Quick personal update

Easy now.

Just sayin'.

Tony

johnr -

my radiation was done erroneously with an empty bladder, thus the subject of my ongoing malpractice lawsuit. they could have clamped off my cath, and had me drink water, zap me, then release the water, or they could have syringed up water into the irrigation port on the cath, but my RO's famous words, "Don't worry about it, I got it covered", proved to be flawed. I was feeling burning pain on my 4th zap out of 39, and it continued t o get worse until the last treatment, but by then, the damage was already done. The RO refused to halt treatments to investigate my claims of pain, and thus, how I ended up so damaged.

david

Yes, I beleive theyget careless with the targeting!

 

Goodlife mentioned that there were many of us here that have had radiation and were NOT told to drink water before. I was one of them. At the time I began my rad I was also fairly new here but had learned a lot. And had learned to question things that did not make sense. There was conversation about drinking water taking place here about the time I started my radiation. I took this info to my Rad Onco and questioned it. His response was that sometimes, based on the manner of radiation or the physical anatomy, they recommended or required it. Mine was not the case on either count and he saw no need for it.

I experienced exactly ZERO discomforts, side effects, or pain from not drinking water throughout my treatments (35). The only thing I had that occurred was a slight sense of urgency towards the 6th week (out of 7) and the normal fatigue from the treatments. I am 3 plus years from the radiation treatment and as far as I can tell have suffered no immediate or delayed effects from this treatment. Unless you want to count the fact that my PSA is still going up; and I don't think the water would have helped that.

But more importantly, I also have had experience with non-injury bone breaks and damage. 4 months before my wife was diagnosed with her cancer and the night before were to leave on vacation, I had to take her to the emergency room. No injuries, falls, bumps or otherwise and she had two broken ribs.

We later learned that her cancer had a propensity for bone damage. As her cancer was one of the blood plasma, it was carried through the marrow and there it would begin to eat away at the bones from the inside. This was not metastasis. Over the years she shrunk from 5'11" down to 5'4". This was entirely due to fractures of the vertebrae. When she passed away there were only two that had not been affected. There was never a fall or other injury that would have accounted for the spinal breaks she endured.

David, I think you need to explore all avenues, tests, scans, etc. to get to the bottom line of your pain. You have endured far more than any one individual should have to and someone, somewhere should be able to tell you "WHY" you are in so much pain. Don't accept "I don't know", We can't figure it out" "Or maybe it is because _____". There has to be an answer, and there has to be an experienced medical professional that can give it to you.

Be well as you can my brother, as always blessings for peace and comfort are headed you way,

Sonny

Also f8's point about Davids meds really needs to be considered, by all of us and David himself. They do help the body, but can affect mood and skew the takers of such medcine's.………. Do not even know a word that conveys my thought and will leave that to the mind of the individual reader of this post. And while we may think we Know, most of the time we only believe.

When I had my CT scans last week I was told to drink 16 oz 45 minutes before, so I did. Turns out the scans were delayed by 30 minutes so by the time I got on the table I couldn't hold it any more. They allowed me to go to the bathroom and let just a little out, and then told me to always have that same amount in me when I get my SRT. So do they think my bladder is calibrated? I plan to have 16 oz 45 minutes before and hold it for 1:15, figuring that's the most I'll have to hold it. Did a dry run yesterday and it worked.

Before I began radiation, they shot the dye into me to scan for the markers, and were most emphatic about drinking 18 to 24 oz. water before they nuked me. Each time I went in for treatment they would ask if I had plenty of water. I got it down to a science with no ill effects. If a clinic didn't tell me about drinking the water, then I would have had serious reservations and a lot of questions.

They had a water cooler in the waiting room and 8oz bottles in a small fridge if anyone needed to top off. Top-notch techs and a wonderful facility.

Bob

I was a new member when that happened and I distinctly remember your post on the burning and even to a newby, it wasn't passing the smell test. You will hopefully win the the lawsuit. But realize it means nothing to what you have suffered and continue to suffer as a result. The only thing I can say is I will pray that that which is is at your core will continue to provide, grace, comfort and strength as you graciously endure…….. Logo

Sephie:

Good points. I hope the casual reader here realizes that David's situation is EXTREMELY RARE. There are hundreds (thousands?) of HW members and while some have had bad experiences with radiation, certainly none rival this horrible situation.

You make a good point regarding the doctor not stopping the tx. When I was having problems, my RO was very quick to say "we can stop now." But, as I relayed earlier, he was useless when I was having some problems (which, as I figured out, fortunately within the first 2 weeks, was due to not drinking the water early enough before the radiation sessions).

Mel

logo - no amount of money, will ever pay me back for the pain and suffering I have undergone, and still deal with daily. its more about getting justice at this point. money will never fix my broken body, or give me my life back the way I use to be able to enjoy certain aspects.

sephie - yes, my uro and RO worked closely together before treatments began, they mutually agreed that putting a suprapubic cath in me made sense, before SRT, because I had a long record of stricture issues, and knowing that radiation can cause swelling, etc. plus if I had a serious stricture occur in the middle of radiation, it would have been a serious situation to deal with. my uro also contacted the RO about the last 3 weeks of SRT, complaining to her about my reports of burning pain. it was only then, did she reluctantly admit that perhaps scattering was going on, even though she denied that was even possible at first.

mal, thanks my friend. least I can't have a bladder issue like yours, because mine is all dried up and emptied and disconnected the past 2 plus years.

david

sephie

no, uro didn't check for any interior bladder tissues at the time, two reason. first, it was already a long complex surgery, and second, he would have had to enter the bladder through my urethra, as is the normal approach, and at that time, my bladder neck had already completely scarred shut tight, making that path impossible.

as far as scattering, or the possibility of it, RO check nothing, did nothing, and it was full speed ahead on the remainder of my SRT treatments. Guess she wanted to make sure I got it all done, problems or not. I find that irresponsible of her as well. It was the RO's responsibility to make sure it could be safely delievered, not the uro. He did his part, and did the op for the suprapubic cath perfectly.

still waiting to meet with oncologist, been a complicated last couple of weeks trying to get anything accomplished. frustrating, but only so much of it is in my hands.

david

BillyMac said about David:

"You are one of nature's true gentlemen and one of the main reasons of why Healingwell is so helpful to the newly diagnosed."

Hear hear, David, hear hear.