My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin (Page 5 of 5)

Dear Lisa,

Hope you managed to get some results - this bureaucratic red tape can be so frustrating - it's not like you're waiting for the results of a routine blood test or something!

So you were right about there being no lung cancer - just goes to show how much more we can know that the doctors don't.

I hope your dad is comfortable - give him a hug from me. And if that's too weird for him, give him a mental hug! I understand the non-demonstrative family, as mine is like that too - but my mother actually appreciated hugs at the end, which surprised me. Then again, she's a woman and was a bit mushier than the stoic men in the family.

Good thoughts going your way,
Joyce

Hello My Friends,

It is with a very heavy and sad heart that I write this post.
The results were given to us late this afternoon after much waiting.

It is Metastatic Colon Cancer. Dad's poor body is riddled with cancer everywhere. We have now lost all glimmer of any hope. At most we have been given 3 months, but were told that most likely it will be much sooner.

The cancer has engulfed his entire liver and surrounding lymph nodes, it has also spread to his bone, stomach, and lymph nodes in his chest. The intrahepatic bile ducts are also affected, but no tumor seen.

I have been preparing myself for this moment in time for over 6 weeks now, but it isn't coming any easier. I feel like I have been told all over again that he has cancer and that we are going to lose him. I know I should be strong right now, and I am in front of other people, but sitting here writing to all of you I am falling apart. I suppose I cannot continue to live in denial anymore, since the facts are in, and I now have to accept what is ahead.

I cannot imagine my life without him being part of it. I Love this Man SOOOO Much it hurts. He has always been there for me through the good and the bad times in my life, and I count on him for so much. Mom is taking it really hard, even though we both knew in our hearts that this day would come. I am worried about her as well as my Dad. He does not even know yet as he is still sleeping, so it is going to be a long night ahead. We contacted hospice, and they are coming out to meet with us tomorrow to get things set up. I still need to call my brothers and let them know.  I have gotten more support, caring and understanding from all of you, that I decided to let you know first. I dread those phone calls, because I am still angry at all of them for not being more a part of is life. He worked so hard, sometimes 3 jobs, all of his life to give us everything we ever wanted or needed. He raised 11 children, not many can say that, and we never wanted for anything. He is truly a good man.

I am feeling such an emptiness in my heart already, but I know I still have to grab every moment I have left with him. I need to tell him how much I Love him, and how very proud I am whenever I speak of him. I will always be a Daddy's girl at heart.

I will write again later after I make these phone calls and after we tell Dad the results.

Lisa

((((LISA))))   God bless you for being such a good daughter and take comfort in the fact that your dad's last days/hours/minutes with you are all the more comforting with you there.  Know too that your grief is a sign of how much you love your dad.  As far as your siblings, try to clear your slate, you will feel better for it.  How they are behaving and reacting is their problem to have and to fix, and if they don't they will be the ones who have to live with the guilt.  Get over the anger, it's not worth it, trust me.  Anger wastes too much energy and you need that energy for your dad and for you.  Dedicate yourself to making sure that you, your dad and your mom have the most wonderful time together possible.  Talk about old times, even if he seems to have "checked out", he will still hear you.  Count every minute you have with each other as a gift and a blessing.

Fill that emptiness with the good memories, trust me, your heart will be full.  As my son and I constantly tell each other, we will ALWAYS be in each other's hearts no matter what.  It doesn't matter if your 10 or 30 or 80.

Dear Lisa,

I am so sorry to hear about your dear father.  I understand so well how this feels and I also relate to some of the anger issues that you have been feeling.  Trust me - your Dad does know just how much you love him.  After all, you are there for him now aren't you?

I think that for now you just have to take the lead from your Dad as to how he wants you all to behave around him.  My Dad couldn't cope with my tears, he told me that they didn't help him, just made things worse.  Sometimes it was just impossible to stop the tears from flowing however I tried very hard not to cry anywhere near him.  I understand your restlessness, it sounds as though you are not sleeping very well, of course that is understandable.  I regulary wake at 5am (it is 5:30am here now) and I don't think that I have slept properly since my Dad was diagnosed.  I am sure that you are cherishing every moment that you have with your Dad and it sounds as though you are fighting hard to be strong for him.  It is the most immensly difficult and testing time, I know.  If you haven't been there you just don't understand.

You will never lose your Dad's immense love for you.  Even though my Dad is no longer here in person I feel his love surrounding me and I always know at any given situation what he would say and do.  He is always there with me.  I am half of him and when I look in the mirror his big brown eyes are looking back at me. 

Lisa, I feel for you, this is just so so hard.  Give yourself time, do not feel any pressure to behave in any other way then you feel is natural for you.  Cry, get angry, depressed, all those emotions are perfectly valid.  It sounds as though you have a good relationship with your mother, I hope that you can be there for each other now, to have support must make all the difference.

We are here for you,
love Jules

Dear Lisa,
Your father sounds like such an amazing person - I'm glad to have kinda "met" him through this board. His dark sense of humor sounds just like the humor we have in my family - my mother retained it until about a week before she passed, it's not something everyone understands! But you do, and you're right to try to keep joking. But it's also okay if you cry a little in front of him - he'll understand. Just be yourself and he will be happy with you no matter what you do. He loves you unconditionally, after all.

