-
discouragement
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 201327 Replies-
We are practically neighbors. That is fantastic! I knew you were a Godsend.
We, too LOVE the Pacific NW. We have friends who live in the high desert of California & family in Phoenix, Arizona – they think it rains too much here – to which I kindly reply “If it didn’t rain, it would look like the desert.”
If you hear of any programs that may benefit us, please let me know.
I’m so excited that you live nearby!
Blessings,
b
DH (Dear Hubby)…
Diagnosed: March 2013
TURBT (non-invasive, aggressive), CIS: April 2013
BCG began: May 2013
Completed initial BCG: July 2013
Well, first of all, I live in Portland and LOVE it. When people complain about a few gray skies and some drizzle ( :laugh: ) I remind them that this is what makes it so beautiful…lakes and rivers and trees and GREEN.
OHSU has a very good urology program; my uro did his residency there and his mentor, Dr. Daneshmand, was recruited by USC. It sounds as if you are in very good hands.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Yes, Sara Anne, indeed it is OHSU in Portland, Oregon. The VA Medical Center is attached to OHSU. When you think of OHSU & Portland, Oregon – what else do you think? Inquiring minds want to know (the good, the bad, & the ugly). :)
DH (Dear Hubby)…
Diagnosed: March 2013
TURBT (non-invasive, aggressive), CIS: April 2013
BCG began: May 2013
Completed initial BCG: July 2013
Where are you located? When you say OHSU I think Portland, Oregon?
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Encouragement:
A urology nurse called from the VA, to say that because she noticed we had requested a 2nd opinion from Johns Hopkins, perhaps we would like to have someone other than a Resident perform DH’s upcoming (August) Cystoscopy. WOW! She then gave me a list of doctors & their particular specialty…one is a Urology Oncologist at OHSU. We chose that one, of course.
It’s so exciting to KNOW that God has His hand on DH even during this time of bc. Dare I say that it seems like a miracle & that nurse an angel?
Just want to give an update.
Thank you all for being there for us, cheering us on.
DH (Dear Hubby)…
Diagnosed: March 2013
TURBT (non-invasive, aggressive), CIS: April 2013
BCG began: May 2013
Completed initial BCG: July 2013
Everyone reacts differently but usually, after the first few BCG treatments, a bit of fatigue is the only reaction. As you have more treatments, and the body becomes sensitized to it building up its immune response, the reactions slowly build a bit. It is much too early to have any concerns about not reacting enough! If he is lucky this is the worst it will be, but I would guess that he will experience a few more side effects in the future.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Hi Itsamama, I was dx over 5 1/2 years ago. I have my next follow up in three weeks. I initially had low grade superficial, once tumor 4cm x 2.5cm. There was a difference of opinion if it came back at my first follow up. I have had 30 BCG treatments over the years and some have been rough, but only for a short time.
Sometimes I would have significant fequency, burning and temperature swings, rash etc and other times the reaction would be mild other than frequency and a slight increase in my temperature. With my first three BCG treatments my side effects were mild.Looking back I do remember that when I was first DX the day before Thanksgiving I also went into a funk, lost about 10 pounds and it took around 1 month to get out of same. Once my treatment started my outlook changed for the positive and have been pretty upbeat since. There is no doubt when my time for a follow up comes around the concern creeps back around.
BCG #2; completed (Monday). Reaction; tired that night & the next day.
Is it ok that he didn’t have more of a reaction? I’m so concerned…
Thanks for listening & suggesting.
DH (Dear Hubby)…
Diagnosed: March 2013
TURBT (non-invasive, aggressive), CIS: April 2013
BCG began: May 2013
Completed initial BCG: July 2013
Thank you for all the info & encouragement.
The BCG was a breeze (easy for me to say, right?). That night he felt fluish & the next day he was back to being tired (still low on blood). Is it ok that he didn’t have more of a reaction?
Then on Friday the Dr called to say that the urine culture showed an infection. So he’s been on an antibiotics & today they renewed the Rx to last until Wednesday…his 2nd BCG will be Monday. I did question having the BCG while on an antibiotics…reply: it’s a special circumstance. Special circumstance? Usually I am all about having my questions answered, but lately, I find that my brain is numb during some conversations.
We will discuss the warfarin change at his next cardio appt. Great suggestion!
I appreciate each of you & you are often in my prayers. Thank you – again.
Blessings
b
DH (Dear Hubby)…
Diagnosed: March 2013
TURBT (non-invasive, aggressive), CIS: April 2013
BCG began: May 2013
Completed initial BCG: July 2013
In our household I’m the one who’s had bladder cancer, but my husband has afib and had all kinds of problems with warfarin. His dr. put him on pradaxa, and it’s made a world of difference. Pradaxa is much moire expensive than warfarin, even though we have insurance, but in the long run I suspect it saves money as the person doesn’t have to keep gong in repeatedly for testing. You folks might want to talk to the dr. about other “blood thinners” besides warfarin. Best of luck with the bladder cancer treatment. I did the full round of bcg treatments and have been clear for 5 years.
Ann
Small TA Grade 1, May-06; recur (2 tiny), same, June-08; TURBTs both times. BCG begun July-08, dosage to 1/3rd May-10, completed treatment December-11. All clear since 2008.
I so hope the BCG goes well today. Poor guy has been through enough already and I know how worried you are about him. My best to you both…
Best wishes… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN
Great news! Hope all goes well!
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 system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
The bleeding has stopped, he’s back on his warfarin, & while his hematocric is low, all systems are GO for tomorrow’s BCG.
Thank you all, for your encouragement. I’ll keep you up to date.
Prayers & blessings for each of you.
b
DH (Dear Hubby)…
Diagnosed: March 2013
TURBT (non-invasive, aggressive), CIS: April 2013
BCG began: May 2013
Completed initial BCG: July 2013
I have been on both sides of the fence and in my opinion it is harder to be the caregiver than the patient so my advice is be as helpful as you can and keep a good attitude but take good care of yourself and take time for yourself.
Sending you my prayers as you travel on this journey.
Blessings…Jean
Update: it’s been almost a month since his TURBT.
Sunday he had a blood clot blockage in his bladder & thankfully the ER folks were able to remedy that & flush-out his bladder…as we were about to leave, he became so light headed that they took him into a more intensive section of the ER & began checking him out thouroughly. All was well…except that he had severe bladder spasms (having to “go” every 3 minutes, all day & all night. On Monday, Dr increased his anti-spasm med to 4x/day…3 hours later his urologist called…he has an infection. Today he sat in his Lazy Boy, not even interested in the computer games he enjoys & while he refused lunch, he did eat most of dinner.
Sleeping on the floor nearby is something I began doing because it brought us peace to be near each other. Now I am back in our bed most nights (he likes the white noise of the TV, which keeps me awake) & his cell phone is nearby, if he needs me. I want to be very sensitive to his needs & still try to keep myself healthy, for him.
On Monday, they’ll check his INR & urine. If all is well, the following Monday, the 20th, he will begin BCG.
I am encouraging him & telling silly jokes to make him smile. Is there more I can do?
Question: is all of this “normal” or is there a “normal”?
You all have such eloquent stories & such incredibly positive attitudes – you are each an inspiration. Thank you so much.
God bless you!
DH (Dear Hubby)…
Diagnosed: March 2013
TURBT (non-invasive, aggressive), CIS: April 2013
BCG began: May 2013
Completed initial BCG: July 2013Sign In to reply.
