Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

Hi cdr,
Forgot to say that your posts are great and thanks for sharing from the perspective of the patient - it's really helpful and you have a great attitude! Hope you're feeling somewhat better - go out there and blog some more!
-Joyce

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

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

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

Hi Joyce and Missing U,

Thanks again for your support and caring. As of this morning, we know nothing else. We are still hoping to get the complete results somstime today. Mom spoke to the Primary Physicians office with the hopes that since the oncologist now has the results, that the hospital can now fax them to the Primary as they would be mailing them out anyways.

Dad has not changed, still eating and drinking little and vomiting. The pain is still under control for the most part, except he says he feels it a little in his back. I am wondering if the bone cancer is in his spine or rib cage causing alot of his discomfort or is it steming from his liver.

He was up for a little bit last night, and was still joking. He told me that he can come back from his grave and haunt me. I tried to joke back, as hard as it is, and told him that if he had anything to say to me , he better say it now. I told him he does not have permission to speak to me from beyond the grave. Of course when I came downstairs, I had a breakdown. He is starting to talk to me about his death, and I am having trouble dealing with it. I like the fact that I can stay in denial, yet seem very hopeful to the rest of the family and to him.

I now wait for word once again today, and also wait for him to get out of bed for a little while so that I can visit with him.

I will write again later, when I know more.


Thanks for all the good thoughts and prayers,
Lisa

I will give him some mental hugs from the both of you......

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

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

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

Oh Lisa, I am so sorry! I dearly hope you and your mom get the support you need in this nightmarish time, and that your dad is at peace because he's with his loving family for the time he has left.  The three of you are so lucky to have each other. I wish you peace - write anytime you feel the urge. So sorry.
Joyce

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

((((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.

107 (edited by Lisa Ann Wed, 17 Oct 2007 20:39:10)

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

Hi Joyce and CDR,

I am still very restless, and can't stop the crying. I guess it is better that I get this out of my system, before I have to face Dad. He is still not awake, so he still does not know. I have made my phone calls and talked to my older brother for over an hour. We took a little trip down memory lane, and it was actually comforting. He is 5 years older than me, so he remembers things about my Dad and me, that I was to little to know. He says I was the light in Daddy's eyes when I was born, because he wanted a little girl, especially after having the 2 boys.

I can only hope that he knows how much I love him, I guess I am just feeling a little insecure right now. I just want to grab him and hold onto him tight and not let go. I won't do that of course, because I have to be strong like him, but I sure do feel like doing it.

I know I am lucky to have him, and will make the best of the time I have with him. We always talk about old times, in fact thats all Dad talks about, he is such a story teller.
CDR, you are right I need to let go of the anger, I am waisting to much energy on it. I will also dedicate myself to making sure we have the most wonderful time together as possible.
Joyce,I am sure we will get the support we need. Mom and I are supporting each other, and some of my siblings are there if I need them.
I am only able to support her and be strong, because I have all of you to pull me through this time in my life. I am sure I am going to need to talk and vent about things that I can not say to no others.

Mom told Dad a little bit ago, and all he could say was that he didn't want a colostomy bag. Mom told him that surgery wasn't even an option, and he just started joking again. Not sure if he quite understands everything, He will have questions tomorrow. The name of the game will be to just keep joking back with him, because thats what he wants. No crying, no serious talks, just normal everyday conversation.

I will write again tomorrow and let you know how we all are doing.

Lisa

108 (edited by jules Wed, 17 Oct 2007 21:45:09)

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

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

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

Dear Lisa I feel so much of your pain.
Be who you are, this I feel is what your dad would wish for you to be.
These are his memories of you and will give him the comfort he needs. My wish for you is that you and your mom will be able to comfort each other during this awful time.
This board is a very special place to be, you are loved and whatever emtions you are feeling are accepted, we  too have had them all.

These memories will sustain you in time to come write away we are all here for you.
As jules so apptly wrote if you havn't been there you do not understand.
I wish you comfort and peace during these awful times love and light Alan's mom xxxxxxxxxxxx

U.K.Member

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

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

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

Hi Jules,

Thanks for all your understanding. I know you know how I feel as the loss of your Dad is so very recent. I too will have the strength you have to go on with him always in my heart and always in my mind. I have been down this road before with my biological Mother, but I was only 15 yrs old. I watched over her and took care of her while she suffered for over a year. She was a 6 year Breast Cancer survivor, and it came back and took over her body. Lung Cancer, Bone Cancer and then she finally slipped into a coma and passed away. I lost alot of my teenage years, and had to become a Mom for my brothers and sister and had to take charge of the household through her illness. All Mom ever wanted was to see us grow and become what we were destined to become. She never had that opportunity, nor was she here when we needed her the most in our lives. Dad has had that opportunity, and for that I am thankful, however I am still not ready to let him go.

