Many times lurking first post

15 years 11 months ago #15854 by Gene Beane
Replied by Gene Beane on topic Many times lurking first post
Something Wendy said is very true, I speak out about Genes cancer and the surgery very openly when amongst family and friends, sometimes I get these looks,, like of my God, but I feel it was an educational experience as well and many should know what to expect and how to be checked for it. You say prostate and everyone hides, I don't get it, it happened and he is okay, isn't that worth something, why be ashamed or shy about it, I don't intend to broadcast it on tv but for me its amazing what we can have done to survive such a cancer..they really hide when they hear me talk about how it effects the sex life, now they are in shock, but it is another part of the whole scenario, so get use to it, it to has a fix for some.
We also were receptive to the followers of Dr. Campbell, the interns, they checked Gene , proded his surgery site, checked his stoma, they were from all parts of the country, and outside the us as well...but I was always glad to see Dr. Campbells face , it made me feel secure. Ginger

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15 years 11 months ago #15831 by Melodie
Replied by Melodie on topic Many times lurking first post
I also went to a teaching university hospital and want to say that I felt I received very good treatment there...I was concerned about whether interns would be actually doing any of the key aspects of my procedure and so asked that question, and was told by my doctor, the head of the Urology dept. that he would be the primary surgeon and would be assisted by one other doctor, who I did meet a week prior to the surgery. In fact, I liked the assisting doctor so well that I have continued to meet with him for my 3 months check ups. There was a "medical team" which involved the interns who observed the surgery and after the procedure, they stopped in every day, usually twice, to check up on me, etc. It was kinda fun to have several different people wanting to know if all was OK with me.

After reading about the shortage of nurses, I was concerned about whether I would get sufficient care, and so put that question to friends who lived in my area. It seemed that those I questioned had good experiences. I found the urology floor where I was for ten days following my surgery, was very busy but always the nurses found time to care for me appropriately. I was very impressed with their sense of compassion and professionalism. \

Now, I admit, I was out for my surgery....anyone could have worked on me and I would not know it, but I choose to believe my surgeon....and being on pain medication afterwards, it could be that the nurses were not always there for me...but to my knowledge, they were, and I choose to believe all were doing the best they could for me. So, although there are very probably some teaching hospitals that aren't up to par, I think mine was. Melodie, UW Medical Center

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

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15 years 11 months ago #15826 by Melodie
Replied by Melodie on topic Many times lurking first post
L,

Sorry to hear about your lack of support...emotional support is key when dealing with BC or any kind of cancer...hope you find your new doctor is what you need and as for a partner & family support...this is all about YOU and what you need to do to survive and be healthy...if others can't give you the emotional support you need, then you need to look elsewhere...and this site is an excellent place to begin; altho we may not be in your location, some here can certainly help direct you to resources that can be beneficial for you. You need to ensure you are getting the best treatment that is available to you and stay strong. May God bless and keep you safe in His care. Melodie

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

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15 years 11 months ago #15734 by Gene Beane
Replied by Gene Beane on topic Many times lurking first post
Connie,
For me the talk about getting to a major cancer center is sound advice, the advice to seek surgeons who have done this many times and are of course the ones you want to do your surgery. Is this a guarantee, maybe not, but it beats going to a small hospital which has done maybe 2 or 3 a year, and the surgeon has little experience with bladder removal. Our experience first at our local hospital for the first turb was one thing, the next turb at the Cleveland Clinic far surpassed the care we received at the local hospital. It was quite evident the staff was more knowlegeable, more trained in this field, and knew what a stoma was....Cleveland Clinic is a teaching hospital, we got the numerous trainees asking questions, so in our case we had the major cancer facility in the teaching mode as well, I think if you read back there are several instances of patients getting the wrong treatment,
wrong stageing, and having bladder removal when they already have metastized, thats a big no no..if at a larger hospital this may not have occurred and shouldn't have.
First rule, second opinion, second rule get to a major facility teaching or not,
but if you live in bo hunk arkansas, get out of town and se the best..Ginger

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15 years 11 months ago #15729 by Gene Beane
Replied by Gene Beane on topic Many times lurking first post
L.
I have been away from the forum for a couple weeks but your post was disturbing to me. I am glad you have found a new surgeon, and if your partner doesn't shape up you may want to replace him. No oNE DESERVES TO BE TREATED AS SUCH,, it is sad there is no compassion for one who really is in need. You deserve the best of care, this is a serious issue with bladder cancer. I am sorry you don't have any relatives for support but we here can be that for you. Your situation after your first turbt is also disturbing, you shouldn't have felt that way at all and been okay after a couple days if not sooner....please feel free to lean on us as thats what we are here for...anytime,,, Ginger Beane

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15 years 11 months ago #15688 by wendy
Replied by wendy on topic Many times lurking first post

One more thing - Doctors use words like 'wart', other people underestimate the impact it actually has on your whole life; if you are able to continue walking around you must be "fine". It's one of the most problematic facets of cancer- friends and family almost never feel comfortable talking openly about it, they are scared, I think. ( When people say "How are you" I am expected to say "Fine", which I've learned to do. It's so embarrassing when people change the subject on me when I really wanted to talk about having - or having had cancer))

I was looking to find if you posted the results of the pathology report?
Take care,
Wendy

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