this angered me...

[steinbok]

New here.    Have any of you participated (with your loved one) in a clinical trial?
Well, we did in August 2023, when SOC, standard of care (quackery), failed to keep a glioblastoma diagnosis at bay, and it recurred.  Eventually he declined to the point that I had to pull him out of a SNF, skilled nursing facility, and into a Board & Care home,  AND put him on hospice at the same time, because the oncologist gave up (nothing else we can do!).  
I got a call the other day (12/4)(It went to voice mail) from one of the  facilitators of the clinical trail (that fell flat on its face), asking how he was, but it was in such a way (my read of it), that the only reason they were calling was to get their data numbers accurate, as they do not care that he will die any day.   I have not called back, yet.   Right now, if I were to call, they would get an earful, and no answer.

[KayC]

No, no clinical trials, just a doctor that neglected to refer him to a cardiologist, didn't take him seriously.  
 

Grief Process

This is not a one-size-fits-all, what strikes us one day will be different a few months/years from now, so please save/print this for reference!

I want to share an article I wrote of the things I've found helpful over the years, in the hopes something will be of help to you either now or on down the road.

TIPS TO MAKE YOUR WAY THROUGH GRIEF

There's no way to sum up how to go on in a simple easy answer, but I encourage you to read the other threads here, little by little you will learn how to make your way through this.  I do want to give you some pointers though, of some things I've learned on my journey.

• Take one day at a time.  The Bible says each day has enough trouble of its own, I've found that to be true, so don't bite off more than you can chew.  It can be challenging enough just to tackle today.  I tell myself, I only have to get through today.  Then I get up tomorrow and do it all over again.  To think about the "rest of my life" invites anxiety.
• Don't be afraid, grief may not end but it evolves.  The intensity lessens eventually.
• Visit your doctor.  Tell them about your loss, any troubles sleeping, suicidal thoughts, anxiety attacks.  They need to know these things in order to help you through it...this is all part of grief.
• Suicidal thoughts are common in early grief.  If they're reoccurring, call a suicide hotline.  I felt that way early on, but then realized it wasn't that I wanted to die so much as I didn't want to go through what I'd have to face if I lived.  Back to taking a day at a time.  Suicide Hotline - Call 1-800-273-8255 or www.crisis textline.org or US and Canada: text 741741 UK: text 85258 | Ireland: text 50808
• Give yourself permission to smile.  It is not our grief that binds us to them, but our love, and that continues still.
• Try not to isolate too much.  
• There's a balance to reach between taking time to process our grief, and avoiding it...it's good to find that balance for yourself.  We can't keep so busy as to avoid our grief, it has a way of haunting us, finding us, and demanding we pay attention to it!  Some people set aside time every day to grieve.  I didn't have to, it searched and found me!
• Self-care is extremely important, more so than ever.  That person that would have cared for you is gone, now you're it...learn to be your own best friend, your own advocate, practice self-care.  You'll need it more than ever.
• Recognize that your doctor isn't trained in grief, find a professional grief counselor that is.  We need help finding ourselves through this maze of grief, knowing where to start, etc.  They have not only the knowledge, but the resources.
• In time, consider a grief support group.  If your friends have not been through it themselves, they may not understand what you're going through, it helps to find someone somewhere who DOES "get it". 
• Be patient, give yourself time.  There's no hurry or timetable about cleaning out belongings, etc.  They can wait, you can take a year, ten years, or never deal with it.  It's okay, it's what YOU are comfortable with that matters.  
• Know that what we are comfortable with may change from time to time.  That first couple of years I put his pictures up, took them down, up, down, depending on whether it made me feel better or worse.  Finally, they were up to stay.
• Consider a pet.  Not everyone is a pet fan, but I've found that my dog helps immensely.  It's someone to love, someone to come home to, someone happy to see me, someone that gives me a purpose...I have to come home and feed him.  Besides, they're known to relieve stress.  Well maybe not in the puppy stage when they're chewing up everything, but there's older ones to adopt if you don't relish that stage.
• Make yourself get out now and then.  You may not feel interest in anything, things that interested you before seem to feel flat now.  That's normal.  Push yourself out of your comfort zone just a wee bit now and then.  Eating out alone, going to a movie alone or church alone, all of these things are hard to do at first.  You may feel you flunked at it, cried throughout, that's okay, you did it, you tried, and eventually you get a little better at it.  If I waited until I had someone to do things with I'd be stuck at home a lot.
• Keep coming here.  We've been through it and we're all going through this together.
• Look for joy in every day.  It will be hard to find at first, but in practicing this, it will change your focus so you can embrace what IS rather than merely focusing on what ISN'T.  It teaches you to live in the present and appreciate fully.  You have lost your big joy in life, and all other small joys may seem insignificant in comparison, but rather than compare what used to be to what is, learn the ability to appreciate each and every small thing that comes your way...a rainbow, a phone call from a friend, unexpected money, a stranger smiling at you, whatever the small joy, embrace it.  It's an art that takes practice and is life changing if you continue it.
• Eventually consider volunteering.  It helps us when we're outward focused, it's a win/win.

