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3 years 3 months ago #49221 by RDnKY
My husband's radiological oncologist (is that what they're called??) is also the director of our hospice house. I'll be sure to ask his advice when we meet with him again next week.
Thanks so much!

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3 years 3 months ago #49220 by Cynthia
I would give them a call and see what they have to say about your situation. It is best to have them lined up than finding your selves in need and have to start then.
Please keep us updated we are here.

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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3 years 3 months ago #49217 by RDnKY
Thanks for your reply. I would never have thought about palliative care. We have a brand new hospice center in our small town. I don't know if they serve people so early in their treatment. However, since my husband's pain is not improving it might be good to explore.

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3 years 3 months ago #49212 by Cynthia
That is a hard question to answer it depends on a lot of factors. Some chemo regimes will cause a lot of fatigue others not as much. The same goes for side effects such as nausea and some people experience more brain fog than others. It probably will come down to a combination of what your husband feels he can do and what the doctor wants him to do. Please remember that chemo lowers your resistance to germs as a whole and there may be times the doctor wants him to not so much be a hermit but to reduce exposure.
We are so sorry to hear his bladder cancer has spread I hope you are finding ways to manage his pain well. Many people do not like to think of Hospice care as palliative care but it is. It is a good idea to talk to your doctors about it as it can be a great help to have a support group ready to help as needed.
I know that this did not help much but keep us updated and know we are here.

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
The following user(s) said Thank You: RDnKY

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3 years 3 months ago #49199 by RDnKY
Unfortunately, the cancer spread to my husband's hip bone and lymph system. His hip actually fractured because of the cancer, so he is in a great deal of pain and can only walk...very slowly...with a walker. He is currently receiving radiation on his hip and once the radiation is complete, he will begin chemotherapy. All of the doctors insist that the pain will decrease and the hip will heal with the radiation, but we aren't seeing much improvement as of yet.

It is hard to stay optimistic and I am absolutely exhausted and heartbroken. Seeing my strong, vibrant, extremely independent husband like this just breaks my heart. The fact that he depends on me for so much is really hard on him, though I don't mind at all.

Now for a question....just how debilitating is chemo? Will he be bedridden? Work is what keeps him sane, even if he is able to work only a few hours a day. Will he be able to keep going in to work for the eight weeks he is in treatment?

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3 years 5 months ago #48979 by Cynthia
Sorry you are having problems. Chemo is doable and we will be here to help if you need us. First get a solid diagnosis and if needed what kind of chemo they will use. Crossing my fingers that you don't need that kind of advice. Please let us know what you find out.

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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