Topic: I never wanted to post here

Yesterday, Sunday morning my dearest darling father slipped away.  I cannot begin to describe the unbelievable pain and anguish I am now feeling.  Tears are streaming down my face as I write this.  It is almost 5am here, it is blowing a gale outside, I know because I have been lying on my bed listening to the wind and rain all night.

My Dad recently remarked to me that it wouldn't be long before I would be writing in the 'In Remembrance' section.  (He was a regular on this website too) At the time I told him that I didn't think I would want to.  That should I lose him (I always hoped that we would beat this) that I would never want to see or hear the word cholangio f****** carcinoma again.  I was wrong.  I feel drawn towards this board, this club that we never wanted to join.  I know that you all understand what I mean.

I don't know how I move on from here but I know that somehow I will.  I feel so sad that I have had to lose my best friend in life so soon.  (My Dad was only 63).  I feel so sad for my Dad that he has lost his life this way.  He fought so hard.  We consulted with Drs all over the World seeking out  cutting edge treatments.   The disease was relentless though.  As soon as we had conquered one hurdle it threw up another.  It never left us alone. 

My Dad was always so upset to hear of all the wonderful people on this site who had lost thier lives to this cruel disease.  So many beautiful people since we joined this community in 2005.  We tried to hold onto hope, we tried to focus on how this disease effects individuals in different ways.  I have always been so encouraged and grateful to hear from Peter or Jeff. 

Right now I just don't know what more to say.  I feel so numb.  I cannot believe that I will never see him or hear his voice again.  We spoke all the time.  We almost instinctively knew what the other one was thinking.  My dad was a clear logical thinker.  A strong no nonense sort of person.  He often said to me "look forward never look backwards".  He never did.  I think he found me far too sentimental and emotional at times!  I always wished I could be more like him.  So strong, so capable.

Dad, how am I going to survive without you?

Julesxxx

Re: I never wanted to post here

Dear Jules,
I am crying in sympathy with you right now, having followed your father's story and hoped against hope for the best for him. And I feel as you do, that I cannot imagine going on without my best friend - in my case, my mother. Your father will be sorely missed. It is just NOT RIGHT that this happens.

I can't say anything that doesn't seem trite, but I want you to know that I'm grieving in some small part with you - and I hope you find the strength to get through this terrible time. Nothing right now will make the pain any duller, but you always have us on this board who know what you're going through.

I wish you peace,
Joyce

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Oh Jules,
I too have followed your dad and his struggle since I joined the board in January. He always seemed so logical and strong in how he approached treatment and the battle that it sometimes took away my panic at what was happening to me. It is difficult for me to comprehend what you must be feeling right now. I dont know what else to say expect I am so sorry this has happened and we are here for you. I will keep your family in my prayers.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

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Dear Jules
my tears are shed yet again. This awful cholangio carcinoma. It is relentless and never appears to stop, no matter what.
No words or deeds will make a difference at this stage.
We are all here for you at any time. Rant away.
This is a very special place and we were all rooting for your dad.
All our prayers will be for you and the family and our love too.
xxxxxxxx Alans mom

U.K.Member

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Jules,

The Lindsey, Clements, Pollock, Giles families send you their love. 

You and your father were always so gracious about sharing all of your research and experiences while going through this. 

We share your grief.

Our thoughts and prayers are with you.

Stacie

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Jules, I am so saddened to here of your fathers

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Jules -
My heart goes out to you.  We don't like to say good-bye to those whom we love. 
They had pain here.  They have no pain there.  They struggled here.  THey have no struggles there.  You and I might wonder why God took them home.  But they don't.
They understand.  They are, at this very moment, at peace in the presence of God.
We are the ones that continue to struggle because we miss them so much but we will
see them again and just think of the joy.  May God give you strength and peace.
Love Betty

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Jules,  I'm lost for words.  The first thing that came to me when I read your post of rememberance for your Dad, was A Psalm of David that I memorized in Sunday School back in June, 1965.  The 23rd Psalm. 

God Bless and a prayer coming your way!

Jeff G.

Take it to the Limit,One More Time! (Eagles)

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Oh Jules. So SO sad to hear your news.
Everyone has said everything, so I will send you HUGE hugs.
I wish you strength to make it thorogh this awful time.
Your post today was a post I never wanted to read. You and your Dad have both seen so brave, and such a comfort to so many.
Oh love, big big hugs again.
Kate xxxxxx

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Jules,

Although I am new to this group of wonderful people, and new to the disease, I feel no less saddened by your Fathers passing. I too am watching the CC take every bit of life away from my Dad, and I know someday, I too will have to face this incredible loss myself. Currently I am in denial most days, and hope that this day never comes for me, but being realistic, I know in my heart I have to prepare to let go.