I know you are treasuring every moment with him and my heart breaks with you. I hope you can keep your dad's spirits up - and yours.

-Joyce

Joyce,

You are so correct when you say people do not understand my Dad. I haven't even begun to describe his ways. He is amazing and liked by all who meet him, however, we get the looks like, WHO is this man, how can he joke about these things. That is my Dad I tell them, I can't explain him, I just know him.

I am going to treasure every moment I have with him, and take him into my heart so that his spirit fills my emptiness. I will always have his stories to tell people, even if they don't quite understand.

Thanks for caring, and I am sure I will be writing plenty about him in the days and weeks ahead. I will certainly need the support and a place to vent.

Hugs Lisa

dear Lisa,  i feel queasy just thinking about you and your breaking heart.  you and your dad know how wonderful and fortunate you both are to share so much love and respect for one another. .... the deeper the love the deeper the pain.

when i wrote some time back expressing my concern for your well-being, it was because my  oldest daughter had become ill and our family believes it has a lot to do with stress.  she's still ill and none of the doctors are quite sure what is wrong.  so-o-o-o, that was/is my concern for you, especially now.

i have never experienced the love for parents as you have, so i don't know how you feel, but like everyone else has stated, i send my love, hugs, cyber-kisses, and support to give you strength as you travel through this chapter of your life.

i am fairly certain, this has brought back many memories you experienced during your mom's illness and passing when you were a teenager.  talk about the trials of Job...

sending you love, barb h

Hey Lisa,
That was a beautiful story about the patient with cirrhosis - you really did make a difference in this world, and that's an amazing thing. So wonderful that you did so much for so many people, now for your father, and that you'd like to be involved in hospice. I really admire that.

And I just wanted to say I know you have feel about the veterinary field -- one of my best friends became a vet, and I watched as she became more and more cynical and uncaring about the animals she was in charge of and it sickened me. She started her own vet practice and loved to say that if she could do it over again she would be a physician because they actually get to make money. I believe that doctor training -- whether for human doctors or animals -- stresses the omnipotence of the doctor and doesn't stress the empathy aspect as much as it should, and as a result we have the incredible arrogance and insensitivity of many physicians and vets.  Once she got her Ph.D, my friend became so insufferably arrogant and acted like she was superior in some way because of her schooling (I had just as much schooling, just never got a PhD, but who cares?) I really don't deal with her anymore - especially after she told me she participated in a clinical trial where she injected cats with feline leukemia just so she could record every painful detail of how they died. I'm someone who is allergic to every animal yet I still have a cat and used to have a dog - my whole family is allergic but we're willing to sacrifice. My sister and I are also vegetarians because of this, so you can see how much we love animals. On the positive side, I also have a friend who became a vet later in life and she absolutely does EVERYTHING in her power for her patients. She had a dachshund with paralyzed back legs and she fashioned a little skateboard for him and he drags himself around very well and he's a very very happy little dog.

Okay, now I'm rambling and off the subject too! Glad to hear your dad is keeping his sense of humor and I hope your experience with hospice is as good as mine was. Other than one nurse that was insensitive (so I fired her from my mother's case), we got such compassionate and personal care from hospice and I donated money to them afterward in appreciation of all their kindness and caring.

And of course you know more about taking care of your dad than they do! No matter how good they are, you're the main caretaker and hopefully they'll respect that.

Best of luck - hope your father's spirit continues to be positive.

(As another personal note of my own, today was very difficult, as my sister and I went to the cemetery with my mother's cremains to finally get them interred in the family plot. My mother never wanted anything done with her remains, as she thought they were unimportant, but the box of her ashes has been sitting on my desk for months and my sister and I finally realized that we wanted a real home for those ashes. It's not for my mom, who wouldn't have cared, but it's for US - so we have someplace to visit on her birthday and Mother's Day. I never thought it was important, but it's funny how those little rituals take on meaning once something happens to you.  It was a grueling day and my eyes are so swollen from crying and I have a migraine. Enough of my pity party!!!)
Joyce

Hi Barb,

I do indeed remember your post awhile back. I remember your concern for my well being and health. I am doing okay. I am not sleeping well, but will take a cat nap during the day of I feel the need.

I am so sorry your Daughter is having medical issues that they cannot pinpoint. Stress does play a huge role in our health and well being and it affects us in all different ways. What kind of symptoms is she having, and for how long has she been sick?
You don't have to talk about it, I am just curious. When I am under stress, its first comes out and attacks my skin. I develop rashes everywhere, actually I guess its like eczema, and gets so bad I can't use my hands, The itching is uncontrolable, and when the tiny blisters break the swelling starts. Then the stomach issues start, which affect my appetite. The hardest thing to deal with is the restlessness, I am so tired, but when I lay down to go to sleep, my mind won't shut down. I have never taken anything to try and help with that, and now I would be afraid too, as I listen for every little noise that my parents make. Same thing you do when you have a baby in the house.

