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new to this, looking for reassurance
Hi,
I am new to this forum and hoping some of you can provide me with a little reassurance.
My husband, Mike, aged 60 was diagnosed with a highly aggressive bladder cancer in January. They just did a RC and gave him a neobladder on Feb. 29 here in Canada. According to everyone here, we got the best doctor possible. He was trained at the Mayo Clinic and I figure they usually take the smart guys at the Mayo so we are in good hands.
The doc told us the surgery went very well and the fact that Mike was in good health otherwise made him a great candidate.
He is still in hospital and my question to you is about the nausea. He has not really been able to eat much of anything since the surgery. He is nauseated at the smell of any food and he says that nothing tastes “right”. did any of you experience this? I’m worried because he obviously is losing weight and doesn’t have much strength to go for his walks. He is managing to do at least one round of the floor he is on but that’s about it.
Any suggestions?
Also, how long were you on pain meds? I am sure that is what is causing the nausea but they have changed his meds a bunch of times and nothing seems to make it better. they keep giving him anti-nausea stuff but to no avail.
Hope I haven’t rambled on too much.
Any insight would be nice.
thanks
Monique
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9 Replies
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Thanks again Catherine. I am off to the hospital now as the docs do their rounds early here and I like to talk to them.
I am lucky because I have a great support network here so I am getting lots of help.
It will be another few weeks before we get the pathology results from the tumour, lymphnodes and prostate. We are hoping that is all clear. But I worry when the doctor says the tumor didn’t look like “typical” bladder cancer. whatever that means ;)
I’ll be checking back in tonight when I can.Monique
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You have certainly been on a whirlwind since that diagnosis, but in these cases, speed is your friend for getting BC out of the body. During that period, sometimes sanity can seem like just a faded memory. I think if there is one commonality among all of us here is that absolute shock and fear of hearing those words for the first time.
I recently learned that a former coworker had an RC back in January, got out of the hospital in 8 days, but a few days later had to go back for a while because his intestines just wouldn’t cooperate. He’s now out and doing much better. Mike is only at 10 days and it’s important to keep your expectations reasonable. He will get through it, but as you read, the Mack truck and train that hit him will take some time to recover from.
Right now it is important for you to get some rest because he will have to lean on you a lot. With that thought… tomorrow is a new day and I hope Mike turns the corner and begins to get over his nausea so he can get up and around more. It’s so important to walk to help the body wake up and start to adjust to its new “normal”.
Sending good thoughts to you both…
Catherine
Best wishes… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN
Thanks, I figured Saturday night might not be the best time to post but I can wait for some help. I just got back from being at the hospital all day and thought i would throw it out there and see if our neobladder survivors had some suggestions.
From some of the other posts I read last night, i was able to reassure Mike today that feeling like you have been hit by a Mack truck is quite normal and so is the feeling pretty depressed and “fragile” is what we call it. Tears are never too far off for either of us.
This all happened very quickly. we thought he had a bladder infection at the end of November and by Xmas he was not better from 2 rounds of antibiotics so I pushed for a cystoscopy. We were at a small hospital and they said all was fine. NOT! so, on new year’s eve I took him to the Ottawa General for a second opinion and tada, he had another cysto and they found something, sent it off to pathology and the next thing you know, it’s off to surgery to have your bladder, prostate and a bunch of lymph nodes removed. Pretty scary stuff especially for a guy who never gets sick.
I look forward to the responses I get from the other guy. Maybe this will help me keep my sanity…remember I said maybe :)
Monique
Hello Monique… So sorry your husband is having such a tough recovery. From what some of the other guys here have described, those first few days and couple of weeks are extremely difficult as you and Mike have unfortunately experienced. It is reassuring that your doctor was pleased with his procedure and things look good in that respect.
As Mark suggested, I hope while you’re waiting for some posts here, you have found some other recent discussions of issues with RC surgery right afterward. Saturday night generally is a slow night in the forum as I suspect people are doing their weekend things.
George, Mike(mmc), and a few others have the neobladder and will be along soon I’m sure. They are a wealth of information and experience.
Best wishes… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN
Yeah, I worried that the Hockey Puck reference might be lost on non-Canadians but I figured with a login name of Upnorth I might find one person who knew what that was. :)
I will continue to read the past posts.
Take care.
Monique
Monique,
Wow a hockey puck size tumor is huge. By the way I am from northern Minnesota so I know how big a hockey puck is. Now as for the rest of the group they may need to Google it. :laugh:
Hang in there. Were all in this together.
Mark
Age 55
Diagnosed BC 12/20/2011 Ta No Mo 0a Non-Invasive At age 48
“Please don’t cry because it is over….. Smile because it happened!” {Dr. Seuss} :)
Thanks Mark for the quick response. I will wait and see what the RC/neobladder folks have to say. He has been given anti-nausea meds, halidol, zofran and even good ole gravol but nothing seems to work.
That’s why I am hoping we can get his pains meds down and hopefully his appetite back. He used to have a big appetite.
At least the bonus gift is that the Dr. said his surgery was a text book surgery and went exactly as he had hoped. |Now we will hope that the “hockey puck” sized tumor that was in the bladder and was not typical according to the doc, along with the prostate and lymph nodes will all come back ok.
Monique and Mike (in absentia)
P.S. You can read through some of the past postings, while you’r here. You will find a wealth of knowledge there.
On Sunday nights we have a open Chat session, please come and join us. There are many members attending, and it can get a little confusing. But we will walk you threw it.
Remember you are not alone we can and will help your and your husband any way we can.
Mark
Age 55
Diagnosed BC 12/20/2011 Ta No Mo 0a Non-Invasive At age 48
“Please don’t cry because it is over….. Smile because it happened!” {Dr. Seuss} :)
M2stevens:
Hello, and welcome to our club. I am truly sorry that you’r husband and you have to join.
There are anti nausea medications available. I don’t know why they haven’t been given to him yet. I have not had a RC done yet but many of our members have.
They will be better able to answer your questions. Please be patent I know you have been through a lot, and I am sure they will be on line to help you as soon as possible.
Mark
Age 55
Diagnosed BC 12/20/2011 Ta No Mo 0a Non-Invasive At age 48
“Please don’t cry because it is over….. Smile because it happened!” {Dr. Seuss} :)Sign In to reply.
