On the other side of "no treatment"

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arneeb
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Date Joined Nov 2009
Total Posts : 2350
   Posted 3/16/2010 10:37 PM (GMT -7)   
There are those of us who walk on the other side of the words "no treatment"... for Mike and I it has been 2 1/2 months... while his physical well being has not changed... our mental well being has suffered greatly... out here in no man's land... the dr wants no return visits... and is surprised when Mike does return... almost as if to ask "Why are you still here?"... with Hep C, Advanced cirhrosis, liver cancer, tumor too large to remove.... we wait.. no detioration of physical well being...he is independent in all things.. cooking etc.. no ammonia build up... every month does have fluid removed.. that is the only treatment at this point... with all this we are thankful for this time and for his general wellbeing... the emotional and psychological part have taken their toll.... we have withdrawn from each other... afraid to speak of the unspeakable... finally we did... but the specter of death hangs over our heads... Mike does not wish to have hospice come in until the very end... which could be a short or long time from now.. who knows...
 
Today, Mike's bedroom door was open... and a familiar love song was blasting from his room... there he sat... little yellow man with his big fluid filled belly.. sitting on the edge of his bed... head in hands... I said nothing... sat behind him and held him as he cried... and I cried... as though for hours and each moment will be etched forever in my memory... and that song opened a night of talking about the unspeakable... and tomorrow... we go forward into the dark future... loving each other... holding on... to the time we have as it slips away ever so slowly and yet so very quickly... into the unknown...

arneeb
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Date Joined Nov 2009
Total Posts : 2350
   Posted 3/16/2010 10:42 PM (GMT -7)   
Forgot to add our community in the Fargo, ND area is experiencing major flooding again this year.. and we had to evac last year... so we have this hanging over our heads also.... just a tough time right now... for our whole area.. as we sandbag and hold on

hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 3/17/2010 1:02 PM (GMT -7)   

Arneeb, I heard on the news about the flooding.  Hope you guys won't have to evacuate.

You have a real gift for expressing your feelings.  Have you written any poems for Mike? 

My thoughts and prayers are with you both.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Pink Grandma
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   Posted 3/17/2010 9:17 PM (GMT -7)   
Hi Arneeb, I am so glad that you two talked. In fact I am a little jealous. ( Well maybe a lot jealous.) My husband didn't want to talk about it. I wish that we could have because there were so many things that I wanted to say to him that I didn't get a chance to. If I had a chance to do it all over again..........I think that I would force the talk. Then maybe I wouldn't still have all the " I wonders" still running through my mind.

Hang in there. Have you taken a little time for you lately??? Maybe it's time.

Lot's of thoughts and prayers.........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


arneeb
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Date Joined Nov 2009
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   Posted 3/17/2010 9:38 PM (GMT -7)   

Connie I've written other poetry... but right now... just trying to deal with day to day... trying to balance our budget... keep my job.. and provide supports alone... he has no family and I have no family... and while he doesn't have disorientation... he does have small memory lapses... some paranoia about money... and so... those things can be difficult..

Pink Grandma... some days I wish for the end... and that's selfish... cuz the wandering in no man's land has taken it's toll.... we have been dealing with this for many years... 5 for sure.. and have been through hospitalization... shunts... etc... now we're fighting depression... anxiety.. and fear... of the unknown... but we do have those fleeting moments in which we connect... but we have walled off our emotions to travel throug this period... I work with people all day and can't be a basket case... the other day I was amazed to think that it has been five years since we were together... I don't want to be explicit... and yet... it seems like just a moment ago.. ours was a passionate relationship...  dealing with the lack of intimacy is difficult... but at this point... I feel as though I'm breaking when we hug... the enormous weight of our situation bears down on me... and I feel like I'm going to fall apart... so I pull back... I have to.. I'll have a nervous breakdown and lose my job.. I can't do that... so we're pretty apart emotionally except for these little breakthroughs... but we keep on trudging... one day at a time... thanks for listening.. just had to.. and I read every day... we lurkers are part of the community too and feel as though we know u guys though we don't write every day... Sandi


arneeb
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Date Joined Nov 2009
Total Posts : 2350
   Posted 3/17/2010 9:42 PM (GMT -7)   
I have a teenager too... so I don't have time for me... once in a while... I also do prison re-entry work... and that helps... and right now.. preparing for the flood... but think both our home and the community is well prepared... we have added alot of new infrastructure this past year... the crest will come Sunday or Monday... expecting 38 feet.... we are at 32 tonight... the devastation in the rural areas is great... but think we can hold out... one day at a time.. I turn to the Lord from which comes my help..

CGR
Regular Member


Date Joined Nov 2009
Total Posts : 64
   Posted 3/18/2010 1:40 PM (GMT -7)   
Anreeb,

Please know that my prayers are with you.


