1 (edited by Deb_ Sat, 24 Mar 2012 20:19:04)

Topic: I'm lost...

I'm not sure why I'm posting or if there's any point now but I need to reach out to people who understand. I am so lonely and angry right now.

On 15th December 2011 my lovely husband was diagnosed with liver cancer. He had been feeling nauseous and tired for a few weeks and the doctors thought he had gallstones but a biopsy showed liver cancer or so we were told. Our world fell apart.

He was so positive and determined to fight it every step of the way. We met with the oncologist for the first time on December 21st. The oncologist said that the cancer had spread to the lining of the bowel so surgery was not an option. This was devastating. He said the only treatment would be chemotherapy beginning in the middle of January. His prognosis was 1-2 years. We were told that, other than chemotherapy and its side effects, he would lead a relatively normal life for the coming months and then start to decline.

We have three children - two sons who are 17 and 15 and a daughter, 7 at the time (she turned 8 last week). We told our sons everything but we told our little girl that Dad was still sick and that the doctors were trying to help.

We left with me feeling lost and confused but my husband was determined to fight. Just two days later he couldn't get out of bed and he was vomiting all the time. Christmas Eve and Christmas Day he tried to hard, God bless him, to be with us but after just 2 hours out of bed he had to go back.  I texted the oncologist and told him how bad things were. His medication was adjusted.

By 29th December I brought him to the hospital as he was very jaundiced and in a lot of pain. We met the oncologist who diagnosed a blocked bile duct. We still thought at this point that he had gallstones as well as cancer so we thought the blockage was caused by the gallstones. At no point was bile duct cancer mentioned yet. The doctor said he would simply need a stent put in and the fluid drained.

Days went by. Finally on January 5th a radiologist and doctor sat us down and said that it was more serious than they thought. They couldn't put in the stent because the tumour had grown so much it was blocking the bile duct completely. This is when bile duct cancer was first mentioned. Up to now he was treated for liver cancer. Even when bile duct cancer was now mentioned, I didn't, at the time, realise how much more serious it was than liver cancer. I thought they were much of a muchness. The radiologist said he would try to put in a tiny tube in the side of the liver to relieve the build up of bile. This was a success, much to our delight.

A few days later we were told that he was back on track for chemotherapy but that night he developed an infection at the site of the tube. The next day the hospice team came to his bedside and suggested that he go there the following day. We were shocked and horrified. I thought it was crazy for him to go to a hospice because I still thought he'd be home soon.

The next morning a team of doctors spoke to me. They said that he was declining rapidly. They were shocked themselves. I asked if the initial prognosis was now changed and they said yes, he had just a few weeks to live. All I remember now of that day is crying and blindness. It was like I could hear voices but my tears and shock made them seem far away and all I could see was darkness.

He was transferred to the hospice that afternoon, believing that it was just for respite (he was too drowsy for the doctor to explain how serious it was). I cried in the ambulance and he caught my hand and said "hey love, why are you crying? I'll be home in a few days." I felt so alone.

Two days later, the doctor and counsellor sat us down to explain to my children exactly what was happening. The boys were completely up to date with everything but our little 7 year old didn't realise what was happening at all. We talked and they explained in a kind, loving way that they had tried everything and nothing had worked. My precious girl was getting very scared and then I had to say "daddy's going to heaven". Everyone cried their hearts out. It was the saddest day of my life, watching my children's hearts break. After this meeting my little girl ran down to her Dad's room, hugged him and cried. Her daddy said "hey, what's wrong princess?" She just cried and cried. At the point I think reality dawned on Diarmuid, that perhaps the end could be closer than he thought but he still had hope, lots of it. Why wouldn't he, when just 4 weeks before he was given a prognosis of 1-2 years.

After just five days in the hospice, the most beautiful, loving facility on earth, he fell asleep and we knew he wouldn't wake again, not fully. The next day, Tuesday 17th, he passed away holding our sons' hands, with me running down the corridor from the day room and getting there just in time to say goodbye and kiss him.

He was 47. Diagnosis of cancer to his passing away was just 33 days.

We stayed with him day and night for those 6 days in the hospice. It was a privilege and a blessing.

