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I am out here. I will be taking time to write and post tonight when all is quiet around here. Lots going on, not enough time .
Jeff and Cdr,
No offense was taken, and I certainly understand the position of a moderator. From now on, when and if I feel the need to post, I will do so under the experiences section.Thanks for explaining that to me. I guess I just followed the lead and when members replied to my posts, I just continued on.
Cdr, I will continue to post, only if it is helping others to read some of the personal stories. I have begun a very short journal to give to my Dad as soon as I can. I figure that way I can let him know how I feel about losing him, and maybe it will bring him some comfort.
Thanks to Both of You,
Thanks for sharing this with all of us. In some way at some point, we all go through most of those emotions.
I would have to think that you are talking specifically about my thread. I know it has gotten long and has alot of personal stories, but that is just what came naturally. I had many members feel compelled to follow my story, and I meant no harm. It was also a way for them to talk about thier experiences and grieving as well.
I will no longer post unless I have a medical question, or need help with some hospice decisions, my e-mail is available for those who want an update or feel the need to talk.
LisaOctober 19, 2007 at 5:52 am in reply to: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin #16677
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 LisaOctober 19, 2007 at 5:25 am in reply to: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin #16675
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,
LisaOctober 19, 2007 at 1:33 am in reply to: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin #16674
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.
Ted and Patty,
My thoughts and prayers go out to the both of you. Continue to cherish all the love that you have for one another, as you will never feel alone. Each day and minute that you have together will be a memory that will go on forever. God will guide you through this most difficult part of your journey.
Hugs and Prayers,
LisaOctober 18, 2007 at 1:37 pm in reply to: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin #16672
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,
LisaOctober 18, 2007 at 1:24 pm in reply to: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin #16671
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 LisaOctober 18, 2007 at 1:18 pm in reply to: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin #16670
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 LisaOctober 18, 2007 at 3:37 am in reply to: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin #16666
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.
LisaOctober 18, 2007 at 12:46 am in reply to: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin #16663
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.
LisaOctober 17, 2007 at 2:14 pm in reply to: My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin #16662
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,
I will give him some mental hugs from the both of you……
I am so sorry to hear that your Mother has been diagnosed with this disease especially after beating Colon Cancer and being a 6 year survivor. How truly devastating this must be for her and all of you.
You have found a great group of people on this forum who are caring and very kowledgable. I am sure you will find the information and support needed to help your Mom.
In the meantime, you and your Mom will be in my thoughts and prayers. My Dad was diagnosed in the begining of September, and it has been a tough road thus far.
Keep a Positive Attitude just like your Mom,