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Author Topic: More Survivors Pain  (Read 6939 times)

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Offline bear60

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More Survivors Pain
« on: September 13, 2008, 02:08:26 PM »
Its not been a great week for some of us here at AidsMeds.  Friends and partners dying and getting sick.  Its always difficult to express how I feel.  Lets just say that I am sad, as well as others.  My sadness is going to be made that much more difficult because I just heard from a friend that our dear Fred, has been given only one month to live.  Oddly he is not being told this and I am really not sure why.  He went in the hospital a month ago to have a small cyst on his pancreas removed and the operation was successful.  He developed nausea and is back in the hospital.  Now this.....lung cancer.
Fred was a key figure in our lives during the years 1999 to 2004 when he was a member of our group that went camping every summer at Hillside...( gay, clothing optional etc) .  There is nothing like sitting around a campfire with a group of friends to make one feel "content".  But as change always happens, first Steve died.  Steve was the organizer of meals for our camping events.  He was on disability and had time to plan meals and shop.  ( We all chipped in to cover the shopping bill.)  He also was a great cook and did all the cooking for us. There were some really memorable meals that included leg of lamb.
After Steve died the group never quite had the same cohesiveness.
 And then Fred had a stroke.   
He intended to get back to being able to go camping but he never really was able to.  His walking became more and more labored. His speech never recovered.  Fred was about 74 at the time of the stroke.  Now he is around 80 years old.  He has been HIV positive as long as I can remember.....  and on meds.   I guess he is the "mother" of all  survivors.  But his luck has just run out.  We will see him soon but its going to be difficult not to show some emotion.  I just dont understnd why he isnt being told he only has one month to live. 
Sigh.

edited to add:  Steve made a mean cosmo.  Cocktail hour at the campground was always festive.
« Last Edit: September 13, 2008, 03:27:31 PM by bear60 »
Poz Bear Type in Philadelphia

Online leatherman

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Re: More Survivors Pain
« Reply #1 on: September 13, 2008, 02:33:24 PM »
Dear Joel,

I am so very sorry to hear this news about your friend. I will be keeping him in my thoughts that his stay in the hospital is as peaceful as possible. (after my recent experience with Jim in the hospital, I find the thought of anyone in the hospital to be a scary one) And of course, I'll be thinking of you and hoping that your memories of the good times with your friend bring some comfort to get you through this rough time.

Losing people we knew and loved is definitely one of the "qualifications" of being a LTS, isn't it? I don't think my family and friends truly understand what it means when I tell them that ALL of my friends from the late 80s through the 90s are gone. It sure is an added burden to dealing with this disease that so many around us have passed away because of it. Somedays I don't understand how we live with all that grief. And it's still happening to us today, as friends and lovers are still being taken from us by this disease.

my best wishes to Fred, and to you my friend,

mikie
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Alain

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Re: More Survivors Pain
« Reply #2 on: September 13, 2008, 02:44:59 PM »
Joel,

I am sorry to hear bout your friend Fred, never is easy, isn't it?

As for bringing back emotions and memories, that will do it to you (us).

Not being told; perhaps they (he) thought, you had enough on your plate already.

But knowing you, you will be the good friend that you are, and somehow get through these difficult times again.

Sigh, yes indeed.

Big hug, ALain :-*

Offline bear60

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Re: More Survivors Pain
« Reply #3 on: September 13, 2008, 03:22:08 PM »
Thanks Mikie and Alain
Yes memories are all we have left after surviving our friends and lovers. Luckily I can share some with you guys.

Joel
Poz Bear Type in Philadelphia

Offline Texan38

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Re: More Survivors Pain
« Reply #4 on: September 13, 2008, 04:21:40 PM »
Oh Joel,

I'm so sorry for your loss.  Your thread brought a tear to my eye. A heartfelt bear hug going out to you and your friend Fred.
And I'm sure Steve is still making mean Cosmos and keeping everything festive.  ;)

Lots of love hon,
 :-*
Mark
In Hollywood an equitable divorce settlement means each party getting fifty per cent of publicity.
~ Lauren Bacall

Offline sharkdiver

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Re: More Survivors Pain
« Reply #5 on: September 13, 2008, 08:33:43 PM »
Dear Joel Bear,

I just wanted to give you a big hug.