(((hugs)))  Praying for you today.

 

[steinbok]

Thank you, Kay for the article and the hugs.   I have been anticipatory for probably 6-9 months.  I knew that the percentages were poor, with this type of brain cancer, and steeled myself to having to being single again.  I have a great network of friends and fellow grievers who have lost loved ones to cancer.

[KayC]

I am just so sorry.  I'm not sure that anticipatory helps prepare someone, it's just tough all the way around.

[steinbok]

Kay, I think I know.   I'm probably going to cry my eyes out when they tell me he's died.   No amount of anything will prepare you for this.      Just getting things in order for the day, so there's less to be paralyzed about when it happens

[widower2]

11 hours ago, steinbok said:

New here.    Have any of you participated (with your loved one) in a clinical trial?
Well, we did in August 2023, when SOC, standard of care (quackery), failed to keep a glioblastoma diagnosis at bay, and it recurred.  Eventually he declined to the point that I had to pull him out of a SNF, skilled nursing facility, and into a Board & Care home,  AND put him on hospice at the same time, because the oncologist gave up (nothing else we can do!).  
I got a call the other day (12/4)(It went to voice mail) from one of the  facilitators of the clinical trail (that fell flat on its face), asking how he was, but it was in such a way (my read of it), that the only reason they were calling was to get their data numbers accurate, as they do not care that he will die any day.   I have not called back, yet.   Right now, if I were to call, they would get an earful, and no answer.

I'm so sorry. You don't even want me on the soapbox about the lobotomized monkeys who run clinical trials. Yes, my beloved and I tried a clinical trial or two when her normally prescribed treatments stopped working. But many trials won't let you participate in a trial unless you haven't tried anything else. Can you ####ing believe that? Like why would someone try some longshot experimental trial instead of the normally prescribed treatments which have a far better track record? As you said, they don't give a flying hoot about people's lives; they only care about getting their numbers right, and especially about trying to make those numbers as good as possible. Sewer rats are more worthy of life on this Earth than most of them IMO. 

I hope I'm not being too subtle about this. And sorry for the rant, but as you can see, wow this hits a nerve and I share your rage.  The oncologist she had for the bulk of her sickness was also a joke.

Again I'm so sorry for what you're going through and wish you the very best despite the obstacles!

[PO1LarryLost]

I also have a story similar to yours.   My husband had an experimental surgery for his heart failure.  He lived longer than anticipated but unfortunately lost the battle on Oct 30l.   About 10 days later, he received a letter from the hospital as part of a donation drive - the envelope had a graphic that was a quote from a patient saying they were alive because they picked a research hospital.  HOLY COW!  was that a bit insensitive!   I still have his phone on (can't bear to have it disconnected yet) and he still gets calls from the pacemaker monitoring company for him to send in his readings - from the pacemaker that was placed in the hospital that he never left.   Lastly, the pharmacy - Walgreens is the WORST!!!  I have called, stopped by multiple locations, given a death certificate, sent a death certificate to their mailing facility, and they continue to call to ask if he would like prescriptions renewed.   It is quite crazy and you are not alone.

