I\'m Baffled

12 years 10 months ago #38186 by mmc
Replied by mmc on topic I\'m Baffled
Good points George!
I just went back and found the first post I ever made on this site (at the time it was WebCafe). Four years and 7 months ago. In the post, I mentioned that I had been reading the site for several days prior to posting. I don't think I was averse to posting (I'm just that way) but I was studying everything I could find, everywhere I could find it.

It was 11/24/06 when I first posted and my TURB was on 10/31/06. However, the doc was pretty sure it was CIS when I got my first cysto (but I needed to go on a business trip overseas for two weeks so I delayed the TURB until I returned). Based on my symptoms, I am pretty sure I had bladder cancer for at least a year before it was diagnosed.

I think it is interesting to search back (use the Advanced search option and be sure to adjust how far back the search goes) to see our first postings. I had 91 pages of results! Yes, I already know I'm a blabbermouth! :D

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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12 years 10 months ago #38184 by GKLINE
Replied by GKLINE on topic I\'m Baffled
Thirty one years for me. And I am more with Mike than with Twitter and Facebook.

I am on of those people who is totally unfamiliar with the special terminology that the medical profession uses. I was COMPLETELY intimidated by the language at first. I still defer to Patricia, Cynthia, and Mike for that kind of work.

But I think most people who visit this site are like me. Scared and intimidated by the science. Clueless as to all the lingo and afraid to ask for fear of looking stupid. Quite frankly, it took all of my courage to post the first time. I was so afraid the replies would make me look stupid at first. I am a firm believer that email and chat online makes for some very poor communication indeed. Many small miscommunications can erupt into someone feeling put upon made fun of.

This is an informative site and I have Seen people actually saved by the info received here. But indeed we have to consider the fear they have when they arrive.

My first experience her was Cynthia's story on the Web Cafe. maybe that is what we need as an intro.... The stories of real survivors who were once as scared and clueless as we know them to be now. Our visitors need to be reassured this is NOT an EXCLUSIVE site for experts only. We have experts, but the vast majority are afraid and don't know where to turn or what to say.

Lets find a way to welcome them and bring them into the fold and soon they may be posting to help others.

George
sorry for the crushing word count, but you guys hit on a good subject for me.

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]

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12 years 10 months ago #38183 by mmc
Replied by mmc on topic I\'m Baffled
LOL!

Yes, one would think that after 32 years I would know when to pull my head in--but alas, no. I still manage to put my foot in it on a pretty regular basis. :D

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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12 years 10 months ago #38176 by Cynthia
Replied by Cynthia on topic I\'m Baffled
I fixed my typo in revenge! Now they will think you two are just babbling. I get busy and use spellchecker and do not proof read as close as I should. Perfectly spelled words even the wrong ones do not come up in spell check..........

I personally vote for Turtle for a nick name I have noticed you have been married long enough to know when to pull in your head.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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12 years 10 months ago #38174 by mmc
Replied by mmc on topic I\'m Baffled
Pat,

ROFLMAO!!!!
That was FUNNY!

It did take me a couple times reading that sentence before I figured out "background". You should see some of the things that my wife and I wind up with from autocorrect on the iPhones! :)
Some are hilarious.

Given my propensity for typos, I usually don't say anything but this one is pretty funny. :) (Please don't fix it Cynthia).

Best Regards,

Hunchback of Fort Collins... :D :woohoo:

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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12 years 10 months ago #38172 by Patricia
Replied by Patricia on topic I\'m Baffled
Mike,
I didn't know you had a round back? Shall I refer to you as Igor from now on?
:P

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