1

(5 replies, posted in Members' Cafe)

Ahhh yes Katie,

Good for you, for facing your denial. It is so difficult. I lost my dad in August and I have not yet been back to where he lived. I will go back at Christmas and I am sure it will be very difficult. I am sure your mom was so pleased to have you visit. It is so important, your Dad appreciates that you are caring for your mom also.

It's wonderful that you were able to enjoy every minute of that cruise! You have to. It is those times of relaxation, happiness that remind us that we are alive and we have every opportunity to enjoy this life even without our loved ones eh?

You take care now,

Ashlea

2

(13 replies, posted in General Discussion)

Agh! Sandy...Im so very sorry. I have not been on since September 11 when I responded to your first post. I went to find what you wrote recently and had that gut wrenching feeling as soon as I found your posts. It happened too quickly. I cannot control my tears, this is a sad sad situation. No words will make it better. Unfair is right. But Sandy, you and your family will bounce back. And your brother will be so proud of you. I will be praying for you. You are not alone! Ashlea

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(19 replies, posted in In Remembrance)

Dearest Amy,

I followed your story and one thing I know--you made sure you soaked up every minute of time you had with your mom! Life was just too fragile for you to not. Hold on to those good memories of her. She was wonderful wasn't she. When you feel sad, allow yourself to really feel that emotion. I pray family and friends would be a source of strength during this most difficult time.

Blessings
Ashlea

4

(11 replies, posted in Introductions!)

Dear Sandy,

Thank you for coming here and asking questions. You do need answers. Keep pushing the Dr.'s for more information, never give up. I am so sorry to hear how quickly all of this came up. This disease is unpredictable and it is different for everyone. Your family is in my prayers. You sound like a wonderful sister that would do anything for her brother! This is a difficult journey and I am sorry you have to endure it.

Warm thoughts and prayers coming your way,

Ashlea

5

(7 replies, posted in Introductions!)

Hello MelissaAnn,

Welcome! These people here are wonderful and I'm sure you will be welcomed with a bevy of support and information. This is a cruel disease and it sucks to have to join this club, but there was nothing like having these experts to bounce things off of in my most difficult of days. Kris is correct in suggesting Ensure or any type of protein shake to ensure she is getting her caloric intake. Anything like popsicles, smoothies might be more attractive to her. You can always throw some protein powder into a shake with flax or anything else that would be healthy for her.

Regarding the sleeping, Kris is also right in that your grandmother has a lot on her mind and perhaps it is anxiety or depression that is keeping her awake. I would definitely speak to her doctor to see what she needs to help her sleep.

As far as her diagnosis, many people on this site would recommend a second, even third opinion! 6 months to 2 years is quite the range. Have they talked about treatment options with your grandmother? Is there a possibility of operating?

This site is wonderful. I suggest you read, read, read and you will find lots of knowledge on how to best care for your grandmother at this time. Feel free to ask all the questions you need!

Blessings,

Ashlea

Today was 2 weeks since Daddy went Home. I was so lucky that Dad left me a letter for me to read after he passed. He did his best to explain why he was so distant and absent from my life during those formative years. He explained that it was difficult for him to see me go grow up, what was a natural progression for me, for him felt as though I was being torn from him. He was so sensitive and since my mom and him had a rocky relationship all those years he thought that here was his little girl who would love him unconditionally. And I did. That darling baby smiling back at him never to disagree or get upset with him. But then he watched me grow up (from jumping onto that school bus at 6 without a care in the world, to starting competitive figure skating, then moving many miles away to go to University) and it hurt him so much so that he pulled away more and more until he sat in the background of my life. In his eyes, I didn't need him and so he drank to numb the pain. Then after I left home, Dad got sober. He came around and we started to develop a relationship around the time I got married just 3 years ago.