I too have been feeling a deep sadness this past week.
It should be an interesting night for me. I am having dinner with friends that I haven't seen in about 20 years. I know we will be doing a lot of catch-up and sharing of good memories. But I do know that I will probably hear some sad news that will break my heart as well.

But anyways...

I'll just give you another BIG CYBER HUG

Sharkie

Offline BT65

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Re: More Survivors Pain
« Reply #6 on: September 13, 2008, 09:48:37 PM »
Joel, this is never, ever easy, losing anyone we deeply care about.

I really have no words of great relief etc., just wanted to give you a kiss. :-*
  Luv,
Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Robert

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Re: More Survivors Pain
« Reply #7 on: September 14, 2008, 03:04:10 AM »

Joel...I'm sorry to hear about Fred.  It's never good when friends go to the hospital.

Quote
edited to add:  Steve made a mean cosmo.  Cocktail hour at the campground was always festive.

There is something about cocktails around a campfire, usually in a tin cup, with old friends.  It sounds like you have some great memories.  thanks for sharing.

robert

..........

Offline rondrond

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Re: More Survivors Pain
« Reply #8 on: September 14, 2008, 04:31:19 AM »
Sorry about the loss of your friend.

This just seems to be a month for losses.

ronnie
"I may not be exactly where I want to be, but I sure as Hell am not where I was"
Wynnona Judd

Diagnosed/HIV
1993
AZT
Norvir
1994-2001
Crixivan/Epivir/Zerit
No Meds for 7 Years

04jul07/DVT-right leg/Bi Lateral PE's     
16oct08/DVT-left leg
Sept '09  6 blood clots in left arm
Coumadin 5mgs
                                     
Atenolol/50mg/2x
Hydrochlorth 25mg/1x
Gemfibrozil/300mgs/2X
Symbicort
Proventil Inhaler
Potassium
Rhinocort


*APR 08~Viramune/Truvada
March08  CD4 330 23% VL 452.000 
*Jan09 Med change~Epzicom/Viramune

Aug09   CD4 523 23%  VL<48
Diagnosed: COPD
Dec 2013: CD4 645 45% VL 49
Med Change: Viramune/Epivir/Ziagen/Isentress

Offline aztecan

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  • 29 years positive, 56 years a pain in the butt
Re: More Survivors Pain
« Reply #9 on: September 14, 2008, 10:32:20 AM »
Hey Joel,

It never gets any easier, regardless of how many times we have been through it before.

I am sorry for this turn of events with your friend Fred. I will be keeping you and he in my thoughts.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline bear60

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Re: More Survivors Pain
« Reply #10 on: September 14, 2008, 01:12:20 PM »
Thanks guys....I appreciate your thoughts.
Update:
Fred is strapped to a bed and is on a respirator. His close friend told me he cannot find a living will and asked me if Fred ever talked to me about it. Unfortunately he did not ...not that I remember.  He is sedated but the reason he is strapped down is that he was trying to pull out IV's and such. This is really not good. Luckily his sister and a couple of nephews will be here by tomorrow.

Poz Bear Type in Philadelphia

Offline BT65

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Re: More Survivors Pain
« Reply #11 on: September 14, 2008, 04:15:02 PM »
Joel, I don't mean to sound morbid, but hopefully this won't last long. :-*
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline sparks

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Re: More Survivors Pain
« Reply #12 on: September 15, 2008, 11:35:43 AM »
im sorry to hear about your freind its important to remember all the great things ... and put the bad things on the back burner,,,,,sounds as if your freind had a very full life thats very important.. some people dont have that  and have a lot of regrets in their last days
IM a 17 yr survivor my t-cells have always been 900 or above znd my viral load remains undetectable,, ive known i was positive since i was 20

Offline bear60

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Re: More Survivors Pain
« Reply #13 on: September 16, 2008, 09:03:47 AM »
Update:
The hospital staff has weaned him off the respirator and he is somewhat improved but is still only days or weeks from death.
Poz Bear Type in Philadelphia

Offline bear60

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Re: More Survivors Pain
« Reply #14 on: September 18, 2008, 11:37:37 AM »
Talk about "going another round".....update:
seems as tho Fred had not been taking care of himself properly...even with close supervision by friends.....and had lied to them about his cancer diagnosis . ( I mean to say he was not in a situation where all his meds were monitored and counted and accounted for.)
So now that he is in a hospital and being given proper treatment and meds.....dont ask me which ones or how he managed to have everyone think he was taking care of himself....... he is actually eating a little and looking much better.  He is being moved to a rehab unit soon but he is out of Intensive Care.
So, Betty, so much for quick and painless. Guess he is going to go another round.  Its really hard to watch, tho.
Poz Bear Type in Philadelphia

Offline AlanBama

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Re: More Survivors Pain
« Reply #15 on: September 18, 2008, 10:34:31 PM »
Wow Joel, we just never know do we?   It does sounds like he's going to "go for another round".

