Topic: don

What I don

Re: don

Dear Cherryle,
My mother was my best friend too, so I know how you're feeling right now. The last moments, the last days, keep playing over and over in your head. I can't go to sleep at night because I keep re-living the horror of her last months. At first I was so angry at the doctors for not caring enough, at visitors who bothered us when she was barely conscious, and I still wonder if I did everything for her. She never got to say good-bye to me, either -- she was fine one day, and the next day she only woke up to say she was in pain, so I just stayed with her and fed her the pain medicine as often as I could. When the hospice nurse came and said the end was near, my sister and I still didn't believe it -- she had been so ALIVE the day before!!!

I know it's impossible to stop re-thinking and agonizing over these details, but the truth is that no one really knows for sure when the end will come. There are signs that appear for some people, and not for others. My mother had the "death rattle" breathing for a few hours before she died, but some people don't have that and some have it longer or shorter. I think we go over these details because we can't really accept the loss, and we're trying to turn back the clock and make them alive again -- if only we could. I know I would give anything to see my mother just one more time.

You're not alone - it's hard to talk about this with others because they don't understand unless they've lost someone who was the center of their universe. As everyone tells me, it doesn't matter that you didn't say good-bye - she knew that you loved her and you know that she loved you. But you can't help wishing it had turned out differently.

I hope you can numb the pain somehow in the next few months - it's not easy, I know.
- Joyce

Re: don

Don't tell me that you understand
Don't tell me that you know.
Don't tell me that I will survive,
How I will surely grow.

Don't tell me this is just a test,
That I am truly blessed,
That I am chosen for this task,
Apart from all the rest.

Don't come at me with answers
That can only come from me.
Don't tell me how my grief will pass
That I will soon be free.

Don't stand in pious judgment
Of the bounds I must untie.
Don't tell me how to suffer,
And don't tell me how to cry.

My life is filled with selfishness,
My pain is all I see
But I need you, I need your love,
Unconditionally.

Accept me in my ups and downs,
I need someone to share,
Just hold my hand and let me cry.
And say, "My friend, I care."

It goes without saying that all of us on this site care and share in your pain.  Joyce is so right when she said that you cannot possibly understand until you lose someone that is so dear to you.  Hang in there and remember that we care.
Betty

Re: don

I am not ready for the road ahead.  My mom was dx'ed on 8/8/07 my birthday w/cholangiocarsinoma, I am doing all I can to set appointments and and obtaining and much info as I can, she is not a surgical candidate at this time as it has spread into the portal vein.  I am so sad my 5 and 2 year old live for their NONNA, as she does for them and my 11 year old niece It breaks my heart to think she will not see them grow up.  For brief moments during the day I forget about the dx, as I do about life and care for my children and my mom and then it's time to drain her biliary tube, disp. meds, or make another Dr.  appt. and I relive the nightmare and begin to grieve all over again, I have been very strong infront of my mom but the minute we are apart I can't stop crying.  Tina

Re: don

Dear Tina,
I felt the same way -- so strong in front of my mother and 4 year old daughter, crying all the time when I was alone. Just cherish your mother as much as you can while she's still here, there's nothing else you can do. I felt so helpless as I'm sure you do, too - and angry at the injustice of a wonderful person leaving this earth too soon. My daughter was so close to my mother that she gave her Mother's Day presents and didn't give any to ME - - I've actually had to get counseling for her, and she's only 4 years old. Every time my daughter says something funny or learns something new, like her numbers and letters, I have to go somewhere and cry because my mother will never get to see the light of her life grow up.

But there may still be hope in your mother's case - I've heard on this board about people with portal vein involvement and they've somehow pulled through. You may want to ask in a separate thread about that, as I don't know much in that area. There's always hope! In the meantime, lean on anyone you can to help you through this time, and don't be too hard on yourself. Your mother loves you more than anything and you don't have to be strong for her ALL the time. In hindsight, I wish I had broken down in front of my mother, just to show her how much I was hurting. I heard that my mother said I was a "stoic" when I heard her diagnosis - and I know she must have known my anguish but I never showed it. But I wish I cried and held her in my arms so we could have grieved together.  Oh, there are always a ton of "maybes" and "should haves" - which is why I'm saying don't be too hard on yourself. It's a terrible thing to go through - my heart goes out to you. 

I wish you peace,
Joyce

Re: don

Bjohnson-
THat is a beautiful poem, thank you so much for that. I'm going to send it to my best friend who lost her 55 yr old father on Father's Day to unknown origin cancer (of course I now believe it was cc). And I'm going to read it when I'm feeling down - it will bring some comfort. Thanks so much again
Joyce

Re: don

Tina is ok to let your mom know how you feel. My mom never spoke to me about dying only that she felt bad and never gave up on trying anything that might make her better. She was a trooper. She drank all kinds of concoctions anyone came up with. The best was the carrot juice. I never could get her to try some of the pills I was told about on this site but it wasn't for not trying.
So your mom already has a drain or stent? Has she started chemo or is she going to try that? I was never able to go with my parents to the dr's so I'm not totally sure about where the cc was located, I do know that when they 1st went in to put a drain they couldn't get to where they wanted to go and had to wait a few days and try again that was 4-5-7. June 6th they went back in and put metal stents
There are 5 of us kids and 8 grandkids plus my Dad. Most of us live in Alabama but my two brothers live in Louisiana. My two younger sisters live with in 20 miles of our parents, I live 100 miles away. We did our best to help my dad out with her care. The main thing was the chemo visit's and as you said the bag drian and making sure she took her meds. I feel for what your going tough. Tis website has been a great thing for me even if it was just reading other peoples post. You and your family are in my thoughts and prayers.