Now 2 months on, I'm sitting here bereft. I miss him so much I find it hard to breathe. He was everything to the children and everything to me. He brought them to school and collected them every single day. He was there for all their music lessons. He brought our daughter to drama, swimming, the playground etc. He did everything with them.

I don't know how we're going to carry on.

"The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares." [Henri Nouwen]

Re: I'm lost...

Dearest Deb, words cannot express how terribly sorry I am about your Husband. Everything happened so quickly I am sure you have not caught your breath. You are still in shock along with a mountain of grief, but I promise you down the road aways it will lighten up and your Happy Memories will take over and the grief will turn to an ache in your heart but things will get better. You and your children will rely on each other and you will survive as that is what your husband would have wanted. I call it, living my new normal. You never know how strong you are until "strong" is the only choice you have!

From a book of blessings called "Benedictus" by John O'Donohue - Irish Poet & Philosopher

When you lose someone you love,
Your life becomes strange,
The ground beneath you becomes fragile,
Your thoughts make your eyes unsure;
And some dead echo drags your voice down
Where words have no confidence
Your heart has grown heavy with loss.
And though this loss has wounded others too,
No one knows what has been taken from you
When the silence of absence deepens.
There are days when you wake up happy;
Again inside the fullness of life,
Until the moment breaks
And you are thrown back
Onto the black tide of loss.
Days when you have your heart back,
You are able to function well
Until in the middle of work or encounter,
Suddenly with no warning,
You are ambushed by grief.
More than you, it knows its way
And will find the right time
To pull and pull the rope of grief
Until that coiled hill of tears
Has reduced to its last drop.
Gradually, you will learn acquaintance
With the invisible form of your departed;
And when the work of grief is done,
The wound of loss will heal
And you will have learned
And be able to enter the hearth
In your soul where your loved one
Has awaited your return
All the time.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: I'm lost...

HI,Deb_,

I sincerely feel your pain,your suffering and truly understand what you are going through.

I lost my sister-in-law 2days ago at hospice care;she had just admitted 4days ago. Like you,my wife and our family were lucky enough to communicate with her before she totally unresponsive.
My wife right now is still in the denying stage;the two sisters were very closed;
and that affected our entire family emotionally a lot.But let me quote our moderator Lainy  the poem she wrote to comfort me and i hope you will find peace and comfort to calm your heart; the strength and purpose to go on with life ; and the courage to carry on your husband's dream to care for his children especially his princess that he cared.

"Those we love must someday pass beyond our present sight…
They leave us and the world we know without their radiant light.
But we know that like a candle their lovely light will shine
To brighten up another place more perfect…more divine.
And in the realm of Heaven where they shine so warm and bright,
Our loved ones live forevermore in God’s eternal light."

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: I'm lost...

Dear Deb

Your message touched me very deeply; I am so sorry for your loss. I well remember the shock of hearing my sister's cc diagnosis. Your description of the resulting numbness is something I remember very well and I still get those episodes, like I'm hearing things from underwater.

Lainy's comment about the "new normal" applies to me, too. I remember how comforted I felt when I first found this site and realised I was not alone. My new cc family has been a tower of strength and a great source of comfort and support. Please stay with us and let us do what we can to support you, too.

My very best to you and your children.

Hugs from London
Julia

"Time may be a great healer, but it's a lousy beautician."

Re: I'm lost...

Deb:  I lost my husband just over 4 months ago and I know exactly where you are coming from.  It's hard to say the least.  Your husband passed so quickly that I know it has to be hard for you.  My husband was diagnosed at age 61 and passed at age 64.  No matter what, a short time from diagnosis or a long time, it's just plain hard.

You will carry on, for your children as they need you more now than anything.

Keep your husband alive in your heart and mind.  He is now your angel in heaven watching over all of you.

Hugs,
Margaret

Re: I'm lost...

Dear Deb,

I am so very sorry about the loss of your husband. I know that words won't help right now, but I do know that you are around people here who have gone through what you have and can so relate to what you feel right now. So please, continue to reach out to us all and we will be here for you.

I wish that I could help you more, please know that I am thinking of you and your family.

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: I'm lost...

Deb_,
I am so very sorry for your loss. I can feel the heaviness of grief in your post and I wish you didn't have the physical pain of carrying this with you.

I am a young widow too- I get a lot of support from the merrywidow website.

