sense and I might agree with you. Otherwise, it's a meaningless remark that does nothing to make me feel better. In fact, now I'm worried about you. Thanks a lot.

"You have to have a positive attitude to beat this, so come on! Be positive!" You've just added to the terror I'm already experiencing. You have implied (whether you meant to or not) that I'm hurting my chances of getting well because I'm very sad and very scared right now. If you really want to help me, acknowledge and validate my feelings. Feelings are not facts, so you can't argue with them; please don't try. Instead, help me express what's in my heart and on my mind. You don't need to respond to everything I say. Just listen without trying to "fix" things. I will find my way to a more "positive attitude" as I gain understanding of my disease and treatment plan and as I begin to regain control of my life. Be patient with me. I'll get there in my own time.

"Don't cry. It will all be okay." These words are almost always said because the person who is witnessing the crying is uncomfortable. If you're uncomfortable seeing me cry, then please don't come around for a while. I need to cry sometimes, and I don't need anyone telling me not to. Crying is healthy. It helps me get the bad stuff out, and that helps make room for the really good stuff like wholeness and healing.

And you don't know if it will "all be okay" anymore than I do, so don't say that. In fact, don't say anything just to be saying something. If you can just sit with me and be with me and acknowledge through your silent companionship that we are mere mortals but we are in this together, that will be more comforting to me than anything you could say.

A special message for doctors:

Since when did you guys stop giving out hope? I'm not saying we want you to lie to us, but geez! Be still and focused and very present with your patient in that moment when you must inform him of the diagnosis. Imagine yourself in his place, and know that you are preparing to deliver what will be one of the most devastating blows of his lifetime. Instead of saying, "You have cancer. It's very serious, and the prognosis is not good," why not say, "You have cancer. It's very serious, and I don't know what the outcome will be, but with your courage, spirit and cooperation and my knowledge, skill and experience, we are going to form a very powerful team to fight this thing." You haven't misled the newly diagnosed survivor in any way at all. You have simply told him that he is brave and you are smart and that you will be in there with him, fighting all the way. And isn't that what you would want to hear if you were the patient?

And if he presses you on his "chances" (as I admit most of us do), tell him the truth - that statistics cannot predict outcomes. You know better than anyone that patients amaze their physicians every day by beating the odds, that the woman you expected to live for perhaps another year is still here 12 years later, that the man who had a diagnosis considered "terminal" 8 years ago went camping with his family last weekend, that the child with the "inoperable" and "lethal" brain tumor is back in school and playing soccer because his last scan could find no trace of the tumor. Come on. You know these things. These are the stories we want to hear, not numbers and studies and statistics.

And to all medical professionals:

You may not realize this (or you may have just forgotten), but we hang on every word you say. We take everything literally. We watch the expression on your face and the way your eyes move when you talk to us. You can make or break our spirit with a word or a look. We know you're very busy and that you are overworked, exhausted and probably w-a-y undercompensated, but I'm fighting for my life here. Please choose your words carefully, let the compassion that led you into medicine show in your eyes, and give me a hug or squeeze my hand now and then.

And whatever you do, don't ever be guilty of saying that you don't want to give a patient "false hope." There's no such thing. A miracle could be just around the corner. It's happened before (think Gleevec), and it will happen again and again and again.

And it just might be tomorrow.

A Prayer For Caregivers

Dear God, You have placed Your trust in me and blessed me by calling me to be a caregiver. Thank you for these special gifts and for those that will reveal themselves in the days to come. Keep me ever mindful of the words that issue from my mouth and the wordless messages I convey in other ways. Use me as You will, God, that I might be an instrument of peace and healing in this world. Amen.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Kathy
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Old 01-04-2008, 08:11 AM
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rmg75 rmg75 is offline
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Default Re: Weekly Affirmation-What NOT To Say To A Cancer Survivor

Very good points, Thanks Kathy

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Old 01-04-2008, 09:49 AM
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Default Re: Weekly Affirmation-What NOT To Say To A Cancer Survivor

