Your very brave and courageous to share your story. I know its a way that your coping with the diagnosis and coming to terms with what your going through. Im a 20+ year uterine cancer survivor. I had adenocarcinoma of the uterine lining. I was only 29 at the time. That was back in 1997. Two years and 7 months later the cancer came back in an inguinal lymph node. I was very proactive and did a lot of research. That waz my way of coping. I researched a lot! Took my fear and turned it into researching. Unfortunately, im having issues with my urine, and im not ready to get back onto the cancer roller coaster, but I know ill have to face it. I want you to know that you're not alone in this. There are many support groups out there probably even at your cancer treatment center. Here are some links that might be helpful: Bladder Cancer Advocacy Network offer in person support depending on what state you live in www.bcan.org Cancer Support Community www.cancersupportcommunity.org 1-888-793-9355 Monday through Friday 9:00am to 9:00 pm ET American Cancer Society Living as a bladder cancer survivor amp.cancer.org Developing a survivorship care plan etc.. CanCare One-on One Emotional support cancare.org matches you with another person with your type of cancer National Cancer Institute www.cancer.gov U.S. governments principal agency for cancer research/resources Stay strong, youll have good days/bad days. Allow yourself to feel both, dont hold your emotions in. Telling your story here on You Tube is personally empowering and will help you in your survivorship. Giving you these links I will look into some myself. Btw I used to have blood clots as well there's nothing to be ashamed of. It's the nature/side effects/treatment of the disease. You will come out of this, stay positive.😉😊 I like your arcade games in the back ground! Very kool! Your survivorship friend, Jennifer
it is much appreciated the testimony this wonderful gentleman that took his time to do this awesome video.....will have to go to the same procedure .....this most definitely has been a huge help to prepare and what to expect....not a simple thing though....thank you Kyle God bless you
I also couldn't pee when I went home just barely anything would come out. Ended up going to ER because I thought my bladder was going to burst they made me feel terrible when I went in they made fun of me saying I was acting like a pregnant woman. Pure pain. Everything you went through I did as well 👍
Same thing happened to me - totally unable to urinate and I was in the worst pain of my life. My wife took me to an urgent care center and they catheterized me, which immediately relieved the pain. Those people you had sound like real jerks. My nurses were very professional and took care of me very well.
As a clinical epidemiology professor at a major medical school and center-in retrospect, they should have admitted you when you had that initial blockage that could not be resolved. It also sounds as though the initial hospital lacked a urology residency program, or even urology PAs,. Either should have been called and should have seen you. It sounds like you must have seen a urologist in private or small group practice, lacking support in case of emergency-which you did have. One can demand to be admitted under these circumstances, and this requires both firm self-assertiveness and an advocate. I am having this procedure done in 2 weeks. I hope my experience is better than yours. Fortunately, 2 of my former graduate students are urologists (urology faculty) at my medical school, though the procedure will be done by a specialist in bladder cancer. Thank you so very much for your insight and for kindly sharing your experience!
Foley caths are just the worst thing to have banging around inside a mangled bladder. Every time the Foley balloon touched a surgery site inside the bladder, I'd get the most painful bladder cramps for a few minutes. It's been a year and a half since my diagnosis and have had two TURBT's as a tumor came back six months after the first one. Just finished up six weeks of BCG this week and hoping it killed off those damn cancer cells lurking around. Appreciate you sharing your personal journey with the world. Viewers should keep in mind that the journey is not the same for every bladder cancer patient.
Thank you. A first hand account that fills in the medical and emotional gaps while one goes through the process. Good Luck and God Speed your recovery.