Thank you for letting me vent on your post.  

[Sparky1]

1 hour ago, PO1LarryLost said:

received a letter from the hospital as part of a donation drive - the envelope had a graphic that was a quote from a patient saying they were alive because they picked a research hospital.  HOLY COW!  was that a bit insensitive! 

Wow, talk about cold hearted insensitivity. I got the same letter from the hospital my wife passed away in. My wife went in the hospital alive and after the 'treatments' they gave her, she got worse and passed away. I still get the odd letter from the hospital and even phone calls from the president of another hospital looking for donations. And.........this is the kick in the you know what, every time I go to Walmart they ask if I want to donate to a kids hospital. Okay, I did once or twice but every time I come shopping there? I'm sure treatments that actually work would have been found by now.

[steinbok]

2 hours ago, PO1LarryLost said:

I also have a story similar to yours.   My husband had an experimental surgery for his heart failure.  He lived longer than anticipated but unfortunately lost the battle on Oct 30l.   About 10 days later, he received a letter from the hospital as part of a donation drive - the envelope had a graphic that was a quote from a patient saying they were alive because they picked a research hospital.  HOLY COW!  was that a bit insensitive!   I still have his phone on (can't bear to have it disconnected yet) and he still gets calls from the pacemaker monitoring company for him to send in his readings - from the pacemaker that was placed in the hospital that he never left.   Lastly, the pharmacy - Walgreens is the WORST!!!  I have called, stopped by multiple locations, given a death certificate, sent a death certificate to their mailing facility, and they continue to call to ask if he would like prescriptions renewed.   It is quite crazy and you are not alone.

Thank you for letting me vent on your post.  

Please do vent.  We're all going through a lot of *stuff* right now, and my apologies, in advance, if this triggers something for you.    This is very raw for me right now, watching my life partner die. 
I plan to keep his phone past his death.  I don't know how long for, since he gets mostly junk calls now.  I may just message all his contacts, tell them where to go, or just transfer my current number to his plan and just leave it at that.

 

[foreverhis]

On 12/8/2023 at 6:51 AM, steinbok said:

I plan to keep his phone past his death.  I don't know how long for, since he gets mostly junk calls now.

You should keep it however long you need to keep it and as long as it gives you comfort, assuming finances aren't affected.

I'll tell you a story. 

John and I had the same home phone number from the day we bought our house.  Of course we had cell phones, but we had two land lines.  One was for John's business, which we cancelled after he stopped working, and the other was personal.  About 18 months after John died, I switched it from basic land line with AT&T (no features; no long distance) for $45/month to VOIP with all the bells and whistles for $15/month.  I called that good and kept the number.  Over time, I used the home phone less, while receiving fewer real calls and more spammers/scammers.

Last summer, the rate went up to $20/ month, which is not at all outrageous, but it happened about the same time I turned 65 and lost quite a bit of income.  I had already figured out ways to streamline/reduce some expenses and move our modest savings/retirement into higher yielding accounts.  But I am always looking for ways to save so I can continue to live a reasonably comfortable lifestyle.  Yet I couldn't bring myself to cancel the home phone.

In September at some point, I realized I hadn't used the home phone in weeks.  And still I couldn't let it go.  It took until last night for me to be able to screw up my courage, call my internet provider, and ask what I needed to cancel my home number, while keeping internet and mobile phone service.  It was pretty easy and the CS representative was excellent.  As part of the process, she had to ask me if I knew that canceling my phone without moving the number meant I'd lose the number.  As I answered, "Yes, I understand," my breath caught a bit. 

When I texted our daughter to let her know, she had the same reaction.  We could ask why it still hurt after more than 5 years, but the fact is that some things hit us emotionally no matter how much time has passed.  Don't let anyone tell you otherwise.  Make decisions based on what's best for you.

