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Surgery 1-24-07

13 years 9 months ago #3244 by clur
First of all I am sorry that you are here but congratulations on finding the best support you could wish for.
I had my surgery in August and I can honestly say that psychologically the wait from diagnosis is the hardest part to deal with.
Firstly if you have any concerns or questions you wished you had asked your surgeon I would give his secretary a ring and see if he can give you a call.Having a supportive family and friends is the biggest aid to recovery you can have.Like you I didnt want to tell everyone the extent of my surgery only close family ie husband my parents and my children know.Anyone else got a rather vague I had cancer in my bladder and the surgery used part of my intestine to replace it.I was hoping to hide the cancer diagnosis completely as I have young children but unfortunatly needed chemotherapy so couldnt.
I spent about 3 days in a high dependency unit and just over a week in hospital.In hindsight I begged to come home but would have been better staying in for a couple of days.My tips would be to get your husband to sit in on all the how it works lessons.I got myself in a dreadful flap a couple of times and if Steve hadnt known what to do I dont know where I would have been.Filling the freezer with tasty very light meals is a really good idea.Ask for very small portions of easy to digest but tasty meals it took me ages to get my appetite back.The trip home will be really uncomfortable make sure there are blankets and cushions and a hot water bottle or similar there to help make it more bearable.
There really is all sort of things I wish I had known and please pm me if you think I can help.This is the most scary thing but humans are so adaptable and we quickly adapt to changes and they soon become normal.
Take care ask loads of questions and we will allbe thinking of you.
Love Claire xx

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13 years 9 months ago #3242 by Rosemary

I think the hardest part of cancer dx for me emotionally was when the Doctor put his hand on my shoulder after the news and said, "Take care".  I'm sure he did not mean it the way I took it, but I took it to mean, "Poor You." [smiley=sad.gif]

After that, I decided that if people were going to feel sorry for me, then they would hear the facts from me first.

So, I stood up in my church and told the people that I had cancer.  When I met old friends, if I wanted them to know my condition, then I spoke plainly.  

Of course, I got phone calls from people who had never called before, wanting to compare notes about their cancer, etc.  Actually, some of it was very comforting.

I guess for me, if I hadn't been up front about my condition, then it would have fed into a denial mode for me.  I was trying to be up front with myself, as much as with everyone else.

But I am with you on this.  Having people to pity you is the absolute pits!

Good luck,

Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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13 years 9 months ago #3239 by wendy

Welcome, although I'm sorry to meet another woman here who is too young for this. It sounds like you are doing a great job of sorting through a very complicated an overwhelming bunch of decisions! There are some patient-created survival guides about what to expect from surgery for the Indiana pouch, please check the 'survival guides' section of WebCafe. The article was written by women, mostly. There is a lot of info about the options under the 'cystectomy' section as well.

Expect to be out of commission for 6 wks, of course this is a ballpark figure and people can heal faster, or slower. A good six months before you're totally healed from the surgery. You will need to have understanding from those around you...I'm all for total honesty in this situation but I also see your point. Once you have a cancer dx, people's attitudes change either subtley or blatantly. But since you are not going to hide the fact it's about cancer, why not be straight about the surgery as well?

It's your life and your decision, and you have to do whatever it takes to make this easier for YOU.
It might be hard to hide the changes that will come to your life...but perhaps you could say that they removed the cancerous part of your bladder, it was major surgery, and leave it at that. Let the others fill in the blanks. I doubt anyone would imagine you've had your whole bladder removed because there is such a lack of awareness about what happens with bladder cancer.

With the Indiana pouch many women pee standing up, facing the toilet, so you might have to overcome some shyness at public restroom stalls! You will have a catheter bag with you at all times, too. Even if you got the neobladder instead, many times women have trouble with hypercontinence post-op and need to catheterize either temporarily or even permanently. So be aware that you will be forced to be careful, sneaky even, perhaps. This could become burdensome for you if you have a lot of contact with close friends and family.

I didn't have my bladder removed, so I can't speak from experience. I know many women who have been through this surgery though, and are doing very well. I had breast cancer and mastectomy. My two sisters (one has bladder cancer and is doing very well) and father also had/have cancer. We lost two stepfathers to cancer as well and many other family members. So I'm coming from a different place than you in that regard. But I understand your hesitation. I was formerly a professional musician/singer, and came to see how superficial that environment really is, as I lost almost every friend I had after the cancer dx and my career came to an end.

I wish you all the best! Please feel free to unload here, and come with any questions you may have.


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13 years 9 months ago #3220 by timb
Hey GG

First off, I'm a man so physiologically different. You probably should hear from women but I think there's a lot of crossover so here's my bit!;I had my cystectomy here in England on 19th Oct. I have a neobladder and "void" through my usual apparatus(!). I nearly went for the Indiana pouch but my understanding from the folks here and elsewhere I've spoken with is that you learn to live with and accept your chosen diversion be it whatever. There is some info about the diversion options on this site.

I'm now 3 months or so out of surgery, I'm 43 and I just got back from taking my partner and her boy to the swimming pool. I drove there myself (its about 1 and a half hours away) and had a great time at the pool. Chucked the boy around a bit and helped him with his swimming. The experience was the same as it was before my surgery. I have a scar but it doesn't bother me to show it out personally. Though I did think it'd be a problem before my surgery. I perhaps am a bit more cautious on the flume ride at the pool if I'm honest!

I'm off to London at the end of the week, again with family, to see the sights. I fully expect to have an excellent time. I'll be more aware of where the toilets are and I'll probabaly carry some supplies for reassurance (a catheter or two - in case of blockages, some pads and some things to keep me dry at night). But, as much as possible, it won't get in my way.

