I really know nothing about cancer apart that I have it. I feel like a fraud coz I look really healthy and well and all I hear from my consultant is BLAH BLAH BLAH.
Any advice for a person living on their own would be apricated.
Welcome to our illustrious group that none of us wanted to join. I think it's fair to say that most of us looked quite healthy until we started treatment, that's bladder cancer, it's not at all obvious until the last stages if you ignore the symptoms.
I read your profile so know you prefer plain English to medical jargon but it would help us if you could give us your latest stage and grade of the tissue sample then we'll be able to advise you better.
As regards going private for a neobladder (internal pouch made out of bowel), there's nothing to be gained from that except maybe a bit of carpet on the floor of your room. Creating a neobladder is a big procedure lasting 6 to 8 hours and with potential for post op complications so I recommend it be done, assuming you're in UK, in an NHS hospital under an experienced surgeon who uses the robotic method.
Whatever queries you may have, we'll have someone here with an answer for you so just ask us, anything.
CB
I may appear to be listening but in my head I'm all at sea.
Yes, cancer can be really sneaky - many of us feel really fit & well until the treatment starts... Being on your own is not good when you can do with someone to pamper you on the bad days. You don't say if you have family/friends/social activities at all. There may well be a cancer support group in your area, often linked to the hospital, if that's your cup of tea. Exercise is good for cancer patients - lots of options there to join a group to meet other people.
I can see from your profile you're having BCG & wondering what if that doesn't work. No short answer as it all depends if a recurrence is same stage & grade, higher or lower. There are other treatments which can be considered but just take it a step at a time - don't give up just yet.
In the meantime, feel free to chat to us lot here.
Hi Thumpa56, as others say, don't give up just yet on the BCG. Even if it actually doesn't work, many people including my husband have gained remission from treatment with a chemo drug called Mitomycin. They put it into your bladder similar way to the BCG or possibly through a heating pump machine as it is supposed to work better warm. My husband's bladder wouldn't retain it warm but it has still worked for him. And he's in his 70s.
If my husband's experience with both BCG and Mitomycin weekly treatments is anything to go by, the post-treatment fatigue gets worse week on week. So as you live on your own, it would be a good move to stock your kitchen with easy to serve nutritious and appetising snacks and meals to use in the later weeks of the course. And if you've got friends with money to back you up, maybe they would sub a cleaner or other home help for if you can't do stuff yourself?
You'll also see on the forum some people have done well with a trial drug, and others with laser treatment. What is worth doing is to recruit someone to go with you to any doctors appointments where treatment plans will be discussed. And be ready to ask, are there any other options? because not all hospitals do all the different treatments and I suspect don't mention treatments they don't offer. But you have the right to travel for a different treatment if you wish to.
So hoping the 3 ideas: 1] maybe Mitomycin 2] stock up easy food 3] ask, ask , ask
Hi my husband was diagnosed just over 3 years ago Like you only symptoms was blood in his pee
Fast forward 21 treatments with bcg he is all clear Tuesday he starts another course of 3 treatments and if he has another all clear its possible his bcg will be completed Originally we were told he would need 27 in total but our nurse thinks consultant may consider surveillance to be sufficient
I echo what has been said about finding a cancer support group We are lucky to have a good one in our area
Try not to over think This from an arch over thinker who in the past has been on this site at 2am
People here have had a variety of treatments Sucessful bladder removal successful chem/radiotherapy successful bcg successful chemo wash treatment and an amazing report from Crusty bladder who's friend joined an experimental trial and is now cancer free