Cherryle

Re: don

Betty Thanks you for the poem.

Re: don

I'll just keep throwing things out there that seem to help me in hopes that it will help some of you.  If you are like me, you'll accept all of the help you can get.  This "grief thing" is certainly not any fun and certainly doesn't go away.  There is a hole and void in your life that will always be there and lots and lots of tears.

The newsletter from Christianity Today was about Job's suffering.
In summary it said "Our decision must be to follow God and trust his justice, wisdom, and goodness whether we are in the throes of suffering or enjoying good health and blessing.  Such a decision would surely cut the ground out from under Satan in the spiritual warfare of our day and age.  Believers will continue to suffer, but it will always be under the permission or direction of a merciful and wise heavenly Father who works for our good in the way of the truth and fairness of the gospel."

Hope these words will bring everyone that needs it some comfort.

Re: don

Hya Betty I think the poem is exactly how I am feeling. I can print it of and give it to others when I get too upset to exlain how I am feeling.
My faith has been shaken so much.
please do keep writing these pieces as they are so terribly important for all of us here.
love and light teresa

U.K.Member

Re: don

To Joyce and Cherryle thank you for the comforting words. I only found this site a few days ago and have been reading all I can, while it gives great information and support, I am saddened that so many are going through this and so many have lost the battle. We go tomorrow for our first stent placement and and next thursday we go to shands hoping to get some better news, the cancer is in now in the portal vein and I haven't seen too much that can be done in this stage, but I am still hopeful.
Tina

Re: don

Tina,
Let us know how your mom is doing and how the stent placement went. We're all pulling for her!
- Joyce

Re: don

Joyce
It's impossible to know what to do for the best. Looking back now I wish that I had not shown my distress to my husband. I think it was an extra burden on him when I broke down and wept.
There is a post somewhere on these forums from a man in India and he said how he admired the strength of his wife in not showing how bad she was feeling. I told my husband and he agreed that it would be easier not to have to face the grief of loved ones.
It's now 16months since my husband died and I go over so many things in my mind. The conclusion I have come to is that there is no 'right' way to behave. To show love means to show weakness and my husband both wanted to experience both my strength and my vulnerability.
Several cc sufferers who contribute to this forum often mention their guilt at what their loved ones are enduring. Like most human situations it is a mixture of emotions - we can only do what seems best at the time.
Patricia

Re: don

Dear Patricia,
You're absolutely right - there is no right way to go about this and no matter what we do, we go over it in our heads and regret what we did or what we didn't do. I know this with my head but my heart gets caught up in "should haves" especially since my mother was so depressed and maybe she could have used a shoulder to cry on, instead of having to listen to me telling her it was all going to be all right. No use in regretting all this, I know! Just like there's no use in your regretting showing your anguish to your husband. I know my mother got annoyed when a dear family friend cried in front of her but I can't help feeling that I was a bit too strong  and efficient-seeming in front of her. Oh, there I go again!!! I guess it's just human to have these thoughts constantly playing over in your head. I know she loved me, just as your husband loved you, no matter how we acted at the end. It was probably not that important to them at that time, anyway. They were busy doing the business of dying, and we can never go there with them and understand completely what they were thinking. I remember thinking she was getting further and further away from us as she prepared to leave this world, so these mundane affairs probably didn't have much impact on her.

Thanks for your post - it helps me to exorcise some of my demons. I hope you can exorcise some of yours, too - my heart goes out to you.
-Joyce

Re: don

You wrote
They were busy doing the business of dying, and we can never go there with them and understand completely what they were thinking.

I think this is so true. Just as we are conflicted they also are conflicted. They know they are seriously ill but they hope they can survive. Maybe they want to say goodbye but that is too final it means giving up on that little sliver of hope. Maybe their illness and the thought of death is all consuming and all they can think about is their own predicament. This is particulalry true of those who have serious pain.

My husband had a nurse who was experienced in dealing with cancer patients. She used to say to him 'Now you can help yourself because you have no pain. When the pain comes, all you can do is endure.' I guess for those who had pain at the end they were unable to rise above it and reach out to the survivors, their carers and loved ones.

We did our best out of love in a situation we had never faced before. That's all we can say.
My very best wishes to you
Patricia

Re: don

Patricia,
These are all thoughts I have had but it's so comforting to hear someone else put them into coherent words - an affirmation that I'm still capable of logical thought, and that I"m not alone out here.  Today was exactly 8 months since my mother died and I'm still not functioning completely - though on the outside it seems like I am. I just had a former very good friend call me out of the blue - it seems enough time has gone by that now people assume they can chat and invite me out without having to deal with the uncomfortable subject of my mother's death. But I'd rather stay home than pretend she never existed to make everyone else happy. Not that I really bring her up that often -- I'm the stoic -- but the fact that everyone avoids mentioning her really bothers me, no matter how well-meaning they may be.

Still facing that unknown territory, and wondering when it will end.

Thanks for letting me vent

Joyce