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Author Topic: Just checking in  (Read 76868 times)

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Offline Theyer

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Re: Just checking in
« Reply #100 on: November 10, 2014, 02:25:32 am »
Dearest Alan,

Much love to you Mr Southern Gent . I hope you can feel that as each day passes your one day nearer when this period will be history .

Will be checking in to follow your progress

Lots of love
Michael
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline Jeff G

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Re: Just checking in
« Reply #101 on: November 16, 2014, 03:06:07 pm »
Today is Alan's Birthday .... Happy Birthday Alan, hope you find some comfort and joy today as you continue to get better .
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Offline mitch777

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Re: Just checking in
« Reply #102 on: November 16, 2014, 06:38:02 pm »
Happy Birthday Alan! Sending you my best huggers possible. I hope your nurses treated you extra special today!
33 years hiv+ with a curtsy.

Offline Wade

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Re: Just checking in
« Reply #103 on: November 16, 2014, 07:40:47 pm »
Happy Birthday Allen !
Hope you are feeling better , and stronger everyday.. !!

Give it Hell and Get Well !!!  Wade
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Offline Jeff G

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Re: Just checking in
« Reply #104 on: November 17, 2014, 07:42:49 pm »
I was able to go and visit with Alan today, the high point of my day for sure . He looked really good and I was impressed at how well he is doing, Im not just making nice he looked great .

Alan asked me to tell you guys some specific things and even asked me to take notes because it’s really important for people to know this . He wants you guys to know that during the 90’s he got sick and almost didn’t make it, he was very sick and very alone back then and when he was at his lowest moment no one came and he was all alone .

Alan wants you guys to know that he is truly humbled and feels blessed to have his family and Layne by his side during this time, this time he is not alone  . He wants you guys to know his brother has been there for him and often by his side . He also wants you guys to know he is humbled and blown away by how Layne his partner has nursed and cared for him . I got the feeling that Alan is feeling very loved and very cared for and he just wants others to share that feeling and that joy he is feeling while he is recovering from this . I hope my note taking did justice to his feelings and what Alan wanted you guys to know and hope he will be able to update this thread soon on his own .

He also wanted me to share with you that he often thinks he is in Atlanta when he wakes up and that the morphine is making for some interesting times during the rare time he is alone … he told me to tell you guys that he sees fabric blowing, beautiful fabric blowing  all around his room and that its ok because its good quality fabric LOL . We laughed a good bit about that and the fact that no matter how sick you are, once a queen always a queen .

We had a great visit and I can’t tell you guys how glad I was to see him and see how well he is doing . I know now that Alan is going to be OK .
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Offline mitch777

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Re: Just checking in
« Reply #105 on: November 18, 2014, 05:51:38 pm »
Thanks for the update Jeff. Dreams of good quality fabric are a good sign. lol. I just woke up from a 2 1/2 hour nap and will not be divulging my dreams. :o

Hope to hear from you soon Alan!
« Last Edit: November 18, 2014, 05:53:55 pm by mitch777 »
33 years hiv+ with a curtsy.

Offline Wade

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Re: Just checking in
« Reply #106 on: November 18, 2014, 09:19:33 pm »
Thanks Jeff , Glad he has lots of love around him !
 He will surly get well and heal quicker..
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Offline wolfter

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Re: Just checking in
« Reply #107 on: November 19, 2014, 09:06:03 am »
thanks for the update Jeff.  If you are in contact with him before he returns, make sure and send him well wishes from us all.
Being honest is not wronging others, continuing the dishonesty is.

Offline Jeff G

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Re: Just checking in
« Reply #108 on: November 19, 2014, 09:26:35 am »
I got a message that Alan was released yesterday afternoon at 4 Pm . He is still very weak and shaky since he is still unable to eat any thing substantial other than sips . I was surprised to hear he is home but then not really, he looked great the other day and the man knows how to fight for his life because this is not the first time he has been critically ill . He can only talk a little at a time because the tracheostomy has not closed all the way yet .

