Now what?

Alice,

Hang in there and try not to worry so much. We will hang in there with you and try to help you to get to the bottom of this. I can tell that this is a very trying time for you.
Please keep us posted with test results and please continue to ask questions.

I may not always have answers, but, I will do all that I can to help support you.

Till later,
Rosemary

Wow Pat, what would I do without you and Rosemary. Yes, I went through all that you had mentioned plus roll over in bed every 15 minutes.

I have already applied for SSI/SSA and through KPERS for disability for when I was teaching. Just waiting for results. My results are all at a hospital an Hour away from here, so I will have to contact them.

The internest try to tell me I had Irritable leg syndrome because of my leg pain, the Colonoscopy doctor said He thought I had Irritable Bowel Syndrome because of the blood in my stool, I thought I had Irritable Doctor syndrome by the time I was through seeing them all

I love you guys. Thank you so much for being here for me.

Alice

Rosemary, you are so quick to answer and take care of others aren't you? I have six treatments, one every monday for six weeks. I did notice my bones hurting and aching more after the treatments, but my feet have gradually started hurting.

I tried to explain the symptoms to my URO ever time I went to see him, but he said NONE of my pain is related to the treatments of cancer. That is the ONLY response I could ever get from him.

Chronic Fatique syndrome sounds very likely to me, but no one has ever mentioned it when it comes to the doctors. They have never done a blood test for sed rate. That would also be good advice since my hands and somewhat my feet have been swelling lately.

Rosemary, thank you for being here for me. I feel blessed already.

Alice

Alice i only found one urologist in all of Great Bend, Kansas...a Dr. Leidich.
My sister-in-law who is a nurse and works with people on disability suggested that you try to seek out the county social services department. You might qualify for Medi-Cal (Medi-caid).
And again its important for you to get your paperwork from the hospital where you had your treatment so we know what your stage and grade are. Just call the hospital and ask when you can pick up your paperwork.
Are you close to a major city?
I'm so sorry for your pain....i wish i knew what the doctor gave you. When was your last treatment? When he put it in your bladder did you have to hold it in for 2 hrs and then bleach your toilet for the next 6 hours ? Did you drink lots of fluids?
Please try to get us as much information as you can....we'll try to help you.
You have a right to treatment.
And an internist said you had irritable leg syndrome from blood in your bowels?.....That just doesn't make sense.

Alice,

Okay, I'm hearing you. But let's pull this apart a little.

For one thing, I am wondering if the BCG treatments are what is triggering a lot of this malaise that you are feeling? How many treatments have you had? The reason that I ask is because the way that you are describing your pains in the feet and your exhaustion sounds almost exactly how I would describe my own physical state since my treatments. Have you had a blood test for sed rate which would indicate the amount of inflammation in the body? It's so funny to me that you are describing your feet hurting you and that is something that I have noticed also, but just never mentioned to anyone, it seemed so odd.

Could you possibly have Chronic Fatigue Syndrome?

The thing is Alice, don't let your mind get away with you. Yes, your insurance problems, etc seem unsurmountable, but you never know what may show up around the corner.

Never, give up. And, of course, I will keep you in my prayers. Do not worry about that.

Please keep talking to us.

Your BC friend,
Rosemary

Hello Pat and Rosemary,

Sorry I haven't gotten back with you sooner, but I just haven't been feeling so grand.

I just listen to Puff's interview with Dr. Lamb. They were talking about BCG and the procedure done. Rolling over every 15 minutes. That is exactly what they had me do, but I remember the doctor mentioning Chemo and the first thing I asked him if I was going to lose my hair. He said no because it is maintained in the bladder. I don't know, I am just pretty confused of what they gave me, but I will find out soon.

Pat and Rosemary, for some reason, I am feeling very frightened at the moment about my cancer. I usually feel very sensitive about it when I don't feel so well, so maybe it just makes me worry more.

I went into my OB doctor today (the only one that will take me without insurance) in hopes he could come up with something of why I don't feel so well and in constant pain all of the time. I have been seeing him since the bladder cancer was found. We have done testing after testing, doctor after doctor, and I am in tears right now because they cannot find what makes me ill and hurt. I have been fighting this for over two years now. This is why I started going to the doctor in the first place and so like many others, they treated me for six months for a UTI even though I had told my family doctor many times, I knew it was not. That is when they found the cancer and forgot about my problem to begin with.

I asked him to please check for Crohn's disease, diabetes, and whatever else it could possibly be. He had some blood work done up on me today and I have to go in the morning to do some more.

Had blood in my stool a couple of times in which I feel the doctor that did the colonoscopy was given me an educated guess saying he thinks it is Irritable bowel syndrome. Went to an internalist saying he thinks it could be irritable leg syndrome. Notice that they both used "Think"?

I have been waking up about 3 to 4 times a night to use the bathroom. When I wake up, my feet hurt so bad, that it is hard to even walk. My legs ache. My bladder and lower back have constant pain and pressure.

Before all of these symptoms appeared, I was so active. I loved softball and played every summer, I loved going out with my friends in which now have lost contact with, I was active in the community, I excercised and enjoyed life so much. Now, I go to my place of business when I can and then come home from exhaustion.

PLEASE Pat, Rosemary, and any others that read this, put me in your prayer list. I fight the pain every day and I am just exhausted. I am afraid I am not going to get the right treatment before the cancer spreads because of no insurance.

Please Pray For Me!