[Sar123]

@steinbok I kept my husband’s phone for 9 months before canceling it. I would look at his lasts texts and I would cry. It was so hard to let it go. You’ll know when the time is right. 
 

My husband died from pancreatic cancer. The first chemo was brutal. It made the cancer inactive, but did not shrink the tumor unfortunately. He tried a different chemo and then radiation and neither worked. By that time, the cancer had spread to his liver. I tried to get him into a clinical trial, but Mayo refused him and told him to go back on the chemo he had in the beginning. They didn’t tell us it would poison his liver. They said he had 6 months to live, but with their medical advice, it turned out to be 6 weeks. He would have not gone back on chemo had he known that. They knew it would poison his liver. Mayo has a great reputation, but when it comes to pancreatic cancer, I wouldn’t recommend them.

As for clinical trials, most chemos and therapies that do work came from clinical trials. Unfortunately, it sounds like your husband was in a bad one and I’m sorry for that. 

i know how horrible and awful it is to watch your loved suffer with pain. It’s not easy. None of this is. Coming here has helped me and I hope it can help you as well. 

[steinbok]

51 minutes ago, Sar123 said:

@steinbok I kept my husband’s phone for 9 months before canceling it. I would look at his lasts texts and I would cry. It was so hard to let it go. You’ll know when the time is right. 
 

My husband died from pancreatic cancer. The first chemo was brutal. It made the cancer inactive, but did not shrink the tumor unfortunately. He tried a different chemo and then radiation and neither worked. By that time, the cancer had spread to his liver. I tried to get him into a clinical trial, but Mayo refused him and told him to go back on the chemo he had in the beginning. They didn’t tell us it would poison his liver. They said he had 6 months to live, but with their medical advice, it turned out to be 6 weeks. He would have not gone back on chemo had he known that. They knew it would poison his liver. Mayo has a great reputation, but when it comes to pancreatic cancer, I wouldn’t recommend them.

As for clinical trials, most chemos and therapies that do work came from clinical trials. Unfortunately, it sounds like your husband was in a bad one and I’m sorry for that. 

i know how horrible and awful it is to watch your loved suffer with pain. It’s not easy. None of this is. Coming here has helped me and I hope it can help you as well. 

Sar:  I've heard  many good things about Mayo, but not every experience is going to be good.   My situation was with a university hospital, UCSD,  proton radiation nearby, and some of the better reputation doctors that they had to offer.  They didn't offer anything over SOC which was garbage for our situation.  The same dr, oversaw the clinical trails too, had some lower level person get the details, have me keep records, and start the trail after the recurrence of the tumor, 3 months after SOC failed us. (they knew it would, and the only thing you get out of all this is an "extension of life") The QOL was poor, and all this has done is made money for the clinics, hospitals, while poisoning my husband, who's immune system was shot to begin with, had skin as thin as an onion (on elequis for 12 months!-- we determined when we'd take it, and it was about half the time, half the dose, because he didn't need is blood thinned anymore than it already was--- all he would have to do is bump into anything, and boom, more blood!      Yes, he was in a bad one.   it worked alongside lomustine which did nothing to stop the aggressive GBM.  All he did was get worse, and was pulled from the study 3 weeks later (August 23).. Soon after, he was back in the hospital, for another rehab, and will likely not return to the house, hospital 9 days, SNF 1 month, getting infusion treatments using avastin.

