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Hello I am new here…
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MZ
Sorry you had such an awful time. I am sure everyone in this room has had a day they would not like to relive again so that is what makes this forum so wonderful. You know that everyone here has been there, done that and they know just how you feel and can really understand and be supportive.
I have a coping mechanism that works for me. When I have to go through something painful or frightening I “offer it up”. Then it has a purpose other than just painful and frightening. I guess we all find our coping mechanism and you sound like you haver very good support.. As Joe says tomorrow is another day. I hope the sun is shining and you feel better today.
Blessings….Jean -
Patricia I am only here to give and get support and also share the most accurate information of things that I have gone tru so far. You may wanna take a peek at this link. Best wishes, Joe
http://www.ellisfischel.org/thoracic/lungCancer/lymphNodes.shtml
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MZ I can totaly understand your frustrations here. When I had my TUR done it was at the Univ of Penna. My wife was in the waiting room and they have monitors there for each patient they show the patient is in surgery and then when the patient goes to the recovery room. Now my wife sat there and watched different Dr’s or residents come in and out talking to others. She sat there 3 hrs and then finally went to find someone seeing I was in recovery room and now being moved to room. They gave her the room# and she went there. But in between they did not bother to tell her they took me to radiology for xrays. By this time she was really worried but found one of my DR’s residents who did give her some info on what was going on here so she had a heck of a day. They could not have apologized enough but still no reason for this and they knew it. The next day I had to back in the OR cause my ureater was blocked and the Cath they put in fell out and they had to remove that and put a stent in. This time after my procedure I think she had 3 different residents come out off and on to update her that all was well. What I am saying after she got sleep that night and the fact the stent worked we just looked on the bright side and I stayed awaked all day after this procedure we just and enjoyed our day together and decided to just look forward things happen. Hang in there tomorrow is another day and since that episode there have been no more so hang in there. Best Wishes, Joe
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Oh MZ
I am so sorry youve had such an awful time it must have really knocked your confidence.I am from the UK so really dont understand how things happen on the otherside of the Atlantic but I would ring my Consultants secretary and explain how upset I was and see if there is anyway you can get the formalities out of the way before your RC.
They would have been scraping me of the ceiling if I had been treated like you.I was a nervous wreck and still am before every procedure.You will get through this you have great support from your husband which is really important and your PMA will soom return.
Take care
Clairexxx -
Dear MZ,
My experience with surgery has always been a “Hurry Up and Wait” scenario. It has never been any different than this. But yours sounds like it was bumped up a few notches. Most of your frustration seems to have revolved around paper work. For me, about the time the 3rd OR nurse wh asks me if I know my name and birthday and to point to which side is having the surgery, I’m ready to pull IV’s out and go home. Not to mention wanting to slap someone. One time my surgery was delayed because my doc called and said he was at Burger King getting a burger. :-? Well, you know, when I thought through that one, I’d much rather have an un-hungry doctor working on me. Wouldn’t you?
To a point, I try to be as patient and kind as I can with the perceived ineptitude of those who are taking care of me in surgery. After all our lives are in their hands, and there isn’t much we can do about it.
But I can tell you one thing, when I’m just coming out of anesthesia and am hungry on top of that,
Man, Don’t Tread On Me.Sorry you had such an awful day. I know you will be glad when this is all behind you. The best you can take from this particular bad day, is to be well prepared for what it will be like with your upcoming surgery. I know this isn’t much comfort, but maybe there is a way to get the paperwork prepared before hand. Maybe you can even talk with your doc or a hospital liason about ways to make your experience smoother. After all, you have enough anxiety to deal with about what is happening with your body.
Warmest regards,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006Hi – I am back from the hospital. Today was not a good day – may I vent what happened just to feel heard
We got there about 20 mins early to have time for medical power of atty papers to get filed. We were assured the surgical floor nurses were quite able to assist getting them witnessed and filed. Well, when we got there we found the nurses claimed they were unable to do so as they provide care. The social worker didn’t respond until I should have been in surgery. MAJOR Frustration. Eventually this was completed.