Keep us posted....

hugs,

Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline RobT

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Re: More Survivors Pain
« Reply #16 on: September 19, 2008, 02:05:22 AM »
Joel-

Keep all of us posted. And to think this is more meaningful that my measly little lab results. Wishing you the best :)

Rob


Current meds: Atripla
VL: undetectable
CD4: 630

Offline pozhealthy

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Re: More Survivors Pain
« Reply #17 on: September 24, 2008, 11:20:28 PM »
SO sorry to hear about your situation. I will put you on my prayer list. People on here really care about each other,

Offline bear60

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Re: More Survivors Pain
« Reply #18 on: September 27, 2008, 05:35:31 PM »
So......Fred is still in the hospital, at least he has a private room. He can talk but is tired and says he is hoarse and its difficult to talk.  So we ( me and Kurt and Lois) did all the talking. I would say he looks damn good for someone who is (still) supposed to die in a month. He did not talk about anything "deep" so I didnt either.  At this point I am just going to let his family have the "space" to do what they have to do.  If Fred wants something more from me than just visits and friendly chatter, I guess he should know enough to ask.  I am glad he didnt die last week so his family had time to spend some time with him.
Sigh.
Poz Bear Type in Philadelphia

Online leatherman

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Re: More Survivors Pain
« Reply #19 on: September 27, 2008, 06:39:24 PM »
Fred is still in the hospital, at least he has a private room. He can talk but is tired and says he is hoarse and its difficult to talk.  So we ( me and Kurt and Lois) did all the talking. I would say he looks damn good for someone who is (still) supposed to die in a month
Private rooms are nice. You can lose so much of your self-esteem and dignity in a hospital, and it's only mildly more tolerable when the whole world (another patient, their docs and nurses, and their visitors) isn't there to watch.

It doesn't sound like Fred is in much pain, so that's some good in a situation that isn't very good.

He did not talk about anything "deep" so I didnt either.  At this point I am just going to let his family have the "space" to do what they have to do.  If Fred wants something more from me than just visits and friendly chatter, I guess he should know enough to ask.
I don't mind talking about the "deep" issues in situations like this; but I think it's kinda hard to know exactly what to say. Everyone faces the situation so differently.

But having been through the experiences I have, I will always believe that just visiting with someone, who is in the hospital, is the most important thing. It doesn't matter what you do or don't talk about. It matters that you don't let a friend (or family member) feel alone and forgotten. For all the hours, they spend alone in those hospital rooms, even a short visit (people in the hospital do tend to fall asleep a lot LOL) is a bright spot in a very dreary day.

I am glad he didnt die last week so his family had time to spend some time with him.
Though it's a sad situation, that is good to hear. Frankly, I think it's good for both the visitors and the patient to be able to spend some quality time near the end. It allows everyone to say final goodbyes, and to come to grips with the situation a little better.

Still wishing Fred a peaceful stay in the hospital,
mikie
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline BT65

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Re: More Survivors Pain
« Reply #20 on: September 27, 2008, 08:05:04 PM »
Thanks for the update, Joel.  Continued good thoughts for Fred and everyone involved.......
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline heartforyou

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Re: More Survivors Pain
« Reply #21 on: September 28, 2008, 04:45:30 PM »
Every loss is one too many....
I can feel the pain as your write this Joel.. Gosh, I hope you can see him soon and tell him how much you love him...

Thinking of you here in Belgium

Hermie
Diagnosed in 1987 and still kicking
Viread, Kivexa (Epzicom),Viramune once daily

Happiness is the freedom of breathing fresh air every day.

