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Once more into the bright light!

14 years 9 months ago #26539 by britt
Replied by britt on topic Once more into the bright light!
I dont know if I had mentioned this. While i was out they worried about incontinance I geuss and put a foley in me. Once again it was jammed in carelessly and was causing extreme irritation and spasms! I finaly got them to remove it if i promise to lie still after! It was like she was pulling it out forever it was so long. It took 3 breaths to pull it. I gues that means I have an opening for the cysto. Againg I was passing razor blades for 2-3 days. I sure hate that feeling of neeeding to relieve and only a painful drop comes out!
Cynthia, what I had meant was that i would try not to stray as far and confuse this thread. It means a lot to me and I dont want to lose it quite yet.
About thta vid, I wall always rgret posting that. At the time i saw it it tied in with something on my mind and it sort of obcessed me for a bit. No mare, promise!
britt

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14 years 9 months ago #26522 by mmc
Replied by mmc on topic Once more into the bright light!
Britt,

I must have missed the posts about the cytologies. The fact that you have had two and they were both "ALL CLEAR" is a GREAT SIGN! :D

As Julie said, you have to prioritize when you have so many different health issues competing for your attention. I wish the VA was competing for your attention more than they are. It makes me ashamed that our government lets the VA problem languish on after the service you and others have given our country.

Positive cytologies is a very, very good sign. I think you could safely let the cysto slide a bit (not forever) and not worry so much about that. I certainly wouldn't risk my life to get a cysto if I had your other issues and two clean cytology reports.

You mentioned previously about your friend's in high places that could pull strings in the VA. I'd go back to them again if I were you in addition to your congressional representatives.

Also, as Cynthia already mentioned, discussing other health issues is just fine here and she'd never restrict anyone for that. That video however, was gross (and not bladder cancer related) and I also didn't think it belonged here.

That's completely different than explaining all of the other medical issues you have and medications that you're on. Keep us all up to date as things progress and congratulations on the those two clean cytologies.

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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14 years 9 months ago #26518 by Cynthia
Replied by Cynthia on topic Once more into the bright light!
Britt,
I think you and I had a miss understanding you had a one point posted a video of a cancer surgery that was not related to bladder cancer. It was so grizzly that they had posted a warning to those viewing it, and I emailed you that I was removing it. The reason I gave you was basically it had no added value to our group other than to scare people that were newly diagnosed who had enough to worry about without adding things to it that did not apply. I also know you have been upset when I have locked a few topics, the reason I do this is when they get very long and change subjects they are not as easy to follow and search. The reason we allow others to get longer is if they do not change subject and have not reached resolution as yet, but generally it is best if a post stays under five pages. Do not forget that when you post for support you also become a blc advocate as many people that are not users read the post here to learn, so we are trying to keep it easy to read and follow for everyone. Please never feel that any of this is personal it is not it is just our attempt to make the forum work at its best. I know you belong to other forums that work differently but that is the way we do things here.

I cannot imagine why you feel that I would not encourage you to post about your health problems. Many of us have many different health problems and personal problems that are not directly related to our blc but have a big impact on our quality of life and the treatment of our blc. So post away and know that I hope you are able to get some relief soon.
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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14 years 9 months ago #26516 by britt
Replied by britt on topic Once more into the bright light!
I got with my PC nurse as soon as she came in. My PC is on leave again until next week. Although there isnt anything much he can do she thinks he will want to see me next week. I have her pulling some strings for me. According to the cardio the strain on my heart thru this episode has aded to my permanant damage. Along with my ejection fraction slippng to the low 20% region there is bound to have been additionasl eschemia doue to lack of O2 to y heart over the almost 50 min i couldnt breathe.
Im set up with neuro to finish my sleep study and get a Cpap machine the end of Jul. Now I need cARDIO ON BOARD.
i DONT KNOW WHAT CAN BE DONE ABOUT MY CYSTO AS THE ONLY GUY THE va HAS ON TAP WANTS A RIGID SCOPE DONE IN SURGERY! tHEY DID PUT A FOLEY IN ME WHEN i WS IN THE er/icu. tHEY HAD TO PULL IT as it was pushing against a nerve and makng me scream in spasm again1. It proves one will go in again anyway. Im glad its relaxed. i had the feeling of passing razor blades for a couple days and Im sure we have all been there!
thanks
britt

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14 years 9 months ago #26511 by alsimons
Replied by alsimons on topic Once more into the bright light!
Britt
After reading your post I’m going to break my promise of not posting here while I am in pain or having an emotional bad day.
First, as Julie said you along with all of your other major health problems have bladder cancer and this is the place to solicit valuable information. I don’t believe Cynthia, who dedicates so much of her time to provide this forum would ask you to refrain from posting.
Second, how can you bring us down? Everyone that is here is or has been dealing with cancer and other health issues. The fact is your post actually reminds me that I could be a whole lot worse off and the problems I face pale in comparison.
Third, I also am eligible for VA benefits and should I end up becoming unemployed will have to pursue the same avenue you are experiencing. Having spent 6 months in a military hospital in 1970 it is the last place I ever want to return to. Please follow the advice you were given and contact your elected officials to put some heat on the system. The VA is perhaps the most disgraceful example of incompetence in our government.
Please know that I am deeply concerned about you and look forward to reading some good news. Give them hell.
Al

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14 years 9 months ago #26506 by Julie
Replied by Julie on topic Once more into the bright light!
Britt, whatever affects a person with bladder cancer is appropriate to post here. Your life is being severely affected by all your medical issues of which bladder cancer is a part. We are all concerned that you be treated well by the VA system. It is just my experience that the VA is hard to influence. They also saved my sister's life when she had kidney cancer but she was diagnosed in November and didn't get surgery until March. Please share with us how your are doing. Julie
Volunteer Coordinator
ABLSC

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