Hospice

[zx10guy]

Originally Posted by UncleWede

I was SURE, a few years after my diabetes diagnosis, that I would never see 55. Damn, I better get into the hospice soon if that investment is going to reap benefits.

I do realize diabetes had nothing to equal cancer, either in fear or real experiences. I still remember that fear my 13yo brother had of chemo. I drove him in one day, and he puked on the way down to the treatment center. When I asked why he was sick, he said it was just the thought of the upcoming treatment.

We shouldn't have to tell you, of all people, to live each day to the fullest.

I thought I was over this mess when I was at the 3.5 year mark. I was discussing with my oncologist at the time about when he was going to cut me loose. Then a bad test and all the diagnostics that happened after that conversation which resulted in a new primary. Now I'm doing a wait and see so my perspective about whether I'll be able to enjoy the golden years have been severely altered. Also reading stories about people on the support forums I frequent posting again saying they're 10+ years out (technically cured as viewed by the medical community) dealing with a recurrence.

I hope/assume your brother is out of his cancer situation and doing well. Yes, I can definitely relate to your brother. The nausea of going or being at the infusion clinic didn't hit till about round 7 for me. I didn't throw up going to the clinic. But when I got there, just the smell of the place set off intense nausea. I was literally trying to hold it together to keep from puking all over the place while the nurses were going through all the stuff that needs to be done before I actually got the chemo drugs: blood work, saline flush of my power port, steroids, and anti-nausea meds. In the beginning, I had my work laptop with me doing work while getting infused. Later that stopped when the nausea got so intense I was praying the nurse would start the Ativan drip to knock me out. Even the saline flush done to any IVs or my power port would cause nausea with me due to the taste and smell it would induce. That's on top of all the other side effects such as mild diarrhea from 5FU and all the neurological issues from the Oxaliplatin of which I still have some small lingering effects 4 years out from when I had finished chemo.

[UncleWede]

My bro is going to be 39 in September, so he seems to have survived that first round. He has a titanium rod for an upper right humerus but still gets regular testing. The shadow has never left.

Heparin/saline flushes of long lines, swabbing the mouth to stop the cracking sores, it all seems so primitive. Too bad leeches don't work to suck the cancer cells out (patent pending)

Personally, I'm hoping my certificate lists something cataclysmic like blunt-force trauma. . .

[Lups]

Originally Posted by UncleWede

I was SURE, a few years after my diabetes diagnosis, that I would never see 55. Damn, I better get into the hospice soon if that investment is going to reap benefits.

I do realize diabetes had nothing to equal cancer, either in fear or real experiences. I still remember that fear my 13yo brother had of chemo. I drove him in one day, and he puked on the way down to the treatment center. When I asked why he was sick, he said it was just the thought of the upcoming treatment.

We shouldn't have to tell you, of all people, to live each day to the fullest.

You're one epic guy wade. You nailed this.

[wdb]

Originally Posted by UncleWede

it all seems so primitive.

Amen. Burn it, poison it, cut it out. It really is primitive. Come on, science genii, pick it up will ya.

[UncleWede]

Well, apparently we were only "officially" in hospice care for about 2 days. Mom slipped away when no one was watching Friday morning. My wife was there and noticed her reduced breathing, then called the nurse. Nurse said to give it 30 minutes before she should call me. Wife sat down and was lured into a brief sleep by watching mom's breathing, only to be woken by nurse that she had passed

[bimmette]

My deepest condolences to you sir.

[kscarrol]

Sorry to hear this Uncle! My condolences...

[///M Power-Belgium]

Originally Posted by UncleWede

Well, apparently we were only "officially" in hospice care for about 2 days. Mom slipped away when no one was watching Friday morning. My wife was there and noticed her reduced breathing, then called the nurse. Nurse said to give it 30 minutes before she should call me. Wife sat down and was lured into a breaif sleep by watching mom's breathing, only to be woken by nurse that she had passed

My sincere condolences Sir !
May your mom RIP .

[wdb]

Our family sends our best wishes to yours.

[MKSixer]

Originally Posted by UncleWede

Well, apparently we were only "officially" in hospice care for about 2 days. Mom slipped away when no one was watching Friday morning. My wife was there and noticed her reduced breathing, then called the nurse. Nurse said to give it 30 minutes before she should call me. Wife sat down and was lured into a breaif sleep by watching mom's breathing, only to be woken by nurse that she had passed

I'm sorry for your loss. I'll light a candle for here and pray for your family. Condolences to you and your family, sir.

