Need Help
Hi. I am a caregiver, or significant other, to a man named Ricky who was diagnosed about 6 weeks ago. His symptoms started about June 2024. He went to his primary care dr who did blood test and urinalysis. It showed nothing. This was in August. He said to see a urologist but he had to have a referral. Finally a month later we got the referral. On November 8 he went to the ER because of pain and he couldn't urinate. After a CT and labs he was told they think he has bladder cancer, to see a urologist in the next 24 hours. They also tried to put a catheter in but couldn't get it in. So they gave him morphine and sent him home. The next day we searched for a urologist, the one on the referral did not have availability for 3 months and we couldn't wait. Then we found Dr Dafashy. He saw him by Nov 12. He looked at the CT from the ER and said he had a very large mass. He needed to do a cystoscope right away. Thanks to very high deductibles on his insurance we had to come up with the $500 for the scope. He couldn't get it until December 5. The mass was so large, we couldn't see his bladder wall. So next step is surgery to remove the tumor. That was on Dec 9. The mass was so large, all on the right side. It had grown over the ureter, disconnecting from the tube and kidney. Dr found it and put in a stent and reconnected to the bladder. He was sent home with a Foley cath for 7 days. Those 7 days were excruciating. He got an infection and ran a high fever but was called in Cipro, which knocked the fever out in 2 days, but the entire time he could feel the stent and it caused him pain. Dec 16 it was removed, thank goodness! That was yesterday. Since then he has passed what looks like chunks when he urinates and, now, again, he has no control and his stream spews in 4 or 5 different directions. He is really struggling with all this. Does anyone have any advice for me to be able to help him better? Oh also his feet look like balloons. They have for days now. We get pathology results on Friday and I am terrified for him. Please advise. Sorry for such a long post.
Hi
. It's been a few weeks since the surgery, so I wanted to check in and see how your partner is doing. Have things improved? How was the pathology report? Please know you are not alone in this. We are here for you. Thinking of you and sending lots of healing vibes your way. - Lori (Team Member) Hi Lori
The surgery seemed to help some once the cath was removed. However the no control over his urine is still pretty bad and still having issues going. He is still having pain. I am not sure if the Stent is causing this or not. That is removed on Jan 16.
He saw the chemo dr yesterday for the first time so he will be starting chemo very soon.
The thing I am struggling with is the bad attitude he has. He is always angry and snapping at everyone even our dog Zoey. He was not that way before at least not to the extent he is now. It makes it even more difficult on myself and everyone around him. My stress level is through the roof. I only want to support and help him but I guess I do not know how. I understand his frustration but enough is enough. Not sure how much of this i can take. Any advise would be appreciated.
ThanksHey Lori
In my frustration with the situation I forgot to mention pathology. He has T2b high grade. As he is passing large chunks again we fear it is growing back already. I pray not but he is sure having a hard time.
Thank you for this group. I am learning a lot about coping. I wish Ricky would read it as I have suggested. Always hopeful!
Kimbers526Hi
. We're glad you found us! Bladder cancer can be really hard on caregivers. Not is the physical part of caregiving post-surgery pretty intense, but people who are depressed or angry will often take it out on those who love them unconditionally. It sounds like that's you in this case. You might not be able to change him, but therapy could help you figure out ways to handle it.
Have you mentioned his behavior to any of his doctors? I ask because there might be a physical reason for his foul moods. He might have become diabetic since his surgery or have undergone hormone changes. People who are diabetic and undiagnosed can suffer from involuntary bouts of anger at times. My father-in-law stood up in church one day and berated his niece, whom he loved, just days before he was diagnosed. That was very unlike him. Certain antibiotics can also cause mood changes, including anger.
I hope the pain subsizes with the removal of the stent and that you figure out what is causing the chunks. It would be highly unusual for the cancer to return so quickly, but there might be something else going on.
Please keep us updated if you don't mind. Sending loads of hugs your way.
- Lori (Team Member)
It's funny you mentioned diabetes. He has uncontrolled diabetes that we are trying to get control of. When his sugar is up he is very mean. But how he was acting was worse that normal for him. However, since my last post we have had friends rally around him and that seemed to really help him. He has his anger in check and is ready to fight for his health.
He still hasn't started chemo. I feel that is partially my fault. The original dr we were referred to I could not get thru to. So we went to see another oncologist. For 3 weeks we have been trying to get chemo approved with the insurance company. Well we got denied today. The dr did not provide enough information and we gave him all that info. I have been calling to check on approval and not once has the dr office requested more info. I have all they needed. Insurance reached out to me this morning because I emailed them yesterday since I got nowhere with the dr. This is how I found out he was denied. I was furious! Hopefully I did the right thing and let go of my anger and went back to Texas Oncology. He has an appointment on Monday at 11. I am hoping this dr can get the ball rolling.
Again I really appreciate this group. It has helped out tremdously. I may not post in a timely manner but I see your reply and it gives me hope. Thank you again.
I can hear how difficult this has been. I am glad his friends have stepped in to support him and you. The whole insurance approval process can be sooo frustrating. I am glad you reached out to another doctor and he has an appointment soon. Hopefully like you said, this doctor can move this forward and get him started on treatment. Sending you lots of hope and strength. Jill (Team Member)