Thanks for your video it takes alot to discuss this..I had the same procedure. Except I had very large blood clots coming out while I would urinate gross hematuria turned out I had a 6×10 tumor on my bladder wall. And told it was melegment not binine... was told it could come back and spread to other organs. I'm a survivor for now. And having a bag at home was terrible up most the night because I really needed to pee but only a few drips seemed to come out. Upon removing the turp they released the balloon and pulled it out so fast I screamed the pain was so intense I ran out of the office straight to the bathroom. This is something I'll have to try to live with it Bing melegment. Thank you and stay strong my friend I still worry it could come back at anytime but am great full that you put this out thank you again 😊
I completely sympathize. I'm going through a very similar experience. But I'm 78, more than twice your age. Your postings are helpful..."misery loves company." However there are some positive things you should look into. See Dr. Tony Talebi and Dr. Mark Soloway on youtube for an excellent explanation of procedures and possible outcomes. There are several postings by experts which are very informative. Also, Dr. John Bergman, who is often quite funny (which I found somewhat comforting.)
My husband came home with a catheter for 7 days (8-20-24). He was miserable. Thank God he didn’t have any blockage problems. He goes for the second surgery 9-26-24.
Couldn't pee for ages after getting out of bath. When I did it was just blood. Turns out I had blood clots. And it took a week for it to return to normal. Some nurses were good and some were bad. At this time all any one thought I had was iud. But today I found out after going through the both things from first video. Had that stuff in veins which made me very warm. Then a few hours later they took me upstairs and put a camera in me. Wasn't as bad as the catheter at first. I then was told I had growth. Which they suspect it being cancerous. So waiting for a biopsy now. This has helped. So thanks for that.
The process takes about 15 mins. But the anesthesia kept u in the hospital for 3-4 hours. Waking up from that was bad for me cos when I went home the catheter was very discomforting. Till it was removed 3 days later from my experience. Then every time I urinate it burned like crazy. That lasted for a few days before the burning stop.
I’m sorry you are going through this. I hope being able to watch my whole experience all at once is not too overwhelming. Please take it one day at a time. Just think about the next step.
Thank you very much for your time and also for reliving your experiences for me helped a lot and didn’t make me feel so alone in my journey . Can relate so much to all u are saying .
Lol! This had me laughing brother! Had my TUBTR 4 days ago, now sat here with a bag of cranberry juice strapped to my thigh. My catheter has to stay in for 12 days. But yeah, pooping and erections, haha, it helps to know you got through what I am going through now. Thankyou.
So sorry you had such an awful recovery. In the UK you would not have been discharged home on the same day as the procedure for exactly this reason. For all the money or insurance you guys have to pay for your health care you don’t seem to get good appropriate care and supportive instructions (. I’m a British nurse.)
Holly Hocks Kind of a hot topic in the states right now! :) When researching after my diagnosis, some of the most factual and concise information I found was from your NHS. Their documentation is an excellent source for proven, objective information about plans of treatment. Nurses are amazing people. Thank you for what you do.
I had that horrible catheter for 10 days and When your a woman that catheter is very uncomfortable did u pass what they call scabs cause I know I did and that shit sucks
i would be tempted to rip into hospital administration for shortchanging you on crucial self-care info and, of all things, irrigation saline--- which, by the way, can in a pinch be cooked up with a dollar's worth of distilled water and table salt from Walmart.
Barb Jones These videos are not scripted content. It was not my aim to keep you entertained and engaged. Your comment is not helping anyone. Keep it to yourself please.
@Barb Jones , Take your mundane Toastmasters' tidbits somewhere they're requested. This kind man has posted this for people who are going through the same thing and not to tickle your ear holes!
@@bladdercancerandtreatment let's be thankful this man took his time as best as he could to explained graphically and plain english this video that will help many that wouldn't have a clue what to expect......personally I am preparing myself for this ordeal mentally .God help us that have to go through this better than dying from an eventual metastasis.
@Barb Jones. Really unkind thing to write. The man is not a professional speaker. He is trying to help people through his experience and informative content, you are very unkindly criticizing the way he talks.
Your very brave and courageous to share your story. I know its a way that your coping with the diagnosis and coming to terms with what your going through. Im a 20+ year uterine cancer survivor. I had adenocarcinoma of the uterine lining. I was only 29 at the time. That was back in 1997. Two years and 7 months later the cancer came back in an inguinal lymph node.
I was very proactive and did a lot of research. That waz my way of coping. I researched a lot! Took my fear and turned it into researching.
Unfortunately, im having issues with my urine, and im not ready to get back onto the cancer roller coaster, but I know ill have to face it.
