Scared

16 years 3 months ago #11948 by mikeg
Replied by mikeg on topic Scared
Having come thru surgery 6 weeks ago, I agree with Zach, that the finite pain was easier to deal with than the imagined pain and was actually very managable. I was allgeric to the pain med and the first night I itched like crazy...it was worse than the pain. Luckily it was straighted out the next day. My nurse at Hopkins kept on saying "there are no martyrs on this floor" encouraging me to use the pain button as often as needed. I stopped after 2 - 4 days as my bowel functions became more important to me than the minimal pain. I was worried that I was going to come home on the 3 hour drive doubled over in pain and that was not the case at all as I had no pain at that point. The real problem was my leg bag overflowing and wetting my pants...something I never anticipated...and no big deal.

Again that was me and everyone experiences life differently.

Good Luck!

Mike


Michael
Age 58
Stage T2-T3, muscle invasive
Married to Eileen
2 sons, ages 20 and 23

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16 years 3 months ago #11935 by Melodie
Replied by Melodie on topic Scared
Carolyn,

My heart goes out to you...I was dx'ed last March, had my TURB done, spend the next 6-8 weeks doing research, getting a 2nd and 3d opinion, all doctors agreed that I needed 3-4 months of chemo and then have the bladder removed...my cancer was into the muscle but just barely...I asked if they would consider a "partial" RC but none of the doctors would even consider that idea due to the fact that BC so often returns. So I looked at my options and of course wanted to lean towards the neobladder...in my area I could only find one doctor who did neobladders on women and there were only 7...and when I called to talk with them, all had to cath themselves...in fact, that is what they were told to expect. Like Pat, I wasn't willing to go that route. I got my Indina Pouch late in July. I thought I would be repulsed by the idea of a stoma but from the very first time I saw it, I had a sense of loving it which is really strange because I have never been in love with my own body before...anyway, mine is located not in the belly button but nearby and I lovingly call it "Rosebud". The first time the nurse showed me how to cath, it
all seemed very natural to me...like it was meant to be.

I was 56 and never had a serious illness of any kind and not used to being a patient. It was very tough...the chemo and then the surgery...then the adjustment to peeing in a new way and taking care of "Rosebud". I've had my struggles and thank goodness for the wonderful folks on this forum...they have helped me alot, especially Pat and Holly...anyway, here I am almost five months later and doing quite well...I still have to empty every 2-3 hrs. during the day but at night I can make it six hours which is better than most who have their orginial bladders.

So guess what I most want to share with you is the idea that you are and will continue to be challenged but you can decide to be a warrior and win this battle. We never know how strong we are until faced with such adversity. And we can ajust as need be. You will feel better when you have a plan in place...its the decision making process that is the worst...and then we wonder if we have made the right decision...take the time to research and then be satisfied that you are making the best decision based on what you know. I will keep you in my prayers. Melodie

Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright

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16 years 3 months ago #11842 by El
Replied by El on topic Scared
Hello Carolyn, I am 66 years old and I had my sugery March 2, 2007. I got the Indiana Pouch in Memorial Sloane Kettering with Dr. Bochner. After the surgery I was not a very happy patient. My daughter kept telling the nurses my mother is really nice. I hurt and everybody knew it. My surgery was 9 hours, I also had a hysterectomy. I was in the hospital for twelve days. I am doing good. I saw my doctor Wednesday and he is very happy with me and his work. I haven't gotten infections. I use my telephone as my timer which alarms me every 4-5 hours during day and 5-6 hours during the night. My stoma in in my bellybutton. Everyday I think less about it, I feel sorry for myself sometimes but I look around and some people have it much worse. I come on to the forum and read what others are saying which helps me. If you would like to speak to me by telephone I would be happy to call you (I have unlimited calling plan). I cried and grieved for my bladder also. Be gentle with yourself. Ellen

trying to learn how to take one day at a time.
RC March 2, 2007
Memorial Sloane Kettering Hospital

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16 years 3 months ago #11836 by Maria
Replied by Maria on topic Scared
Hi Carolyn , I can relate to your concerns. I am recently diagnosed and seeing specialist doc for first appointment on Thursday. I have done lots of research and have devised a list of questions. I have waited several weeks for this appointment and my fear of the unknown provokes anxiety, irrational thoughts and periods of depression.

I felt very lucky to find this forum, its a great place. Others make you feel very welcome and offer reassurance and will not gloss over any details. It offers a huge resource of information for both practical and emotional support.

I know that I have to make decisions about choice for type of bladder replacement. I have found your posts very interesting and the replies have been informative for me.

Carolyn I want to wish you well for your pending surgery. It will be so helpful for me and others facing surgery if you would be kind enough to keep us updated. I to am very scared and like you I am crying a lot and totally understand where you are at right now. I hope you are feeling better after the support that has been offered to you from this wonderful family!

Maria xx

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16 years 3 months ago #11790 by Zachary
Replied by Zachary on topic Scared
Carolyn, it *is* a rotten choice to have to make. There is definitely no getting around that fact. Right now, though, it's the hand you've been dealt, and it's time to get clarity about your situation.

If it's important to you, ask your doctor about the possibility of bladder-sparing procedures. Ask to talk with other women who have gone through something similar. Not just by email or a forum, but voice-to-voice over the phone. Maybe even in person. I can't imagine anything more comforting then meeting someone who has not only gone through what you're going through, but has come out on the other side. I've been fortunate enough to talk with a couple of men here over the phone, and I could literally--and I do mean literally--hear the tension and fear in their voices almost vanish by the end of the call. Sometimes just talking with someone is all it takes.

Write down every one of your questions and concerns for your next doctor visit. If you think you might be too upset to ask them, bring along a friend or family member. That way you'll know exactly what to expect and what's expected of you.

You wrote that nothing can be worse than this waiting. Actually, I think there is something worse, and that's waiting with the fearful uncertainty that comes from unasked and unanswered questions. I think you'll find that when you get your questions answered and a plan for your treatment and progress, the fear moves into the background like a shadow moves away from light.

Mark Twain said that when he got up, the first thing he did was read the obituaries, and if he didn't find himself there, he got dressed and went to work. It's up to you, now, to get dressed and go to work. Your job is to get knowledgeable, to get treated, and to get better.

"Standing on my Head"---my chemo journal
T3a Grade 4 N+M0
RC at USC/Norris June 23, 2006 by Dr. John Stein

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16 years 3 months ago #11788 by Joe M
Replied by Joe M on topic Scared
You'll be hooked up to a morphine pump, with a " give me more " button.
If need be, they can always give you a shot of Demerol or something extra.

You are gonna be sore, no doubt for a few days.
So take the pain meds, ask for them...do not suffer.
It's not worth it.

In fact, the worst part is not eating for days, as your intestines have to heal, if you are getting an illeal neobladder reconstruction. It's not the surgery pain, it;'s the tube in your nose removing anything in your stomach, like saliva.

They do not want anything getting into your intestines.

That was the worst part...although I did lose 37 pounds in about 10 days.
Not quite the best diet plan, but there's a positive for you!

Be extra nice to the nurses, you'll need them to advocate for you a few times.
PS: They like chocolate.

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