Then the anesthesiologist met with us. I was ofered to have a student do a spinal or GA. He also shared how he supervised 2 ORs and would be toggling between the two.I opted for the GA and was offered some valium to relax as I was getting quite nervous. When I asked to be assured the Surgeon would be doing my surgery and not students – the valium was stalled because if I didn’t want to consent without knowing this was so. The DR had not filled in the consent form for surgery and he was currently in surgery so I got the luxury of wondering for quite some time what was happening. Eventually he came and filled out the paperwork, I got the valium and was prepped for surgery. The nurse had had an especially hard time believing that I was indeed aware of why I was having surgery – after explaining it 3 flippin times she had the DR explain it before she stopped asking me to reiterate.
Things got to running way late but I was eventually taken to surgery. The post op seemed to go well but I was ravenous and very thirsty as I had no food or beverages for 24 hours by this time. Once I had been put in a room the nurse ordered some food for me – saying it would be about 20 mins. 1.5 hours later I still had nothing was feeling quite nausous maybe from the splitting headache – but I wanted to get to the cafeteria and get something. I was told it was closed. The promises that it food would eventually come only served to upset me more. Maybe the effects of anethesia, the perpetual paperwork probs and the 24 hour no food or drink thing got the better of me – but I said I wanted to slap the dietition. At which point it only got worse.
I left there feeling confused, ill, in pain, angry, abandoned and totally freaked out. I guess there is very little latitude given to someone under extreme distress being fumbled by numerous departments. Makes me wonder how in the hell I am going to be superwoman with a 100 % positive attitude when basic fundimental needs are so botched. I feel cornered by an unpredictable threat to my life, and unreasonable expections of those who are supposed to help. I am questioning if I have what it takes to be treated like this to get treatment.
CT scan does not show node involvment…if it did they wouldn’t have to take so many out to be tested……….
MZ after my TUR I was kind of out of it but no pain as you are mentioning. My left ureater was blocked therfore my left kidney was not functioning. Well later that night one of my Dr’s residents came in and said I had to go back in OR the next day to put stent in. The last thing I wanted to hear after my Dr was in that morning telling me I needed the stent and also he thought from what he saw my tumor got into the muscle and he was right. Well this time the stent worked and besides peeing red for for a couple more days no pain just the same old burning sensation and after this procedure I was amazed I stayed awake the whole day and got to enjoy the company I had that day. I was discharged the next day and was told my urine would clear up and it did. As far as your lymph nodes you are not going to know until you have the CT scan of chest and Bone Scan these are the tests that determine if the cancer has spread to anyother organs or lymphnodes according to my Dr. I was a nervous wreck waiting for these results but I just kept as busy as possible trying to focus positive and keep my mind from wondering. I got my results 1/13 and the cancer did not spread to either thank God. I am a stage T2 and my treatment plan is posted under this topic. Having support and trying to focus positive is key in trying to beat this disease. Best Wishes. Joe
MZ…..i never had any pain after my TURB’s….my guess is you have an infection from the cath being in so long. I don’t know why some doctors do that…there’s no precedence for it unless your bleeding and it does seem very arbitrary among the uro’s??? My surgeon at Memorial Sloan took the cath out l5 mins after i woke up…my urine was clear…no need to keep it in. Your symptoms sound like cystitis to me…Call your doctor and get on an antibiotic and pyridium for the pain.
You say your doctor does 2 neobladders a week……..on how many women? Just ask…ask him for a list of the women so you can contact them to see how its working for them. I know you don’t want to second guess……but its your life….get whats right for you. God gave you the ability to ask questions. Pat
Mz
Your last post reminds me of how these diseases can cluster round families. I lost my sister to lung cancer at 38 in 2000 and my dad to bladder cancer three years later. So I know a bit about baggage! In fact, I think it was these to events that funnelled me down a more aggressive treatment path for my illness which was ongoing throughout all that. Anyway, I deal with it. It sounds like you guys are in similar territory.Your question regarding pain is probably one for the women on here. But in my 14 years there’s been no “typical” pain pattern after scopes and resections. I’ve had the no pain then loads that you describe and also no pain at all…the list goes on.
Some of the ways in which I dealt with the feelings of helplessness during my treatment were nutrition and counselling. They made me feel I was taking an active part in my treatment rather than being a passive “victim” of this horrible disease. There’s lots of great stuff on here to inspire you and ask anything you like.
