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newely discovered huge bladder tumor growing very

11 years 9 months ago #4177 by Jmema
Hi Beth,
I am female, will be 73 this July, had my RC, 10-19-06. 72 doesn't feel old. It's just a number. I remember asking at the beginning "don't you think 72 is old to have an operation like this?" and now I can answer myself.....NO, it's not. I think a great deal of it has to do with attitude. I am pretty much back to my old life. I get tired, but it's only been 4 months, I have some neuropathy that I am going to physical therapy for but I DON'T HAVE CANCER (not right at the moment anyway ;)cat scan in April), I take care of a granddaughter and a greatgrandson quite often and I still wear my old clothes (shirts hanging out) shower every day and still smell of Este Lauder Cinnibar. I am sure your hubby will be just fine. It's amazing how strong we are at this age when we have to muster it up.
All my good wishes and blessings....Jean

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11 years 9 months ago #4175 by timb
Sorry Bloody about the late reply. I've been rather busy in my life at the moment and have just started back at work. As Joe says above I'm a lot younger than you. However, I've heard stories of older people doing really very well after the cystectomy and there are other factors aside from age that determine the outcome of this surgery. One of the big ones is attitude from what I've seen. Cystectomy can radically alter the way you look at yourself if you let it.

Before the surgery I was pretty scared although, as another guy called Mike on here experienced, an odd calm descended on me a week prior to the operation! I'd had a year or so of BCG treatments and 13 odd years of resections prior to this.

There's no getting around the fact that it's a tough operation. I felt great coming round from the surgery and it was on day 3 or 4 (when the epidural came out) that I hit my physical emotional lows. I think I had some nine tubes coming from various bits of my body at one point. It's grim and gruelling and there are moments when I though I'd made a huge mistake. I don't anymore and I just get on with life.

I don't want to repeat myself too much (I think I'm probably boring people on here already!) - if you search for my postings you'll find a lot of information and please PM me with any specific concerns you have and I'll do my best to answer them. Another chap - JeffG - is a bit older than me and has recently gone through the cystectomy. He may be worth contacting. He's a fine chap and very helpful.

I will tell you how I feel today after 5 months with my neobladder (give or take); I don't generally leak during the day anymore, I eat what I want and I'm back at work this week. Nights are a bit tougher but improving and I'd say one in two nights I leak now. I still have to get up a couple of times in the night though. I socialise freely and don't really have any worries about smelling of pee! I just make sure that I have plenty of clean underwear and always take spare pads and pants in my bag (I've rarely if ever needed them) and shower every day. There are days now where I rarely think about my plumbing. Although there are days when it seems a little sensitive. If I get a cold or stomach upset my neo bladder responds by getting mucousy. About two weeks after the op I thought I'd never get to this stage but I have. I swim, run for the bus and have the odd beer. I can honestly say that I feel 99% back to normal.

Incidentally there is also a new men's section for this forum if you have gender-specific questions. But please ask me anything you want to at all. I'm not bashful.

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11 years 9 months ago #4173 by Beth
Dear Rosemary,
Thank you for your prompt response.I'm new and ignorant of the ways of this Cafe.My husband s actually 71.I remeber how we used to think the will to live at this age is almost obscene..What I'm interested in is to know from people who have experienced this operation how they live,how they observe hygiene,how they walk and meet other people without smelling of urine.Doctors are not imaginative enough to empathise..Fred will have the surgery at the end of March.Tomorrow he will have the answer from Bone Mapping.
Beth

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11 years 9 months ago #4078 by wendy

Can one of you senior web cafe people direct me to a description of this operation given by a male patient who has had it perhaps or direct me to someone i can ask about it?


There are many survivor stories to be found here:
http://blcwebcafe.org/stories.asp as well as in this forum's storyboard section.

If we had all your husband's information I could ask one of our advisors for an opinion, but I have a feeling it would be the same advice, chemo and/or radiation, not surgery.

All the best,
Wendy

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11 years 9 months ago #4077 by Mike
Tim B is 43 and I know he had the surgery and is very knowledgeable about this and he most definitely at this forum someone you should speak with. He's not 81 bloody but I know he can give you alot of info on the surgery. I'm surprised he has not replied by now he usually does. Go uptop of forum click members ok. You will see date registered click the arrow and you will see names click names then another page opens ok. Then A-Z is across the top of page click T and you find him. The page shows all names that start with T and Tim is on page 2 you will see that at the bottom. Then just click his name to send him a PM you will see it there in his profile. Good Luck, Joe

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11 years 9 months ago #4076 by bloodypisher
Thanks Patrecia,

I have of course been in touch with ica, and they gave me advise and comfort, they also directed me to phone one of two rabbis who are known all over the country as specialists in finding medical specialists of any kind all over the world. This happened to be the best advise which brought me to a noncologist/urologist. Seems she deals in right subject but does not recommend surgery i wonder why...
Shall ask her soon, she did recommend chemo but as her handwriting is not readable i cannot tell you which- do doctors in the usa also insist on writing everything that way- is it the final diploma doctors get , for worst handwriting possible? ;D
Can one of you senior web cafe people direct me to a description of this operation given by a male patient who has had it perhaps or direct me to someone i can ask about it?

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