I am taking the lead from Dad, thats why I have to be so strong. He like yours, doesn't want the tears and the sadness around him, he cannot deal with that. So I have to put my suit of armour on and be a tough girl. As he would say, put on your tough girl pants and deal with it.

Thanks for being here for me, I know how incredibly hard it must be for you also.

Love Lisa

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

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

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

Hi Teresa,

Thanks for you heart felt wishes and comfort during this time. I know how special everyone is on this board and I know everyone has felt all the feelings and emotions I am feeling today. Although I cannot completely feel your pain, as I have never lost one of my children, I understand what the loss must be like from a Mother's love. You carry that special bundle underneath your heart for 9 months and bring them into the world, nurture and love them unconditionally. Alan would be so proud of you for keeping him alive through helping other people deal with losses and all the sadness and emotion thats goes along with grieving.

Mom and I are comforting one another, although, we are each losing Dad in a different way. She is losing a husband and partner and I, a Father and my Hero. In the end our losses will be the same, because we both love him in our own special ways some the same, some very different. All in all, he is truly loved.

Love and Much Light to you Also,
Lisa

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

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

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

Hello My Support Team,

Today was a hard day full of reality for me. I had told myself many times this day would come sooner than later. We met with the hospice nurse who will be managing Dad's Case (I hate those words). I just can't help but feel that in this day and age, at some point everyone is just a number. I guess its also because I do not want anyone else to care for my Dad, know one knows him like we do. He is a special kind of character that does not fit into the norm. Dad was in good spirits, joking as usual, and actually asked me to make him a pizza after the two hour visit. He signed all the paperwork and everything is in place. Seems as though he can stay awake much longer during the day when he is stimulated. I told him that I would have to get a cattle prod, get him out of bed, and then occupy his mind. He told me I was fired from caring for him. I just have to laugh.

Everything that was explained to us was nothing new to me. I worked for many years with people in a nursing home setting very similar to hospice. I was always there for my patients up until the very end. I was there to comfort them and hold thier hand as they took thier last breath. Most had no families, or families that just placed them and never looked back. I unlike most, had a special place in my heart to take the most difficult of patients that nobody wanted to give the time of day to.

One of my first lessons in caring for people was not to treat them any differently than I would want to be treated myself. I can remember a very young man who was diagnosed with end stage cirrhosis of the liver. I could not imagine dying of this disease at 34 years old. All I could think of was that he did this to himself, he was  turned away by his family, and sent here to die. Why should I feel any differently than his own Mother and Sister, they believed this is what he gets, this is the consequence you pay when you abuse your body. He drank a case of beer daily along with a fifth of vodka for many years. How could you do that to yourself I kept asking myself as I read over his paperwork.

The day he was admitted I wanted nothing to do with him. I was angered and didn't feel sorry for him. I helped admit him and get him set up in his room and comfortable.
I left at the end of my shift that day, and he was all I could think about. How afraid and alone he must be, to know your are dying, and your own family has turned you away. When I returned to work the following day, I had a much different outlook on things. I realized  that this too was a disease.  He could not help himself and this was the ultimate price he would have to pay. From that day on, I made a special place in my heart for him. I would spend my days off with him, I purchased a TV for him and would bring him in the daily newspaper and puzzles everyday. We became friends, and I was there for him. When he was in pain, I would fight to make certain that his pain was controlled and that he was comfortable. I can remember calling the Doctor's and telling them he needed something else, the pain and ascites in his abdomen was getting increasingly worse. I was told, he is dying, there is nothing more we can do for him. I fought and I fought hard to make them understand that this was a human being, that did not deserve to suffer this way. There had to be something else.
I was told to take precautions, always gown up and wear gloves and a mask when going in to do anything with him. I could never have done that to him, that would just be isolating him even more. I knew that when his death was near he would begin to bleed from every orifice in his body, and there was a high risk of contracting hepatitis or HIV. I still could not bring myself to do this.

When the end was near, I was there with him, holding his hand and telling him how much he would be missed. He was indeed a special person, for he taught me the true meaning of caring. I was not wearing a yellow big bird gown(thats what I called Isolation gowns), a mask or gloves. I was in my street cloths, as it was my day off.
I helped to calm him, and when the time came I told him he could let go. I can only hope he knew how much I cared, and that he taught me a much needed lesson in life.
His family was called, and never came. I spent the next hour cleaning him and preparing his body for his journey home.

