Joining the BC Club. Episode 1.

9 years 9 months ago #39817 by rbmc
Joining the BC Club. Episode 1. was created by rbmc
This will backtrack on my journey of joining the Bladder Cancer Club, and will be part 1 of 3. I’m still a Newbie at this, but would like to share some of the experiences behind me now.
It all started back in late Feb 2011. Coming home from an afternoon Genealogy research trip, I hit the potty. My goodness…….BLOOD, lots of blood in the urine. The toilet was bright red. That continued for a few more times. A bit concerned with how much blood, it was off to the ER. Boy, was that a waste of time. Their advice? Go see a doctor! Hello there, aren’t YOU a doctor??
Well, by morning, the bleeding seemed to have stopped. At least visible blood. No pain involved. I had just switched to a new doctor, and my first appointment was in 10 days. With the symptoms gone, I decided to wait.
The introductory doctor visit went fine. After mentioning the problem, he did a quick urine sample. Ah ha, traces of blood were still there. He said this needs attention, and advised of several possibilities, including cancer. He also briefly described the cysto procedure as the method used to get up there and look around.
He recommended and set up an appointment with a local urologist, another 10 day wait. That was quick and easy. Another sample indicted blood was still present. Yup, we have to get up there and look around. My case was indicating a high probability of cancer, not an infection. A cysto would confirm this, and surgery would remove the cancer. No over anxiety at this point, they hadn’t looked yet. Outpatient surgery was scheduled. Another 10 days. Ran the gamut of pre-op tests. Xrays, CT scan, lab work, and the EKG.
Here we go. I stayed local, and the hospital is a 5 minute walk away. I did have to arrange a ride home. Check in was 6:30am, the normal 2 hr prior to procedure. Got comfy in the bed, with the typical barrage of medical questions. The doctor finally popped in to say good morning, wearing his expensive zoot suit. Not dressed for work yet?
Well, I was the 2nd patient on the list. But the first patient apparently had some problems, creating a delay. I laid in that bed for almost 4 hours, waiting. UGH. A nurse finally came in to apologize for the delay, and it was now my turn. Wheeled off to the operating room, it was lights out for me!
The awakening found me in recovery, another waiting period. Then it was finally back to the room to be observed for another hour. This is when I noticed I was hooked up to some extra equipment ….. a tube from under the sheet, running down to a bag hanging on the bed. No explanation why. The pain was minor, and the nurse asked if I wanted a pill. I agreed, and took it. DON’T DO THAT!! Not covered by insurance, it’s a ploy to make money. I got a bill for that one pill, listed as a “self administered drug”. Hold off for a bit, and get your prescription filled. You’ll get a 10 day supply, cheaper than that one pill.
Deemed stable, the nurse said it was time to go home. I called my ride. Oh, by the way, let’s put on your leg bag. A quick procedure as how to hook that up. This thing was coming with me. Your appointment to see the doctor is in 10 days. Bye Bye.
The doctor never came back to say anything? The nurses were mum? I was discharged, and didn’t have a clue as to what had happened this day. Except I hurt, and had a bag for some reason. Something is wrong, I know I’m going to die?? Unprecedented anxiety set in on this late March afternoon.
OK, let’s move on to the home scene, the start of a weekend too. Settling in, I alternated between the TV recliner and the computer. With the hoses and bigger nite bag, I set up camp in the living room for the next 10 days. I toss and turn in bed, and would surely rip out a hose! Sleeping on the couch was more viable. Shortly, an urge to pee was arising. Let’s test out this new system. MY GOD ……… grab the wall, grab a chair, grit your teeth and hold your breath. OUCH. Man, did that hurt. And the pain lingered for 15 minutes afterwards. How can this huge pipe, bigger than my natural tube, make the act so painful? Seems like it would flow freely? I sure don’t understand the bag system! This painful process endured the full 10 days. Strangely, in the morning, the night bag had liquids, but I never felt a thing while sleeping? And, the contents were red. It was a long weekend.
Monday morning …….. let’s get back to work. Great boss, who limited my normal activity, but I could still be productive. Except during periods of elimination. Finally, the office is open, call that dang doctor. Hey, I’m wearing a bag, bleeding, and it hurts like hell. What’s going on here? Such a simple response: you have had surgery, some tumors were removed, bleeding is normal and will subside. Urinating will have “some discomfort”. The doctor will review the biopsy report and discuss it with you next week. Like, this is no big deal. To me it is!
I got used to the new system, but the 10 days moved too slowly. Appointment day finally arrived. Good morning patient, let’s get rid of that bag. A 30 second procedure, and out came the tube. Had to remember not to embarrass myself, and forget the bag wasn’t there anymore. Ha. OK sir, some small tumors were removed, biopsy report is positive for cancer. Medium grade, non-invasive. See you in 4 months for a follow-up procedure. Oh, and take it easy, you did have surgery. Bye.
That was it. Damn, I have cancer. Now what? Do you treat this thing? And you wait til 10 days after the surgery to tell me to take it easy? How easy? Hell, I have been working. What a non-communicative professional. Fortunately, I had a follow up visit with my other new doctor the same week, who also got the report. He took the time for some intelligent conversation, opinions, and advice, which helped relieve the anxiety. Thank you. Basically, the timing for cancer was quite good. It’s in the early stages, and better yet, non-invasive. But prepare yourself for a long term journey, as bladder cancer will require a lot of monitoring via exams, and potentially more surgery. Try to keep yourself on the lucky side.
Being introduced to the “C” word was frightening. But things are settling down a bit, and better to be focusing on my own particular situation. About the same time is when I bumped across ABLCS forum. More good conversation and advice for different bladder cancers. I registered, but never participated. As I learned more, I kept coming back to “lurk”, finding answers to other questions. One thing for sure, if you have found this forum, you’re probably a member of the “BC Club”. There’s nothing embarrassing about it. Learning the best way to deal with it and seek proper medical care is more important. Now, after 8 months, and having some things behind me, I finally decided to share the experiences. I’m a Newbie, NOT a been there/done that expert. And I still have questions. Taking that first step to stop in and say hi wasn’t so bad after all.
Episode 2 will cover my 2nd follow-up procedure, after 4 months, done in July. Hope you’re not getting bored. Thanks.