[overcoil]

Very sad to read about your loss.

[Lups]

I went to the grave. I brought him tulips.

Then, since I'm a reasonable and well adjusted adult, I kicked around on my great aunt's family slot for a bit (she stood next to me and to be fair, I was detaching dead flowers from the frozen ground).

"Anna. If I held your tulips for a bit, how far you think you could kick those roses your mom brought from your father's stone?"

Roses don't fly so well, but my aunt letting me be me felt so good. Let the anger out, even when you have to do stupid shit to get it flowing through you.

For 4/1/2013, Anna kicked some flowers today.

[Joekerr]

Originally Posted by Lups

For 4/1/2013, Anna kicked some flowers today.

How did you get the flux capacitors working? I feel like that's always been the mystery that's prevented others from going back in time.



(But good for you!)

[Lups]

Originally Posted by Joekerr

How did you get the flux capacitors working? I feel like that's always been the mystery that's prevented others from going back in time.



(But good for you!)

I feel like you made a pop culture reference there and you're expecting me to get it, so ha-ha,haha.

This a horrible date for me, especially as my mother showed up to my house, today. I came back to read this thread since UncleWede lost his mom. He shared it and it gave me (cuz the world revolves around me, right?) so much peace at the time, and by sharing my story I got it out, finally.

Him sharing should be an example for us all on how to deal with the most difficult things we face. Him sharing shook many other posters here and we all got words out, supporting each other.

I adore this community, and I'm proud of still being allowed to be a member.

[Lups]

Originally Posted by Joekerr

How did you get the flux capacitors working? I feel like that's always been the mystery that's prevented others from going back in time.



(But good for you!)

It really, really felt good. The next time the boys and me get drunk, that tombstone extension my mother insisted on, will be hauled out. I bet my aunt will be volunteering as a driver, she'd totally be up for an other 4/1 prank .

[shay2nak]

Just saw this thread. Sorry to read about your mom, UncleWede.

I’ve gotten to the age where I’m experiencing relatives dying and now my folks reaching 70. My grandpa died this passed December. The guy was a tank and I thought he would live passed 100. He was 97, but the guy was scared of dying and didn’t trust his nurses & doctors. He became agitated and aggressive at times. In fact he was kicked out of a couple homes. lol I don’t blame him. We got him into the place he wanted and was very grateful. He was there only for 2 weeks. They eventually put the guy in a coma to calm him and I didn’t know this at the time. They (my folks) were saying he’s sleeping and not eating. One Monday I felt the strong urge to go see him, but didn’t make it. The next day I got a call that he passed. I was so upset and really blamed myself that if I had been there I would have known what was going on and told them to take him to hospital to get him out of the coma and put a feeding tube in him. This guy was so strong, it took 7 days of him not eating in a coma to pass. I had no idea it was that long. Even now I feel guilty. I think I always will. I remember one time he called me at the second home he was staying (not a good one at all). He was trying to get me to jailbreak him. lmao i miss him. The guy had all these crazy tools and electric scooters and trikes. hilarious. The hospital basically killed my grandfather They never told us beforehand they were going To put him in a coma. Fucking unbelievable.

Then maybe a month later my mom was diagnosed with Parkinson’s which really messed us up. You don’t expect these things. No idea where it came from. So now we’re all struggling to deal with this. So far is pretty mild and the only major thing is she’s always tired, moves slow. We’re getting her to do lots of exercise, etc. Lots of promising new drugs are being tested soon, so hopeful within 5 years there will be at least something that will stop the progression.

[Joekerr]

Originally Posted by shay2nak

Just saw this thread. Sorry to read about your mom, UncleWede.

I’ve gotten to the age where I’m experiencing relatives dying and now my folks reaching 70. My grandpa died this passed December. The guy was a tank and I thought he would live passed 100. He was 97, but the guy was scared of dying and didn’t trust his nurses & doctors. He became agitated and aggressive at times. In fact he was kicked out of a couple homes. lol I don’t blame him. We got him into the place he wanted and was very grateful. He was there only for 2 weeks. They eventually put the guy in a coma to calm him and I didn’t know this at the time. They (my folks) were saying he’s sleeping and not eating. One Monday I felt the strong urge to go see him, but didn’t make it. The next day I got a call that he passed. I was so upset and really blamed myself that if I had been there I would have known what was going on and told them to take him to hospital to get him out of the coma and put a feeding tube in him. This guy was so strong, it took 7 days of him not eating in a coma to pass. I had no idea it was that long. Even now I feel guilty. I think I always will. I remember one time he called me at the second home he was staying (not a good one at all). He was trying to get me to jailbreak him. lmao i miss him. The guy had all these crazy tools and electric scooters and trikes. hilarious. The hospital basically killed my grandfather They never told us beforehand they were going To put him in a coma. Fucking unbelievable.