I found out in April 2009 that my husband and I were expecting our first child. This overjoyed Dad to think that he could have a second chance with his grandchild. He would tell his doctor "You get to call me gramps soon!" I lost the baby June 28th. Dad really took that hard. He was hurt for me and just plain hurt that it would not be and that he would not hold his grandchild. I think that day we found out that our baby was in Heaven a large part of Dad yearned to be there too. After that I heard from him over the phone less and less. On my birthday on July 14th I knew the time was close. I never got a call from him, so I called. He tried to be brave for me and sing me Happy Birthday, but his little girl knows when her daddy is not okay. I was on the plane to see him the very next day. On July 31st Dad went Home. I find comfort in knowing that Dad has met our little baby and did get to hold him or her after all.

The funeral was bearable. My brother and I organized it as more of a celebration of dad's life. Dad was a true example of how God can redeem a person's life. An example of forgiveness, redemption, unconditional love. I said a tribute to dad--a sort of thank you for all of the little joys that he had given to me that I loved so much about him. I was never daddy's little princess in my younger years, but as a budding young woman I had become his everything and I soaked in it. Like he said in the letter, I was his rock as he battled this cancer. Wow, what a privilege it was. Dad's name is "Ted" and at the funeral I carried around the "Teddy" that we brought for him to the hospice the last few days of his life. He passed away with the teddy under his arm. Tonight I can't sleep and I squeeze that teddy because the pain is so unbearable.

I play over and over in my head the last weeks of his life. It had been almost 3 months since I saw him last and I replay my reaction to seeing him over and over in my head. I had always been so strong for him, never to shed a tear. But I just held his face next to mine and cried saying "I can't hold it in anymore, I just love you so much" He held both my hands in his as we connected for a few minutes. It was the closest I have ever been with him in my life. Looking into those eyes of his and telling him how glad I was to be there, how I came as soon as I could. I wish I could go back there now.

I have really attempted to be gracious with myself, but there are times when it is not easy. Dad put my brother and I in charge of his care and making the tough decisions. My brother was often absent from the hospital during those last days. From sedation, to liquids, to pain medication I tried my best to do what I thought was ultimately best for Dad. But I still play it over in my head and wonder if I should have sedated sooner, or not at all. If I should have said more when I had the chance. Was telling him how proud of him and how much I love him enough? Did he truly KNOW it? Was I convincing? He told me in the letter that he lived for those moments we watched the news together when I was a teenager, when I sun tanned and he sat on the back porch and made me laugh, when we sat by the lake in August and we counted the 70-something windmills on the distant island across. Did he know that I too lived for those moments? Until I was living just to hear his heart beat that last night. Until I couldn't anymore, and he was free.

Dad was severely agitated and fearful at the end and I wish I could relive those days and it be more peaceful. I didn't know that after watching him go through agony for 3 days that he would quickly slip away to be gone from me forever, hours later.

I tell myself "Ashlea, it's irrelevant now--He is in a better place, free from pain." But I still obsess. I told myself after every visit that if it were the last I would be okay with that for I had made the most of every second. But I still want more visits--to hold his hand, touch his face, watch his favorite t.v. shows with him. I told him that it was okay to let go---that mom and us kids would be okay. I know all of this is true, that I will be okay, but I don't feel okay. I feel this terrible void and sadness. I try to remember happy times--better times, but it is a battle in my head. The last days stick so clearly in my mind. I had a dream the other night of those last days that was treacherous. I never want to go through that dream again. I wonder if he knew I saw in the room with him when he passed. I was out of the room moments prior. I can't remember if I told him I was back. Did he know that he was not alone?

I knew I needed some guidance so I picked up the book "glimpses of heaven" and it seems to bring me some peace until I think "well Dad never spoke of seeing angels, Dad never died with a smile on his face--so how do I know it was peaceful? Because he didn't die screaming. Yes, of course this is where my faith comes into. I know it was peaceful because God came to take him home--period. But it's still not easy to wrap my mind around everything that has happened. Why can't God give me a sign? A sign that all is well. I try talking to Dad, but it's just not the same. I started to write him a letter and am finding that to be somewhat therapeutic. Are there any books that you found helpful after your loss? Anything that can guide me toward understanding God and his reasoning for this suffering that I am experiencing?