After that, I always took the time to take those specail cases that nobody wanted. I was finally injured on the job, caring for a very combative, abused elderly woman. She managed to tear my rotator cuff and all the tendons and ligaments in my shoulder. I required surgery to repair the damage, and was told that I could never lift more than 10lbs with my left arm, They had to remove 2 inches of bone and all the bursa sacks etc. I never returned to the field, and later went on to becoming a veterinary technician and hospital manager.

I left my job weeks before Dad was diagnosed, because of my morals. The veterinary field is changing , its all about the almighty dollar, than actually caring for all the creatures big and small. They say everything happens for a reason, and mine obviously was so that I could be here for and with Dad.

I believe that now, I will be looking to re-enter the medical field once again, so that I can take care of all those special people and thier families. I am actually going to persue something in the line of hospice care.

I am sorry, I guess I have babbled long enough. I am still very restless, and my parents are both sleeping now, and I can't relax.

I will write again tomorrow.

Lisa

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

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

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

Oh Joyce,

I am sorry you had such a difficult day and it had to bring all of your sadness back to the surface once again. My Dad feels the same as your Mom, his remains are just ashes, no need to do anything with them. He speaks of those damm ashes so often though, I would have to do something with them. As you said, not for him, but for US.
He has decided that he wants them buried here on our property, and somehow I take great comfort in that. I can still place a memorial stone, plant a tree, a bench, or do whatever I want to mark his special place, but at least I have a place to visit him when I want. You and your sister did what was necessary in your hearts and minds, and I think that helps with the healing process. As hard as it was on you today, you are one step further along in your grieving process. Now you do have a place to go to, sit and talk to her, and celebrate those Birthday's, Mother's days and so on.

I think your Mom must be a great deal like my Dad in many ways, and possibly the reason you and I have met one another on this forum. We can always be here to talk of the good and bad times we hold so dear in our hearts, and that keeps them alive. I am sure you have many many memories to share, as will I. I sometimes think that most people move on and stop talking about thier loved ones, but I somehow disagree. We know people die everyday, its part of life, but if we don't talk about them, its as if they never existed.

As you can see, I can talk the good talk, but when I get to that point in time, I will feel no different than you do now. When I see Dad in good spirits with his pain under control, like today, I go back into denial mode. I know reality could slap me right in the face again tomorrow, but I like to hide in the denial stage. It lifts my spirits, so I can stay strong for him. I know the whole eating, drinking thing with Dad is not good, and thats what his body needs to do as part of the process, but as long as he is having some good days, I am staying positive.

As for the Doctor/Veterinarian topic, you hit it on the nail. Thats where I had an issue with my morals. I had heard for the last time, I am charging all I can, because thats what I went to school for, to make money. I actually worked with one Veterinarian that when I asked him why he became a Vet, he answered, so I could cut them apart and see how they work. He actually hated dogs and didn't hide the fact. As far as I am concerned, if you lose your compassion for the animals and the owners, go get a job at Burger King. Human Doctor's are no different. I see so many people becoming nurses, because the income is so good, but thats the only reason they are doing it. I have real issues with that, and I could write for days venting about that one, so I better stop.

I hope I have a good experience with Hospice too, but I know I will fire someone that I feel has one of those attitudes. This is my Dad, and he deserves the best care possible. They are on an as needed basis right now, with a weekly visit that is required.
They will have all his medication here by tomorrow, and offered to get anything else we needed. His blood pressure was good, which I find a little strange, since he has been really high, and not taking his meds for that all the time. The Nurse told us not to worry if he doesn't take any of his other meds, lets just concentrate on the pain control and nausea issues. We are going to try the compazine in a gel form that gets put on his skin just like applying lotion, I had no idea that was even available. I am hoping that helps some. We are also going to try Decadron to decrease some inflammation and also help with his appetite. I guess we will see.

I hope that when you read this post, you are feeling better, and a little more at peace.

Take Care of yourself,
Lisa

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

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

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

all I can say is that you are all so beautiful and your parents are so lucky to have you in your lives.  As a patient I can tell you that knowing that my family felt the same way you all do would be the most wonderful and comforting thing in the world.  I know this is hard for you as it is on my family, but you do make a difference.

120 (edited by Missing U Sat, 20 Oct 2007 07:46:49)

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

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

121 (edited by thecdr Sat, 20 Oct 2007 08:27:51)

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

Missing U

Thank you for such a beautiful heartfelt post, it brought tears to my eyes and made my heart swell.  How lucky your father was to have you!  Remember, he will ALWAYS be in your heart and you will ALWAYS be in his.  How wonderful to have another guardian angel watching out for you!

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

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

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

Lisa,

i replied to your message in the "experiences" section as JeffG had requested.

thank you,
barb h

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

Hi Missing U,

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

Hugs Lisa

Re: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

Missing U,
I replied to your post in the experiences sectionas we were asked to do.

Lisa