I made another mistake and want confirmation of my current thinking. We have a local hospital where most of the staff is good but it is run by Adventists Health and their only concern is making money not patients health.
On the way back from my last Pluvicto treatment I felt that my neck was getting quite stiff and painful. I did not think more of it until I tried to get up to pee in a urinal later that night and could not get up and had severe (level 9 or 10 ) pain. I had to struggle for several minutes to be able to positin myself and support my head so I could get out of bed. Unfortunately my husband had his phone turned off so I could not call for help. I could barely walk tiny baby steps all the while paying attention to my pain and how to minimize it.
We managed to get me into the car and drive the 2 hours to the local hospital having to navigate dense fog on the way. Having had bad experiences with this hospital we carefully weighted the advantages of going farther or not. I called in advance to be sure the ER doctor from hell was not on duty.
The staff was all nice and I felt we had lucked out this time. The doctor ordered a CT scan and it was done. I got delaudid (sp) which was a real relief. We waited hours for the results of the CR scan which was farmed out to India or ??? It was after midnight and the local radiologist was not there. I have n o problem with this, there are talented radiologists all over the world.
The results were that there was no fracture which was relief. The pain meds still were in effect so we drove home through fog again. I was exhausted and slept for maybe 18 hours to we awakened by a call from the ER. A very nice sounding doctor seemed very concerned. She said that the CT was misread and that now that the local radiologist reviewed it it was clear that I had a major fracture to C1 and that I needed to get there right away to have a collar fitted and consider further treatment and medication.
I explained my situation and thinking very clearly saying exactly when the pain started, the sudden onset etc and all about the cancer in the area. When it was determined that there was no fracture I was relieved but also very concerned. Why this sudden (seriously excruciating) pain, if it was not caused by some sort of trauma?
We are waiting for the weather to clear and I have a oft collar on.
I am pretty sure that Adventists farms out the scans to the cheapest place they can. This is not OK. Driving back on the dirt road to home I could have easily had severe spinal damage had we hit an unexpected bump in the fog.
I am not complaining about the hospital staff at this point, just the crappy radiologist who was hired to look at my scan.
I have pretty much decided that this hospital needs to be completely avoided and if something similar happens we will drive the additional 2 hours to a real hospital.
What do others think about this horror story. What would you do, what should we do? Has anyone had similar experiences?
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spencoid2
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If it was me I would move to be a lot closer to a much better hospital assuming your not tied to a farm or business location. As the cancer progresses your going to be spending more time at the hospital or a hospice. It should also assist in you being able to avoid travelling on rough unsurfaced roads.
I understand that but I want ot keep doing what makes me feel good until it is obviously impossible. I have a wonderful 100 acres in the mountains and can be as noisy or quiet as I want, no nearby neighbors but the one I do have a re great. I get a lot of support from younger people. We have a young friend staying in out cabin for a lot of the year and he helps with things I can no longer do. We have another neighbor who looks out for us and keeps the snow plowed etc. I fix thing for him he does stuff for us.
I have a great machine shop that would be difficult to move. This gives me great joy, I love making things more than anything. I have a concert grand player piano that I have been creating music for (I have been involved in automatic music for nearly 50 years) and cannot imaging being able to afford a house any place else where I could have my shop and piano.
I love cycling with my dogs and would find this difficult in suburbia. We had a house in Edmonds Washington for a while where we spent part of the year. It was not bad, four car garage nearby park for the dogs etc. But we sold it and can not afford to buy anything similar now. If I live long enough I might inherit some money from my father but it is an international will and the chances are that I will die before the French government and the lawyers release any money. I can not even get an estimate as to how much I might get so as to possibly take out a loan to bu a new house. Selling out property would be at a huge loss because legalization of cannabis in out county was so badly managed (in favor of corporate interests only) that our property value dropped form about $1.2 million to maybe $350k now. We have more than that into our houses and other improvements. It pains me to give this all away.
I wish I could get a better idea as to how long and in what condition I might live to help make some really difficult decisions. I am not denying my condition and likely imminent death, it is just difficult to change everything that makes me happy.