I will make sure he knows you guys are asking after him and sending good vibes and love his way . I cant stress enough how much the support that has come his way has done for him . When I visited he grabbed that pen and paper and gave it to me and told me to take notes for this thread because he was bursting with love for all of those that stood by him and wished him well, it was hard not to cry even though the tears were happy ones . I have never in my life seen a man as grateful and humbled as Alan and he wants you guys to know it .
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Offline Buckmark

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Re: Just checking in
« Reply #109 on: November 19, 2014, 10:21:06 am »
Jeff -- Thanks for the updates from Alan.  I'm really glad he is getting lots of good care and the attention he needs / deserves, and has been released from the hospital.

Alan -- Keep on fighting!  And enjoy your fabulous fabrics.   :D   Just keep on thinking of healing as you go through all these treatments (even though they don't feel very healing, they will be in the long term).  You will get through this.

Henry
"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline Theyer

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Re: Just checking in
« Reply #110 on: November 20, 2014, 05:36:06 am »
Although I thank Jeff for his reports it will be a day to celebrate reading your first post op post Alan . you let all those folks shower there love on you Alan , for this is a time for what goes around comes around muchlove
Michael
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline AlanBama

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Re: Just checking in
« Reply #111 on: November 20, 2014, 09:54:14 pm »
Love you guys so much-- my Jeff, you are a treasure to both of us.  Thank you for everything (my flowers are still pretty!)

Lord, from what I remember, this hospital "shit" was easier 20 yrs ago!  Now it's trying to recuperate, trying to eat,  (I still can't), trying to do all the right stuff, and begin to face the mountains of paperwork and bills waiting for me after being away from home for 11 days.

My tongue is about 2-3 times normal size; my trach still hasn't completely sealed; my temperature is all over the place; my weight went from 182 to 166.  I just hope I can get back to something remotely like normal, before chemo and radiation begin.  Will post again as soon as I can .

Love to all , 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 Jeff G

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Re: Just checking in
« Reply #112 on: November 20, 2014, 09:56:24 pm »
Its great to see an update from you Alan .... very much so .
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Offline mitch777

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Re: Just checking in
« Reply #113 on: November 21, 2014, 03:20:38 pm »
Good to see you are home and even posting Alan. Thanks for touching base!
33 years hiv+ with a curtsy.

Offline BT65

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Re: Just checking in
« Reply #114 on: November 21, 2014, 04:07:45 pm »
Alan so good to see you post!  I'm still praying for you and sending you peace!

Love you tons-
Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

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Offline aztecan

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Re: Just checking in
« Reply #115 on: November 23, 2014, 10:23:24 pm »
Alan, I am very glad to see your post.

Lots of healing energy coming to you.

HUGS,

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

Offline AlanBama

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Re: Just checking in
« Reply #116 on: January 11, 2015, 05:14:40 pm »
hi friends

just a quick update, on my phone ( so it may be a big mess). 1st chemo down; was fine the 1st day after; 2nd day, ROUGH.  thank god for my built in nurse !  he takes such good care of me.  I'm pretty much like an old dog on a leash, strapped to this Peg Tube pump for nutrition AND for the mega fluids I need to flush out this Cisplatin.

Tomorrow : day 3 of radiation, 30 more to go.  they have me putting that udder cream body cream on my burnt neck , face and chest.  it seems to help. So far everyone has been great , wonderful caregivers. Lord there are SO MANY people on Chemo. On day 1 I was seated next to a mean old lady who yelled, treated everyone badly, pissed in her pants, and then farted on them 2 or 3 loud raspberries as they tried to clean her up.  Leave it to me, right? and they placed me in the very furthest chair from
the restroom.  So I got a workout ( and a floor show).  What more could I ask for??

Love to all,  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 mitch777

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Re: Just checking in
« Reply #117 on: January 11, 2015, 05:38:21 pm »
Alan, It's good to hear from you!

30 more treatments? Oh my!

It's good to know you have a good personal nurse. I'm sure he provides the best of care.

Too bad about the cranky old lady but it must have been amusing anyway. Just a thought but I would be buying a nice collection of underwear for future floor shows. Can't be seen wearing the same thing down the runway to the bathroom.  :)

My thoughts will be with you during your treatments.

hugs,
Mark

33 years hiv+ with a curtsy.

