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Dreaded reality

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

Today has been an awful day. Yesterday we had hoped of going home today or tomorrow, but that will not happen. David started bleeding again and his numbers are really low. They are giving him platelets now. The doctor came in this morning and said that we need to consider a long term facility because David needs 24 hour care. She also said that they have treated one patient with plasma cell leukemia that responded well to treatments and lived several months. I started crying in front of all the doctors. I had not even considered that David may not come home and then to hear at best he has months to live. It isn't fair. We were supposed to grow old together. We were supposed to have a life together. My heart is breaking. I watch him sleep with tears in my eyes. I want to be comforted by my best friend, but he is lying there in the hospital bed needing my comfort. I am grieving even though he is still alive. Yes alive, but hasn't lived in months. I pray we don't lose any more in our group. My holiday is really sucking. Sorry for the language but I am so frustrated and sad. Please God we need a miracle.

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

I feel that I've come to know David, although in reality I know so little about him. I do know that the healthy David must have many admirable features to have attracted a caring person like you. I do believe in an afterlife, although I am quite certain that the particulars of the afterlife will surprise almost all of us. But every day David is here with us if a gift. And doctors always speak about "averages", and there are exceptions. Let's hope David proves to be an exception, the patient with an exceptionally large number of good days in his future. Rick.

Skiffin16's picture
Skiffin16
Posts: 8069
Joined: Sep 2009

Sometimes it really makes you wonder where the compassion and thought process is for MD's.

First, realize that at this point there is no given that I'm aware of his long term prognosis.

If that is correct, try to stay positive, and fight for the positive. There have been many Dx on here that were not good initially, then worked out in positive long term survivals.

Any days that you are a live is a day of hope...

The living hopefully will come, take survival right now...that's what you are both working for.

Thoughts, Prayers, Miracles and Successes....

Always,
John

amy_h414's picture
amy_h414
Posts: 98
Joined: May 2012

I am so sorry Vivian. I know this isn't how you imagined your marriage beginning. Stay strong, I think of you and David often.

Ladylacy
Posts: 471
Joined: Apr 2012

So sorry to hear the news. I can only image how hard this is right now. Are the doctors talking about hospice? These are long term care and many, if not all, are wonderful. I have had experience with hospice coming into the home but know of many who went into a hospice care facility that spoke highly of the tender care their loved ones received.

No it isn't fair and I say that about my husband and what he is going thru and say and cry "why, what did he do wrong to suffer so". What does David want to do and is he able to tell you? What about his parents? Please know that we all think of you and pray for you both.

Sharon

Grandmax4's picture
Grandmax4
Posts: 583
Joined: Dec 2011

so sad, and angry too...I know we shouldn't second guess God, but, what is He thinking!! I still pray, and I know He knows my every thought and understands...what a day it will be when we can ask and recieve His answers...peace to you both and to David's mom, I can't imagine one of my children going thru this

cureitall66's picture
cureitall66
Posts: 860
Joined: Aug 2012

Hang onto that Faith! They're suggesting long term care because he will need this.. you can not do that for David. I know this isn't easy on you. No one said any of this journey would be easy...so we don't have a choice but to take this all day by day. Hang onto each day and hold your husbands hand. Tell him you love him and share conversation with him. Hold onto the fact that things can change....in the meantime, do what the doctors suggest, they know what is best.

I send you peace, comfort and love my friend. I'm with you in spirit...and GOD IS with you BOTH. Go to HIM.

~ Cris

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Vivian,

I am with Rick and John, on the drs comments and prognosis.

My prayers are for your miracles, and your hopes to become realities.

My best to you both, Kari

donnahamblin's picture
donnahamblin
Posts: 47
Joined: Oct 2011

So sorry for your news and I will pray for you and your family. Hang in there. Being the caregiver is so difficult and I truly feel your pain:-(

Donna

CivilMatt's picture
CivilMatt
Posts: 2920
Joined: May 2012

Vivian,

I am sorry for these turn of events, but have to believe something good will come to you and David.

Hope and prayers,

Matt

luvofmylif
Posts: 344
Joined: Sep 2012

Vivan I feel your pain and understand every word of what you said. I don't think I could do what you are doing. You have watched your husband suffer so much and you need some good news. I am praying that you will get good news soon.

Keep fighting for David. Be his rock. He needs you so much. I know how fearful this all is, so just remember how more fearful it must be for him. I try also not to show any fear to my husband because I know it isn't helpful, but it's not easy to do. Being a caregiver to a spouse is hard, because in the past you would share all your feelings with him but now you can't. I keep them bottled up in me and then they come out and I lose it big time (especially at night) and them I am ok for awhile.

