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Wish I knew what to expect

11 years 3 months ago #24190 by Stephany
Junebug, I am a bit jet-lagged at present, but when I saw your post, I had to chime in. The next few months will be difficult, but rewarding to your family, as you all learn and decide and ponder and come together. My husband died of metastasized bladder cancer in November, and, if I had it to do over, I would not have pushed for the last two chemos. I think his quality of life would have been better.

That's my two cents worth. Let us know more about your dad, and his history, and his treatment plan, and what sort of talks you have had with him and your mom. I think there are people here with lots of experience that could be of help. Don't be afraid to come out of lurk mode and ask questions.

Stephany in Iowa (finally)

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11 years 3 months ago #24184 by Cynthia

I am so sorry to hear where your family’s bladder cancer journey has lead. I am happy though you are here with us as there are others that have been down the same road. I know some of the care givers we have here that are so giving will pipe in and share their hard won knowledge.

One of the things your family may want to think of at this time is to start looking at their choices as far as hospice care goes. Not all hospice care agencies work the same or offer the same services. My personal family have now used hospice twice and it has helped make a bad situation much better for everyone. In both cases it offered much needed help for caregivers and pain relief and dignity to our loved ones.

Please use this forum to vent and ask questions as time goes on that is what it is here for.

Cynthia Kinsella
ABLCS President

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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11 years 3 months ago #24180 by junebug
My dad has been dealing with bladder cancer for 3 years now. First had a cystectomy, then chemo, then radiation (mets to urethra), then more chemo (mets to bone), and the cancer is back now with few to no further options. The doctor has offered him one more round of milder chemo (not the gemzar combo but some other one), although it does not appear that it will make much of a difference.

I will be lurking here in the future, particularly because I am uncomfortable not knowing what to expect next. I know from past discussions that absent treatment, his life expectancy will be 6 to 9 months. What I don't know is how it works, exactly. Will it be a gradual decline or a series of precipitous drop-offs? My mom is his primary caregiver and I live 6 hours away, with 2 kids (one of whom is five years old and autistic). I am also the closest child/backup person for my parents. Its so hard to plan what to do next!! (I'm thinking for now planning a visit every 3 weekends or so, with more frequent visits later, but I don't know . . .)

Thanks for listening!

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