Offline aztecan

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Re: Just checking in
« Reply #118 on: January 12, 2015, 11:18:27 am »
Alan, it was so good to hear from you.

I am glad you are getting good care, especially from the "built in nurse." ;)

Sounds like the old lady was a trial for your patience. Some people are just like that, I guess.

Lots of warm and healing energy heading your way.

HUGS,

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

Offline Miss Philicia

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Re: Just checking in
« Reply #119 on: January 12, 2015, 01:31:46 pm »
You really have a long road ahead of you Alan. I'm so very sorry you are having to deal with all of this. Wishing you the best.
"I’ve slept with enough men to know that I’m not gay"

Offline Wade

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Re: Just checking in
« Reply #120 on: January 12, 2015, 09:22:30 pm »
Alan,
Your a tough one !
You still manage to keep your sense of humor,
That's a rare quality.
My thoughts are with you , Wade
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Offline BT65

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Re: Just checking in
« Reply #121 on: January 13, 2015, 01:38:49 pm »
Alan!  That treatment sounds dreadful.  I'm glad you're not by yourself and I hope those side effects can be controlled.  I love you, you have my number.

Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

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Offline Buckmark

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Re: Just checking in
« Reply #122 on: January 13, 2015, 04:53:32 pm »
Alan,

Your treatment sounds so very rough indeed, especially as it sounds like they are alternating / intermingling your chemo and radiation.  In my case, having them separated by a couple of months sounds easy by comparison.   I'm glad your "built in" nurse is taking good care of you.  Hard as it may be, keep pushing those fluids -- it will protect your kidneys.

I have a couple of tubes of Miaderm left over from my radiation treatments.  It's really good stuff, and helped sooth my skin during and after radiation.  I'd be happy to send it to you -- you may wish to ask your physician or radiation tech about it.  Feel free to PM me.


Lord there are SO MANY people on Chemo.
...

That's exactly what I thought when I was having chemo:  look at *all* these people.  Most I found to be very nice, and a few (as you experienced) not so much.  My thoughts are with you.

Hugs,

Henry
"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline wolfter

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Re: Just checking in
« Reply #123 on: January 13, 2015, 11:09:12 pm »
Thanks for updating us as I've been concerned.  It all sounds dreadful but you're a fighter.

Being honest is not wronging others, continuing the dishonesty is.

Offline AlanBama

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Re: Just checking in
« Reply #124 on: January 22, 2015, 03:47:28 pm »
Hello everybody, from Cancer Land....that's what it feels like.  It's a 24-7 job.   Takes two of us to manage my care and all the various 'treatments' I am supposed to do.

After tomorrow, I will be one-third of the way through my radiation treatments (11 out of 33).  Yay!    We saw the chemo doctor Tuesday; I like her a lot, but she is a very BLUNT person.  She will tell you how the cow eats cabbage, and doesn't paint a pretty picture for me over the next few weeks.  That's ok, I'd rather prepare for the worst, and if it's not that bad, GREAT!  My next chemo is Wednesday the 28th.

One thing I'm concerned about:  she discussed switching me in the near future from Hydrocodone (liquid) to Fentanyl patches.   I was badly addicted to Fentanyl in the 90's; took me about 5 years of trying to successfully stop them.  The withdrawal was so unbearable for me.   So that is a concern/worry.

I've decided there IS something worse than having to take a boat-load of pills each day:   having to crush them up, and pour them into your stomach!  Plus, there are several drugs we have in liquid form.   Guess who's back on liquid Norvir?   I had prayed I would never see/taste/smell that mess again.....but hey, we do what we have to, right?

Love you all, thanks for the prayers and concern.   And thanks to Henry for helping me out with some great cream for radiation!

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 mitch777

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Re: Just checking in
« Reply #125 on: January 23, 2015, 12:53:04 pm »
Cancer Land sounds like the evil twin sister of Candy Land. Glad to hear you are 1/3 of the way!

hugs,
mark
33 years hiv+ with a curtsy.

