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The Wife vs. The Carpenter — In this corner……
It is virtually impossible to think like the patient………when I have conversations in my head (which there are many), I find myself saying……..”Well if it was my bladder and I had bladder cancer……..” but I cannot think like that because in reality I am not the one who has the cancer.
Hubby has had his mind set since day 1 ……..take the bladder out. I want rid of this problem.
My opinion is………let’s try something first, like BCG and then if need be move to the cystectomy.
The above examples are extreme shortened versions of our discussions. I am just looking for others who may have had or are having a different outlook or treatment plans. How do your spouses ideas differ than your own?
Of course whatever decision hubby makes I will support him 100% and never look back to the “what if’s”. I also don’t want to influenece him so that someday he feels resentful and wishes he had stuck with his choice of treatment. I have shown him different treatment studies, risk tables, and so on. I want to feel confident that he is aware of all options but I don’t want to cross the line and come across as “pushy”……….
HELP!!! What is it you would like your spouse or caregiver to do when it comes to helping in your decisions?
Also what do you want your spouse or caregiver NOT to do?? :-? -
7 Replies
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hello Wife,
Any idea why you want to pursue BCG before an RC? Was this something you heard about from an oncologist or read about…? Certainly if you have evidence or information that supports this choice, discuss with hubby and his doctor.
One thing I learned in over a decade of being a cancer spouse is that — my husband’s oncologist was right a lot. When I would bring up info from the internet, he often had more information that made the internet data less attractive.
Treatment is scary and losing a bladder is traumatic. No argument there.
Best wishes.
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Dear Wife,
I not only had a spouse with opinions but grown children, their spouses, a grown granddaughter and a surrogate daughter who has been in cancer research for years. I also had a local uro who gave me all the facts and then leaned back in his chair and said, if it were me or my wife I would say cystectomy but it’s YOU and you have to feel comfortable with your decision. I had a T2, very aggresive and was given a choice of chemo/radiation or cystectomy. No BCG. I was going to go the chemo/radiation route until I communicated with Cynthia Kinsella and found out that after all she went through she had a cystectomy anyway. I know some people do the chemo/radiation and that’s it but when I weighed all the options I found an incredible surgeon and decided on the cystectomy. My whole family wanted me to have the cytectomy because the prognosis was better but ultimately, because I knew I could not have a neobladder because of the location of the tumor. they let me make the decision. Before the operation all of my CT. scans, bone scans, blood work etc. were perfect. It turns out all the cancer was contained in the bladder and I am now cancer free, no chemo needed. All the lymph nodes that were removed were negative as well as everything from the hysterectomy so ultimately I feel I made the right decision. There were times, however, that I was not thinking clearly because of worry and being tired. Your body really gets tired trying to fight cancer and I was taking care of my little granddaughter and blaming my tiredness on that, so I really did take what everyone was telling me into consideration when I made my decision.
The Carpenter is lucky to have you. I was the Wife 4 1/2 years ago when Hubby had a heart attack and triple bypass. Very active man. Well drilling contractor all his life so a bypass was not on his to do list. Being the Wife is hard and you are doing a great job.
I will keep you both in my prayers.
Jean -
The most important thing is to follow your husband’s lead. If he doesn’t want to address things head on that can be difficult for you. But…it’s about him.
Maybe a consult with the social worker…or a therapist, could assist in decision making.
Take care,
Wendy -
Hi,
Bubbles, your pragmatism is laudable, is this ‘Mother’s Little Helper’ to quote The Stones or YOU – I feel the latter as balanced pragmatism goes with your job also.
At the moment personally I would wait – not just for the CT.
I would wait for as long as was SAFE before dumping the bladder – there seems to be a tendency to extract early, possibly due to the fact that they can then not be sued for failure to do so – BUT in Britain neo bladders are much harder to come by, you can get your sex changed, boobs enlarged, bum hiked, etc. or have your rectum repaired when damaged due to your perversion etc. etc. but basics for cancer aren’t very fashionable in the NHS!!
The CT will answer loads of questions but probably give rise to many more!
The CT will at least concentrate the mind and you will know whether the status of the bladder is significant or consequential!
I think you will find his CT will be much like mine – clear of distant spread and mets. but will possibly show his MRSA problems and clots. On Monday with all the answers you can formulate the right questions. Then sit down and plan the campaign to win the war against the invaders.
There are no perfect answers but the answers that the two of you decide on need checking with conventional medicine, family and chances. Whatever YOU both decide IS right and the Doctor can only advise on the questions asked – they have no more answers than you or I just opinion based on their experience and their world.
DO NOT forget that Mr. Woody’s decision making is likely to be impaired – he has had months of this challenge with blow after blow and he must be getting more than a little fed up with being prodded, poked and paniced. Don’t let him permit that irritation or despair to cloud his judgement!
Good luck.
Warm Hands?
Regards,
Greg L-W. -
Greg……..let me first clarify regarding the CT results mentioned in e-mail. I was referring to the very first CT results that showed the bladder mass beofre the Cystoscopy. Other than having a 3 day heads up about that, everything else has been reported to both of us at the same time when it came to the other treatments and tests. Every discussion has included both of us.
The urologist highly recomended cystectomy for a few reasons. The grade (3), the age of of hubster (46) and the size of the tumor (10 cm). She said she would feel most confident with that choice.
I am under the understanding that the tests he is currently having– full body CT and bone scan are the normal protocol to insure the cancer has not mets. IF we do get less than favorable results from the two then, obviously, we have to think much differently than to Cystectomy or not to Cystectomy.
The urine from the catheter is almost totally clear. I did ask (ummmmm beg) the urologist if the catheter could be removed today. Got the big N-O…….for a patient such as him (not so textbook) he felt it was a bad idea on a Friday. I had to go to bat for him because I know he would have had a much more relaxing weekend.
Okay Wendy I am off to the caregivers link. Thanks!
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Me and some others have put together advice for caregivers, on this page,
http://blcwebcafe.org/caregivers.asp
Check it out, maybe something helps…All the best,
Wendy -
Hi,
what ever you JOINTLY decide is right.
I believe Mr. Woody must understand – not be made to understand – but must surely understand is that he has had one blow after another – his decisions MAY be from being punch drunk!
You have the dillema of seeking to make the right decision – I will hang on to my bladder for as long as possible and I’m not sure even then I would see bags and so on as a viable life style AT THE MOMENT ;)
You still haven’t shared the CTScan results so what do they tell you in the decision making balance? How is the clot doing? Has the bleed stopped? etc.
Do they believe the C is threatening beyond the bladder? Do they believe they can contain the problem?
It would be good if they could contain the problem and solve the other problems putting Mr. Woody back on his feet and better equipped to take a long hard look at life AND THEN make the decision that WILL effect the whole of the rest of both your lives.
Good luck.
regards,
Greg L-W.
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