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10 years ago-having a Radical Cystectomy

5 years 1 month ago #46958 by GKLINE
Bella
I know how you feel about sharing feelings with family. I am not a touchy feely kind of person but this is very different.
You need a shoulder to hang on to. It is time to have a "sit down" with your husband and share your feelings. Ask him how he made it through his cancer. Get him to share his story about what went through his mind during that period.

Also remember that it is very OK to "have a breakdown" It can be very theraputic for you. Sometimes you just need to "Let It OUT!" and then you gain a new perspective on the whole situation.

Being German and being tough is a facade(I can say this,I am German too)
Everyone needs a shoulder to lean on. You may find the same thing I found out when I was going through this....... My relationship with my wife became so much more fulfilling when we talked our way through the cancer. At first it was a little tenative, but then we realized we needed to be a team to beat cancer. And the only way to be a good team was to communicate our feelings. It worked!

The Radical Cystectomy is a big operation and it will require a rather long recovery period. It is going to change things for you. I remember a moderate amount of pain, but not too much. You will get bored in the hospital, and you won't get too much to eat, if anything.
You will need to start walking the day after surgery. Chew gum(but DON'T swallow it) and I suggest a pair of earplugs.(Hospitals are the Noisiest places on earth)
When you get home, you will need your TEAM to help you. I don't know about Australia, but there has to be a medical source that can help you out as you get accustomed to the stoma.

And last..... I now give you permission to be a little selfish. This is happening to you and you have the right to be selfish. Not too much, but you Can demand a little comfort. A little alone time to collect yourself. And... It is OK to get emotional. This is really a Good thing for you. Theraputic even.

The Best of Luck to you

George Kline(Little)

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]

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5 years 1 month ago #46957 by Bella
Thank you Knut
Yes I am German and I live in Australia Perth I have no family left in Germany all my boys and they're wives and grandchildren live in perth so that is good
I don't know if that is the German coming out but I am not good in sharing bad news so most of it I keep to myself
I am so glad you made 10 years and I hope many more it is possible the doctors are wrong I hope so
Love Anke/Bella

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5 years 1 month ago #46956 by Knut
Hi Bella

I'm the one that "celebrated" 10 year without a bladder.

I know how you are feeling now, and that you are scared.

You and your family must have been through a tuff time with your husband having lymph-cancer, and now you with this.

After the surgery it will go some months before you fully recover and get used to live with the bag on your stommack. But I promise you it will better eventually.

Are you german and living in Australia? Where will you have your surgery?

I live in Oslo, Norway and had my surgery here.

I cross my fingers for you, and please let us know how things work out.

Sincerely,
Knut

Diagnozed first time April 1th 2004.
Muscle invasive, T3A.
Radical Cystectomy June 29th 2004.
Illeal conduit. Bag on my stommack.

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5 years 1 month ago #46955 by sara.anne
So sorry to hear your news, Bella. You have some difficult days ahead of you.
BUT there are a lot of people out there leading happy, comfortable, and fulfilling lives with no bladder. You can't just give up then you have so many good years ahead of you.

Make a list of all your questions about the surgery, the recovery, and the future and take it with you to the surgeon and ask them. You will feel much better when you have all the information.

Then take a deep breath. You have no doubt had tough times before, raising children, your husband's illness....you CAN do this.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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5 years 1 month ago #46952 by Bella
Thank you Catherine

I will see the anethtist on Thursday have to think of things to ask him
I am so confused as I had only 5 weeks to get my head around the fact that
I have this cancer
Only last year I nearly. Lost my husband he has non hodgins lymphoma that developed in to hemolytic anemia he was 5 weeks in hospital and it was not easy he is doing well now I had booked a holiday to go back home to Germany we'll that had to be put on hold.
Not only do I worry what is going to happen to me I don't think he is coping to well
I have 3 boys and tears are not present in my house so I don't know how to sit in the corner and have a bad day I have to be strong for all of us.sorry about my spelling but English is not my strong point.
Back to what do I ask I have know clue and I don't know anyone with this kind of cancer
Can't talk to my best friend she is Japanese and her English is not good I'm so glad I found your forum and there are people with the same problem sometimes when I sit in the lounge at 1or2 in the morning I think is it not better to take the year the doc tells me if I do nothing that is the time I would have left with the operation 60/70 percent for 5 years you can see I'm totally confused never mind we will see what happens
Sorry for writing all this Germans should be strong that's what I have been told and you don't show emotions but that is me
Love Anke/Bella

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5 years 1 month ago #46948 by CatherineH
Hello Anke... I know you are very scared and apprehensive about your upcoming surgery. It's a big step and there will be an adjustment as you learn to deal with with having a stoma and bag. Losing your bladder is a hard thing to accept, but at the same time, you will be getting rid of the cancer too.

I have not had bladder removal... they only removed a small portion of mine which was called a partial cystectomy since I had a different type of cancer than yours. From what I have understood from others here, the surgery will take a few hours and you can probably expect to be in the hospital from 7 to 10 days depending on how quickly things start working again with your bowels, etc. The bag diversion is the least invasive of the diversions, so hopefully that will mean a little shorter stay.

Have you discussed this with your surgeon? Your questions are things every patient facing major surgery would want to know. Is it possible to call the office of your doctor and talk to one of his/her staff? They should be able to give you more information.

Also, I want to add that we do have members who who have the external bag and they do quite well. I don't know about stoma care, but in the USA, there are nurses who specialize in caring for stoma patients and teaching them what they need to do to keep everything healthy. I'm sure you will be shown how to take care of yourself before you leave the hospital.

I'm sorry I don't know more about your upcoming operation but I hope this helps just a little bit. Please let us know how things are going and keep asking questions.

Best wishes... Catherine
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TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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