Offline BT65

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Re: Just checking in
« Reply #126 on: January 23, 2015, 09:48:12 pm »
Oh Alan, I'm so sorry you're going through this.  You're such a tough person, yet so gentle.  I keep you in my daily anxieties, and am wishing you only the best. Liquid Norvir? Yuck!  Hate that stuff.  Hopefully we will connect via phone one of these days, instead of just text.  Love you!!

Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

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Offline AlanBama

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Re: Just checking in
« Reply #127 on: January 29, 2015, 08:30:07 pm »
Love you too, honey.  Text me whenever you can..

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 leatherman

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Re: Just checking in
« Reply #128 on: January 30, 2015, 12:23:09 pm »
Guess who's back on liquid Norvir?   I had prayed I would never see/taste/smell that mess again.....but hey, we do what we have to, right?
OH NO! I swear to god when I read that line, I could kinda taste that taste in the back of my throat. Egads!

yes, we do "do what we have to do".  :-\  so hang in there! the half-way mark is just around the corner. ;)

hugs and love to y'all!  :-* :-*
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Buckmark

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Re: Just checking in
« Reply #129 on: February 01, 2015, 01:33:07 pm »
Alan,

You are really in the thick of it now.  I suspect you now have another 5 radiation treatments under your belt since your last post, so you are just about half way.  I am glad your doctor is being straightforward with you.  My radiation oncologist kinda sugar-coated it, and I was pissed as I got toward the end of the 3rd week.

I'm sure the radiation effects alone are unpleasant, let alone the insult of having to take liquid Norvir.  I can understand your anxiety about pain medication, but you will need something, so have a conversation with your doctor about alternatives (you probably already have).

You are in my thoughts daily.  Keep your eye on the prize, and make sure to ring the bell and throw some confetti after your last treatment.  I don't know if your nurses / techs do this kind of celebration, but I've heard it is sort of a tradition (here in the US at least).   Also, they let me keep my radiation mask.  It is sitting in my closet.  Some day, I am going to destroy it appropriate (maybe with a shot gun).

Hugs,

Henry
"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline wolfter

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Re: Just checking in
« Reply #130 on: February 02, 2015, 12:43:27 pm »
Liquid Norvir..how awful and you have my sympathy.  I just got off the pill form as it was horrible.  I should have remembered my previous experience with it.

sending hugs and positive thoughts buddy.

take care and kick ass.
Being honest is not wronging others, continuing the dishonesty is.

Offline AlanBama

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Re: Just checking in
« Reply #131 on: February 07, 2015, 06:01:42 pm »
still kicking ass; just need help lifting my foot to kick it!  lol

I agreed to go on Fentanyl patches, we started at 25 mcg.  It is already taking a little of the edge off the pain.  Even toothpaste burns.  My mouth is in bad shape now, and I'm taking very little orally, so thank God for the PEG tube.  I'm having an ultrasound of the abdomen Monday (to see if there's an alien in there?) to make sure I don't have fluid in my abdominal cavity.  My partner tried to explain AIDS gut to the oncology docs, we think that's all this is.  Yes my belly is huge!  I said wow I hope there is some fluid there to draw off!  But I really don't think that will be the case.

Will let you know!  Love to all,

Alan

PS to Lis, thanks for calling me honey but I can't phone you back! I cannot speak right now, my voice is GONE.  Please email me if you can!  love you!
"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 BT65

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Re: Just checking in
« Reply #132 on: February 07, 2015, 07:27:49 pm »
So glad tthe pain is subsided, even a bit. You're in my thoughts and prayers daily sweetie. I love you!

 Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

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Offline mitch777

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Re: Just checking in
« Reply #133 on: February 07, 2015, 08:22:19 pm »
You're in my daily thoughts too Alan. You really are an inspiration.  :-*
33 years hiv+ with a curtsy.