You are in my thoughts,
Lisa

Re: I never wanted to post here

Dear Jules
I am so very sorry to hear of your father's death. There is nothing I can say that will in any way make your grief easier to bear.  There is no consolation when someone we love is taken away in this untimely way. My thought are with you and your family at this difficult time.
I would like to add that I really admired the way you and your dad worked as a team and I am certain that it gave him strength to know that you were always at his side in the dark and difficult days.
Patricia

Re: I never wanted to post here

Dear Jules

SO sorry to read about your Dad, As I said before you and your Dad were so helpfull to Jon and I when we needed advice and I really admired your strengh and determination
My thoughts are with you and your family
Alison Jon's wife

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Jules,
   I'm very sorry for your loss. Your Dad was a great inspiration to all of us and we appreciate you sharing your experiences here. I hope time will help heal your heart and you can eventually find your way ahead. I believe in angels and I am sure sure your Dad remains by your side, helping you in anyway he can. Take care and god bless. Mary

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Jules,
I'm so sad to hear of your Dad's passing and your loss.  You both have been a mainstay for this community.  I had such hopes for the treatments he tried and admiration for both of your tenacity and attitude.
I know the memories and closeness you shared in helping him fight this disease can never replace his loss but I hope and pray that in years to come you'll be sustained by all you did and shared together.  As a father myself I can imagine the depth of the love and thanks he must have felt having you so close through his triumphs and and losses.
Bless you.  You'll remain in our hearts and prayers.

-Peter

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Dear Jules,

I can totally understand and imagine the pain that you are going through right now.  My own father (my best friend) has this horrible disease.  His condition is not so good right now, but I still hope for the best, and doctors are helping his as much as they can.  Over the past few weeks have read your posts and can understand the pain and helplessness that you are going through.

At this point I can only say that you and your family are in my thoughts and prayers and I hope that the pain and suffering will ease with time.  Now is the time as ever to stay as strong as possible, and take good care of yourself.

Stay strong!

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Thankyou so very much to all of you for your messages of comfort and support.  It really does mean so much and I know that my Dad would be moved.  Peter and Patricia - you are right, the bond that we had became even closer throughout my Dad's battle.  My Dad regulary told me just how much it meant to him that I was by his side supporting him and this is a great comfort to me now.

Do not lose hope - we must continue to strive to raise awareness and promote research into this truly devestating disease.  I remain as committed to that cause as ever and I will continue to assist with input on this site wherever I feel I maybe able to help.

love, Jules

Re: I never wanted to post here

We Thought of You Today

We thought of you today,
But that is nothing new
We thought of you yesterday
And will tomorrow, too.

We think of you in silence
And make no outward show.
For what it meant to lose you
Only those who love you know.

Remembering you is easy,
We do it everyday.
It's the heartache of losing you
That will never go away.

Re: I never wanted to post here

Dear Jules,

I am so sorry to hear about the loss of your father.  He fought so very valiantly...and you fought hard for him, too.  May you find peace in the wonderful memories of your lives together here on earth.  So what do you do now?...just "do the next thing", whatever that may be.  Just keep putting one foot in front of the other.  The gut-wrenching anguish will subside as time goes on, and the warm loving memories will flood your mind and heart.  While your Dad's time here was far too short, remember that you will see him again for and in eternity, when your mission here is complete.  And you will here him speak to you!  My thoughts, prayers and love are with you.  We hit the 5 month mark today, and we just keep doing the next thing.

Love, Joni

19 (edited by jules Fri, 05 Oct 2007 03:51:24)

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Thankyou all so  much for your kind messages.  At the moment I am just taking one day at a time and all the rollercoaster of emotions that go with it.  I just wanted to post my tribute to my Dad that I read at his funeral:

One of the many things that I loved most about my Dad was his endless energy and appetite for adventure.  whether he was at the helm of a yacht or riding his mountain bike over the Downs he pushed himself to the absolute limit.  although I feel devastated to have lost my Dad so soon I take great comfort from the fact that he lived such a fulfilled life.

Life was certainly never dull when he was around and his enthusiasm and sense of humour was infectious.  My dad would roar with laughter watching Inspector Clouseau negociate a tiny toilet on a plane with both legs rigid in plaster and on crutches - my Dad's chuckle could be heard throughout the house.  Another favourite was Mr Bean driving his mini whilst getting dressed, shaved and cleaning his teeth.  This required him to steer the car with his knees (something I remember my Dad doing on occasion - allowing him to navigate at the same time).

On a more personal level, I am grateful that I had the opportunity to tell my dad just how much I loved him, that I was proud of him and all that he had achieved with his life.  I am also so very grateful for all the loving support he gave Sophie and I over the years.  He was always thinking of us.  I remember on one occasion when he even managed to ring me from his bed in hospital to wish me luck with and exam that I was taking that morning.  His solid, unwavering support was never in question.  Sophie adored her grandad and we have many treasured memories of the times that we spent together.

I will remember the good times Dad and I feel priviledged to have had your influence in my life, you will remain in my heart forever.

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Jules,

Thanks for sharing that with us.  It was beautiful. 

Stacie

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Dear Jules,

What a wonderful tribute to your Dad, someone I have admired so deeply.
I can now envision him on his yacht, the wind blowing his face and his laughter carrying in the breeze. 

Thank you for presenting to us this wonderful memory of your Dad.  He will never be forgotten.

Hugs
Marion

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

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Jules, that was lovely to read. Hope you are doing OK. Such a tough time. Thinking of you. It was really lovely to think of your Dad riding over the Downs! YES! Cherish those memories!

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Beautiful, Jules. I'm sure he would be proud. Much love and support going your way!
-Joyce

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Jules,
    Though nothing can stop the pain you are feeling right now, please know that you are in my thoughts and prayers!
_Sonja

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Sorry Jules and what a lovely warm tribute  to your Dad.  May you find peace in the memory of his love for you.
Patrice