I want you to know that you're not alone in this. There are many support groups out there probably even at your cancer treatment center.
Here are some links that might be helpful:
Bladder Cancer Advocacy Network
offer in person support depending on what state you live in
www.bcan.org
Cancer Support Community
www.cancersupportcommunity.org
1-888-793-9355
Monday through Friday 9:00am to 9:00 pm ET
American Cancer Society
Living as a bladder cancer survivor
amp.cancer.org
Developing a survivorship care plan etc..
CanCare One-on One Emotional support
cancare.org
matches you with another person with your type of cancer
National Cancer Institute
www.cancer.gov
U.S. governments principal agency for cancer research/resources
Stay strong, youll have good days/bad days. Allow yourself to feel both, dont hold your emotions in. Telling your story here on You Tube is personally empowering and will help you in your survivorship.
Giving you these links I will look into some myself.
Btw I used to have blood clots as well there's nothing to be ashamed of. It's the nature/side effects/treatment of the disease.
You will come out of this, stay positive.😉😊
I like your arcade games in the back ground! Very kool!
Your survivorship friend,
Jennifer
How are you doing ?
it is much appreciated the testimony this wonderful gentleman that took his time to do this awesome video.....will have to go to the same procedure .....this most definitely has been a huge help to prepare and what to expect....not a simple thing though....thank you Kyle God bless you
I also couldn't pee when I went home just barely anything would come out. Ended up going to ER because I thought my bladder was going to burst they made me feel terrible when I went in they made fun of me saying I was acting like a pregnant woman. Pure pain. Everything you went through I did as well 👍
Same thing happened to me - totally unable to urinate and I was in the worst pain of my life. My wife took me to an urgent care center and they catheterized me, which immediately relieved the pain. Those people you had sound like real jerks. My nurses were very professional and took care of me very well.
As a clinical epidemiology professor at a major medical school and center-in retrospect, they should have admitted you when you had that initial blockage that could not be resolved. It also sounds as though the initial hospital lacked a urology residency program, or even urology PAs,. Either should have been called and should have seen you. It sounds like you must have seen a urologist in private or small group practice, lacking support in case of emergency-which you did have.
One can demand to be admitted under these circumstances, and this requires both firm self-assertiveness and an advocate.
I am having this procedure done in 2 weeks. I hope my experience is better than yours. Fortunately, 2 of my former graduate students are urologists (urology faculty) at my medical school, though the procedure will be done by a specialist in bladder cancer.
Thank you so very much for your insight and for kindly sharing your experience!
Foley caths are just the worst thing to have banging around inside a mangled bladder. Every time the Foley balloon touched a surgery site inside the bladder, I'd get the most painful bladder cramps for a few minutes. It's been a year and a half since my diagnosis and have had two TURBT's as a tumor came back six months after the first one. Just finished up six weeks of BCG this week and hoping it killed off those damn cancer cells lurking around.
Appreciate you sharing your personal journey with the world. Viewers should keep in mind that the journey is not the same for every bladder cancer patient.
Thank you. A first hand account that fills in the medical and emotional gaps while one goes through the process. Good Luck and God Speed your recovery.
Thanks for your video it takes alot to discuss this..I had the same procedure. Except I had very large blood clots coming out while I would urinate gross hematuria turned out I had a 6×10 tumor on my bladder wall. And told it was melegment not binine... was told it could come back and spread to other organs. I'm a survivor for now. And having a bag at home was terrible up most the night because I really needed to pee but only a few drips seemed to come out. Upon removing the turp they released the balloon and pulled it out so fast I screamed the pain was so intense I ran out of the office straight to the bathroom. This is something I'll have to try to live with it Bing melegment. Thank you and stay strong my friend I still worry it could come back at anytime but am great full that you put this out thank you again 😊
My husband was just diagnosed. This is such a great video. Thanks
What was your husband symptoms?
I completely sympathize. I'm going through a very similar experience. But I'm 78, more than twice your age. Your postings are helpful..."misery loves company." However there are some positive things you should look into. See Dr. Tony Talebi and Dr. Mark Soloway on youtube for an excellent explanation of procedures and possible outcomes. There are several postings by experts which are very informative. Also, Dr. John Bergman, who is often quite funny (which I found somewhat comforting.)