Offline bear60

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Re: More Survivors Pain
« Reply #22 on: September 29, 2008, 09:09:37 AM »
Update:
We have a friend who is gay Catholic priest ( thats another story) who makes it a point to visit the sick and dying in the hospital.  So........when we visited Fred on Saturday, I held Fred's hand and asked him if he wanted a visit from Father JIm. He nodded and said yes.  I called Father Jim when I got home and asked him if he could visit Fred.  He said he would go over to see him on Sunday after mass. 
I talked to Father Jim last night to see how it went.  I had no idea exactly WHAT Fred wanted, so I left it up to Father Jim to find out.  And in fact.............. Fred wanted him to give him the last rites... absolution... and pray with him.  I am so glad that I asked Fred about that.  Cause right after I asked him the question about Father Jim, Fred's sister piped up and said "Oh yes I was wondering if you wanted me to call your church and have someone visit."  Fred shot her this frown and said "NO!"
 Fred is Lutheran.
Poz Bear Type in Philadelphia

Offline BT65

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Re: More Survivors Pain
« Reply #23 on: September 29, 2008, 03:57:23 PM »
That was very thoughtful of you, Joel.  It's good to have friends like you.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline rondrond

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Re: More Survivors Pain
« Reply #24 on: October 04, 2008, 11:47:58 AM »
Hi Joel,


Is your friend still getting better?

"I may not be exactly where I want to be, but I sure as Hell am not where I was"
Wynnona Judd

Diagnosed/HIV
1993
AZT
Norvir
1994-2001
Crixivan/Epivir/Zerit
No Meds for 7 Years

04jul07/DVT-right leg/Bi Lateral PE's     
16oct08/DVT-left leg
Sept '09  6 blood clots in left arm
Coumadin 5mgs
                                     
Atenolol/50mg/2x
Hydrochlorth 25mg/1x
Gemfibrozil/300mgs/2X
Symbicort
Proventil Inhaler
Potassium
Rhinocort


*APR 08~Viramune/Truvada
March08  CD4 330 23% VL 452.000 
*Jan09 Med change~Epzicom/Viramune

Aug09   CD4 523 23%  VL<48
Diagnosed: COPD
Dec 2013: CD4 645 45% VL 49
Med Change: Viramune/Epivir/Ziagen/Isentress

Offline bear60

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Re: More Survivors Pain
« Reply #25 on: October 04, 2008, 12:10:21 PM »
Hi Ron
We havent heard any more news this week so I guess I will be calling and visiting this weekend.I will update tomorrow.

Joel
Poz Bear Type in Philadelphia

Offline Texan38

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Re: More Survivors Pain
« Reply #26 on: October 05, 2008, 12:06:03 AM »
You're a good friend Joel...
please let us know what's happenig.
In Hollywood an equitable divorce settlement means each party getting fifty per cent of publicity.
~ Lauren Bacall

Offline bear60

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Re: More Survivors Pain
« Reply #27 on: October 05, 2008, 11:20:38 AM »
Update for today.....
Due to the fact that Kurt seems to have a cold...the usual achey, sore throat, slight temperature type, (and I could be infectious) we decided not to go visit Fred because we didnt want to introduce our germs to him.  So I called and was able to talk to his best friend and his sister.
Its pretty amazing news really. Fred ate solid food on his own yesterday. He still has a feeding tube but being able to eat on his own means he may be transferred to a rehab facility. The doctors have decided to start chemotherapy to treat the tumor on a kidney.  Whatever I said above about his pancreas...ignore. He went into the hospital in August for a biopsy of this tumor and was told it was cancer.  He then lied to everyone and said the tumor was removed and the operation was a success.  Then let himself go and almost died.
Now he is facing a number of rounds of chemotherapy.  I can only assume that if the doctors want to do this...and he has given permission...that the prospects are pretty good for some form of recovery.  I guess we'll know after the chemothepy .
So thats all on Fred this week.
Like I said....he's going for another round.  Its just amazing.
Poz Bear Type in Philadelphia

Offline rondrond

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Re: More Survivors Pain
« Reply #28 on: October 05, 2008, 11:38:42 AM »
It's good to hear that he is doing better.

Maybe he'll be more receptive to chemotherapy this time.