Please have a look for the CS Lewis book, A Grief Observed- it helped me in the early days. Winston’s Wish is the leading childhood bereavement charity in UK, (I know you are ROI)- you will find support there when you are ready.

For now all you can do is survive- my goodness that is very difficult.

Thinking of your family and especially you tonight,

CM

Re: I'm lost...

Lainy, PCL1029, Julia, Margaret, Gavin and CL, thank you from the bottom of my heart for your beautiful messages of friendship and support. They made me feel better... a bit lighter.

I feel cheated. I feel my wonderful husband got a raw deal. I know nobody gave him cancer but I can't help thinking 'what if?' about so many things. Should they have given him a dose of chemotherapy soon after diagnosis when he was still very strong and very healthy? Would that have given him a step up on the ladder to more time with us? Should they have operated even though the cancer had spread? Should they.... etc etc.

It's a monster of a disease... an evil horror.

Thank you again guys. I truly appreciate the support.

Deb x

"The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares." [Henri Nouwen]

Re: I'm lost...

Deb, we have learned that it does no good to dwell on that which cannot be changed. Would have, could have, should have are not in our dictionaries. CC is very rare, when it's diagnosed many times it is too late...it is impossible to fight these facts. We do know that our loved ones are in a more Peaceful place and some day we will be together again.I made up a Mantra for myself and it seems to help me when I feel down. Teddy and I were married 17 years, second marriage. So I say,"shame on me, I had for 17 years what most people never have in a lifetime". That seems to snap me out of it for awhile. Also I feel Teddy all around me and have logged 50 happenings in the last year that let me know he is here. He used to come to me through music a lot, but that has stopped. Now he lets me know in other ways. By believing he is here it gives me security and Peace. Some may not believe but we do have our own little club here that does as they have had proof from their loved ones as well. You need to give yourself a lot more time but we are here for you!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: I'm lost...

Dear Deb,

It breaks my heart that you have lost your husband at a young age and your dear children have lost their father. I am sorry the disease progressed so quickly. I will pray for God to give you and your children the strength to carry on and live your lives to the fullest. I hope your sadness and pain turns to fond memories of your dear husband.

Love, -Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: I'm lost...

Dear Deb,

It is with great sadness that I read your posts.  Although my husband was 62 when he passed away from this disease, our stories are much the same.  He also went quickly.  Less than two months after his first symptoms.

I also felt much as you, but have come to realize that there is no right or wrong here.  There is nothing you  could have or should have done differently.  It is what it is.  It's not fair, but this disease does not play fair. 

I found this site shortly after my husand passed away and the people here are what have gotten me through the past 3 1/2 years. 

With time you will come to find that you are stronger than you think.  I was once told that you never know how strong you are until being strong is the only choice you have.  I have found that to be true. 

I still miss Jim,  I still love him and wish we had been able to share more time together, but that was not to be and I am doing my best to keep on going taking small steps forward and living life one day at a time.

Your husband will always be with you in your heart and memories.  My thoughts are with you and your family during this most sad and difficult time. 

Come back here often.  There is always someone here willing to listen and to help when you need it most and we all truelycare and understand.

Take care of yourself and your family now.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: I'm lost...

Deb, me heart breaks for you and your children. I am so sorry for your loss and the pain you are experiencing. I will pray for your family.  Hugs
Lisa

This Information Is Not Intended Nor Implied To Be A Substitute For Professional Medical Advice. You Should Always Seek The Advice Of Your Physician Or Other Qualified Health Care Provider

Re: I'm lost...

Deb,

I know you and your family are going through a devastating time right now.  Please know that others feel your pain and will support you through this.  Your husband is free of his pain and is at peace now so may you find comfort in that.  Many hugs coming your way for you and your children,  PeggyP

Re: I'm lost...

Dear Deb,

I am so glad that we were able to help even just a little bit for you. Please keep coming back here as we will all continue to support and help you as much as we can.

I know what you mean about the "what if" thinking. I did that a bit too with my dad after he passed away. After my dads diagnosis, he had the choice of either chemo or PDT as his treatment and he chose PDT as he wanted the best quality of life for the time that he had left with us all. But after he passed, I sort of thought for a short time what would have happened if he'd done nthe chemo instead of the PDT.