I could write a book on the trials of all this, and he kept records of ALL the quack doctors (both natural & western) he saw to try and solve a pain issue he was never able to solve over 30 years.   I have also chronicled all this hell that I've been through the last 17 months, from that day where I knew something was up because of his erratic driving to when I aborted my trip 4 days after leaving to find him in a stupor at midnight at the house, to the ER, rehab, housefire, property behind me getting purchased by a developer who want to put 3 2 story buildings behind my backyard, all in the span of 3 months, the continued care for my husband, the insurance claims for the fire, the 3 moves we did, the return, the recurrence, and now him in hospice, at a board and care home.
  You know what he said his best remedy was?  getting a massage and seeing his chiropractors.      Otherwise he was masking the pain and continued to fruitlessly search for an answer for 30 years     Maybe, that's why he has the tumor.....   I thought about just pitching everything and being done with it, but another part of me wants to expose all this fake crap that doesn't work, though they promise that it might at the start.     Gotta keep the hopes high for at least a little while, so th emoney flow can continue.  
I am quite angry at the results of all this... the time wasted, the empty promises, the arrogance of everyone involved, and making appointments where it required me to sit in traffic with all the other fools returning from their jobs to their homes.      And I hated driving with a passion.
I will NEVER darken the door of a quack cancer center.
I hope by joining, I will, like you, find some peace and be able to process all this grief I have been having.  Every day, I cry, and he's still living, if you can call the last 17 months "living"  I have quite a good support network, shoulders I can cry on, an activity I do a lot of  (cycling--- it's my meditation---whenever I turn the pedals and  climb hills).  That activity has kept me SANE throughout all this nonsense.

[KayC]

We had just renewed our AT&T plan and gotten him a new phone, so my SIL took it over as finances were tight and George's income gone.  Years later that SIL is gone, phone long gone...

[Sar123]

@steinbok I have only read about the positive side of clinical trials from pancreatic cancer support groups so reading your story about the negative side has opened my eyes to what can happen when it doesn’t work. I would get down on myself for not pushing more to get him into one. Your story has given me a new perspective. What phase was your husband’s clinical trial in? A friend of mine has a cousin who was diagnosed with pancreatic cancer a few months ago. They told her if the 1st round of chemo didn’t work, they would put her in a clinical trial. It didn’t work so she’s now in a clinical trial. I haven’t heard how it’s going. 
 

I’m still angry at my husband’s doctor who didn’t take his symptoms seriously.  He told him it was just old age (he was 65 at the time) and to take probiotics and heartburn meds even though my husband told him it wasn’t heartburn. Again, I have to remind myself I can’t change the outcome. 

I am so sorry for the nightmare you and your husband are going through. It’s so hard to watch them suffer. My husband didn’t deserve that and neither did yours. . 

 

[KayC]

Wow, my BIL died from stomach cancer, he'd been on Nexium for heartburn, that's what caused it, but they've known this for years and STILL the USDA approves it. 

[Sheilz]

On 12/8/2023 at 11:42 PM, Sar123 said:

I kept my husband’s phone for 9 months before canceling it. I would look at his lasts texts and I would cry. It was so hard to let it go. You’ll know when the time is right. 

I'm going on 7 months with his phone still activated.  I just can't cancel it yet.  When I finally went through his voicemails I realized he kept all the voicemails that I sent him that I randomly did all the time to tell him I love him.  But sadly I a couple days before he "left" I cleared out all my voicemails.  I only have one from him that he left me about a couple hours before "it" happened reminding me to get gas on my way home.  I miss him so much.  He was my everything.

[KayC]

Some carriers will allow you to keep their phone as is but w/o  making/receiving calls, it's memorializing it, you might want to check into it.

[Sheilz]

1 hour ago, KayC said:

Some carriers will allow you to keep their phone as is but w/o  making/receiving calls, it's memorializing it, you might want to check into it

I went to Verizon a couple of weeks ago to see about that.  They told me that his messages, voicemails, etc would be lost because he was still old school & loved his flip phone.  So nothing was backed up to the cloud.  It just makes me so sad.  I may always keep it going.  

[AJ4]

We did not get into any clinical trials with my husband, although he tried when it proved that the regular cancer drugs were not working.   They had nothing for him locally, but he was determined to keep trying so when  a St. Louis doctor told him they might have something he and his dad drove all the way down there (8 hours each way) only to be told no, they didn't have a clinical trial he could be in.  I was angry that they couldn't take his information over the phone and tell him yes or no, or get lab results faxed to them, easy enough, but made him go on a long car trip when he was sick and in a lot of pain just to tell him no.   

