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Questions for the ladies, invasive nature of BCG.

3 years 3 weeks ago #53722 by Arleeny1
Good morning Nancy,

Years ago when he had literally laughed at my embarrassment and forthcoming pain lol, I didn't say anything.
It was what I considered my initiation into the medical world of humans some trying their best and some not trying
their best to be humans. Slowly, you learn to have a voice. I find in using that voice with doctors and nurses or medical people it is humor which works the best. I think because they are able to then relate and recognize
the error in helping another. Which can at times border on some kind of horror movie, lol.

I had a chemo nurse her name tag read: Nurse Ratched. Now, what would you THINK? I thought WOW what a great sense of humor and I am one whom always appreciates the funny! But, then after sitting there laughing like a fool I was informed that truly was her name. She looked at me I looked at her no one said a word. Ever.

I wanted so badly to tell her there are lawyers whom could help her with a name change. But she had control of that needle. Happily, we moved on to " the chemo nurse from hell." She loved me and hated my husband. I
never could really understand why. He was a sweetheart. She gave him a really hard time. Did I speak up
on his behalf? HELL NO. Like I said, " she has control of that needle."

So, I am a coward. What can I say?

Yet I survived it all. The sad moments, the happy moments, the moments I thought for sure I was being
punished for something I did badly in this life or one of my other 9 lives but I put one foot in front of the other
and at times I hope I step on someone else's who deserve it!

All in all, it can be a crapshoot but what part of life is not?

You take one day at a time, you recognize even the most hardened criminals, the Nurse Ratched's,
the Doctor Frankenstein's are just humans at heart. Some with a better heart than others but I think most
people are good at heart. Quoting the famous words of Anne Frank. In spite of everything...

When not, seek justice, it works, lol.

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3 years 3 weeks ago #53720 by Nancycccslp
I apologize; still getting used to the forum. Sara Ann, can you (or another mod) move this to the "Women" section?

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3 years 3 weeks ago #53719 by Nancycccslp
Your story made me gasp. To LAUGH at your humiliation!!!! The biggest problem; your body responds viscerally but your brain lags behind. You KNOW this is wrong, but you won't be able to verbalized it right away; you need to process first.

Did you ever tell him that he made a difficult moment more traumatic by his complete lack of sensitivity? See, that's what I do, and I'm never sure if that's good or bad. I may need to process, but I'm likely to say something. It's often started with "I don't think you're aware, but...". Okay, yesterday I snapped at him, but there's a difference between a Betadine scrub and a Betadine wash, and he SCRUBBED some very delicate tissue.

My doc, the first BCG, came in, told me he was ready, then stood there, looking at me expectantly. I said "Oh, right now? Drop my pants with you here?" He sighed and said "we'll give you a sheet." BUT HE DIDN'T LEAVE. I had no idea just how crappy that would make me feel; me fumbling with things while he waited impatiently. I looooove your "porn star" line. Totally stealing.

I AM moving to a new practice. Ostensibly due to the fact that this doc doesn't offer maintenance, and "The Big Guy" in the area does (I'm only 51 and have extremely limited risk factors, so this is worrisome), but I can hardly tell you my relief to find out that in the new practice, the dr. doesn't do the BCG. All treatments are done in the Cancer Center, by oncology nurses.
I'm completing this first round of BCG with the first practice; there's only 2 to go and I'm insisting that the nurse do them. After that, I'm moving on.

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3 years 3 weeks ago #53718 by Arleeny1
Hi Nancy,

You are not alone on this. And, sometimes it is hard to find a new doctor.
I am here for a friend a male just dx'd with it. I know very little about that type of cancer.
But, I am not a newbie to cancer. I was 43 when diagnosed with Non Hodgkins Lymphoma.
I have had six relapses in 19 years. I still got a port in until, my next PET/CT's coming up. Hopefully,
if nothing is found this can come out. I will clap! :)

Nancy, I know what you are saying. I know what you are feeling.
It could be a lack of respect but, it is also, a lack of sensitively on their part.
They never walked in our shoes. Especially where it concerns a doctor. Male or female I found
it makes little difference.