But I'm with Lainy here in that the dwelling on the what if's doesn't do us any good. I know that it can be hard not to sometimes, but please don't focus on this type of thinking.  I'm sure that we all wish that we could go back and change things sometimes, but would that change what happens anyway.

We are all here for you.

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: I'm lost...

Deb,

I was so sad to read about your loving husband's passing and so quickly too.  Your children will have great memories of their dad because you will pass along all of the stories you and he made together and with them.  He will always be there in the eyes of your children, when they laugh, in their smiles.  It's hard to see our children in pain, but hopefully the spot that is holding the pain and grief will be filled with happy memories of their dad and your husband soon.

Hang in there Deb, we are all here for you.
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: I'm lost...

Thanks Pam, Darla, Lisa, Peggy, Randi and to Gavin and Lainy once again.  Lainy and Gavin you're right. Dwelling on the past does no good but his time in hospital, lying in bed waiting on a stent that wasn't going to happen, him being in pain, uncomfortable, it just eats me up inside and yet I know I need to move past it. We thought he had a couple of years but instead he spent 14 precious days lying in a hospital bed pointlessly, none of us knowing that he had just days left to live. We're blessed that he had, at least, the last 6 days in the hospice but had we known that he was dying we would have taken him home or moved to hospice much sooner. I'm just so angry at his oncologist.

Mostly I'm angry with grief. Friends and family have mostly shifted back to their regular lives and the kids and I are trying to muddle through and put on brave faces. So many people are uncomfortable around us if we're upset. It's like we have to pretend to be okay for their benefit.

"The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares." [Henri Nouwen]

Re: I'm lost...

Deb, you and your children do not have to pretend for anyone, you must live out your grief until it is right for you to start moving on with your "new normal". It is true that when a loved one passes your life dynamics change. I have not heard from people that were so close to my Teddy! So, in this last year I have surrounded myself with others in my situation and have developed a new group of friends who understand how I feel.
I am going to see if you have an email on here as I want to share something that happened to Teddy, similiar to your husband and how I am working on getting over it. Life is too short as you have witnessed and to hold the anger serves no purpose at all. I swear to you that in time the pain does ease up. How are the kids doing?

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: I'm lost...

Dear Deb,

I know sometimes it feels like everyone has forgotten about you and is more interested in their own lives, but that is not the case here. Come and visit any time and we will be here to listen and support you. Take care, Deb and remember we all care.

Love, -Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: I'm lost...

Deb_

People are only as good as they are and you have to learn to direct them because i am sure many of them really want to help you but don't know how.

This was posted on the merrywidow topic board recently. I'm sure they won't mind me reproducing it (it didn't mention copyright!)

HOW YOU CAN HELP ME

Please talk about my loved one, even though he is gone. It is more comforting to cry than to pretend that he never existed. I need to talk about him, and I need to do it over and over.

Be patient with my agitation. Nothing feels secure in my world. Get comfortable with my crying. Sadness hits me in waves, and I never know when my tears may flow. Just sit with me in silence and hold my hand.

Don't abandon me with the excuse that you don't want to upset me. You can't catch my grief. My world is painful, and when you are too afraid to call me or visit or say anything, you isolate me at a time when I most need to be cared about. If you don't know what to say, just come over, give me a hug or touch my arm, and gently say, "I'm sorry." You can even say, "I just don't know what to say, but I care, and want you to know that."

Just because I look good does not mean that I feel good. Ask me how I feel only if you really have time to find out.

I am not strong. I'm just numb. When you tell me I am strong, I feel that you don't see me.

I will not recover. This is not a cold or the flu. I'm not sick. I'm grieving and that's different. My grieving may only begin 6 months after my loved one's death. Don't think that I will be over it in a year. For I am not only grieving his death, but also the person I was when I was with him, the life that we shared, the plans we had for watching our children grow, the places we will never get to go together, and the hopes and dreams that will never come true. My whole world has crumbled and I will never be the same.

I will not always be grieving as intensely, but I will never forget my loved one and rather than recover, I want to incorporate his life and love into the rest of my life. He is a part of me and always will be, and sometimes I will remember him with joy and other times with a tear. Both are okay.