[KayC]

OMG, I would be beyond angry!

[widower2]

On 12/9/2023 at 12:51 AM, steinbok said:

Sar:  I've heard  many good things about Mayo, but not every experience is going to be good.  

That's putting it mildly. We went to several of the so-called best cancer centers in the world (Johns Hopkins, MD Anderson, etc) and ultimately they were a joke (or should I say the Drs we dealt with were). I don't say that to imply they should be dismissed; it's more of a general exasperation of the state of our medical system today.  

[widower2]

On 12/9/2023 at 8:44 PM, Sar123 said:

What phase was your husband’s clinical trial in?

This merits highlighting. For clinical trials, you don't want anything other than Phase III or IV trials. The rest are just "we want to use you as guinea pigs because we don't have a clue how or if this might work."  Screw that. Of course you could say that to some degree about any trial, but the others even more so. 

[steinbok]

ours was a phase III.  They worked it with lomustine, a proven FDA drug.   It did nothing.    But, SOC did nothing too.   so, it didn't matter what order it ended up in. Most trials are for new instances of GBM, we had very few options with recurrences.    Everything SOC was exhausted before giving up, with the exception of avastin, which would've only held him at the condition that he was in, which was already debilitating as it was.   
In any case, I am going to tell him to let go tomorrow because he is in misery, is no longer eating or drinking, is barely able to speak-- i tell him to nod his head yes or no.   He has done so much for me to make me secure as I age, that I could never pay him back.  I can allow him to let go, because I think he is waiting for that cue, as I have been a fierce advocate for him throughout the process.  He does know that I plan to compile his data, write my own opinions, and make it into a publication or a book (he kept meticulous records of ALL the quacks he saw to solve his pain (and other issues) from 1997 onward.    He never found his answer.  

I plan to contact some of those doctors to tell him he's basically dead, no thanks to them. They only took his money, gave him false hope, and left him for dead, making promises they could not keep.

I cry every day, especially in the mornings, and seeing him daily and watching the decline just strikes daggers into my heart.  

[Sar123]

14 hours ago, steinbok said:

, I am going to tell him to let go tomorrow because he is in misery, is no longer eating or drinking, is barely able to speak-- i tell him to nod his head yes or no.  

This brings back memories of just before my husband passed. It was similar to what what happened to mine.  He was in so much agony the last couple of weeks. He was in hospice at home and I’m forever grateful to my kids for taking care of him. I had taken care of him for months, but fell apart when they came back home (one lives in another state and the other in another country) and took care of him- from taking him to the bathroom to feeding him to repositioning him in bed- they did it all and stayed with him constantly (they slept on the floor next to his bed).  It was hard to see him suffer so I understand what you’re going through. As much as we want them to stay, seeing them in so much pain is hard. Eventually you know when it’s time to let go. 
 

Thanks for sharing your info about the clinical trial being in phase 3 and all that your husband went through. I now have a better understanding of clinical trials, “the good, the bad, and the ugly.” 
 

I hope you keep coming here. It helps to have people who understand what you’re going through. In the early days, I read a good tip on this site that I have used throughout the year. Someone said when she wakes up in the middle of the night, she lists the states in alphabetical order and I have used that and changed it up with listing things alphabetically. When I get depressed and start remembering what was going on a year ago, I stop, and do the alphabet game. It’s like a light switch because I immediately stop those depressing thoughts. 

[steinbok]

I probably will continue to come, as long as there is conversation.       I am finding myself needing to be around others because being in this house where we both shared many happy times, which I will never see again, at least with him in the human form, is distressing, depressing, and disconcerting.    I go out a lot, and then visit him at the board and care.  Tonight, I am going over there and we're watching wheel of fortune and jeopardy  I'm bringing over some of his favorite cheese.  
To keep myself somewhat even keeled, I ride a bicycle a lot, and end up at the  moreso with a bike outfit, than street clothes.