Offline aztecan

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Re: Just checking in
« Reply #134 on: February 08, 2015, 07:02:52 pm »
Hey Alan,

Just thinking of you and thought I would just send some (((((HUGS))))

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

Offline wolfter

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Re: Just checking in
« Reply #135 on: February 09, 2015, 10:58:58 am »
You're in my thoughts Alan.  Continue  to take care of yourself.

hugs
greg
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Offline Buckmark

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Re: Just checking in
« Reply #136 on: February 24, 2015, 01:55:13 pm »
Still thinking of you, Alan.  I think you my be at or near your last day of radiation, if my calculations are correct. 

*hugs*

Henry
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     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline Wade

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Re: Just checking in
« Reply #137 on: February 24, 2015, 02:21:46 pm »
Alan,
I too hope you are just about finished with your TX ,
Also that you get some relief ,and your mouth heals up
So you can sink your teeth into something big an juicy !
All my Best ,Wade
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Offline Theyer

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Re: Just checking in
« Reply #138 on: February 27, 2015, 05:23:25 am »
Dearest Alan , fentanyl patches are my best friends , seriously honey buns take every pain killer there is plus some relaxers like Valium all and everything they prescribe to lessen the hell off this , I only drew the line at chemicals from the friendly ward dealer , how ever grass tea is easy to have on the ward and if a medic takes a sip from the vacuum flask it's stored in , well thou shall not steal.
Kisses & hugs
Michael 
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline AlanBama

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Re: Just checking in
« Reply #139 on: March 22, 2015, 05:56:41 pm »
Hello, sorry I haven't written anything; it's inexcusable, really.....I MADE IT through all my treatments; did very well, in fact.   I didn't have to stop, or miss for any reason; no blood transfusions, no red or white cell count problems....just low sodium.

I somehow (stupidly) thought that if I could just make it through those awful treatments, I would be o.k.   The hard work has really STARTED once the treatments stopped.  My healing is moving at a glacial pace, and I hate it.   I am an impatient person anyway; but this is nuts.  I still can't eat, can't speak very well; have chills and mild fevers, and awful night sweats.   I'm back to sleeping on beach towels, like in the 90's.  It just seems I can't get over the "hump" and get things moving in the right direction.  My partner and my family say that they do see improvements, and I agree that my strength has improved.   I just want to be ME again!

On a sad note, my best friend of 38 years died Thursday, after a long battle with colorectal cancer.   We knew he was in very bad shape, but still it came very suddenly.  I know he was just tired of it all.  He didn't have any insurance, was dependent on the "system" and it failed him BADLY.  They wouldn't approve him for Medicaid, because they discovered he had an IRA at an old job, that was worth about $3 or $4 thousand; he really had not even considered that.   He was cared for by the charity program at St. Vincent's hospital in Birmingham; after several letters from his doctors, he was FINALLY granted SSD.   He was waiting to start his next round of chemo, after Medicare kicked in, which would have been next month.  He didn't live to see it.  He turned 58 on Wednesday, and died the next day.   My life's going to be very different without him; we talked on the phone every day, for as many years as I can remember.  I am thankful his pain is over.
The poor guy was existing with Stage 4 rectal cancer, taking 2 loritabs a day for pain.   It's all he could afford to buy.  I just think it's criminal, that someone should have to suffer in such a way.

Much love, and many thanks to all of you,
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 BT65

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Re: Just checking in
« Reply #140 on: March 22, 2015, 07:47:03 pm »
Alan, it's good to hear from you though I'm sorry about what you're going through.  I would have thought you'd start feeling better once the treatments stopped.  Did the doctor give you a possible timeline for feeling better? 

What happened to your friend is criminal.  Someone should be held responsible, or several people.  The system should not be able to get away with that (whoever made the decision to turn him down).  It's disgusting.

I hope you feel better soon.  You're still in my prayers.
Love you-Betty
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Offline mitch777

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Re: Just checking in
« Reply #141 on: March 22, 2015, 08:12:58 pm »
Dear Alan,

My heart is breaking for you for the senseless loss of your best friend. As Betty said, it's criminal. It makes my blood boil. I'm so sorry for your loss.

I'm glad you gave us an update as you never have left my thoughts sweetie. I can't imagine what you have been through or what you are going through but I do know you are a surviver and will get well.

Having this grief at this time doesn't help.

I just can't give you enough hugs or words.