Great piece, Kathy. I propose we find a way to share your very constructive advice to oncologists as well! With your permission, copying some of that text to lymphomation.org and linking to this as well.
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  #4  
Old 01-04-2008, 10:01 AM
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gracie82159 gracie82159 is offline
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Default Re: Weekly Affirmation-What NOT To Say To A Cancer Survivor

Karl,

These affirmations are not my writings, although I wish they were. They are written by a husband and wife team, both of whom were diagnosed with cancer within six months of each other. Roger and Kathy Cawthon now distribute a weekly e-mail newsletter, as well as travel the country giving inspirational talks regarding cancer survival. Anyone can subscribe by visiting www.thecancercrusade.com

The Cawthons do encourage forwarding the weekly affirmations to others. I'm sure that if you contacted them, they would love you to put a link on lymphomation! Here is their e-mail address: cawthons@thecancercrusade.com

I've mentioned in previous affirmation posts that the writing isn't mine...sorry for the confusion.

Kathy
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dx 1/06 fNHL gr 2 stg IIA; 4/06 PET shows more than CT, stg III/IV; 6/06-Clinical trial Rituxan; 8/06, 11/06, 6/07, 12/07-NED; 6/08-one node at 1.8cm; 7/08-4 more rounds of R; 10/08, 7/09-remission continues! Dance with life and leave a brilliant light behind...
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Old 01-04-2008, 10:11 AM
kklarocca kklarocca is offline
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Default Re: Weekly Affirmation-What NOT To Say To A Cancer Survivor

Thanks Kathy. It is truly amazing how we sometimes have to alter our feelings and emotions at times because of others and the verbiage they use or "not" use. It is a great to read all that because it keeps us in check and know that it does happen all the time and everywhere.
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  #6  
Old 01-04-2008, 10:37 AM
Heather717 Heather717 is offline
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Default Re: Weekly Affirmation-What NOT To Say To A Cancer Survivor

I've heard so many of these myself.

Great Affirmation! Wish there was a way to get this to the general population.
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  #7  
Old 01-04-2008, 12:41 PM
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Default Re: Weekly Affirmation-What NOT To Say To A Cancer Survivor

I'll add one more to the list (my mother's well-meaning comment)

"Honey, if you would only wear a little blue eyeshadow, you would look so much better."

Luckily as I sat there bald and very tired I didn't have the energy to respond how I would have liked to at the time...

Today I find it humorous..

Thanks for the posting, I am going to copy it, as it is very good!
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6/05, @ 58 yrs dx: Low Grade B-cell NHL, poss. Marginal Zone w/Follicular colonization, Stage IIA, subdiaph. nodes only
7/05 R-CVP
8/05 - 11/05 = 5 x R-CHOP, port, Neulasta & Aranesp
11/05 PET/CT = NED
12/05 = 2 more R-CHP (no Vin)try to reduce 1 last lrg node.
3/21/06 Biopsy last lg node = NED
9/06 start Rituxin maint every 6 month
10/08 still NED (almost 3 years)
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Old 01-04-2008, 03:16 PM
Dawn810 Dawn810 is offline
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Default Re: Weekly Affirmation-What NOT To Say To A Cancer Survivor

Kathy,

Thanks for posting these. Stu and I know better what to say to others now having had Stu go through this. Not the easiest way to learn it though . The advice in your post is so very appropriate and true so thanks again.
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Old 01-04-2008, 03:52 PM
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Default Re: Weekly Affirmation-What NOT To Say To A Cancer Survivor

very nice!!!
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Cheryl Mom to a Hero - Kyler, dx'ed at 25
6/12/07 misdx- DLBC 1B
6/28/07 correct DX - Burkitt's 4B
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Old 01-04-2008, 03:55 PM
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Default Re: Weekly Affirmation-What NOT To Say To A Cancer

great, thanks!
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