Update: May 4th

Finally, some relief and signs of healing. I hope this the beginning of better things to come.

Hey, I'm here still keeping you in my thoughts and prayers...Hope your healing up.

It's funny. In the nearly 8 years since I was dx., my oncologist, my urologist, and my long term PCP (20 plus years) have all given up their private practices and been bought out by big corporate groups.

To me as the patient, when my doctors were on their own, I would typically have 30-1 hour or more visits (actual doctor face time), now I am lucky if its 5-10 minutes. With my oncologist, he only steps in the room after I see the NP, and talks to me for 1-3 minutes. I no longer sense the deep empathy I use to think he felt with his patients.

My PCP, you can tell he's stuffing as many patients into an 8 hour work day as possible.

Getting to be a sad state of affairs.

Starting this week, going back to the VA, to see if they can take on some of my lingering and new issues. It may take longer to get an appointment, but least when I do see one of their doctors or specialists, they take the time to listen.

Just sick of all of it, really surprised I haven't simply given up by now, its not hardly worth the fight anymore to me.

Purgatory, it might be worthwhile for you to understand a little about how medical billing works. You've seen so many doctors, there may be some confusion about which doctor has "the lead" on your various issues.

When a doctor takes the lead role in a complex case which may involve other doctors, he/she can be reimbursed for longer times per visit. When the case meets the "complex" criteria, this longer time may be needed for extended office time, or time spent contacting and coordinating with other specialists. It is important to recognize that some of the additional time will NOT translate into additional face time with the patient asking about the grandkids.

From the doctor's side (that is, from the business perspective), they like having these cases because they can charge one of the highest rates for lots of minutes.

The thing is that only ONE doctor has the lead on an issue; others are just consulting specialists. The Medicare system will boot-out multiple doctors taking the lead for the same issue, and they (the doctors) get behind the scenes "demerits" against them if they do things that appear to be fraudulent. But, with a lot of handoffs back and forth as in your case, there may be some confusion about who has the "lead."

I think these type of business relationship discussions are worth having with your doctors rather than leaving it open and unaddressed. We wouldn't leave it open with other service providers. And clearly this is causing you some frustration. While patient's should always be organized and respectful of their doctor's time, there's no reason to leave things unaddressed or unknown.

Tim,

The doctor pushing for the Duke referral backed down. I have asked twice more about it, and getting nothing but lame excuses. I see my oncologist in July, and will see if I can get him to push for it.

Meanwhile, the VA still tells me that they do not have staff oncologists that are as good or qualified as mine.

Just because a long term chronic pain person is still on meds years later, doesn't imply that the meds aren't helping. They aren't intended to fix or cure anything, they are to dial back the 24/7 pain levels to where one can be functional. Some days they work better than others for me, some days no amount would ever help. I could push and get higher levels, but choose not to, because I want to be in full control of my brain and thoughts and be as physically able as I can, even though its a shadow of my former self. It's all about trade offs.

David,

Your PCP won't give you the time you need, but then withdraws his referral to Duke Medical Center. Does he have any kind of email system to communicate with you regarding your list of concerns? I have had good success with this with my parents' geriatrician (my dad died about the same time as you mom), and now that my mom is in an Adult Family Home and unable to get around, it is even more helpful.

Divo, so good to hear from you and on behalf of Pete. Real LTNS. Too long.

Yes, I remember Pete's situation well, hope he's still holding his own. It's really tough dealing with the Colostomy and Urostomy at the same time, I am fearful it will come down to that for me at some point.

Every time I have a new blockage, the ER surgeons remind me that it is a very possible outcome if it doesn't resolve on its own without and emergency surgery. Two ER visits ago, I was minutes away from being wisked to surgery.

Told my wife, I don't want to wake up and find I have a colostomy as well.

My wife generally changes my appliance weekly for me, just easier for someone standing over the stoma to line it up right. I can change my own in an emergency, and did so 2 weeks ago while she was at work. To make it easier, she pre-cuts the center hole on 2-3 appliances, so that if I have to do a change, I can do it on my own. Still not easy, standing in front of a mirror, and trying to center the hole on the appliance over the stoma. Very important, as you know, with an Urostomy. Mine is convex, which is not normal. Most are concave and stick out - making it easier to line up. With an in-ward stoma, the hole in the appliance has to be dead center over the "hole" or stoma, if its even off a little bit, it will either end up leaking, or slowing down the flow into the bag.

It's all trial and error until you get a system down of your own, sounds like you got it. I know none of his issues have been easy, hope his spirits are good despite a rough journey. My best to both of you.

David

David, do you have a spastic colon? Is that is what is making you cramp?

Peter has the same type of urostomy stoma that you have. a convex. It took quite a while to find the right appliance to fit and to work, but we do have it down pretty well after two years. The colostomy is usually pretty easy to deal with, unless there is some kind of a food allergy etc..

It is really unbelievable that the problems that you and my husband have are not because of the cancer. The problems have been the treatments. We have a new oncologist, as ours retired. We are still at MSK. Take care, and we will be thinking and praying for you and your wife. As a wife, I know what she is going through. It is very painful to watch your dear husband suffer. Very difficult for both. my best to you., Diane