This is the longest post ever---and I still feel like I could keep talking. Not a lot of people understand what I am experiencing. My closest friends and even family don't even bring it up. I don't want to forget my Dad or pretend he never existed. It hurts me when people don't talk about it. It is the biggest part of my life right now. He meant so much to me.

I love you all and thank you for listening and understanding in my greatest time of need.

Ashlea

7

(8 replies, posted in In Remembrance)

Hello All,

At 9:35 pm Friday, July 31st daddy took his last breath. He was surrounded by his daughter and son. I am filled with grief but also thankful that Jesus took him so peacefully. I had left the room for a minute to get some water, but 2 minutes after I returned he took his last breath. It's almost as if he waited until I returned. I am very blessed to have walked down this road with daddy. His passing was exactly a year from the date of his initial diagnosis. He was 50 years old. All too young. It was a hard-fought battle and he won. So much blessing and healing came from this disease and Jesus has the victory. Our great loss is heaven's gain. He will truly be missed. We will remember his kind heart, gentle spirit, loving demeanor and extraordinary gift to inspire laughter.

Ashlea

Hello everyone,

Wow!! After a long day with my daddy it is nice to come home and read all your lovely posts! I feel so much better now. Your support and kind words are so special to me. In my most desperate moment I knew that my family here would be able to relate to my situation. Part of me is still scared, but I do have more peace. I was able to get alone with my dad finally and get some things out that I really needed to say. He was somewhat responsive, and most important is that he can hear it. He is rather agitated, which is really difficult for me because there really is nothing I can do to make things better. I want to make him as comfortable as possible in this time but I'm not sure how. His confusion is also difficult to watch, because then he gets frustrated when he doesn't understand. Sometimes it is really cute, we all revert to little children when our time is near. But while he does cute things, and funny things it still makes me sad. One day at a time I guess...I just need strength from the Lord above. And it helps to know that I am not alone, that people have gone through it, and there really is something so beautiful about death. This is the most difficult time of my life. I can't believe how many life lessons I'm learning. Sometimes I wish God didn't think I was so strong. I don't know...

Love, Ashlea

After receiving a call from my father's GP explaing she only thought he had a couple days I was on the next plane to see my dad! On Friday he was admitted to hospice after only brief talk about it. The oncologist mentioned that they noticed a huge change in him in only a couple days and felt he needed to go into hospice immediately. I was shoked when I walked into that hospital room. I didn't even recognize my daddy! I don't think I can put words on the pain I feel when I look at him, his eyes all sunken in, his neck so tiny. This is not fair anymore! He was doing okay end of April when I saw him last. Now, the confusion is umbearable. I see moments of my old daddy, so cute, so sweet, so bossy and insistant. But I just want all of him back!!! Not just little glimpses. I just feel so helpless. The swelling in his legs is aweful, it just shocked me how huge they are. And when he slips in and out of consciousness, his open mouth is sooo scary. Almost like this death "mask"? I dont even recognize his voice anymore, the voice that was so comforting and pleasant is now raspy. Has anyone experienced with their loved one, this inability to pee? Is that a symptom of the body shutting down? He wants to pee, but he can't. What torture!!! I want the sweet Lord to take him soon, I just can't bear this suffering any longer!! This disease is so terrible I just want to scream!!!! What am I going to do when I lose him? I already feel like my entire world has crumbled around me.

10

(12 replies, posted in General Discussion)

hehehe That's cute!! Good to know. Teddy for teddy bear obviously? Sounds like such a strong strong man!