[widower2]

23 hours ago, steinbok said:

I plan to contact some of those doctors to tell him he's basically dead, no thanks to them. They only took his money, gave him false hope, and left him for dead, making promises they could not keep.

I'm so sorry. If you decide to greet any of these doctors with a baseball bat, I will happily perjure myself in court and swear you were with me at a party that night. 

[steinbok]

15 hours ago, Sar123 said:

Someone said when she wakes up in the middle of the night, she lists the states in alphabetical order and I have used that and changed it up with listing things alphabetically. When I get depressed and start remembering what was going on a year ago, I stop, and do the alphabet game. It’s like a light switch because I immediately stop those depressing thoughts. 

I tried this this morning,  still could not go back to sleep, then I started crying. (like I seem to do every morning- routine), and just got up at the usual 5am.  But, I usually get up that early to start bike rides      Today, I have "adult things" to do.

[AJ4]

Please please please do not harass or threaten your doctors. They do the best they can, I believe.  It's just not every condition is curable. Especially cancer. We (humanity)just are not there yet even with the best efforts of research and doctors. But they do try.

[KayC]

Some do, some don't.  Some of what our people here have gone through no one should ever experience!  I admire the ones that take it to court, to make changes...

I don't think anyone here would really threaten a doctor, if you're referring to widower2, he was kidding, you get to know his humor here, some deal with humor as a way of coping...my dad did, we all got that from him.  My dad's way wasn't to threaten anyone, but to have another drink...thankfully we didn't get that.

[AJ4]

Having experienced the anger, the abusive language, the threats, violence from the other side, it's dispiriting and even heart breaking what some of our medical professionals have to put up with.   99% of them do not deserve it. They devoted their life, their resources, their intelligence, caring and compassion to put up a good fight against what no one can win, which is the inevitability of suffering and death.   

I'm no stranger to the anger of grief.  For a long time every time I saw a sign or a post or a collection box for "Donate to cure cancer" I would get a flash of anger "Why collect all this money when you couldn't save MY PERSON who was my whole world?"  But even when I was angry I didn't act on it because I realized it was misplaced.  My anger was at the disease, not the people who are working to save others, who have saved people that would have died 100 years before when cancer research wasn't a thing.  No, it didn't work for my husband, but cancer is a very tricky thing of many types, not just one form, and some of those researchers have discovered things and medicines that have saved people who would have otherwise died of it.   

Are their individual doctors who act badly? Sure.  But are there also doctors who are using the best medicine available and still losing patients? Yes. 

There are also systems that are very bad and I could go on all day about the problems of the health care system.  But I won't-  I'd get all worked up.

[KayC]

I agree.  I'm an administrator for a large international diabetic group online.  We post videos from doctors all the time.  They are not what the AMA recommends (low carb instead of meds...sure meds are necessary for newly diagnosed a lot of the time...but along with low carb and walking).  Our regular doctors are genuinely puzzled but it works.  And you can't argue results.  

l like my doctor (rural, only one clinc) but do we always agree?  No but we respect each other.  

But what some people have experienced in the loss of their person is horrific and inexcusable. 

[widower2]

22 hours ago, AJ4 said:

Please please please do not harass or threaten your doctors.

I was (mostly) kidding. Sorry, sometimes communication on the internet isn't always as clear.

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They do the best they can, I believe. 

Some do. It is my general experience/impression that a disturbing number do not. Or if that is their best, they should be serving fries somewhere instead. 

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But they do try.

And again...

[widower2]

7 hours ago, AJ4 said:

Having experienced the anger, the abusive language, the threats, violence from the other side, it's dispiriting and even heart breaking what some of our medical professionals have to put up with.   99% of them do not deserve it. 

I quite disagree with you on that number...and it pales in comparison to what many victims of illness, disease, etc put up with far too often. Does anger and abusive language kill the doctors? No? Well, that's what happens to many patients, thanks to medical staff incompetence and/or apathy. 