We suffer with our loved ones, but that is the price of love.

Hoping and praying

Joan

Nahilbogan
Posts: 3
Joined: Dec 2012

I AM GOING TRUE SOMETHING CLOSE TO YOU SITUATION ,DONT WORRY OF WHAT LANGUAGE YOU ARE OR WILL BE USING , I FEEL ANGRY AT TIME I CRY WHEN I WANT TO IS A LOT OF PEOPLE THINK THAT I M NOW MAD ,,,I DONT CARE I PRAY AND KNOW THAT G-D KNOWS WHAT HEIS DOING BUT IS SO HARD TO UNDERSTAND LOVE YOUR HUSBAND LAUGH WHEN YOU CAN HOLD HIS HAND AN BE THERE I KNOW YOU FEEL LIKE YOU ARE GOING WITH HEM BUT YOU ARE NOT DONT FORGET THAT.......... AND REMEMBER THAT G-D DOES GRANT MIRACLES ;)

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

I would make the decision to make all decisions away from professional healthcare workers. Make them with family and close friends. Just like my wife and I walk out of car salesrooms to make our decisions, we would walk away from the hospital to make a partially controversial decision. Perhaps the hospital has a chapel where you might find refuge. Anyway, I hate when a "professional" shoves a paper in front of me to sign. If I had not made up my mind previously (like permission for an operation) I would just walk away from the paper. Rick.

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

That things have gone off in the wrong direction for you and David. I have hope that things will turn around for you both I honestly do. I can't imagine what you are having to deal with right now I just know it sucks....no need to watch or worry about what you say to us.
If the dr feels like David needs 24 hr care you should see if there is anyway that's possible to happen at home. I just can't help but think you'd feel better (and so would David) at home.
Keep your chin up my friend, I really do expect good things for you both. Stay with us and keep us posted so we can pray accordingly.
Billie
PS do you have family or friends besides David's mother to lean on for support?

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

The sad truth is it really is just his mom and me. I have family and friends; however, everyone sees me as the strong one. It makes them uncomfortable to be around me and they have kept their distance. I know they just don't know how to help, but I won't reach out and say I need them. If they offer I might accept, but that just isn't the case.

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

I really and truly wish I could be there to help you in any way that I could. You know I was much like you before I got sick. I would never ask for help from anyone because really I am strong and I just handle things. However this was just bigger than me. Typically even if people would ask me if I needed anything I'd say I was fine and didn't need anything but this time they didn't even ask me they just took charge. It was a little hard for me at first, it made me uncomfortable because in the beginning of treatments I felt ok'ish but when it got bad I was so happy to have them. It taught me that in the future I won't ask anyone what I can do to help if they are having a rough time I will just do something for them that I think will make things easier. Now that I'm feeling better I need to work on accepting help again. I'm not sure I'll ever ask for help, who knows but I for sure need to accept it when someone asks. I've learned that others are suffering too. Not in the way the sick person is or the immediate care giver is but people want to help in some way and it's painful for them to feel uselss. I would say for you to ask for help because I know you could use it but I know it's way easier said than done. I just hope I'll remember that if I'm ever struggling again maybe just maybe I'll remember that it just may be what others need to help them feel good. So, at least accept the help if someone offers because even if you think or know you can handle it, they may need it to feel better themselves.
If you ever want to talk you can send me a pm or you can contact me on FB
My name is Billie Miller Aldrich

Take care and don't forget that we are all praying for you.
Billie

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

You must know how much we've been hoping the news would be better. I feel so bad for the both of you - a weird mix of sorrow, anger, despair and confusion. There's still hope there, too - it's just not at the front of my mind right now. Hoping you gain some strength and hope.

Noellesmom
Posts: 1297
Joined: Aug 2010

I'm sorry, Vivian. I know this is just so hard for you.

You are in my thoughts and prayers. Wish I could do more to comfort you. I hope you have family and friends close by who are helping you with this.

Pumakitty's picture
Pumakitty
Posts: 653
Joined: Mar 2010

Vivian,

My heart is breaking for you. I can not imagine how you feel. I wish I could give you a big hug. I know you will stay strong for David, but please try to take care of your self. Also, try to never give up hope.

Prayers and hugs,

Kathy

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

and I can only imagine how you feel. I'm sorry Vivian ....I want sooooo bad for you to have a miracle, that's obviously what it will take if I read your posts correclty. I refuse to give up, I refuse to give in. I will continue to pray. I can't possibly understand why you and David must go through what you are going through...I so wish I could do more....

...before I hit the post comment button I prayed and asked God for that miracle for you both....

Tim

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