All the best to you
Tim
Hi
Sorry your here we are the same age I will be 42 this year and had surgery last August.If you have any questions,fears, worries at all please free to PM me.
The pain you describe is familiar I ended up having to self cath whilst waiting for surgery and got awful cramps.
You are going through such a scarey time I found the waiting for treatment to begin deciding what to do bit the hardest of all.I ended up with an ostomy which isnt great but is now just part of me.We adapt so quickly and whatever happens quickly becomes normal however freaky it would have seemed a few months previously.
You have found a fantastic support network here I can honestly say its kept me sane over the last few months and I have so many virtual friends.Its often the only place I can voice my real feelings and fears.Family and friends have been fantastic but they worry and I fell i have to put on my brave face for them.
Take care be gentle with yourself choose clinicians to treat you that you like you will be seeing a lot of them and need to trust them implicitly and like I said if I can help get in touch I usually pop online at least once a day.
Love Claire xHi – thanks for the support and input…
I has a scope done the 12th of Dec and urologist saw nothing. Next scope on 1/29 found a 2.5 cm. Not sure I believe it wasn’t missed in 1st scope, but in any regards. The Dr in Madison said this cancer has a very high grade and architecture demanding very aggressive measures. It had a blood supply. The urologist I had said he went through much of the deep muscle to get it all. Madison Dr said bladder sparing is not an option, todays surgery is to get clean margins and see what he can use for diversion. I simply want to get to disease free and on with my life…
My husband is indeed supportive. We were baptized together 2 weeks before we wed and our marriage is founded on faith and best friendship. He lost his Mom to breast cancer and his Dad to brain cancer so he is dealing with some very heavy stuff. I was left by my previous spouse just 10 days after I had surgery for breast cancer so I guess my baggage is significant as well. As it is, we are committed to getting thru this and will take in stride what has to be to get disease free.
The Madison Dr does 2 neobladders a week at University of Wisconsin Madison. Based on his experience and the UW listing on the top 40 hospitals. I am confident in the current course of treatment. I will go crazy if I perpetually 2nd guess the cancer, the Dr and my choices. And yes, the info out there is astounding and overwhelming. I have limited myself to seeking info only from well recognized sources, and remind myself medicine is a “practice” altogether. Then I pray and give it to God so I can find some peace.
I am also supposed to have a bone scan, PET, chest CT scans. And they plan to take nodes when the bladder comes out.
Also I was wondering if how I feel physically is normal…After the initial surgery they gave me morphine as they said I was having pain from contractions post op ( which I don’t even remember). But after that and until the cath was taken out 10 days later – I felt great and mostly pain free. Then they took out the cath – I am in more pain than before the surgery and struggling to pee again. I am tender all across the low part between my hip bones unlike before. I had a baby without so much as a tylenol and have a high tolerance for pain so I am wondering what is with this.
Thank you again for the input and support. You are all on my prayer list everyday and I’ll keep posting .
What makes them sure its in the lymph nodes?…That usually isn’t discovered until they get in there. I also am female and had the same type and stage you have. My uro locally did not get the margins….i went to a major cancer center in NYC…(a get away last minute travel thing)…had a second biopsy and margins removed. This gave me a lot of time to decide on what sort of bladder i wanted. Look into the stats really well…neo-bladder works great with men …percentages not as high as women. Talk to the centers that routinely do this surgery…i’m talking over l00 a year. Outcomes really much better . I’m four years with my Indiana Pouch done laproscopically at the Cleveland Clinic. You will get thru this………..Pat
Hello
I’m similar age to you and had a cystectomy last Oct and just want to reassure you that, on that count, there is a life beyond it that’s good. There’s lots of inspiration and support here for you. It’s bad enough having to deal with the prospect of major surgery without the unknown of waiting for biopsy results. Let us know how you get on. I made myself dizzy reading literature both on the net and in books in the lead-up to my surgery. You can also freak yourself out. It was and still is important for me to remember that I’m not a statistic!
One important thing you mention is that you’re just married which means you have a supportive partner to help you through this. I would have been a wreck without the support of my partner. That will go a long way towards getting you through this.
You take care and all the best
Tim
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