I appreciate all your caring and concern and all you say is true. If I didn't have the love I do for Dad, then I wouldn't feel the pain I do. Losing Dad to cancer is stirring up some bad memories for me, and it scares me to think he will become as ill as my Mom did in the end. She suffered tremendously and the pain was never controlled, but there are much better pain meds today than there was all those years ago.
It is also sad that you never felt the love some of us have for our parents, but it does happen that way under different circumstances. Everyones journey in life is unique, and we all do not have good experiences along our travels.

I hope they find out what is wrong with your Daughter soon, please keep me updated.

Many Hugs and Thoughts go out Your Way,
Love Lisa

Hi Lisa,

Catching up on the board and it feels like yesterday, reading your posts. It was these days last year that my Dad was diagnosed. A few days before, I found out by an accidental (and inappropriate) admission from a receptionist at his primary physician's office. I will never forget that moment, it was like a knife entering my heart and it felt that all the light had instantly disappeared from my life.  But, things were not conclusive, and as we had to wait for more tests to confirm, I didn't say anything to my Dad at that time... giving him his last weekend living in the land of innocence which he would soon depart from.

I'm glad that hospice is now a part of your dad's care team- glad in the sense that he will be getting compassionate care from those who know how to do so, but sad in the sense that this is the next step. 

I recall when they first admitted my Dad to the hospital for a transfusion, they put him in oncology/ palliative care and it was important to me to know which was intended for him... if it was oncology, he had options; if it was palliative, he did not.  They told me that this was just what the department was called... which fed my denial.  I also recall the last two weeks of my Dad's life when they moved him into a private room, I guess on the floor it was known as the "death room" because that was where they moved people at the very end stage of their disease.

My heart ached knowing my Dad would be the next person in that room. I fought for an air bed for him because his skin was so sensitive that the very sheets he was on caused him pain. That caused me a great deal of heart ache- to know what was happening to him; knowing he couldn't eat or drink... and something as simple as lying down was painful... it felt so unjust and I couldn't fathom a god who would allow this to happen to such a loving soul as my Dad. 

There was a day that I went to one of the doctors and said "I know this is a stupid question, but we have no hope of reversing this, do we?" They obviously said no.  I suppose I had to ask the question... looking back it was denial... what did I expect... that my question would all of a sudden inspire an idea that no one thought of and that my Dad could be saved?

I remember praying so much, saying the rosary, researching all the saints I could think of who were known to assist in these types of circumstances.  I was trying everything because conventional medicine was not an option.  When I finally resigned myself to what was happening there was the biggest feeling of defeat and failure to help my Dad that is indescribable.

I now look back at the support my mom and I gave him and I am proud and I find comfort in the comfort we gave to him.  My mother often will say that it wasn't enough and I let her know that He had the both of us at His side and that is the most loving way someone can leave this earth. 

The days are so dark and cold here right now... recalling those days last year at this time... memory is cruel at times allowing you to feel the exact emotion, somewhat lessened by time, but the feelings forever recorded in every cell of your being.

Recalling those dark, dark, black days last year and how we would try to extract every spec of light to brighten my Dad's days... I know how you must be feeling and I send prayers of strength to you, your mom and your dear dad.  As painful as this is, it is your finest hour as well for it allows you to demonstrate to your dad what you have felt from him. Your story of helping the patient with cirrhosis touched me and I know beyond a shadow of a doubt that your compassionate heart and loving care will be a balm to soothe your dad's spirits.  He and your mom are very lucky to have you as their daughter and you are lucky as well to be priveledged to help your dad in this stage of his life.  I may have had my religious beliefs shaken, but my belief that life goes on is stronger now than ever and because of that I believe that your biological mom and your sister are also sending their support and comforting you and your dad as well.

Thoughts and prayers your way,

love,
Missing U

Hi CDR- thank you for your response.  I do feel that my Dad is always with me, his influence continues to be a positive force in my life. Amazing how one person who lived his life unencumbered by a lot of the trivialities that I at one point entertained... amazing how he modestly has become my example of how to live and how to love.  I feel him in my heart every second.  I am priveledge to be his daughter and I am honoured that I was with him in his final moments, just as he was with his own Dad. 

It is a common thread that we share. Hearing him tell the story of being with his Dad at the end always made my heart swell with pride and love for him. I wanted to do the same for him if the time came, but to be honest, I could never even utter the word about my parents, so I never thought I'd have the courage.  I can't even put into words how connected I felt to my Dad during those days... we were always close, but when life is stripped to the bare necessities and there is nothing left but love, you feel that connection as the prime reason you are here.

I feel that I am lucky to have met my guardian angel and to have known him for almost 40 years.  I believe beyond a shadow of a doubt that we will reunite again and I now want to live and demonstrate the kindness that he showed every day of his life. I imagine meeting him that day and telling him how I was able to do so many good things in his honour and him being happy that I was able to find and do good despite a heavy heart and as always, he continues to lighten my heart.

Thank you for induldging me in my great pleasure of sharing my Dad.

Brightest Blessings to you on your journey,

Missing U

Hi Missing U,

I will be posting replies with updates tonight. I just have been really overwhelmed with all thats going on.

Hugs Lisa