I'm really sorry to hear your story although I feel your story is all too common. We acquire things in life that become important to us yet can be a burden as we get older with less available income and sickness. I have no suggestions except to say do what makes you happy and try to prepare for any unforeseen events. Pity you don't have a helicopter. Expected lifespan is difficult. Drs avoid the question. What I have seen for prostate cancer is that from the point the cancer becomes metastatic there is a 30% chance of making it to 5yrs. Of course, we are all different, different histories, treatments, cancer genetics, etc so take it as a very rough guide. I wish you all the best in your journey. Make the best of every day and appreciate your friends, colleagues and partner. We are all, for the most part, in the same sinking ship lol.
can't afford a copter and flight lessons. i do have a young friend who could fly a small plane if i caught her up on her flight instructions and bought her a plane. but she lives in Wyoming or some such place.
this winter will be the test or maybe just the end of me. we have a track vehicle and a neighbor with a cat so we most likely will be able to get out for emergencies but i might consider renting some place if the winter looks like it will be real hard.
i wish i could just get the fucking money from my father's estate. i am trying to get the lawyer and realtor to speed things a long but this is probably not possible.
we have a nice camping trailer and maybe we should be snow birds this winter. i can take along my little things like laser cutter and 3d printer and work on some projects that do not require a full shop. also on my bucket list was to learn to play the drums and i just got a really nice roland electronic set from the local thrift store for $200. I got the special old guy with cancer price. I could do that in the trailer but what i really wanted to do is accompany my 9 foot player piano and that will not fit in the trailer. Oh well. I have a good computer piano synth that will be good enough for practicing. Just need to get my right arm working.
So sorry this happened to you. I wish I could answer your question. My husband was sent home from an NHS hospital with a fractured neck of femur by an arrogant orthopaedic surgeon who decided he knew better than his team.
But then the guy who did the hip replacement at the same hospital was incredibly skilled and kind.
I guess there are good and bad hospitals that have good and bad staff all over the world. I think now we understand that we need to be our own advocate, and if we know something is wrong we will insist on a clearer explanation and/or a second opinion. Not easy I know.
I believe where you live is key to having a good life. Quality of life is everyday, not just the days you need medical care. Could you afford a private ambulance in an emergency?
You might find that going to a Urgent Care facility a better option. My hospital is literally 2 miles from my house, but we go to the Urgent Care 5 miles away because the waiting is much shorter and the care is equally the same as the hospital ER for most situations. I cracked my ribs once playing ice hockey. I was in/out of the Urgent Care in less than 60 minutes and that involved getting X-rays.
Been full-time RVing for 31 years and have had and have a variety of health issues. Many times we were able to find a RV site nearby the medical center or hospital. In a few places RV sites were provided by them. We followed the sun and rarely dealt with any snow🫠. Now in a RV co-op park near Tucson for the snowbird season.
When we started, we joined the Escapees RV Club. Lots of like-minded, friendly folks. I am a leaseholder in the SKP Saguaro Co-op Park in Benson AZ. Our days are full of a great variety of activities, entertainment. dinners, jam sessions, full workshop, etc. We volunteer to do many of the things that make the park work. We have travelers passing thru, so lots of folks to talk with at social hour. You can go to escapees.com and check it out. Email your address to me and I will send you some of our past magazines. mobilrvn@gmail.com
i will check it out but currently i am not feeling very sociable don't want to be a drag. what does it cost to join and stay for a while can you get out of it if you can't handle it. i am feeling somewhat depressed right now and do not want to be a drag. you can email spencer or anything (at sign) poodlex (then the dotcom thingy here)
I have a similar situation. We have 2 hospitals in a nearby town. I would not let anyone there operate on my dog. I let a surgeon remove my prostate in 2018 at one of them. It was life changing. I had to get a surgeon in a big city hundreds of miles away to do another major surgery to mitigate what the first one did to me, but I will never get over it. I was close to suicide. Sadly, you are not alone. I now drive about 50 miles to a college town for ALL of my medical needs, even physical therapy.
I guess it is good to know I am not alone. The people at the local hospital were great in this recent incident but administration makes their job impossible and it is impossible to know in advance what they might fuck up. Yesterday the er doctor was great. I asked him if outside reading of ct scans is a problem and he said that the company they use is horrible and frequently makes mistakes. I just don’t understand how these administrators can so casually endanger the lives of their patients
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How do you travel / fly overseas with the potential of hematuria and urine blockage resulting from radiation cystitis?
Radiation for Advance Prostate Cancer?
Paul
Recurrence with undetectable PSA?
Update: Zytiga failure, Chemo. . . Mike is gone
