discouragement

8 years 3 months ago - 8 years 3 months ago #44635 by itsamama
discouragement was created by itsamama
Have been visiting this forum, since DH (Dear Hubby) was diagnosed in March. On April 10th Dr removed 5 tumors. Pathology: aggressive, superficial. Since then he has been (off&on) bleeding & passing clots (as of Monday, Dr says that's "normal" - he is on blood thinner due to afib. Quintuple open heart bypass in March of 2011). He has frequency - almost hourly, 24/7. He is on a med that has helped a bit. BCG will begin in 3-4 weeks.
That's a bit of history. On to the "problem"...
He watches TV. Goes to the bathroom. Plays games on computer. Goes to the bathroom. Sleeps in his recliner. Repeat.
He's big guy & has always loved preparing & eating food. Now - not so much.
I try to be upbeat without going overboard. We talk about the positives & he has a strong Christian faith.
Is there a way to encourage him? What did your spouse do that helped you the most? On nights when he doesn't feel like going to bed, I sleep on the floor nearby. What can I say - after bring married 38 years, we are best friends & we love each other.
I appreciate all ideas & suggestions. Thank you!

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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8 years 3 months ago - 8 years 3 months ago #44638 by CatherineH
Replied by CatherineH on topic discouragement
Hello and welcome to our forum... I am very sorry for the circumstances that made you seek us out with your husband being diagnosed with bladder cancer. I can tell it breaks your heart to feel so helpless to make things better for him. The bladder gets very irritated with the removal of the tumors and the bleeding and urgency should be improving very soon as it heals. As you stated, the blood thinner contributes to that. I'm sure both of you are still in a state of emotional shock as you absorb this news and prepare to move forward with further treatment. Right now just having you near must be a huge comfort to him.

It is almost impossible not to go through feelings of discouragement right after diagnosis because we don't know what's going to happen. It's a scary thing but your doctor already has a treatment plan for your husband so you can focus on that in the days ahead. Gently encourage him to eat to keep his strength up and hopefully his appetite will return soon.

We have quite a few members here who are care givers for their loved one who has been diagnosed. I'm sure you will hear from some of them as well.

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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8 years 3 months ago #44646 by itsamama
Replied by itsamama on topic discouragement
Thank You, Catherine for the warm welcome & encouraging words.
I would greatly appreciate hearing what words or actions you survivors appreciated most, from your family, & friends. Those are the gems my DH needs the most.
You all inspire me.

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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8 years 3 months ago #44650 by GKLINE
Replied by GKLINE on topic discouragement
Hmmmmmmmmm. The word. The very Stinking word! As soon as the Dr. says it.....

Your Whole life seems to have run it's course and your mind starts that game of "what if?"

DH is looking down that hallway. And there are two ways to approach it.....
DH can veg and sink into a "comfort mind game" for a while. I did. BUT ONLY FOR A WHILE!!!! A SHORT While. I felt sorry for myself and just needed the outside to entertain me.

Then I GOT REALLY MAD! MAD AS HELL! I Was NOT going to let some rotten cells take me without a WAR!

BUT I could not do it alone. I needed a team and a Plan............ AND a GOAL! My wife, who at the time said "I'm not the nursing kind of person." got on board and started asking me "What are we going to do?"
I didn't keep anything inside. We told our friends and family and MADE them come over and visit us. We didn't let the Elephant in the room go unnoticed. We talked about it and Audrey pushed me into MOVING MY BLOODY ASS! (I thought you might like some American version of English humor)

The very first thing you need to discuss is; The news could have been so much worse. DH will probably live a long life if he follows the BCG protocol. Lots of us here have had to start with..... Big time surgery!
DH has got to look at this as a positive and realize that he has a Good Dr. and A PLAN! Yes!

But we have seen people who can will themselves sick. This has got to stop! 50% of recovery is ATTITUDE! HIS!

So what is a caregiver to do? Sympathy can only go so far. Do you have cheerleaders in England? If so, you need to become one. Point out the great things around you. Invite his friends to come over and make him cook as a group. And get out doors! Bing cooped up inside closes his mind.

Conversation is a must! DH must "let it out" but he can't mire himself in depression and helplessness. Normal life goes on and he can participate.
You have to play the middle..... compassionate when he needs it..... And tough when he needs a "kick in the ass"..... But always let him know that you love him and you will get after this as a team.

Don't let cancer get the upper hand.

As to the bathroom? Oh BOY! Do Audrey and I have Bathroom Jokes! Incontinence is a part of this. Five years out...... I still have my moments! Bugger It!

DH has years of life ahead and a great story of "The war we fought together"

Ok! Video games for only 2 hours a day. Face to face conversation for unlimited time.

Now! Get out there and kick some cancer ASS!

Lovingly
George

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]
The following user(s) said Thank You: itsamama

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8 years 3 months ago #44651 by TheWifeAgain
Replied by TheWifeAgain on topic discouragement
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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8 years 3 months ago #44652 by itsamama
Replied by itsamama on topic discouragement
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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