So they're giving him a week to decide?
"I may not be exactly where I want to be, but I sure as Hell am not where I was"
Wynnona Judd

Diagnosed/HIV
1993
AZT
Norvir
1994-2001
Crixivan/Epivir/Zerit
No Meds for 7 Years

04jul07/DVT-right leg/Bi Lateral PE's     
16oct08/DVT-left leg
Sept '09  6 blood clots in left arm
Coumadin 5mgs
                                     
Atenolol/50mg/2x
Hydrochlorth 25mg/1x
Gemfibrozil/300mgs/2X
Symbicort
Proventil Inhaler
Potassium
Rhinocort


*APR 08~Viramune/Truvada
March08  CD4 330 23% VL 452.000 
*Jan09 Med change~Epzicom/Viramune

Aug09   CD4 523 23%  VL<48
Diagnosed: COPD
Dec 2013: CD4 645 45% VL 49
Med Change: Viramune/Epivir/Ziagen/Isentress

Online leatherman

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Re: More Survivors Pain
« Reply #29 on: October 05, 2008, 12:42:56 PM »
Due to the fact that Kurt seems to have a cold...the usual achey, sore throat, slight temperature type, (and I could be infectious) we decided not to go visit Fred because we didnt want to introduce our germs to him.
good call ;) Fred seems to have enough problems without having a cold too. LOL I know the hospital staff here glared at me everytime I coughed (damned cigs!) and had me gowned and masked some while Jim was undergoing chemo and had his white cells zapped.

Its pretty amazing news really. Fred ate solid food on his own yesterday. He still has a feeding tube but being able to eat on his own means he may be transferred to a rehab facility. The doctors have decided to start chemotherapy to treat the tumor on a kidney.  Whatever I said above about his pancreas...ignore. He went into the hospital in August for a biopsy of this tumor and was told it was cancer.  He then lied to everyone and said the tumor was removed and the operation was a success.  Then let himself go and almost died.
It's good to hear that he's had some improvements. But don't feel too mad/bad that he lied about this issue. Getting that cancer diagnosis when you're well, much less already sick, is very scary, especially considering the treatment. Many people decide against chemo at first and then change their minds. Why there was an older gent in the hospital with Jim who decided, when diagnosed at 80, that he'd skip the chemo and be happy living to 87. However, at 83 he got very sick and had lots of pain, so he changed his mind and was having the chemo. (peronsally, I don't know how much "aggressive" treatment I'd take for cancer if I was in my 80s; much less how much I'd bother with it now at 46 with AIDS. Either way, chemo treatment is risky and harsh.)

I can only assume that if the doctors want to do this...and he has given permission...that the prospects are pretty good for some form of recovery.
well, after what Jim and I went through, I can't say that I agree with your assumption. I think the doctors just do the treatment and hope for the best. They really don't know for sure if it'll work; but thankfully it does help a majority of the time.

When you do speak with Fred next, let him know that we're still thinking about him and saying prayers for him during this difficult time.  :-*
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Jeffreyj

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Re: More Survivors Pain
« Reply #30 on: October 28, 2008, 10:39:27 AM »
Joel,
Sorry to hear that your good friend is struggling right now. He is lucky to have a friend like you...Thoughts and prayers are with you ....Survivors pain, indeed.

Stay strong.
Positive since 1985

Offline bear60

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Re: More Survivors Pain
« Reply #31 on: November 01, 2008, 09:49:24 AM »
UPDATE
I apreciate any and all responses here and want to assure everyone that Fred is still alive and in the hospital.  Thats the good news and the bad news.  Things have not really improved much for Fred since he entered the hospital. He is recieving chemotherapy. He is able to talk some and is able to communicate his wishes.  Luckily he was alert enough to make up his living will, designate power of attorney and so on. So those things have been taken care of. 
His sister went back to Georgia.
He requested his laptop.
It was placed in a cabinet.
He decided he wanted his laptop.
He got out of bed unsupervised ( this is sooooooo Fred), not asking for assistence, and fell. 
Back to I.C.U.
This has happened twice.
I was just told he has blood clots in his chest and legs.
Kurt and I are going to see him tomorrow to pay our last respects.
I am told he is not really eating now.
So we all think he has little time left.
Poz Bear Type in Philadelphia

Offline Alain

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Re: More Survivors Pain
« Reply #32 on: November 01, 2008, 10:31:31 AM »
Joel,

How sad to see our friends getting to that stage.

Be strong and know that I am thinking of you and take care.

Alain :-*

Offline BT65

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Re: More Survivors Pain
« Reply #33 on: November 01, 2008, 04:34:04 PM »
Joel, I am so sorry about Fred.  Take care of yourself through this. :-*
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

 


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