Mark

I just read your post to Kenny and could not stop my tears. Please take good care of yourself Alan.
« Last Edit: March 22, 2015, 08:29:07 pm by mitch777 »
33 years hiv+ with a curtsy.

Offline aztecan

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Re: Just checking in
« Reply #142 on: March 22, 2015, 10:54:43 pm »
Alan,

I know how frustrating it can be during recovery, especially from such an experience as you have had with your treatments.

Please be patient with yourself.

I am outraged at what happened to your friend. It also makes me feel powerless knowing there is nothing I can do to help.

Please know you are in my hopes and prayers and that much healing energy is being directed toward you.

MANY HUGS (not enough but all I have right now)

Mark
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Offline Miss Philicia

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Re: Just checking in
« Reply #143 on: March 23, 2015, 10:12:37 am »
Oh Alan, I'm sorry things are moving so slowly for you and know you must be frustrated. Surely they will begin to improve for you, it's just a very hard entire year.

That's so outrageous and infuriating what you describe as the end circumstances of your best friend. Nobody's life should end with such misery.
"I’ve slept with enough men to know that I’m not gay"

Offline Buckmark

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Re: Just checking in
« Reply #144 on: March 24, 2015, 06:05:16 am »
Hello, sorry I haven't written anything; it's inexcusable, really.....I MADE IT through all my treatments; did very well, in fact.   I didn't have to stop, or miss for any reason; no blood transfusions, no red or white cell count problems....just low sodium.

Getting through treatment so well as you did is quite a triumph -- and quite extraordinary!   You should be proud.  My treatment was interrupted because of low blood counts, pneumonia, staph infection, blood clots, etc.

Quote
I somehow (stupidly) thought that if I could just make it through those awful treatments, I would be o.k.   The hard work has really STARTED once the treatments stopped.  My healing is moving at a glacial pace, and I hate it.

Ah, you have discovered the dirty secret that doctors usually fail to tell cancer patients:   in many ways the hard work and hard times for cancer patients come AFTER your treatment.  They probably don't tell us this because treatment is hard enough to get through.  But at least during treatment you are following a regimen and have a specific goal to achieve.  Once treatment is conquered, you get to deal with the uncertainty of healing, post-treatment side-effects, and follow-up tests and scans to see that your cancer is in remission (and to check on any collateral damage).  Not to mention trying to put your life back in some semblance of normalcy, whatever that is.  When you can, I strongly recommend you reach out to a support group of cancer survivors (most cancer treatment centers have one or know of one -- ask the social worker).  Just like with HIV, it helps to share your experiences and know you are not alone.  Since your voice is dodgy right now, an online community like this could be helpful (not that anything could be as fabulous as poz.com  ;) ).

Quote
On a sad note, my best friend of 38 years died Thursday, after a long battle with colorectal cancer.   We knew he was in very bad shape, but still it came very suddenly.  I know he was just tired of it all.  He didn't have any insurance, was dependent on the "system" and it failed him BADLY. 

I'm so sorry for the loss of your friend -- and for how poorly he was treated.  38 years of friendship just can't be replaced.

Things will get better, but just more slowly than you want.

Hugs,

Henry
"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline Jeff G

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Re: Just checking in
« Reply #145 on: March 24, 2015, 10:56:33 am »
I'm sorry for the loss of your friend Alan . You are one of the toughest people I know and I am amazed at how you handled everything you have been through . You were up and laughing with me just days after your surgery and your biggest concern was that you wanted me to let people know you were OK . Hugs, Jeff .

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Offline wolfter

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Re: Just checking in
« Reply #146 on: March 30, 2015, 12:59:22 am »
I am thinking about you and apologize for not responding sooner.  How are things going of late?  Are you close to being able to have a normal diet?

take care buddy
Being honest is not wronging others, continuing the dishonesty is.

Offline heartforyou

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Re: Just checking in
« Reply #147 on: April 01, 2015, 03:50:12 pm »
Dearest Alan,

So sorry for your loss. We have lost so many things and friends in our lives...... And everytime we suffer another loss the pain returns.

I hope your heelth will improve with spring beiing here.