What you wrote about Mike holding his head in his hands touched me deeply, as it just destroys me when I see my partner rub his forhead in worry or panic

It is so difficult to love someone so much and see this happen ... especially when we try so hard to protect and provide.

Blessings my friend,

Rob

arneeb
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Date Joined Nov 2009
Total Posts : 2350
   Posted 3/20/2010 10:54 PM (GMT -7)   
Thank you Rob... and sorry to hear u have troubles also...  For a long time I've devoted many hours of volunteer work to the community and that helped me get out... and focus on helping others... but now I can't do that as much.. so don't have the outlet... for now... I'm ok... but it's tough time... we are communicating much better... the walls are down again.. for now.. it helped to finally let it all out... thanks for your kind words Rob... and my thoughts and prayers go out to all of you and we dealing with these issues... and emotions.. Sandi

allie2631
Regular Member


Date Joined Mar 2008
Total Posts : 313
   Posted 3/22/2010 2:01 AM (GMT -7)   
Arneeb i have been following your story although I have not posted many answers and my thoughts are there with you. I know exactly how you feel, last year when my mum was in hospital seriously ill, my gran who was in a nursing home decided in her infinite wisdome to give up, aprt from my own husband no one else was there. it took six weeks of running between hospitals trying to be ther for my wee gran, my heart breaks when i think of her, butI felt I was losing it. my work kept my sanity, as a lot of things around me was falling apart. if writing your poetry helps you express your feelings then that is great, dont let them build up inside. you have your self and your teenager who needs you. Life is certainly not easy at times we have to do our best and try and not fall apart. You have a lot on your plate right now, and you seem to be coping well. remember you are stronger than you think.

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 3/22/2010 3:25 AM (GMT -7)   
Allie thank you so much for your kind words... for a woman that usually has many words tumbling from her mouth... this situation renders me speechless, breathless, and feeling hopeless.....
Mike and I seem to be in a new phase now .. communicating... he actually cooked soup tonight... but he didn't start getting up and doing things untiil I just plain refused to do things he could do for himself.. it has returned much of his independence and lessened his anger towards his situation while giving him something to do while I'm done at work... although his breathing is very labored right now.... who knows what form of torture this illness will now take.. I will focus on the heavens and Mike and let the rest fall in place... thank you so much all for your kinds words....

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/22/2010 11:09 AM (GMT -7)   
Arneeb, does Mike have a lot of ascites?  If so, that could affect his breathing.  Has he had any paracenteses (drainings?)
 
Hugs,
Connie
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


arneeb
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Date Joined Nov 2009
Total Posts : 2350
   Posted 3/23/2010 9:12 PM (GMT -7)   
Yes Connie Mike has a lot of ascites... and he has the paracenteses as needed ... which right now is about once a month... he had his first one in December of 2009... and believe he will have the next one April 1st when we got back to the hepatologist.... that's primarily what they are doing right now... that and he is watching his diet well.. low sodium.. no meat etc... I asked Mike if he felt a need to go in this week and he said no... but I think we may need to get him in sooner... may be this Friday.. he had quit going out altogether but day before yesterday.. we actually went out ... about two months ago he declared he wasn't going anywhere the rest of his life.. and that was hard for me... cuz, we used to go quite a bit... now at least he'll go when he feels up to it... I think it's good for him to get out if he can... we don't go for long... and we go when the crowds aren't there... I work nights so we go mid afternoon... anyways.. it works for us.. my thoughts and prayers are with all

hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 3/23/2010 9:22 PM (GMT -7)   

Arneeb, thanks for the update.  I agree it's good for Mike to get out when he is feeling up to it.  It may tire him out, but it's good for him emotionally and mentally.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


arneeb
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Date Joined Nov 2009
Total Posts : 2350
   Posted 3/23/2010 11:02 PM (GMT -7)   
well I'm selfish... I want to go out... and I don't want to go with anyone but him... he is such a good companion... I waited so long to find him.. I'm so blessed to have the time we do...

nc born and bred
Regular Member


Date Joined Feb 2010
Total Posts : 155
   Posted 3/24/2010 5:38 AM (GMT -7)   
just wanted to say dont  feel selfish for wanting to go out. but do take time for you. my life has pretty much revolved around my mom ,work and home.. everybody nneds a break. and if your companion cant go, please go alone, if just for a walk around the block. i live beside my mom,so thats not always easy for me,but i try. i will hold you and your loved one in my prayers....

allie2631
Regular Member


Date Joined Mar 2008
Total Posts : 313
   Posted 3/24/2010 4:03 PM (GMT -7)   
You definately need some me time. Even if it is to give you something else to talk about take your mind of what you are going through. It will help you gather your thoughts which will make you stronger. You are anything but selfish, you adore this man that is clear to see, this is a terrible strain for you both, but you really do need time out. stop thinking about it and do it, start with a long bath and a book, go out for lunch does not have to be for long, you will find it will help you recharge your batteries.