Next week my dad goes into Hospice. You expect it, but then when it actually happens it's difficult to process. Dad said on the phone he didn't think that he was going to make it much longer. Heartbreaking. He has lost his hearing, another side effect of radiation or liver failure, who knows? The last 2 weeks they have sucked something like 40 litres of fluid out of him. They are putting in a permanent suction. We got the news back from the scan on Monday. Tuesday was my birthday so even when I asked my mom about it she didn't want to tell me for fear that it would upset me too much? Naw, upset me? Im a steel doll these days. I will be visiting him very soon! Smiles through tears for my cholangiocarcinoma family! smile

11

(12 replies, posted in General Discussion)

Thank you everybody

Thank you Marion....I'll figure out what kind and get back to you.

Lainy, I think you are right. Was your hubby's name Ted? My dad's name is Ted. Anyways, I think it is a result of the radiation. It's interesting you say the spots showed up on his back when the radiation was done to the front. My father's radiation was done in his neck where there is a crack as a result of bone mets. and the spots are all over his chest and stomach. Not sure if hes experienced itching from it. He also mentioned something about a large vein popping out on his stomach and after doing some reading i came across varicose veins. It went on to say that one symptom of liver failing is "bleeding of the varicose veins at the lower end of the esophagus and in the stomach lining." I dont want to worry about it too much, just wait to see if the radiation has exacerbated his symptoms.

Hello,

Dad just finished a real nasty week of Radiation. Does anyone know if spotting on the stomach is normal? I am far from my father and so I can only go on what he tells me over the phone. He is not very descriptive. Maybe if anyone can tell me what skin abnormalities are normal with radiation i can probe him more? Or could this be a sign that the liver is failing, and it is the toxins coming out in the skin? They did blood tests this past week because they are certain it is liver failure that is occurring.

13

(12 replies, posted in General Discussion)

It's really difficult keeping track of Dad's meds, because they keep changing his regimen daily.

The latest update is a little more than we bargained for. The cancer is now in his lungs, and his bones (pelvis, spine, 2 ribs, skull, shoulder). As a result, he has a broken rib and is experiencing so much pain! He is having trouble breathing, I don't know if this is a result of the lung cancer, the broken rib? His spleen is enlarged which doesn't seem to be a good thing. I'm not sure really what that means. They are getting him hospice at home now. Hospital bed, help in the morning and night so that is great progress.

I don't really know why I am posting? You expect that this monster will spread and it does. My hope has been that it would stay contained in the liver and if it had to spread JUST NOT THE BONES!! I don't know what to expect now. It seems as though the cancer's movement doubles every 3 months. From the tumor in the liver to mets all over the liver, to the lungs, now to the bones, and each time the tumors grow double in size.

He is on the waitlist for hospice and I am assuming that they will move him in when they see he needs too, just as they agreed to the hospital bed and all that. I just want his pain to be under control. Does anyone know if you can have intravenous at home?

14

(13 replies, posted in Announcements)

This is wonderful news Marion! Thanks for all your help! smile

Dearest Pam,

I am sorry to hear of your mother's passing. You really have been a great encouragement to me through your journey. I am sure you are feeling a lot of grief, though you know your dear mom is in a better place with her King. But you have lost your mother and there is no replacing her. I hope things get better with time. My thoughts and prayers are with you at this time!

Love and hugs,

Ashlea

16

(18 replies, posted in General Discussion)

Hello Kris,

I'm right with ya on this one....BLAH!! You are one real person and I found myself giggling at somethin' sassy you said just a couple days ago!! You have a wonderful sense of humor and I am sure that is what has kept you going and will continue. But it's hard to ignore such bad news when it hits ya smack in the face! I hope that they can figure out a different chemo regimen that will help! I am glad you are feeling and looking great! Although it adds to the confusion of this recent news, I don't think I've read a complaint from you yet so we of course are here for you to yell, scream, cry all you want!

