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wind out of my sails

11 years 10 months ago #19836 by Clara
I am a little behind on the forum but just read your posts and want to encourage you to take a day at a time.
My husband has had to make choices lately whether to take chemo or not and I feel that he is worth whatever it takes until he feels like he cannot do it anymore.

Please take good care of yourself and really try to check out all of your options while you are healing. I wish you the very best.


Caretaker of husband, Bob.
Stage IV
Diagnosed Jan, 2007

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11 years 10 months ago - 11 years 10 months ago #19830 by Cynthia
In the last few years I have had a few scares that have turned out to be a flash in a pan but left my knees week and with thinking to do. If I have a return I will be in the same boat as you are having already had chemo. So what now would be the question? I would either be working with the best going or ask my Oncologist to confer with them. I would have a frank discussion with my Oncology team and ask the hard questions and voice my concerns. And then if appropriate I would talk to a clinical trial matcher for any non blind stage III trials that I could qualify for. Then I would think long and hard and try to find the answer that was right for me. If I went forward I would make my Oncology team promise that they would let me know if fighting was not winning anything. No matter what our stage we still have to make sure that we are making informed decisions. Treatment decisions are very personal ones and should be based on frank discussions with your Oncologist and your other doctors.
You have to be very tierd and past it you have not even came to terms with having blc let alone dealing with all of this while trying to deal with the healing following your RC. You have a few weeks before you could start chemo take this time to gather facts. If you need the names of some top of the food chain Oncologists let us know.

Your head cheerleader

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 10 months ago #19821 by Patricia
Well i will disagree with you on visiting nurses and only small hospitals with doctors that know everybody providing them. I was treated at a huge Urological Center The Cleveland Clinic and i had a Stoma Nurse visit me once a day the first week until she was comfortable i knew what i was doing in the care and cleaning of the various tubes. And another thing about a larger institution like this is that they actually specialize in bladder cancer and the doctors do from 60 to 90 cystectomies a year which generally cuts back on surgical time and quite possibly outcome.
Lots of homework should go into picking your institution, your surgeon and your oncologist.

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11 years 10 months ago - 11 years 10 months ago #19820 by Gene Beane
Not to long ago the big decision was what type of deversion would be the best, as sailorman was having a hard time deciding.
When my husband choose his he asked me what do I think about his decision.
With compassion I said, boy, you have to be the one to decide as I won't be wearing the bag or have a neo bladder. Now the decision about chemo. First I would like you to know I am sorry the outcome after surgery was even to have to think about this option. As his wife and caregiver I do understand your concern as to the effect it could have. Of course quality of life is most important.
As I said about choosing the deversion, I hope which ever way Sailorman decides, that it works for him and I will pray for you and the family that he has longevity in his decision.. Ginger

Hospital Cleveland Clinic r/c Sept.14,2007
Surgeon. Dr Stephen Campbell and Gill
Gene Beane..66 Ford Motor Company
Engineer, retired Vietnam Vet

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11 years 10 months ago #19812 by Stephany
Bookwriter, thanks for those thoughts. They are very valid.

George, let us know what you find out. My husband just found out this week that his BC has metastasized one year after his RC. It hits like a blow in the gut. We're still reeling.

We're with you. Whose taking care of you right now?

Stephany in Iowa

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11 years 10 months ago #19807 by bookwriter
I want to offer a differing opinion. It's not me who has the cancer - it's Sailorman (Will) and I've said the same thing to him too and he didn't like it either. So most of you are probably not going to like this. I think, if you have a pretty good idea that the cancer is bad and you're not going to live very long, you should concentrate on enjoying your life and not torture yourself with further chemo treatments. I know chemo is very difficult. I've seen it with two people - my father and a friend - and if they had foregone the chemo towards the end, they would have been able to enjoy more (and possibly even live longer). There's also an old book, "The Cancer Ward," written by Aleksandr Solzhenitsyn (Russian), which is autobiographical. In it he undergoes all sorts of treatments that are so horrible he eventually walks out of the hospital, abandoning his treatment. In real life, he moved to the U.S. where he lived out the rest of his long live in Vermont. He walked out and the cancer didn't come back.

Out tendency is to do whatever the doctor says and to keep trying things that may work. That would be fine if the treatments were painless, but they're not. They're hard and they destroy your quality of life. That's my 2 cents, for what its worth. Live and have fun.

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