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I\'m I lucky or what!!!

8 years 7 months ago #36732 by sara.anne
Ed, you are one of OUR heroes.....

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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8 years 7 months ago #36728 by GKLINE
SLED

Thanks for the update. We've missed you. You ARE indeed "Tough Enough" (as the song says).
I hope your post gives every member of this site; especially the silent ones, a meaningful outlet to vent, inquire, rant and cry their feelings. Sometimes, you just need to throw them on the table and get them out of you.

Nice to hear from all of you

George

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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8 years 7 months ago #36724 by dukel
Eddie; It's great to hear from you! Thanks for up dating us. Thanks for putting a little part of me on that wall in Toronto.
It means a lot to me that you have been able to use that. I have to be honest here though. I just don't know if i could be tough enough to handle that throat cancer thing. I had a good friend that had it and i've seen how tough it is. That was nearly ten years ago and he is doing great. I will be praying that this new thing you're going to be checked for turned out to be nothing.
Please keep in touch. Thanks
Duke

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8 years 7 months ago - 8 years 7 months ago #36720 by mmc
Ed,

One more thing. Ever since I had that Foley clog, I just bring condom catheters with me if I have to have surgery. WAY less risk of infection with a condom catheter anyway and I know it's not going to get clogged. I put it on before getting wheeled into surgery and they just hook up the bag to it after I'm knocked out. Way better--if you ask me. :)

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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8 years 7 months ago #36719 by mmc
Ed,

Thanks for the shout out! Glad something I posted helped somebody. That clogging from a Foley can be deadly.

I'm also having to cath every single time I go during the day and I use the condom catheters every night. Now that I have CPAP machine, I'm just a mess of tubes going all directions. LOL! It's true but I don't care. I sleep all night AND now that I got the CPAP machine, my wife can sleep all night too! :) That there is what I call a "GOOD THING"!

I think that shell you put up is really cool! I bet Duke gets a big smile from that one too.

Hope that throat cancer thing is a thing of the past. They found a lump on my thyroid when I got the PET scan after getting my recurrence diagnosis. Sure was glad it turned out to be a cyst. My surgeon (uro) had a specialist come in and scan that and it was benign. Saved me a trip!

You said a lot of great stuff, including the part about EVERYBODY that posts on this site making a difference. You and everyone who shares their story (from initial diagnosis through treatment and beyond) makes the HUGE difference and makes this site so very valuable.

I know there are lots of folks out there that read these posts and don't post themselves. To those folks I say, please share your story. Just like reading other posts here helps you sometimes, your story could help others. You never know what story will be the one that somebody out there can relate to.

I miss Leah alot also. He helped me tremendously way, way back. As did Pat and Cynthia and Jack and Betsie Mae and well...everybody.

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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8 years 7 months ago - 8 years 7 months ago #36717 by Sled Ed
OK Duke now you've gone and done it...u're actually going to get me to do an update...whew!

Recently at my favorite oyster house in Toronto I was granted the honour of getting to sign an oyster shell to be put up on their wall of fame..wahoooo! The date was June 1st and I was already into about 25 of 33 radiation treatments for a high grade throat cancer. The importance of this is significant and has to do with you.
A bit of history...my radical cystectomy was performed on me nov 19/2009. Things seemed to be going well..pad trained by about 4 months in daytime but bad leakage by nite. Note..always had trouble voiding and could never seem to drain myself. I think alot of us are so brave and just want to get on with it that perhaps we accept our 'new us' too quickly.

Six months after my RC..a large lump formed on the right side of my neck under the jawline. After tests and results it was determined that I had another primary cancer...throat cancer. Please don't read this as complaining 'cause I know that many people are way worst off but it has been one hell of a ride. This malignant cancer has not been fun!

Where you helped Duke was being able to adopt your saying 'Get tough Be tough Stay tough. That is what I wrote on the oyster shell mounted on a wall in Rodney's Oyster House in downtown Toronto.
I had that saying written on my frig for ages. If the chemo made me puke..your saying gave me strength to drive my fists upward and try my damdest to sing the song...We are the champions! Watching Mike Douglas on TV this last 6 months suffering from throat cancer broke my heart each time I saw him...knowing what he is going through.

One of my problems was my desire to become continant at night time. Now how in heck can that be done when until only recently dared not to have a water bottle in my hand. Saliva..(thick) is only starting to return. I did 33 radiations and 3 chemos. I am still down 31 lbs since this second cancer came pounding at my door.
I'm writing an update because I owe you all SOOOO much. MMC..Mike unknowingLY u may have even saved my life...weird eh!!
Your post came to my mind one day in an emergency room while on vacation in PEI. How would I know why I had a temp climbing up to 40.9. The doctors sure didn't have a clue. After hours of their guessing game it came to me to ask for a bedside ultrasound and whadaya know...1100 cc's of unvoided urine in my bladder. If I had not clued in ..they probably would not have either. A few more hospital emergency visits since that and now have discovered the simple problem. I go in on march 11 for a small surgery to remove a 'piece of skin' that has been blocking my flow since the beginning of all this.

Needless to say I will probably still have to use a condom catheter at nite time for a period yet but hope to be rid of my procedure of self cathing during the daytime.

In spite of being thrown some of lifes' curve balls, I really do maintain quite a happy disposition overall. I travel constantly with my career, smile a real lot, snowmobile many miles and spend as much time as I can with my partner Mary-Jo.

In closing it is not just Mike who has helped me or Patricia or George ...it is all of you beautiful cancer survivors along with their friends and family!!

Don't go changin' !!!

PS...I have been experiencing nausea, energy loss and just not my bubbly self lately and am booking in to begin another series of tests...

PSS...I still think of and miss Leah alot....he was the first person I wrote to on this forum.

Eddie

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