I will tell you of an experience I had once years ago. It was no laughing matter. I cried.
My first onc had done a bone marrow test as an outpatient which I highly recommend.
It may seem like a pain going to the hospital but, due the the lack of empathy at times
in offices it is way better to go in as an outpatient. They sedate you lightly, you are covered up
and less pain physically and psychologically. Less traumatizing. I do think.

To go on.

This onc retired. So, i stayed with his associate. A little bit of a younger man.
Well, he did the bone marrow in his office. My husband was there with me.
I was told to literally, bend over the table and drop my pants.
Yes, he numbed the skin. Only. And, I was so embarrassed I started crying and could feel that needle
before it hit my hip. I am sorry it was no laughing matter. I was scared, embarrassed and traumatized.
And, he started saying, " she is crying i didn't even touch her yet!" and, started... laughing.

My husband didn't know what to do.

Nancy, it is not an easy but, it all is doable.
I stay with this onc, because he is one of the best and I have been beating the odds!
Would I switch to an onc with " personality" but, not the skills?
Not smart.

So, I say things when I have to. When I do not want to be exposed to others. I speak up.
I do not cause a stir, but, I have learned to become alittle more assertive and not let others
not realize they are damaging me in anyway. I will stop them right then and there.

I used to be shy. LOL.
But, like when you have a kid, that kind of goes with the wind.

But, to keep switching oncs or doctors that are good otherwise may not be in your best interest.
Just be honest with them.
Say, like I do... and, this made one laugh, " i am not a porn star."

And I do not like pain. Thank you... Honestly, honesty works.
I know sometimes, they will take shortcuts, try to save time on things, and, this is where
' KNOWLEDGE is power."

Know beforehand as much as you can,what to expect.

Wishing you the very best,
hang in there, Nancy, you can do it.
If i can, you can.

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3 years 3 weeks ago #53717 by sara.anne
So sorry to hear of your experiences . I have never been treated with anything but the utmost respect by everyone at my urologist's office . You should accept nothing less. Perhaps it is time to find a new doctor .

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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3 years 3 weeks ago #53716 by Nancycccslp
I just had my 4th instillation of BCG (TaHG here). I have found these instillations very psychologically uncomfortable. In 4 instillations, I've had 3 different people do them (yay for vacation schedules).
My own doc did #1; very rough, no Lidicaine. I didn't know to ask for it.
#2 was supposed to be his associate, but the nurse did it (quietly explained each step, used lidocaine, no pain).
#3, the associate; comes in when I'm already spread eagle (nurse I didn't know had done the prep, even with Lidocaine the catheterization made me cry out); GREETS MY HUSBAND but not me! I said "Hi, I'm Nancy and I'M the patient!" He quickly introduced himself; asked me if I had any reactions to the previous treatments. I told him chronic fatigue flare and bladder cramps with diarrhea; he goes into a whole "bladder cramps don't cause diarrhea" while I am laying there, catheterized and exposed. I interrupt him with "Maybe we can continue this conversation when I'm not exposed with my genitals in view of whomever opens the curtain." He gulps, agrees, does the infusion, and then contradicts himself by saying that due to referred nerve impulses, bladder spasms CAN indeed cause diarrhea! So what was all that then?
#4; my doc and nurse again. She was about to do the setup when he suddenly comes in and decides he'll do it. Forget about Betadine swab, he's SCRUBBING. I say "ouch" and right then he SLAMS into the side of my clitoris. I yelled "hey, be careful! That's a clitoris!!" and instead of simply apologizing, he argued with me that he didn't hit it! IT'S MY BODY. I KNOW what I felt! Even the nurse flinched! So, I gave him a fast and graphic anatomy lesson about where the tissue extends to. When he realized his error, he kept saying "I'm sorry" over and over, but damage done. From now on, only the nurse will be allowed to do prep.
It's not just that the procedure hurts/is uncomfortable. It's not just that a bit of...overzealous attention led to one sharp blast of pain. It's not just that it took a doctor a bit of time to focus on me as a vulnerable patient. It's the fact that RESPECT goes a really long way when you are so very exposed.
This is a cancer that is one predominantly composed of male patients, and male doctors. Are any other women facing similar issues?
The following user(s) said Thank You: lotech35

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