It really sucks that you did not get a second opinion on something this important. But what is done is done. I drink Isaic herbal tea 2 times a day http://www.remedies.net If nothing else it is moral builder. Many swear by it. I also would go to a herbalistic docter for help. i did and I take many natural drugs. My BC is still the same as in febuary but I did have 6 BCG tretments. My URO wanted to remove my organs and i got 2 other opinins and now I am working with auro on one last try to save the bladder. The very best of every thing for you to get thru this. Don
I've written before regarding stage IV BC. John's bladder/prostate was removed 1/06. There was lymph node involvement. He began chemo 3/06. My Dad has lung CA and is actually doing terrific so I have compared everything John has gone through with the treatment for lung CA. I know they're totally different, however, my 83 yo Dad went through chemo/radiation with NO problems. The PET scan confirmed lots of things. John's urologist said his ins wuoldn't pay for PET scans for bladder CA. I called the insurance and found out it would indeed be covered. I am the "other" woman and have been for 33 years. Nonetheless, after ~6 wks of chemo (gem?Platinum) he developed blood clots in his lungs. Emergency surgery had to be done to remove them and put in "basket" to keep them from his heart. He couldn't get his strength nor his appetite back. He was either nauseated or had diarrhea. Two weeks ago he went back to the hospital with a distended abdomen. They drew 2 liters of fluid and we found out yesterday that the cancer is now in the lining of his stomach. He goes Monday to find out options/prognosis etc. He says he will not take anymore chemo. We can't undo what's been done but I wonder if this hell he has gone through for 9 mos could not have been prevented? Would it not have been easier to just be "eat up with cancer" and have had a few more good months. He never questioned his urologist about removing his bladder. He told him how bad bladder CA was to spread etc. and the only sure way is to remove the bladder. Of course I begged for 2nd opinons, PET scans, etc. He had complete confidence in this man. Can you not know before surgery how advanced it has become? It's so ironic that for the last 4 years he has seen his MD for a prostate, BP, routine physical EVERY 6 months. In November he began having to pee very often. No pain, no nothing. I suppose I'm just venting right now. At this point is it a matter of time? What about alternative medicines? We're in the boonies in TN but I do so want him to live. Not for me, but he so loves life. We have asked God for forgiveness of our sins. I can't quit loving him, and I hope he's not being punished for our sin. :'(
My dad is in a similar situation. He has bladder cancer which has metastasized to the bones. He has had chemo and radiation therapy. Every few days, he suffers from cancer pain which leaves him weaker than before. It is sort of like a vicious cycle which leaves him weaker. He can't walk that much which is causing muscle atrophy. Because of his weakness, he can't fight the pain that well. He is taking morphine and some other pain killers for pain relief.
I'm sure you've already seen this website but it has a lot of info about cancer-pain and is promising. http://www.cancer-pain.org . According to this website, cancer-pain can almost always be relieved. If you haven't already consulted with them, it might be worth it to consult a pain management clinic. These have anesthesiologists who use different methods to control the pain, including nerve blocks etc (more info in the aforementioned website).
My dad has also just started drinking Ensure to make up for the deficiencies in his diet and since he did, the pain hasn't been that severe. I can not conclusively say that drinking Ensure has helped him manage his pain better because of the short duration but I hope that he doesn't suffer such pains again. It is terrible to witness let alone suffer from it. A good diet during this disease is always recommended.
I noticed that your post was earlier in the year. Hopefully, your husband has overcome his pain already. If so, please share what helped him overcome his pain.
It can be very hard as a caregiver when we see things, wish we could help but can't. The most important thing to remember is to follow the lead of the patient. If denial helps a person to cope and get through tough times, then denial can be a valid way to deal with things.
I thought it was common for doctors/oncologists to give people the kind of 'template' you're inquiring about, to follow their schedules and keep track of complications, side effects and questions. Maybe the doctor or assistant could provide such a thing.
Your situation sound just like my BIL. I'm new to this forum, as I'm trying to help out with finding out as much information as I can. My BIL was diagnosed with metastatic bladder cancer several weeks ago. He has lymph node involvement in his neck and abdomen, and also has tumors in his esophagus as well.
The problem is that his wife and he are in denial about this, and think that he is going to be cured of this cancer. The doctor has told them that he can treat him, but he cannot cure him. I'm not sure if they are in denial, or they truly don't understand the diagnosis. I have given them lots of questions to ask, and they haven't done it. I still don't know if it is TCC or not, though I do beleive it it.
I thought it would be easier if I could find something like a template, or document that is set up for patients with cancer to record there appointments, inpatient stays, chemo and labwork. That way, If I can find one, it might help them keep track of things. Everytime I ask them a question, either they didn't ask that of the doctor, or they didn't get the results.
This is hard for my husband, as we know it's not really our place to be involved in his care, but he feels like someone should be asking the questions. Any advice would be greatly appreciated.