My husband came home with a catheter for 7 days (8-20-24). He was miserable. Thank God he didn’t have any blockage problems. He goes for the second surgery 9-26-24.
Couldn't pee for ages after getting out of bath. When I did it was just blood. Turns out I had blood clots. And it took a week for it to return to normal. Some nurses were good and some were bad. At this time all any one thought I had was iud. But today I found out after going through the both things from first video. Had that stuff in veins which made me very warm. Then a few hours later they took me upstairs and put a camera in me. Wasn't as bad as the catheter at first. I then was told I had growth. Which they suspect it being cancerous. So waiting for a biopsy now. This has helped. So thanks for that.
I’m so sorry you had to go through this
Hope you are doing well! Appreciate finding your story, I just had the TURBT & awaiting pathology results
Great job describing your personal situation!! It has been a big help for me . Thank you, thank you!!!!
Thanks very much for a powerful and candid account with your cancer journey! 🙏🏻
The process takes about 15 mins. But the anesthesia kept u in the hospital for 3-4 hours. Waking up from that was bad for me cos when I went home the catheter was very discomforting. Till it was removed 3 days later from my experience. Then every time I urinate it burned like crazy. That lasted for a few days before the burning stop.
Thank you, thank you, thank you for posting this. I'm going through this now and this has been a great help to me.
I’m sorry you are going through this. I hope being able to watch my whole experience all at once is not too overwhelming. Please take it one day at a time. Just think about the next step.
Thank you very much for your time and also for reliving your experiences for me helped a lot and didn’t make me feel so alone in my journey . Can relate so much to all u are saying .
Lol! This had me laughing brother! Had my TUBTR 4 days ago, now sat here with a bag of cranberry juice strapped to my thigh. My catheter has to stay in for 12 days. But yeah, pooping and erections, haha, it helps to know you got through what I am going through now. Thankyou.
You have explained this to the tee! Just had it. How are you now?
So sorry you had such an awful recovery. In the UK you would not have been discharged home on the same day as the procedure for exactly this reason. For all the money or insurance you guys have to pay for your health care you don’t seem to get good appropriate care and supportive instructions (. I’m a British nurse.)
Holly Hocks Kind of a hot topic in the states right now! :) When researching after my diagnosis, some of the most factual and concise information I found was from your NHS. Their documentation is an excellent source for proven, objective information about plans of treatment.
Nurses are amazing people. Thank you for what you do.
Just had the same treatment in the UK. Had surgery at 2pm and went home at 7pm the same day
I had that horrible catheter for 10 days and When your a woman that catheter is very uncomfortable did u pass what they call scabs cause I know I did and that shit sucks
I had that catheter both times I had bladder cancer. Yes it is so painful
Now how are you
How are you today ?
PAIN PILLS BLOCK YOU UP
I went to bed and put bag on knob of nightstand with a string!
i would be tempted to rip into hospital administration for shortchanging you on crucial self-care info and, of all things, irrigation saline--- which, by the way, can in a pinch be cooked up with a dollar's worth of distilled water and table salt from Walmart.
You are super hard to listen to. Your cadence and speech pattern is choppy and monotone. Kind of disappointing because your content is good.
Barb Jones These videos are not scripted content. It was not my aim to keep you entertained and engaged. Your comment is not helping anyone. Keep it to yourself please.
What the hell is wrong with you?
@Barb Jones , Take your mundane Toastmasters' tidbits somewhere they're requested. This kind man has posted this for people who are going through the same thing and not to tickle your ear holes!
@@bladdercancerandtreatment let's be thankful this man took his time as best as he could to explained graphically and plain english this video that will help many that wouldn't have a clue what to expect......personally I am preparing myself for this ordeal mentally .God help us that have to go through this better than dying from an eventual metastasis.
@Barb Jones. Really unkind thing to write. The man is not a professional speaker. He is trying to help people through his experience and informative content, you are very unkindly criticizing the way he talks.