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Heading down a scary road

11 months 5 days ago #56154 by Alan
Jeep,

Be sure to take care of yourself, also! Sometimes it is harder on the caregiver. It sounds like your Dad has already made his peace with his Maker. Grab a close friend and keep them in the loop. I find that helps.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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11 months 5 days ago #56153 by Jeeplover
Sara Anne thank you for your suggestions and kind words. I will be meeting with the specialist at the end of the month. I have been asking around to others in regards to hospice in our area. As you stated I am finding there are some better then others. Hoping to get some help during this emotional time.

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11 months 1 week ago #56114 by sara.anne
Your father is so lucky to have you with him, and...believe it or not....you are fortunate to be able to help him take this journey.

As for what to expect, everyone is different. I would strongly suggest that you contact Hospice. They can be a wonderful help at a time like this and many have programs to aid someone staying in their home as long as possible.
They can provide respite help for you also. Be aware that there may be several Hospice programs in your area and some are better than others and they may offer different types of assistance. When you meet with your father's doctor would be a good time to discuss it with him.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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11 months 1 week ago #56113 by Jeeplover
Hello all- I am in search of advice. Last year the VA found a 2.3 cm cyst in my fathers kidney through a CT scan. They then ordered a ultrasound and blood work. After watching his blood work over the year an a half his kidney function has been declining. In September I had to take him to the ER for passing blood. After many test we found out he had a tumor in his bladder. The test came back as aggressive invasive bladder cancer. We have seen several doctors who have told him all the same thing...we need to remove the bladder and then start cemo. My father has decided he does not want the surgery. For he has to go through many test first to see if his body will take it. He has COPD also. Now we are getting his kidney examined once again, for the bladder tumor is right at the base of the kidney line. I am scared as to how the future will be without treatment. He does not want to get sick from radiation or cemo so he is not going to be taking that either. He has been told without any treatment at all he will likely pass away within a year. Currently he is not in any pain. My fear is what is yet to come, and how do I help him. He lives alone, and I am the only one here to help. I know he is going to get worse, and I am scared as to what is going to happen. He wants to stay at home, but I fear not being able to take care of him. I want him to pass with dignity so I am not sure how to go about some of his what I know will be up coming care. My father and I have a very great relationship, for we are best friends as well. My mind is doing a hundred miles per hour with what ifs. I feel lost on some days. He has good days and bad right now. Between the thoughts of passing and now he seems to be forgetting a lot. I know this is due to what is going on with his body inside. Can anyone help guide me to make this process some what easier for him and I. I will be meeting with his doctor over the kidney scan at the end of the month, for his soul is already going with all the ongoing doctors appointments. I am trying my best to keep him positive, but its getting harder every day. Sorry this is so long, I to just need to let it out, for I don't have much support either. Thank you all. God bless.

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