I now eat pretty much what I like but try to be sensible. You'll find what "disagrees" with you in good time. My chief no go area is grapes. I drink the odd beer but never to excess. I feel that probiotic yoghurt drinks contribute to the well-being of my bowel after surgery and they are a staple now in my diet. I really think they helped me tremendously in hospital after the bowel surgery element of the cystectomy and they felt wholesome too.

My op was about 5 - 6 hours and I spent 24 hours in ICU afterwards. I felt weirdly great for the first few days and then , I guess when they reduced pain meds and the anaesthtic wore off, I felt pretty low. And then fine again. And then low again. It's a massive op and the ups and downs can be huge. There were many moments in the week or so after surgery where I really thought I'd made a big boo boo having it done.

When I first came home from hospital, I felt weak and had lost considerable weight (enough to look a bit startling!) and had various weird pains and sensations (including a numbness down my inner thigh which is still there slightly). But I spent large parts of the day "up" and could inch my way to the end of the garden (its only about 20 yards). I watched TV and had visitors and ate loads of nourishing soup. My appetite was terrible when I first got home and even looking at food made me feel ill. But day by day it got better. If my appetite plunged unexpectedly then it was usually the onset of a UTI. My partner was with me every step of the way and even got up in the night with me to help me flush my catheter (I owe her big time!). I walked and had small outings when I could. I was super-glad to get rid of the catheter 3 weeks after surgery I can tell you!

3 months later I feel totally different. My life's fine and, although I have challenges still (nighttime continence is still a bit lousy for me) they are pretty manageable. I even have my "love handles" back. Your body adapts and your mind does too and what seemed absoloutely bizarre before the surgery has become "normal" for me now. I feel way more "normal" now than I ever imagined possible prior to the op. Like you, I was aghast at the prospect of having a major organ removed and I think this was amplified by it being a bladder and a part of the body we don't normally discuss openly.

My own way of dealing with having my bladder removed it is to talk to people about it but that's my way and not necessarily everyones. The person that I am, it would add a lot of stress if I concealed it. And when people ask me about it they get the full story. I guess I can be a bit annoying sometimes! You'll find your way. I'm not sure if mine's the right one either! It seems ok though, for me.

I truly get big chunks of days now, GG, where I don't think about it. and then some occasionally when it's all i think about! I truly wish you all the best for your surgery and hope it goes really well. If my experience and others is anything to go by, you have every right to expect your life to be just as great once you've given yourself time to recover properly from the surgery. It sounds like you have a great bunch of friends and a supportive family. When I came out of hospital my partner was amazing and I really believe her love and support hastened my recovery through the first critical weeks after hospital. If you have that support, which you do, it's a massive massive plus.

This is a huge surgery but it IS get throughable

All the best to you


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13 years 9 months ago #3219 by skypilot
You will find a lot of what you looking for on this site. Have they told you about neo bladders. Use the search mode and also look at tales from the trenches. Don

Hanging in there!

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13 years 9 months ago #3218 by GG
Today is my first on this forum.  I hope to receive ....at this point, I really don't know what to expect, I need to vent and ask questions.
My problem started on 12/15/06 with what I thought was a UTI.  No blood in the urine, as I have been told, most bladder cancers present with blood.  I had horrific pain.  To make a long story a little shorter..On 12/28/06 I had a bladder resection done and the outcome was not so good.  I have a very rare tumor;  leiomyosarcoma.  After researching, I have found this to be less than 1% of all tumors diagnosed in the world and even less are found on the bladder.  The good news is I will not have chemo or radiation post op.  The tumor is contained.  The bad news is my bladder will be removed.   I will have an Indiana pouch, requiring no appliance, etc.  I will need to cath. myself several times daily.  I have not talked to an ostomy professional yet, so I have a lot to learn.  This is so new and foreign to me, I know I'm not using the correct terminology.  I'll catch up with you eventually, I'm sure.
I am a 58 yr. old mother of 3 adult sons and grandmother of two little boys.  I have been married for 35 yrs. and my husband is totally supportive, but is as scared as I am.  I am very physically active, therefore, we opted for the Indiana pouch.  I have no other medical problems that will complicate the surgery or my recovery.  Although, I know I shouldn't rule out complications completely.
I live in West Virginia, my surgery will be performed at the Cleveland Clinic.  Being so far away from home will be a real bummer, as I have a wonderful support system here in Charleston.  (Friends have already started filling my freezer with food for meals upon our return from Cleveland.)  I feel we have made the correct decision in going to Cleveland for this surgery.  
One of my dilemmas is that I don't want to tell 'people' my bladder will be taken.  How do I handle that?  Am I wrong in not letting 'people' know (other than my immediate family), even those who care deeply about me and my well-being.  I have told them my surgery will take 6 - 7 hrs....."the surgeon will have to do a lot of reconstruction."  I have used the word cancer with them, but it's such a private matter, I can't talk about the bladder removal to my most trusted friends.  I don't want pity.  I do want support and hugs. ...which I have gotten plenty of.  

I have a loving, supportive family.  I have five siblings (I'm #5 of 6) and I am the first who has had the big "C".  This has totally knocked the feet out from under them and their spouses.  We are extremely close.  We are all devoted Christians, which has been the source of my strength, thusfar....and, will continue to be throughout this ordeal.
What can I expect post op?  What can I expect with the Indiana pouch?  Or are there those who think I have made a bad choice?  Has anybody on this forum had surgery at the Cleveland Clinic? Will I be in ICU post op?  If everything goes well, how long should I expect to be in ICU?  (Those are some things I forgot to ask the surgeon...I was a little shell shocked at the time) When will my strength return post op?  Will I ever feel or be 'normal' again?  
I need help and assurance...if that's possible.
Thank you in advance...

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