arneeb
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Date Joined Nov 2009
Total Posts : 2350
   Posted 3/26/2010 4:57 PM (GMT -7)   
Thanks for the thoughts Allie.... today Mike went back to his hepatologist... had paracentisis done... took 4 1/2 liters... not as much as last time... his breathing and back pain had become too much.... back pain has increased... but no mental confusion... he took a pain med and is sleeping... he very welll mentally oriented... but again doctor's writing him off.... so we're hanging in there.... one day at a time... well just thought I'd do a quick update... he goes back in 4 weeks... if needed he can go back sooner... they are pretty good about that... not much else they can do I guess... he is taking Vitamen D3 for muscle cramping and that has helped immensely and he does the Bag Balm thing... we joke about that... not appropriate for here but it makes us laugh to think of a man having "Bags"... that's about as explicit as I can get... my funny little yellow man... still has a sense of humor... Sandi

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/26/2010 8:20 PM (GMT -7)   

Vitamin D3 or B3, Sandi?

It sounds like Mike is holding his own.  Glad he got drained as that has to offer him a little relief.  Tell him, it could be worse--I use something called Udder Cream.   smilewinkgrin

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


arneeb
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Date Joined Nov 2009
Total Posts : 2350
   Posted 3/29/2010 6:29 PM (GMT -7)   
Connie, Vitamen D3... and it has worked greatly for muscle cramping.... I think he has some mental confusion going on.. every once and a while he says some funny things... he thought the bag balm shrunk his man bags!!.... at least that is what hs said and he was as happy as a lark.. so who is gonna argue with a happy man with a little yellow man with little yellow man bags...?? what a life!!

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 3/29/2010 11:49 PM (GMT -7)   
OH, my... oh, my.... Mike is going to see the doctor tomorrow... think some of that Lactulose will be in order........... I had to quit typing my earlier post... I turned around and my partner was sitting in the recliner... in my bra and his underwear... nothing else... and I have no clue... what he was trying to communicate... but something about needing support lift for his man bags... ah, man.......................... and some day... it will be funny... oh, heck it's funny now... but man, oh, man... what a crazy trip we're on... so yeah... definitely gonna get my little yellow man's ammonia level checked!!! He's getting too weird for me!!! He did go change when I suggested it... so there is hope... go ahead and laugh... life is short... and he certainly gave me a memory... Sandi

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 3/29/2010 11:52 PM (GMT -7)   
I will not be purchasing the cream called udder cream... Lord only knows what he would think of then... turn smilewinkgrin yeah

worriedgirl
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Date Joined Apr 2009
Total Posts : 1130
   Posted 3/30/2010 5:10 AM (GMT -7)   
arneeb it is good that you guys can joke. im sitting here picturing a little man with a bra on and it is funny. i think i will use that image on bad days to cheer me up.
The only person who can make you happy is you. Be your own self and love who you are because each and every one of you are wonderful for who you are
 
"No one really dies because they have loved. Because they love they stay in the hearts of the people they have touched so in that their memory lives on." Ghost whisperer-i know corny but this touched me deep down and i see so much truth in it.


arneeb
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Date Joined Nov 2009
Total Posts : 2350
   Posted 3/30/2010 10:46 AM (GMT -7)   
yeah No NO here's the full picture... I'm typing that first post about the bag balm... I notice Mike has come in behind me... so I quickly finish that post... I turn around he has the recliner laid back... he has a big a@#$ grin on his face.... yellow from head to toe... big belly...  ugly ole white underwear... by the way which I found out was one of "my" old lady underwear... not his... who knows why he picked those...and on top my ugly ole bra... that he dug out from the bottom of my dresser and which probably hasn't been worn since the turn of the century... and has missed the trip to the thrift store for some odd reason... he is stretched out like a Playgirl centerfold... looking like a beached yellow whale... or a yellow pregnant woman ready to deliver.... but he is pleased as punch with himself... and I...well.... me is  still laughing today... head to doctor...

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/30/2010 11:10 AM (GMT -7)   
Sandi, unless he MEANT it as a joke, it's probably time for some Lactulose.   smilewinkgrin   Please let us know the outcome of the doctor visit.
 
Hugs,
Connie
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


arneeb
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Date Joined Nov 2009
Total Posts : 2350
   Posted 3/30/2010 4:08 PM (GMT -7)   
of course... and already on it... he will start on Lactulose... said ammonia levels were high... I didn't get the numbers... he's been pretty quiet today... I knew what it probably was.. he does have good sense of humor.. but this was not one of those times.............. so onward we go...
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