On the other side of "no treatment"

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 we have withdrawn from each other...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, 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

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

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 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, does Mike have a lot of ascites?  If so, that could affect his breathing.  Has he had any paracenteses (drainings?)

Hugs,

Connie

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

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....

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

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!!

I will not be purchasing the cream called udder cream... Lord only knows what he would think of then...

 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...

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...