just venting

Hi Lorrie, Just got back from the Cancer Clinic Dick did not want to anything else except come home.
I find him to be more and more passive about doing anything. A friend who saw him Saturday told me today that he didn't seem interested in anything. Dick then said the pain he is in is all he can focus on. I'm working on accepting that I will have to monitor everything. I go to all the appointments so I can facilitate getting whatever is recommended. I can't imagine trying to work too.
What a blow to have your own family shut you out. I am wondering whether to speak to our "friends" how they are making it evident that we are being excluded. Sometimes 60 and 70 year olds can be as aggravating as 12 year olds.

Hi Julie- Just a quick note as I am going out the door. The continence nurse has suggested a condom catheter, which might be easier during the day. Bob was supposed to pick up something to measure his penis with---just another example of "if I don't do it for him, it doesn't get done".

Oh can I ever relate to not being invited. For over 30 years I had every Easter, Christmas & Thanksgiving plus a few Birthdays thrown in for good measure. Last week for Easter, my sister ( I have 3)had Easter & invited everyone except us.Nice eh?

Gotta go & finish painting an apartment- Lorrie

Lorrie, I could write and say what your are saying. I have to do it all these days and most days I feel it is beyond my capacity. Or I could write about the people who don't invite us to come over or who tell us we will get together and then forget and go for a ride instead. I was feeling very hurt yesterday when this happened.

I read all the time about people getting chemo and wonder why they don't recommend it for my husband. I am truly amazed it is taking this long to decide if they will offer it to your husband. I understand to be truly miserable try chemo. I have a friend who had terrible neuropathy after hers.

On another note if the Dr. think your husband will not become continent have they suggested he wear a Foley catherter?
Dick wore one for 9 days this month after his hospitalization where they messed up his medication so he had a gout attack and withheld his prostate meds so he couldn't release urine. It was certainly easier to manage than the time your husband is having with incontinence. Next time I will be much more forceful with the Dr about them giving him all his medications that he is prescribed. Julie

Lorrie -- You are so articulate! Thank you very much. I'm Susan, stage
4 but blessed (for now) with feeling well. Many mets in liver and lungs
though. I worry that evey little twinge (a cough, bowel changes) signals
the beginning of the end.

How am I handling the situation? Because of so many people's inability to ask
about and invest in caring about people with cancer and their families
(presumably because it would hurt too much)-- as you so clearly articulate,
bless you -- I spend most of my time "Passing for Well." I take extra case
with attire and grooming, plan in advance to walk with an energetic gait,
and certainly not let on that I wear diapers when I'm be away from home
any more than an hour.

When people ask how I am doing I say one of two things: (1)"I feel well today,
how are you today" OR (2) If I feel sick "I feel pretty low energy today, how
are you today?"

I surely worry about the days to come when I won't be able to fake it and the
acting and its pressure may be passed along to my family caregivers. May they
find the strength to be direct!

I do have a very few friends/relatives off and many fellow sufferers on the forum
who do care and express it -- even risking me "getting mad." Bless them all!

You vent very well, I wish I could "let go" like that better --

Appreciatively -- Susan

Dear Lorrie,

I recently had an operation to remove scar tissue from the neck of my new bladder and uretha and luckilly for me it was a success.

My urologist said that it came from a poor bladder to uretha connection from my RC performed by another Urologist.

Prior to this latest surgery I could hardly urinate at all and it was a strain and an effort to empty my bladder which usually took 15-20 minutes.

What Bob is going through right now is awful and I can appreciate the stresses involved on both of your sides.

You mentioned they could operate to try to correct the problem which I hope you guys will consider if not at least with another Urologist. And as you have mentioned what harm can it do as it could not make things any worse.

I really feel for the both of you but please hang in and vent vent vent whenever you feel the need.

Bob has had his big RC surgery and the corrections need to be made asap to give him an improved continence.

I have been following you guys story although have taken more of a back seat until I feel I can add something.

It is a real shame how this terrible disease can take a hold of us this way and move in many directions. Non of us know what is around the corner with this bladder cancer journey...we can only hope for the best outcome.

I wish you both all the very best with Bob's scan on the 10th and that they will be able to progress very quickly with a treatment plan for him.

Best Wishes
Leigh

Hi Leigh- Thank you for replying to my post. Bob hasn't had any Chemo- it hasn't been decided if it will do any good or not. The cancer has spread to his lungs.He is having a PET scan on the 10th which should tell us.The incontinence is due to the surgery for his 'cadillac' neo-bladder & the subsequent screwups. Apparently there is significant scar tissue where the catheter was incorrectly installed in the first place.The urologist said that they could operate to remove the scar tissue but it might make it even worse!! How it could be worse is beyond me since he has no control whatsoever.I'm glad there will be an end to your incontinence. Bob had his surgery Oct.2/07 when he was told he would be cancer free & back to normal in 2 mos. what a joke!!
Best Regards, Lorrie