Sending you healing love,

Herman
Infected 1983. Diagnosed in 1987 and still kicking
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Happiness is the freedom of breathing fresh air every day.

Offline AlanBama

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Re: Just checking in
« Reply #148 on: October 15, 2015, 12:58:51 pm »
OCT 15, 2016

Hello friends,

First of all, let me apologize for being an 'absentee member' for quite awhile now.  I certainly love and care about all of you as much as I ever have, it's just that my life has been re-arranged for me, thanks to Cancer.

Brief summary:  I've been dealing with Stage 3 Cancer of the head and neck since this time last year, for carcinoma of the right base of my tongue.   I had radical neck surgery, chemo, and 33 radiation treatments.   I have been on a PEG feeding tube since Nov 7, 2014.   I have worked very hard to recover, and get back to eating normally.

I received some tough news Tuesday; actually, I knew it before they told me, but to see it on paper, hear them say the words, and actually SEE the radiology report and film is a blow.   It seems that despite my best efforts, I am going to be on a feeding tube from now on.   Pretty much anything I eat or drink aspirates into my airway / lungs.   The radiation destroyed my epiglottis, the flap that closes so food goes down the "right pipe".  Being a LTSer of AIDS has not helped my recovery, as you can imagine; the G.I. doctor told me that "if it was a person who had a normal healthy immune system, and well-functioning lungs, we would probably tell them to go ahead and keep trying to eat what you can; but in your case, your immune system is compromised; half of your diaphragm doesn't work (due to severe shingles in 2007) so your breathing is not really normal.  You've had numerous cases of pneumonia, and it's not worth risking getting aspirational pneumonia just by trying to eat".

I've shed my tears, and am trying to make my peace with it.   Thank GOD I have an exceptional partner, Layne, who is a retired RN.  He has taken excellent care of me, during this whole ordeal.  I couldn't do it without him.   So it's not just MY problem, it's his too.   He has to eat every  meal alone.  He mixes up and prepares my infusion bag of hydration for every afternoon, and my bag of liquid nutrition (similar to ensure) for every night.  I am tethered to an IV pole and a pump from about 3 to 6  pm each afternoon, and from 11 pm until 7 or 8 am. every night.

The implications of being an enteral feeding patient are many.   There's the social aspect -- people don't know how to 'deal' with someone who doesn't eat or drink.
As for any kind of sex life, again, thank God for an understanding partner.   Imagine having a tube hanging out of your abdomen -- forever.  It tends to change your perception of yourself.  To say nothing of the physical and psychological effects.  Certainly, not the least aspect, is financial.   I'm a Medicare patient.  I have no supplement; I do have a Part D plan, paid for by the State, and receive many medications from ADAP.   I am in the Charity Care program at the Univ. of Alabama, where I receive all my treatment.  That covers the Medicare co-pays and deductibles, thank GOD.   But with the home health supplies, I'm on the hook for 20%.   Also, all the various and sundry items that go with dealing with enteral care.   Gloves, swabs, tape, etc.   All non-covered expenses.

OK I've complained more than enough, so I'll stop for now, and again apologize for not being more active in the group.   Since all this happened, I have joined a couple of head and neck cancer survivor's groups, and a group for Enteral feeding patients.  I will try to be better, about checking in.   Feel free to email me, anytime.

LOVE & HUGS TO ALL,  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 heartforyou

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Re: Just checking in
« Reply #149 on: October 15, 2015, 01:34:02 pm »
Sweet Alan,

I am speechless. What an ordeal you are going through.
And above all you are extremely courageous. Alan, I am proud of you.

But I can feel your pain. It is hard to read these lines.

I am very very happy to read your partner is close to you. I admire him too.

Please know I am with you. I am crying here for I cannot do much from here. I am here whenever you need someone to talk to Alan.

But I am also very angry for what this disease has done to you, over and over again. I so wished I could help.

Warm hugs and tons of respect to you guys,

Love,
Herman :'(
Infected 1983. Diagnosed in 1987 and still kicking
Dovato once daily. Hydrea

Happiness is the freedom of breathing fresh air every day.

 


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