I don't have to accept the death. Yes, I have to understand that it has happened and it is real, but there are some things in life that are just not acceptable.

When you tell me what I should be doing, then I feel even more lost and alone. I feel badly enough that my loved one is dead, so please don't make it worse by telling me I'm not doing this right.

Please don't tell me I can find someone else or that I need to start dating again. I'm not ready. And maybe I don't want to. And besides, what makes you think people are replaceable? They aren't. Whoever comes after (if anyone) will always be someone different.

I don't even understand what you mean when you say, "You've got to get on with your life." My life is going on, I've been forced to take on many new responsibilities and roles. It may not look the way you think it should. This will take time and I will never be my old self again. So please, just love me as I am today, and know that with your love and support, the joy may slowly return to my life. But I will never forget and there will always be times that I cry.

I need to know that you care about me. I need to feel your touch, your hugs. I need you just to be with me, and I need to be with you. I need to know you believe in me and in my ability to get through my grief in my own way, and in my own time.

Please don't say, "Call me if you need anything." I'll never call you because I have no idea what I need. Trying to figure out what you could do for me takes more energy than I have. So, in advance, let me give you some ideas:

(a) Bring food or a movie over to watch together.

(b) Send me a card on special holidays, his birthday, and the anniversary of his death, and be sure to mention his name. You can't make me cry. The tears are here and I will love you for giving me the opportunity to shed them because someone cared enough about me to reach out on this difficult day.

(c) Ask me more than once to join you at a movie or lunch or dinner. I may so no at first or even for a while, but please don't give up on me because somewhere down the line, I may be ready, and if you've given up then I really will be alone.

(d) Understand how difficult it is for me to be surrounded by couples, to walk into events alone, to go home alone, to feel out of place in the same situations where I used to feel so comfortable.

Please don't judge me now - or think that I'm behaving strangely. Remember I'm grieving. I may even be in shock. I am afraid. I may feel deep rage. I may even feel guilty. But above all, I hurt. I'm experiencing a pain unlike any I've ever felt before and one that can't be imagined by anyone who has not walked in my shoes.

Don't worry if you think I'm getting better and then suddenly I seem to slip backward. Grief makes me behave this way at times. And please don't tell me you know how I feel, or that it's time for me to get on with my life. What I need now is time to grieve.

Most of all thank you for being my friend. Thank you for your patience. Thank you for caring. Thank you for helping, for understanding. Thank you for praying for me.

And remember in the days or years ahead, after your loss - when you need me as I have needed you - I will understand. And then I will come and be with you.

20 (edited by Deb_ Thu, 29 Mar 2012 17:03:13)

Re: I'm lost...

Lainy, thanks so much for the email. The kids are up and down. My 15 year old is just starting to grieve. He's under awful pressure in school, partly because he missed 3 weeks or more when his dear Dad passed away and partly because he has state exams to sit in June and no matter how often I tell him that he's doing great and he doesn't have to study every minute and exams are not the be all and end all, he puts himself under awful pressure. I've had a chat to his Class Teacher and she's going to tell all his teachers that they need to ease up on him. He just lost his Dad and some of the teachers have the nerve to tell him that they're disappointed in his slipping grades. I'm horrified. Other teachers have been fantastic though, very loving and kind.

My 17 year old is also under pressure with study. He will have state exams next year so this year at least in theory he should be able to relax but he gets a lot of homework. His Class Teacher is wonderful and is going to sit down with him and I tomorrow and work out a realistic, gentle schedule. Their mental and emotional health is so much more important now than school work.

My little girl turned 8 two weeks ago. It was so sad not having her Daddy there but we had a nice day. She hasn't mentioned her Dad is about 5 weeks or so now. She's not facing it yet. She cried a lot for the first 2 weeks but is now trying to 'forget' it for the moment. I have no doubt that the pain will come again. She has been clung to me for the last couple of months and has been out of school more than in.

I'm blessed that they're very good kids... kind and caring.

Thank you so much Pam. It is definitely reassuring to be able to come here and talk amongst people who understand.

