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My CSN family

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

I want to thank all you head and neck people for becoming part of my family. This has been a very hard and dark place for me the past few months. Today I was doing some figuring and it has been 139 days since my husband has kissed me and 83 since our last hug. It is so hard seeing my best friend so sick and trying to maintain hope, when everything suggests that without a miracle he will die. It is even harder not having any physical contact from him to comfort me during this time. I am not a very touchy/feely person so people know to stay their distance from me when it comes to this. Well right now I need a hug, a shoulder to cry on. It is hard I feel all alone here. One thing that keeps me going and gives me a little recharge is the wonderful people on this site. David has lots of people rooting for him and caring for him, but I feel like you guys are my cheering section. Of course you want David to live because you care about me and you know I absolutely adore him. You make me laugh when no one else can and you reach down and touch my soul at times and let me have that cathartic cry I so desperately need sometimes. Rick I want to say I really appreciate you. Even though you are going through your personal battle with Arlene by your side, you take time to lift me up. Thank you. Everyone else and there are so many of you that are so important to me thank you. I came here thinking David and I would be finishing chemo and radiation and start the healing process from the BOT cancer. I never in a million years thought I would be going through this. I feel so alienated from everyone. You know there isn't a support group for PPCL. When I go to leukemia sites they don't know what to do with me. Some people tell us to hold on and try to make it until they find a cure. Don't get me wrong, I want a cure, the thing is why would they be trying to cure something that 1:100,000,000 have when there are so many people with other cancers that can benefit from cures. It is so much easier to have clinical trials when you can have large control groups. Honestly our doctors are trying their best, but they even admit they don't know much about this. Our doctor said that one person responded well to this therapy and they lived for months. I say months do not make me feel better. We are talking of months of chemo, BMT, not going out in crowds because of low immune systems. Without a miracle what quality of life will my husband have. They aren't even going to let him go home. When he gets well enough to leave the Markey Center they will transfer him to Cardinal Hill Hospital for long term care. OK so I have digressed I am sorry. See you are family. I can be disfunctional and you guys still love me. I pray a special blessing for each and everyone of you this holiday season. May you have a season that is feeled with happiness and love.

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

I'm here, listening to you. I didn't sleep well last night. So I'm worn out today. I can do little more than sit here, listen, and give you a virtual hug. I do have enough energy to give David a virtual hug also. Rick.

sassysrice's picture
sassysrice
Posts: 117
Joined: Nov 2012

Vivian
I too am sending you hugs. You and David are always in my thoughts. Keep the faith mircles do happen and we are all rooting for David.
Sue
xoxoxoooooooooooooo

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

You don't know how badly I wish I were there to give you that much needed hug. I can't even imagine what you are going thru but I am just so sorry about it. I want you to know I still continue to pray for both of you and for that miracle you need so very much. I find myself thinking and praying for you several times a day.
You vent as much as you need to, we all look forward to hearing from you and getting updates so we know how and what to pray for. Keep the faith and don't forget to find Vivian time too. It will make you even better when you are taking care of David.
With love and concern,
Billie

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

When you hurt, we hurt, ...when you are in pain, we are in pain.

Right now, we are in pain....

Prayers for the miracle....

I too offer you hugs,
John

cureitall66's picture
cureitall66
Posts: 862
Joined: Aug 2012

You will always feel like family to me. I hate what you are going through. I, too, wish I could be there to help you through this. There isn't a day that goes by that I don't think of you and David even in spite of some of the difficulties here.

You have every right to be angry and vent...and you know you can do that here....we all understand. You really are not alone with this. We are here day or night. God is also with you even if you feel like He is failing you. Go to him with your fears..ask for peace. Vivian this isn't over...the doctors haven't given up, so don't think you should.

NEVERSTOP!

~Cris

CivilMatt's picture
CivilMatt
Posts: 2964
Joined: May 2012

Vivian,

Honesty is the one thing will all share here.

Virtual hug from me.

Best always,

Matt

hwt's picture
hwt
Posts: 1935
Joined: Jun 2012

The normal H&N journey is difficult enough. I am so sorry for what has been added to David's plate and yours. Find strength in your faith, your church and each other.

Candi

fisrpotpe's picture
fisrpotpe
Posts: 1338
Joined: Aug 2010

you have my hug, soft and strong!

simple but a must "KEEP HOPE ALIVE"

we are family, when you hurt we hurt when your loved one hurts we hurt with you. this is unconditional.

prayers continues for you and yours

hugs..... they are many being sent your way

john

KareGiver
Posts: 290
Joined: Apr 2011

Both of you. So many are here to support you.

Tim6003's picture
Tim6003
Posts: 1495
Joined: Nov 2011

Hugs to you Vivian and David and his / your family....this is hard.

As others said so well, we hurt when you hurt, we do feel your pain and most of all we care.

Vent anytime, share good and bad...we can relate better than most as to where you and David are...

Bless you both,

Tim

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

But if I were there, I'd want to hold you both. This crap is so horrible.

yensid683
Posts: 229
Joined: Apr 2012

We do hurt when you do and we really do understand all that you feel and are going through. I watched the stress on my wife during the worst of my treatments and I felt so bad, not for me but for her. I couldn't get her to open up to me about how she was feeling. After we (and I will say 'we') got past the worst of things we did talk and her worries were so much like yours. She wanted nothing more than to have me hug her, to be someone to listen to her, to share her feelings with her best friend, but she didn't want to add to my burden.
I had invited her on more than one occasion to slide into the hospital bed with me, I could see she needed a hug and it was something I really wanted to do for her, but she wouldn't, she didn't want to hurt me. She couldn't have.

I know we did not face the degree of challenge that you and David are, but I would imagine that David knows how stressed you are and would like nothing more than to help you! Give it a try.

Your CSN family will always be here for you. In 1945 Richard Rodgers and Oscar Hammerstein wrote their musical, Carousel, and in that show they have a song, "You'll Never Walk Alone"

"...walk on through the night, walk on through the storm and you'll never walk alone. You'll never walk alone!"

much love to you and David

VanessaSLO's picture
VanessaSLO
Posts: 280
Joined: Jul 2012

I wrote here a few times that I really wish we all could be closer just to be able to hug, to go for a coffee, to do annual picnics :))).... We listen to you Vivian, hoping and praying for David and you!!

luvofmylif
Posts: 344
Joined: Sep 2012

AS everyone has said keep fighting and stay as strong as possible. I support you and know how difficult this is. I know the pain I have gone through and continue to go through so I know yours is much greater and wonder how I would go through what you are going through. There is a reason that you are in Davids life and he in yours. You are doing God's work by going through this with him. Wish I could help you in some small way and as Vanessa said if we all lived close we could have our own little support group...wouldn't that be great. But, I guess this is our support group. So, take it one nano second at a time...and try also to care for yourself. Easier said then done I know.

prayers and hugs

Joan

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