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New here, looking for support for husband with BC
My husband has been battling with bladder cancer for several years now. We go through the cycle of quarterly cystoscopy and, sometimes, resection. It seems he can’t get beyond a year or so without a new tumor appearing. So far they are not very invasive, but with each new occurrence, he becomes more frightened.
We’re in Sacramento and I’m having a hard time locating in-person support groups specific to bladder cancer. I think something like that might be helpful for him, but maybe there aren’t any? If anyone has ideas for us, please post to let me know.
I will direct him to this forum, as well as some other online resources I’ve found. Just thought that face-to-face support would be good for him.
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28 Replies
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Congratulations!! :cheer:
Its always good to hear an “All Clear”.
Mark
Age 55
Diagnosed BC 12/20/2011 Ta No Mo 0a Non-Invasive At age 48
“Please don’t cry because it is over….. Smile because it happened!” {Dr. Seuss} :) -
And here we are again, with another clean cystoscopy. I am very thankful.
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I sometimes say that being a caregiver is harder than being a patient. And your patient is having the LOOOOOOOOOOOOOOOOOOOOOOOOOOOONNNNNNNNNNNG term Blues.
This treatment, although successful, has been a Long haul. I remember the adrenelin rush when first diagnosed and the determination during the surgeries. And then the recovery….. The first few weeks were great; making strides every day….. But as time dragged out and niggling problems wouldn’t clear up, I would fall into a funk and fear that I would not get better. But something always shook me back to a positive mindset.
I hope the depression is just a funk and not a constant thing. Maybe you need some new experiences or people who can give you a boost. Maybe a night out in a new location. Just something to let you know that life is not the same old thing and you ARE on the road to recovery.
I know it is hard, but my wife shocked me back to “The Real World” by announcing that she was “getting back to her life” and I could live in the cancer world or “Get to It!”
I was surprised. But after a fashion, I started to get back to it.Here’s to hoping you can too.
George
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
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New Man! [/size] -
Helen,
Sounds like you are in a very frustrating spot right now. I, too, am a caregiver. I hope your husband has not really given up. He has non-invasive, right? What kind of reactions has he had? Is he having BCG? He might want to talk with his uro about reducing the BCG; others on this site have had their BCG reduced and it still works.
Hang in there, Helen and take care of yourself.
Anita
Anita
Forum Moderator
Caregiver -
I’m looking for support as well. I’ve been here before, but under denial reasons. Now I understand. Right now I’m feeling abused, unappreciated useless and lost. He’s depressed and I’m not sure what to do about it. He has given up! He has not been happy for a while and I’m feeling the effect. I want to help him, but not sure of the direction I need to go in! He’s on his last treatment and the last two have not gone well physically for him. Anyone else experiencing this with their spouse?
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Elle,
You just keep on doing the mustard seeds, and following your doctors plan. It seems to be working for him, so keep up the good work, and we will be looking forward to hearing another “All Clear” from you in 4 months.
Mark
Age 55
Diagnosed BC 12/20/2011 Ta No Mo 0a Non-Invasive At age 48
“Please don’t cry because it is over….. Smile because it happened!” {Dr. Seuss} :) -
I’m beginning to be cautiously amazed. Here we are at about the two year mark, and we still have not had a recurrence. This is now twice as long as his previous best, so we’re very happy today.
I have to say that we were both a little nervous this afternoon before his cystoscopy; given his history we were both thinking that there’s just no way he’d have another clear check this time. But, he did!
He’ll go back in another 4 months, and I’ll just keep reporting back. As I said, we have no idea if the mustard seed is actually doing this for him, but it certainly isn’t hurting, so we’re just going to keep using it.
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Thanks.
Of course, we can’t say whether the mustard seed is actually helping, but all along we figured it wasn’t going to hurt and would be worth a try. The longer we go without a tumor, the better we feel about using it, but we’d love to see more research in this area. In the meantime, we’re glad that we decided to try it.
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That is wonderful Elle! It is good to hear from you. I am very happy you have reached a new milestone of 18 months, and I hope that stretches out for a very, very long time. Best wishes to you both!
They still haven’t found a magic bullet against BC. Maybe that little mustard seed could end up being it, along with the care of a very good doctor. I do remember that article. I admire your tenacity in making your own capsules, and do check in from time to time with progress reports.
Best wishes… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN -
Reporting back with good news– we’re now 18 months cancer free. Our longest period previously was one year.
We’re starting to feel cautiously optimistic about the mustard seed. He’s still taking it daily. I realize we’re just a sample of one, but we don’t plan to stop it.
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Thanks, Catherine! I have the same wish.
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Congratulations on a wonderful one-year cancer free mark! I wish many more for him!
Best wishes… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN -
One year, still cancer free, still taking the mustard seed.
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Hello all, it has been a while since I posted here. Wanting to let you all know that we had the last surgery and afterwards my husband started taking mustard seed capsules which I make for him. This idea was based on a post elsewhere here. It’s only been about six months, but so far his cystoscopies are negative. I’ll keep you all posted on this as we move forward. At this point it could just be business as usual and there’s no way to guess if the mustard seed is helping at all. But if he makes it to two years, we are going to feel as though perhaps it is helping. If he doesn’t, we plan to step up the dose and see if that works.
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Thanks, Pat. I’ll give the info about Dr. Carroll to my husband and talk with him about this. I appreciate everyone’s assistance today. It helps unmuddy the waters a bit
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