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9 years 9 months ago - 9 years 9 months ago #39818 by CatherineH
Replied by CatherineH on topic Joining the BC Club. Episode 1.
Hello RB... Your Episode 1 is very well written and entertaining to read, although I know when it was happening there was little humor to be found in the situation. What a gift hindsight is in that we can pull out the funny moments from all the pain and fear and choose to remember those to make our situation more tolerable.

This is definitely a club we would never have chosen to join, but are so happy to find a place where there are people "like us" to share our individual experiences with. And these people "get it." They understand what we went through and empathize with each subsequent checkup or treatment. It's a great place to hang out when you need to ask or share most anything.

Look forward reading to your next episode...


Best wishes... Catherine
Forum Moderator Team

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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9 years 9 months ago #39855 by jimswife
Replied by jimswife on topic Joining the BC Club. Episode 1.
Excellent reading, I will find part 2 of your adventure. i am sorry you had to join this club but this forum is great as you have already noted. It is a font of information, support, caring and when needed a boot in the behind to get you to do something!

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9 years 9 months ago #39857 by rbmc
Replied by rbmc on topic Joining the BC Club. Episode 1.
For me, the "start" had the least anxiety. They hadn't even looked yet, or found anything at that point. It's a wait and see thing. Not til afterwards do you go nuts, knowing something is wrong, and waiting to find out the diagnosis/prognosis. I consider myself a "very lucky" member of the club. And yes, in "lurking", one of the best things was finding people who "get it", and sharing from a multitude of cases. Thank you.

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9 years 9 months ago #39859 by rbmc
Replied by rbmc on topic Joining the BC Club. Episode 1.
yes, the individual situations are amazing, yet here there seems to be someone with advice/information for each one. Much better than random searching for random answers. And if you're in the "Club", the boots are intended to get you the best attention possible. Thanks, I appreciate your comment.

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9 years 9 months ago #39898 by GKLINE
Replied by GKLINE on topic Joining the BC Club. Episode 1.
You captured the Journey as well as any we have seen. I already kinda know the next 2 chapters, But You HAVE to write them. You tell this story so well that others need to read it.

Welcome to the "club"

The fact that you are here to tell the story speaks volumes.


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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