I know there are great doctors out there and no doubt patients behaving badly without cause and that's disgusting as well. But at least some of those patients have (to a degree of course) a valid reason for their anger/etc. What's the Dr's excuse? Not making enough money?

I apologize for any offense but I've seen (and heard from others) far too much of the medical profession to feel much sympathy for doctors, generally speaking of course. I've encountered more than one worthless excuse for a nurse as well. Oddly it seems that the more technological advances we make in medicine, the worse those doling it out get. 

[steinbok]

In addition to, (how I viewed it) insensitivity, by the clinical trial person, I've had one or two case nurses speak to me as if I don't understand anything about the whole process.  When you're as fierce of an advocate, you learn a lot, but can't get everything.  This nurse tried to, in a robotic way tell me what the "ramifications" of hospice was.       Soon after the shock of what I was hearing, I have been ripping into her a couple of times.      And I don't think I'm done yet.   I got zero empathy from any of the people I worked with.    I did get a response from the dr, though.     He's probably the best they have....  The only thing they would try was "more radiation"      My husband rejected that.   He hated the first go-round of it.   
It's like our situation is just on a conveyor belt.   "When they get too sick, lets just toss them aside and say, 'hospice'", and quit.   Easy answer for them

It's just a death care system, that has just as much guesswork as someone pedaling RSO, Fenben, or other 'cures'     Western Medicine is a money machine.

[KayC]

I'm afraid I agree with you.

[AJ4]

If you don't think medical people deserve a minimum standard of politeness, well I don't know that I'm going to convince you.   https://news.warrington.ufl.edu/faculty-and-research/being-rude-to-your-childs-doctor-could-lead-to-worse-care/

However, just read this article.   There could be selfish reasons to hold your temper as well.   

[KayC]

We have all had different experiences in life, some have been extreme disregard and letdown for our soulmate's very life.  Some have been those who did their best to save them, albeit being beyond them to do so.

Such emotional experiences are hardly going to be altered by something someone says here.  Let's just respect each other's opinions and where they are coming from.

[widower2]

2 hours ago, AJ4 said:

If you don't think medical people deserve a minimum standard of politeness, well I don't know that I'm going to convince you.  

You don't need to, since no one's saying that.

Also you realize that link doesn't exactly support your cause, right? But what it said hardly surprised me. 

[steinbok]

10 hours ago, KayC said:

We have all had different experiences in life, some have been extreme disregard and letdown for our soulmate's very life.  Some have been those who did their best to save them, albeit being beyond them to do so.

Such emotional experiences are hardly going to be altered by something someone says here.  Let's just respect each other's opinions and where they are coming from.

I do agree, and we only see what we experience.    Mine, with doctors, how inconvenient appointments were made, the lack of empathy, various nurses and personnel from SNF's, the eagerness to do surgeries, radiation, before a pathology report, the botched pathology report, that caused us 2 months, and almost killed him in August.  You bet I have a chip on my shoulder on how inept the whole death care system is.     Not all drs/health professionals are arrogant... I just didn't get a great draw, and am, as a result of this ineptness and false promises, going to lose my husband to this brain cancer.      I am angry.   The clinical trial, was the last straw.  
It's just a microcosm on how money and data centered western medicine is, and them just letting ill ones funnel through the system, collect money, and leave them to die.   

I am on facebook, and have been sniping at different orgs that promise that "breakthrough treatment for cancer"    They don't want to solve it... They only want to get more money, as our economy is driven on bad food, bigCigarette, bigPharma, and for profit healthcare.  They likely have a "cure" but they will call it "quackery"

I will not darken the door of a cancer center.    It gave no benefit to my husband, and just destroyed him.  He will die.

 

[widower2]

steinbok, I'm so sorry for what you're going through and wish you both the best despite recent events. My beloved and I similarly did not have good luck/experiences overall either. Regardless, I hope this site can help in some way as a support system. 

And all, I think it's best to close the thread; this obviously hits a nerve for a number of us and I think people made the points they wanted to make.