Then maybe a month later my mom was diagnosed with Parkinson’s which really messed us up. You don’t expect these things. No idea where it came from. So now we’re all struggling to deal with this. So far is pretty mild and the only major thing is she’s always tired, moves slow. We’re getting her to do lots of exercise, etc. Lots of promising new drugs are being tested soon, so hopeful within 5 years there will be at least something that will stop the progression.

Sorry to hear that - on both counts. You're right though, there's a lot of promising drugs for all sorts of diseases in trial stages and hopefully we see a good jump in the next 5-10 years. 5 years is probably short from an FDA approval process I'd imagine, but 10 years is definitely imaginable. I'm sure your mom will hang in there!

[shay2nak]

Originally Posted by Joekerr

Sorry to hear that - on both counts. You're right though, there's a lot of promising drugs for all sorts of diseases in trial stages and hopefully we see a good jump in the next 5-10 years. 5 years is probably short from an FDA approval process I'd imagine, but 10 years is definitely imaginable. I'm sure your mom will hang in there!

Thank you. We can only hope. There’s a lot of work going on we don’t know about. Yeah! Reading up on a lot of stuff. Trying to get a jump on it. Still hoping it’s not Parkinson’s because it easy to misdiagnose, but what I’m seeing is pointing towards it.

[Ivan Ivanov]

Hang in there, buddy UncleWede!

The death of loved ones is always sad. I myself buried my mother 5 years ago (she died in a hospice also ...) and unfortunately, for many years I have seen how slowly but surely my brother is leaving...
However, death is a natural continuation of life, it is a law.

[UncleWede]

Don't just "hope" for drugs, it takes "someone" to try them out.

I've been participating in clinical trials for diabetes for almost a decade now. It's an extra hassle to record blood sugar levels in a diary, and get blood drawn on the regular, and adhere to their trial rules. BUT, one day, it will help somebody, even if that isn't me directly.


I had those early dreams of her in her new aprtment, with her little flying red friend who liked to alight on my mom's foot. Mom can lift that foot up to head height to show you her little friends. I remember those visions, but no new ones at this point.

Last week, i threw away the copy of the announcement that had been in my "lab coat" pocket at work. It was falling apart, and it was time to let go. Now, when I put my hand in there, I'll still remember, but she is gone on to better things.

[shay2nak]

Originally Posted by Ivan Ivanov

However, death is a natural continuation of life, it is a law.

I'm holding out for when you can have your consciousness downloaded into a robot, like in the movie Chappie. lol

Originally Posted by UncleWede

Don't just "hope" for drugs, it takes "someone" to try them out.

I've been participating in clinical trials for diabetes for almost a decade now. It's an extra hassle to record blood sugar levels in a diary, and get blood drawn on the regular, and adhere to their trial rules. BUT, one day, it will help somebody, even if that isn't me directly.


I had those early dreams of her in her new aprtment, with her little flying red friend who liked to alight on my mom's foot. Mom can lift that foot up to head height to show you her little friends. I remember those visions, but no new ones at this point.

Last week, i threw away the copy of the announcement that had been in my "lab coat" pocket at work. It was falling apart, and it was time to let go. Now, when I put my hand in there, I'll still remember, but she is gone on to better things.

I know they (Trump admin) is trying to streamline the drug approval process. Your help is definitely appreciated by all!

It's sad when you think about death of your family members, for sure. Some people handle it better than others. And I guess that might be attributed to how close they were with them. For me, I try not to think about it because I'm close with my immediate family. I don't think I would handle it well. Now with my mom's new diagnosis, that hits closer. It's tough at times to put into words the way we feel or try to comfort others, but it's the great memories we have of them and all the fun times we shared. We can help preserve their memory through videos, photos and personal effects. They will always be with us.

[UncleWede]

This past weekend my youngest played his first collegiate double-header, and I couldn't call my mom to tell her all the stats