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discouragement

6 years 2 months ago - 6 years 2 months ago #44682 by mmc
No, no,no. It was not sounding heartless at all!!!

Based on what we know so far it is highly likely that he is VERY treatable. I'm not sure about top uros in your area but maybe someone else here is. His uro may also be able to refer him to a top bladder cancer specialist at a teaching hospital for the 2nd TURB.

It is a tough time for both of you and we are here to support you both. There is a grief cycle for things like this which is pretty much the same with many major life changes. He needs to move from shock and disbelief/defeat into anger and action.

Sleeping on the floor kind of sounds like you are expecting to lose him any day and that's just not the case. Maybe try to get back to your sleeping routines. Get him to come to bed or something. This is just as tough on you if not tougher. Those of us who have gone through this with spouses understand that. DH may not understand that right now and its best to let him realize it on his own I think. That's just my opinion though. It could be he's spending a lot of time worrying about you and just not saying. Talk about it. Remind him that he is at a very treatable stage of this thing.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...
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6 years 2 months ago #44678 by itsamama
You are right-on about the "so soon", Mike. I was in the process of typing something else & became distracted...making me sound heartless instead of simply careless. Forgive me.
In fact you are all such encouragers, that I am humbled by your every post.
DH is bring treated at the VA Medical Center (in association with OHSU - Oregon Health & Science University), Portland, Oregon. The pathology was sent to Johns Hopkins, which reported the same diagnosis. Have we done enough? Suggestions, PLEASE. PLEASE.

DH (Dear Hubby)...
Diagnosed: March 2013
TURBT (non-invasive, aggressive), CIS: April 2013
BCG began: May 2013
Completed initial BCG: July 2013

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6 years 2 months ago #44667 by sara.anne
I would echo George's advice that he should get angry!! That is the way to fight!
After I was first diagnosed, both my urologist and my internist "suggested" that I was depressed. DUH. That DID make me angry...I felt I had every right to be depressed!

If you and your DH are anything like me, you want to know what is going on and what to expect. I would also second Mike's suggestion that you make sure that your urologist is an EXPERT in the diagnosis and treatment of bladder cancer. Since this is a condition that does tend to come back, yet is very treatable, it is important to be in a place that knows what is going on and what the best possible treatments are.

Best of luck to both of you.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
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6 years 2 months ago #44661 by mmc
Hi,

Not sure that it is so soon from his point of view. The bypass in 2011 was a big reminder of mortality and now this darn bladder cancer thing comes along. Double whammy. Oh no, I'm going to die! What's next? Why me? Who could blame him for those thoughts.

I was going to suggest antidepressants as a possibility but I see he has now started that. It should help a lot. They do not have to be permanent but sometimes a diagnosis can cause the brain to go into flip flops and trigger depression.

The fact that he is T0 (innermost layer of bladder) is very good news. Aggressive, high grade is obviously not good. His likely next step is going to be BCG.

One problem with bladder cancer is that is cancer that recurs more that any other cancer so he is going to need to keep an eye on this and follow a regular cycle of visits and maintenance doses of BCG.

We always suggest getting to a bladder cancer expert once the diagnosis has been made. Now is a good time to do that. Urologists cover all things urological but there are urologists who focus on bladder cancer and that's where he should get a follow up TURBT. Bladder cancer is very often under staged which is why the 2nd TURBT is standard protocol.

Have DH stop by here and do some reading or ask some questions. I can't tell you how much it meant to me back in 2006 when I was first diagnosed to have so many people who have "been there, done that" to be able to ask questions of.

Best to you both!

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...
The following user(s) said Thank You: itsamama

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6 years 2 months ago #44652 by itsamama
Thank you so much. Your encouragement & fighting attitudes bless my heart!
PCP is sending an antidepressant & they're adjusting his warfarin, so his bladder can begin to heal. He rallied a bit today & actually sounds like himself. Yay! One day at a time, right?
Thank you again & again!
Please keep the suggestions coming - he deserves my best.
bea

DH (Dear Hubby)...
Diagnosed: March 2013
TURBT (non-invasive, aggressive), CIS: April 2013
BCG began: May 2013
Completed initial BCG: July 2013

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6 years 2 months ago #44651 by TheWifeAgain
Hi Mama~
I, like you, am the wife and my husband is the bladder cancer fighter. My husband is very quiet and getting information regarding how he feels physically or emotionally is as painful as sticking needles in my eyeballs. We have been at this bladder cancer thing for about 6 years now so I have learned his "moods" and can sense when he is down. This is new to you (and him!) and I am sure both of your minds are constantly in "questions questions questions, what ifs, what's next, OMG is this really happening?!?!" stage. Does he enjoy using the computer at all? If so here are some great guys on this site he might feel comfortable chatting with or asking questions.

I just make sure I am available and try not to get frustrated when my husband is in quiet mode. If your husband remains in his current "funk" it's worth mentioning it to his doctor. In the meantime try planning small things or outings that are not too much for him to handle. For example we went to this little diner mid afternoon yesterday (nothing fancy and/or complicated) and had a light bite to eat and it is moments like that when you have face to face time that is important and it got him out and about for just enough time without exhausting him. We have a small business and tomorrow we are going to take a ride to one of the retail locations that sells our items. We'll be trapped in the car together so it will be another oppurtunity to chit chat with each other. Nothing too strenuous or tiring. Just enough "us" time without the distraction of the TV, telephone, or computer.

Good luck and as a team you can handle this with no problems!

Pam

Age 53 Currently
Bladder Cancer Diagnosis October 2006 T1G3
2011 Finally made it 6 month between Cystos
8/22/2011 Cysto in the OR
(BCG and BCG Maintenance over the years)
Graduated to yearly Cystos
Tumor found at first one year Cysto - TURBT 4/26/2013
Kidney pain - CT scan 5/1/2013
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