CM, thank you. I am blown away by the extract you pasted. It's exactly spot on! I was nodding my head the whole way through it. My sister in law keeps saying "call if you need anything". I couldn't figure out why it made me so angry when she said it. It's because she knows me and the kids so well (and I babysat for her practically every weekend for 15 years!!) and yet, she hasn't once come to help without being asked. She hasn't once brought food or offered to have my daughter to stay or taken me grocery shopping. Nothing. All she's done is used the words 'call if you need anything'. It's annoying!! but I'm blessed to have other people who do truly care.

xxx

"The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares." [Henri Nouwen]

21 (edited by Pamela Thu, 29 Mar 2012 16:05:07)

Re: I'm lost...

Dear Deb,

I definitely understand when you hear the words, "Call me if you need anything, that it really annoys you. I really don't like hearing that either.
  It's a polite easy way out. I just wish people would do things instead of saying that. I would never dream of calling someone to cook dinner or do anything for us. I have had two friends that have done stuff for Lauren. One Mom and daughter we are good friends with brought over a huge pot of broccoli cheese soup. We all ate together and had a great time. Just this week, our next door neighbor brought over a big pot of broccoli cheese soup too. If you haven't guessed, that is Lauren's favorite soup. I thought that was the nicest thing. They just did it out of the goodness of their hearts. They didn't say "Call me if you need me." I wish more people were like that. I will give your sister- in- law the benefit of the doubt and say maybe she just doesn't know what to do or say to make you feel better.  You will be in my prayers, Deb. Take care.

Love, -Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: I'm lost...

Deb,

I totally agree.  That posting was excellent.  It is exactly how we feel.  Unfortunately unless they have been where we are now others just will never really get it.  I was fortunate to reconnect with a lady who was a customer of ours to find out her husband past away only a few months after Jim.  This was about a year after Jim passed.  We have so much in common and have kept in touch ever since and become very close friends.  Our lives have been so similar and we have so much in common.   We live about an hour apart, but try to get together as often as we can and email all the time.  Having someone who truely knows and understands because they are feeling the same keeps me sane.   We need to reach out and get support from those who have been there and who can be there for us and us for them. 

Keep coming back to this site and all the lovely people here as they all understand and truely care.  I'm hoping you can eventually find someone near you to share with, too. 

My heart just goes out to you and your lovely children.  I wish you all well and hope things work out for them.  Hopefully they too will find a few special people who care enough to understand.  Be strong for each other when you can and lean on each other for support.

Know that I am thinking of you and your family and truely do care and understand.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: I'm lost...

Deb
I've just picked up your post now and I wish to offer my belated condolences to you and your dear family.  I feel for you as you grieve for your husband while at the same time care for your children and help them through a traumatic time in their lives.  I believe that our capacity to deal with stress is limited and I am a strong believer is professional help.  Have you looked into what services are available to you in Cork?

Take care and come back often and tell us how things are going for you and the kids.

Gerry

Re: I'm lost...

Deb,

I'm so sorry for your loss.  I know the feeling of being annoyed with people that just don't understand. 

Tomorrow will be three years since I lost my Mom to this horrible disease.  I remember so well the feelings that came when I finally came out of the fog of helping plan a funeral, giving my Mom's eulogy, writing all of the thank you notes, comforting my Dad and my husband, children and my sister and her family.  It was almost as if I woke up two months later with everything done that needed to be completed.  Grief nearly blindsided me.  I felt as if everyone had moved on and here I was needing help....lots of it.  My "best" friend even told me to "get over it and get on with the rest of my life. 

It was only my fear of prison that kept me from doing what I really wanted to.....

I think most people are frightened of death and have no skills in how to comfort someone.  One of my fondest memories is on the first anniversary of my Mom's death one of the nurses in the hospital where I work, walked into my lab with a piece of cheesecake and two forks.  She said she remembered my Mom's advice to always have dessert first and we were going to honor her and eat the cheesecake in her memory.

Silly?  yes.  but comforting oh yes!!!  She remembered. 

Please read some of the letters from our Dr. Giles on this site.  He has great advice.

Remember......Grief is the price we pay for loving.....

We'll be here with you on your next journey.  Grief is the hardest job I think we ever have.  There is no timetable and no two people will every grieve in the same way.  Here we understand.  This site has helped me so much.

Hugs...
Pam

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: I'm lost...

Pam-

That is the sweetest story. It made me cry. I wish everyone could be like that nurse. Good to hear from you again! Take care.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.