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Freaking out!!!

I'm pretty up and down at the moment. Back to being very worried about CIS, it's hard not to worry. I'm trying all the techniques but I think that on top of it all I had worked myself up to it all being ok and then the news yesterday kinda shot me down.
 
Castiel said:
I did ask to read my notes (properly) but apparently they don't allow patients to do that...for obvious reasons I suspect.
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It is your right to. It is their right to redact stuff. Most sensible people would allow a patient to on the proviso that it is done together. Nursing notes you have the right to read without an objection.

And I think we know by now if you'd have recognised the other stuff you'd have looked that up too! :D

Good to see you being more upbeat about things. Even with the odd lingering worry.
 
5punk3monk3y said:
I feel for you. Don't read further if your woried :)



36 hours ago I was on the operating table having a double J stent removed and a 7mm kidney stone lasered. Every trip to the little boys room so far has been crimson and painful. I had the stent for 5 months and during that period there was varying levels of blood in my urine. It's very worrying at first but eventually i got used to that but the stent side effects were terrible. Urghhh so glad it's over. I still have 2 kidney stones left in each kidney but I'm on the waiting list for the shock wave therapy to break them up.

Good luck
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I have a JJ Stent at the moment, put in on Tuesday. Lots of blood and feels like I need to visit the loo every half hour or so, it's not very nice.
 
Xordium said:
It is your right to. It is their right to redact stuff. Most sensible people would allow a patient to on the proviso that it is done together. Nursing notes you have the right to read without an objection.

And I think we know by now if you'd have recognised the other stuff you'd have looked that up too! :D

Good to see you being more upbeat about things. Even with the odd lingering worry.
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The consultant was in and out, he didn't seem worried and from what I remember and the nuse in recovery said, he isn't concerned. I am though and would like to have had some time to ask questions. I wish I hadn't read what I did though.
 
I'm still waiting on the results. I called on Monday and the consultants secretary said they had the pathology report but waiting for the consultant to review it. She said she would hurry him along. I called again today and was told that he might call tomorrow as that is when he normally does his admin. I'm not sure if that's good it bad. I'm a total basket case at the moment.
 
Castiel said:
I'm still waiting on the results. I called on Monday and the consultants secretary said they had the pathology report but waiting for the consultant to review it. She said she would hurry him along. I called again today and was told that he might call tomorrow as that is when he normally does his admin. I'm not sure if that's good it bad. I'm a total basket case at the moment.
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fingers crossed for good results man!!
 
Castiel said:
I'm not sure if that's good it bad.
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It's neither it just means he's a law unto himself. You know the joke - what is the difference between a surgeon and god - god doesn't think he's a surgeon.

I am sure everything will be ok and whatever is thrown at you for better or worse you will rise the the challenge and overcome it.
 
Xordium said:
It's neither it just means he's a law unto himself. You know the joke - what is the difference between a surgeon and god - god doesn't think he's a surgeon.

I am sure everything will be ok and whatever is thrown at you for better or worse you will rise the the challenge and overcome it.
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I have ups and downs. Today has been one of the worse downs. Almost as bad as my depression so I took a diazepam and have calmed a bit.

I'm sure you are right, I'll deal with, I'll have to, I have an obligation to my wife and son to ensure I fight whatever the outcome. I'm being irrational, I know it but can't control it. I can't work or think and I'm sure that is just making my psychological wellbeing worse.

On another note and this isn't a diagnosed or anything to be taken other than anecdotally, I'll be pretty unlucky though after (a friend of a friend) another doctor explained to me that having BC at my age and risk factors (virtually none) is rare enough, but having what she called Initial Pure CIS in the bladder (and especially accompanied by a Renal Pelvis CIS with an initial negative washing cytology) would be enough to get any top urological oncologist highly interested which is why the urologist is saying he is unconcerned. She said red patches are common under cystoscopy and while it is obviously very worrying she would lean toward a positive outcome.
 
It isn't as bad as your depression - what you are feeling - is most likely depression. There is nothing wrong with admitting this and seeking help. What does your wife think?

You have an obligation to yourself, first and foremost, to accept whatever may come to pass and deal with it. Some things have to be endured not fought against. The old reed bending in the wind analogy. If you are not fulfilling the obligation to yourself then you are merely pretending to fulfil it for others and that means you won't do a good job because you're bottling it all up again which will lead to more problems.

You will have to wait for the results. You can't fall down if it is what you fear you need to have plans to deal with that. We are all effected by the incredibly rare every day. You can't rely on luck - life doesn't work like that I am afraid.

Is there still pain - is it getting better or worse - is it tolerable - is the oxybutinin helping the bladders spasms etc - these are things that need tackling to make life more tolerable so you can focus on the other stuff. If they are not then go back and get some more meds - you know the two I mean - ask the urology team etc.

You've just got to go to bed tonight and stop moping and just look into the mirror and say "**** it I control my life" set your alarm get up tomorrow and just do what you can do all day and control what you can and forget the rest. You have to treat this like a physical fight and atm your fears are standing over you whilst you are sitting on your rump. Now you wouldn't take that from any other person would you so why take it from yourself, eh? Come out swinging and the best way to do that is move forward with tasks you can do and ignore everything you can't control.
 
My symptoms are improving. Bleeding seems to have virtually stopped and the other symptoms are better, the oxybutinin is helping a lot. I can't really drive or do too much though as the stent gives me a lot of gip if I do.

I know you are totally right and sometimes I actually feel like I can take on what ever happens and then others I'm just a basket case.
 
So as I still had no results or getting anywhere with the hospital, I visited my GP today who called the histology dept himself while I was there to get the results directly. A lot of medical jargon about cells, but essentially both mu cytology and biopsies of my bladder were negative for cancer or anything other than some inflammation.

My GP said that at no time was there any real suspicion of cancer, just ruling out. He said he had a legally defined responsibility to tell me if there was any such suspicion, and that my kidney, which still needs looking at is expected to be fine as well. Current thinking of the urologist and my GP is that I contracted a virus, he said it's rare but it happens.

So good news. (Stent is giving me lots of trouble, but nothing the doc can do unfortunately)

Thanks for the support, especially to those who contacted me privately and very specifically one person whose help was invaluable in helping my standard of living...you all know who you are.
 
Good news :)

Take a deep breath and relax a little, sounds like this episode has been a total and utter hell, (it was with me when I had a lump on my nuts that turned out to be a cyst.. but it SUCKED waiting to find out)

One problem I had - that you *might* is actually accepting the results, and putting it behind you, for quite a while I was freaking out that I still had problems, it did take me a while.

Glad to hear it's all sounding harmless and benign. :)
 
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