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Posted on Jan 19, 2019, 6:15 am
#1

Just a general curiosity question for the community.  For those of you who really want to pursue the CLL journey, what is preventing you right now from going forward with the surgery / procedure?

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Posted on Jan 19, 2019, 6:52 am
#2

Fear of chronic pain and disability, lack of opportunity of meeting real patients who get this done (due to privacy reasons), many diaries being unreliable without proof while strongly recommending the doctor, many doctors advising against this (even though some "market" it unethically).

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Posted on Jan 19, 2019, 8:11 am
#3

Same as cool said and of course the costs.

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Posted on Jan 19, 2019, 3:32 pm
#4

Financial. I currently only have $500 saved, but I am moving back in with my parents tomorrow to save almost all of my paycheck each week and make this finally happen For those interested in CLL...What is currently preventing you from starting...

They are not rich, so cannot help me directly financially (though I wouldn't expect them too), but are very supportive. So they are helping me in this way to make my dream happen For those interested in CLL...What is currently preventing you from starting...

Congratulations by the way, for being able to do this with the Stryde system and almost hitting 1cm For those interested in CLL...What is currently preventing you from starting... Your diary is inspirational and I love reading the updates.

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Posted on Jan 19, 2019, 3:59 pm
#5

Pain for life.
Not being able to return to doing certain activities like now.
Costs of good doctors.
Without guarantees.
Loss of mobility range.

I could mention something else maybe...

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Posted on Jan 19, 2019, 4:12 pm
#6

Quote from: Trevor.P on January 19, 2019, 03:59:52 PMPain for life.
Not being able to return to doing certain activities like now.
Costs of good doctors.
Without guarantees.
Loss of mobility range.

I could mention something else maybe...


May I ask what else? I am also trying to think of all the negatives, to make the most informed decision possible.

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Posted on Jan 19, 2019, 4:31 pm
#7

Quote from: heightjourney on January 19, 2019, 04:12:27 PMMay I ask what else? I am also trying to think of all the negatives, to make the most informed decision possible.



Of course, no problem!

Lost of extremity.
Death.
Pains with temperature changes.

You really have a lot of things going through your mind.

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Posted on Jan 19, 2019, 7:01 pm
#8

The fear of waking up in the middle of the night in a hospital bed, in a foreign country. Covered in sticky sweat, being unable to walk, unable to sleep, unable to have your healthy limbs back, horrible pain violating your body. The darkest thoughts imaginable overcoming you. Being unable to generate the slightest positive thought, feeling absolutely wretched with every moment of your being, feeling alone and hopeless. Longing for the pivotal concept of someone hugging and embracing you until your pain and desperation go away, while being distinctly aware that there is no going back and you gave your consent for a long trip in living hell.

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Posted on Jan 19, 2019, 8:01 pm
#9

Financial and finding a good time for a career break.

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Posted on Jan 19, 2019, 11:05 pm
#10

Quote from: IwannaBeTaller on January 19, 2019, 07:01:54 PMThe fear of waking up in the middle of the night in a hospital bed, in a foreign country. Covered in sticky sweat, being unable to walk, unable to sleep, unable to have your healthy limbs back, horrible pain violating your body. The darkest thoughts imaginable overcoming you. Being unable to generate the slightest positive thought, feeling absolutely wretched with every moment of your being, feeling alone and hopeless. Longing for the pivotal concept of someone hugging and embracing you until your pain and desperation go away, while being distinctly aware that there is no going back and you gave your consent for a long trip in living hell.


You got me. CLL is a shady business. All people involved display a strong lack of ethics and mild or extreme forms of psycopathy. When you sell your soul to them it's over. Your life won't be the same again.

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