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Rock and a hard place.

11 years 6 months ago #25504 by Cynthia
This has became a very long post so I am going to lock it here as you have turned a corner. Please update us in a new post as time goes on.

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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11 years 6 months ago #25503 by sara.anne
Way to go!!! Keep us posted on progress.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
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11 years 6 months ago #25499 by britt
I was a chef most of my adult life after the service. My legs got to bad for me to stand and work around 87 so I started raizing fund for paralzed vets. I mad a lt of contacts and did that until 95 when I larned I was a good enough salesmantto make some real cash!! I was forced to do the Vets thing again whilst awaiting my disablit appeals and kept alive. I made a lot of great contacts. Seing how bad many indegent vets have it when put into the VA I went out and raised a serious hunk of cahs which went right into the Vets programs. Ditty bags, canteen books phone cards etc. I got to know the directors secatrtery quite well. I called her the day I found out my problem and called her directly as the PA's ahd let me down. She was so upset I got a call from the director himself yesterday and he told me hed expedite my case. An hour later I get a call from uro saying Ive been approved for outside treatment and they contacted the dr I tried to see before and hell call me next week for an appt!
My wifes dream as she didnt want the VA to treat any more than a hangnail!
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11 years 6 months ago #25497 by sara.anne
Britt, this is sort of a last resort, which can work wonders....or not. You have two senators and a congressman. I would suggest that you write a very reasoned, logical, dispassionate (get the idea?) summary of your problems with the VA. Include exactly what you feel should have been done and what should be done now in your case. Send this to your legislators. With all the concern for the way that the VA is treating our veterans, it is possible that their intervention can work miracles.

As a former federal government employee, I can tell you that pressure from Congress can move mountains. It will all depend on your careful, reasoned approach to the problem.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
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11 years 6 months ago #25494 by britt
I had mentioed that I was tentetivly refered to another privatee uro when mine jumped ship. I mentioned that when I contacted them that I was informed that all VA patients were beong called back to the main hospital for care even the terminal cancre patients who had been getting long term care outside the VA, After a run around with the phys asst and my records i had demanded an appt with the actual dr! It was granted. We drove the 35 mi to the main hosp and sat 20 min after our scheduled time while the dr just sat at his desk. Then he walked past us and I called for hime. He said "what dio you want?" I told him I was his 2 oclock appt. He rudely said that he didnt need to see me and went into the cysto lab with a patient Once again I saw the PA and this time I had me records and we got somplace and calmmed my wife down about letting them do a scope to check on my progess(remission or not) I mentioned that the other uro's office said the VA guy would be gone 2nd week of apr. I had a flex cysto set up for the 22nd and mon I get a all to XL. I call and find outthe dr left as I was told he would! Yet they had the unmittagated gall to make me an appt when there was not going to be a doc! Now Im steamming. I was due for my post TURB follow up feb 13th and we're nearing the end of Apr which. Well I am getting my wifes wish of outside acre but the offhanded manner still ticks me off!
I saw my VA PC tues on a follow from a PA/COPD attack. We talked uro for half an hour as i hadnt seen him since Id been diagnosed. He looked at the VA records and the uro was a locum tennes contracted till apr 17th!!!!
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11 years 7 months ago #24536 by GKLINE
I thought I would just talk about the embarrassment issue. With a little story.
My FIRST visit to the urologist was for a scope. the nurse showed me a room to change into a gown. I went in and undressed, put on a gown, walked down the hall and greeted the nurse again. She said,"remove your gown, lay down on this bed, andwe'll start. I said "why did you make me go into that other room and disrobe?" She laughed and said " this is your first time here and we wanted to give you some dignity. There is no such thing as dignity in the urology dept." With that, she proceded to give me a topical novocain rub.(You know where) I told her that my wife would be concerned about this procedure. We both had a laugh, as I was now losing all of my dignity. I was becoming a urology veterin.
After all is said and done, small cases of embarrassment become the highlight of the experience. They become the comic relief of the procedure. I keep thinking, "They have seen it all before" and they have.
Even in this personal nature, the staff I dealt with were professional and kept my loss of dignity to a minimum.
My advice ( take this from the guy who hated the lockerroom scene during high school football because of embarrassment.. I quit after the first year because of it) We are talking about your life here! Just remember, these times make the best stories after.
Good luck, and the people on this site will fill you in on the technical issues. I am meerly the comic relief.

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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