I'm Mary and I would like to share my experiences with you. First of all, it is quite normal to have the feelings and questions you have. Anyone who has been through bladder cancer and the ensuing surgery to remove the bladder can tell you pretty much the same things I will tell you.
I was devastated to find out that I had to have this surgery. I went for a second opinion at a highly regarded cancer center in Philadelphia, Fox Chase Cancer Center.
When I got the same news, I just felt like my whole world was crashing down on my head! I was angry, anxious and not at all ready to give up my bladder. However, I have three goals in this new bladderless life. First is to grow old with my husband of 48 years. Second is to see my four grandchildren grow up happy and healthy ( they are 14, 13, 12 and 7 yrs. old). Lastly I wanted to live long enough to see my daughter get married. And she did!! Just this past summer.
So, I would say to you that if you think of this as a way to continue your life as you would want to, then maybe it will be a little less overwhelming.
It has been almost two years since my surgery, and I am doing well. The process, and it is a process, of learning how to live with a urostomy is a very individual experience. I do not particularly enjoy having a plastic bag attached to my belly that collects the urine, nor do I like having to hook myself up to an overnight collection bag. One good part of that, though, is that you'll never have to get up during the night to go to the bathroom!
Another positive - you'll be using much less toilet paper, and that will help the environment!
I am trying to help you internalize what you will be doing in the future. If I have given you too much information, I apologize, but hopefully what I have said might help you.
I wish you the best and please know that I will be praying for you. Be strong, and come back to this site with anything else you want to ask.
Rochelle, Sorry you have to be with us but welcome to our community. I have had a bad cold and am late answering you I hope this is not to late. I had my bladder removed in May,06 and my life is pretty normal. I remember dancing at a friends wedding in August so I guess I was pretty back to normal by then. It is a big surgery and you should have someone to give you a hand when you get home. It was probably six weeks or so before I started feeling like myself again. There is pain but they took care of it pretty well with medication. Getting up and moving after surgery is a big help, as soon as they let you start walking do. Another thing start with simple foods as your intestines will thank you. I think the one thing that helped me above all else was how I looked at it all. The surgery was a way to be well again to put my cancer behind me, so I told myself everyday was one step closer as I healed. I never took my eyes off of getting to the other side of wellness. I hope this helps a little bit and please ask questions if you have them I will try to answer quicker. Keep us informed please.
T2 g3 CIS 8/04
Chemotherapy & Radiation 10/04-12/04
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
While I have not had the surgery, there are many here who have, and will likely be along shortly.
In the meantime, this board has two areas that can ofer information such as you seek.
The first areaa is the saved threads and conversations on this site that are germane to your question. There are many such saved files.To get to them, Click on MENU then click on SEARCH, and enter RADICAL as the search term. You will be presented with a LONG list of past conversations, many of which describe individual experiences.
The second area is material summarized from or published by reliable medical sources. To get those 2 files, click on MENU, (on the top line), then hover over the down arrow for Bladder Cancer By Stage, and finally on select Metastatic.
I hope this helps, check back for replies,
6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021
Hello, my name is Rochelle and I am 76 years old. I am having my bladder, among other organs, removed on January 16th. I would then be getting a bag since there are no other options for my situation. I would appreciate any info regarding anyone else's experiences regarding their surgeries. I am apprehensive, terrified and looking for a way out of it. I also have a few specific questions I'm hoping someone can answer.
1. I know everyone is different, but generally how do you feel after this type of surgery. How long are you in pain and when do you start to feel more like yourself again. I am worried about having to be laid up for awhile.
2. Is the surgery really horrendous?
3. If you have had your bladder removed also, what are some important things you have learned a long the way that I should know that would help me get through this?