Hugs,

Ashlea

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(18 replies, posted in Grief Management)

Hi Marc,

I am sorry to hear of your mother's passing. You are right, she is at peace now. This is not to say you will not feel the sting of this. Feel free to stick with us through your grieving, you may feel you want to talk still. I hope that you find that every day is a little bit easier to cope. Be kind to yourself.

Many hugs,

Ashlea

18

(5 replies, posted in Grief Management)

Oh Lainy, what a story! Thank you for sharing that with me....

And of course thank you Patsy and Tess for your kind words and support!

19

(12 replies, posted in General Discussion)

Yes, great idea Marion...my dad's regimen changed slightly, but I will be sure to get a list of meds when I am down to see him. I will report back...

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(5 replies, posted in Grief Management)

Dear Friends,

I haven't written much lately, actually I haven't read much either. I feel different lately. I feel like I'm holding out. Next week I finally get a break from my studies, so I am going to fly and visit my dad for 4 precious days. It's been 3 long months since my last visit. I talk with him on web chat or on the phone almost everyday, but this last week not so much. I feel this distancing from his end, but perhaps don't pay too much attention since I'm finishing up my term papers and assignments. While driving in my car yesterday I heard the song "Here Comes Goodbye" by Rascal Flatts for the very first time...I could barely see where I was driving the tears were streaming down so fast. When I got home I found it and listened to it over and over and had a good, long needed cry. Then just this morning I was driving two minutes from my house to grab a coffee and again, a heart wrenching song, "You can Let go now daddy" by Crystal Shawanda. A song I had never heard, and thus the steady flow of tears down my face. WHY ALL OF A SUDDEN? I feel like it's a wake up call or something? I am so excited to see my daddy in less than a week and yet I feel a whole host of emotions all of a sudden, well mostly just sadness (or something like it that I can't explain). I have gotten used to not seeing it, just hearing it, the pain, the 14 hour sleeps, the itching, the sweats, the nausea. Often I felt resentful of those who get to drive the 5 minutes, 30 minutes, an hour to see their mom or dad. But now, I don't know who has it "better"? As if there is such a thing with this monster. Maybe the two situations are just different. Being there all the time, immersed in their pain, or hardly there to help, hug, love, deal with the stages as they come. I want to make my visit a good one! I just feel like the whole world is saying "why are you crying its not like he's dead yet" and I don't want to wait until that dreaded day to write on the remembrance board to share my hurt and pain, when I know my friends here know and understand what this "anticipatory grief" is all about. These songs do give me some peace. In the Rascal Flatts video the father who has died asks the little boy "what is it like?" And the boy responds, "Just like normal goodbyes". (You have to watch it: go to youtube.com and type in the song). That childlike spirit is what I need to survive, to get through this. To know that I WILL see my dad again, doesn't mean I wont feel the sting, but he will be at peace when he passes. And again too, with the other song, it is about me as the daughter one day having to say "you can let go now daddy". And I am okay with that, even though I know it will be the most difficult thing I will ever have to do.

Hugs through tears to all who have had to endure this pain,

Ashlea

21

(12 replies, posted in General Discussion)

Yessss! My daddy has been experiencing this soooo much since his diagnosis in October. Same thing, he has to have 2 or 3 shirts on hand because it is that bad. I also tried searching "night sweats" because I wasnt sure if this was common and wanted to know what to advise for my dad but didn't get many hits. I did come across chills, fever but nothing to the extent of severe night sweats. I think too it has a lot to do with his medications....

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(12 replies, posted in Introductions!)

Hello Daniela and welcome!

I am Canadian as well, from Burlington Ontario living in cold Thunder Bay! I hope that you will ask as many questions as needed while on this bored. No question is a silly one. People here are oh-so-helpful! I imagine you are going to be a great advocate for your friend's mother! Sorry you had to find us, but I assure you you will be happy you did.

Blessings and many hugs from the cold north,

Ashlea

23

(7 replies, posted in Thought for the Day)

Haha rose may, that's cute!! I so too find this site soothing. Sometimes when I dont know what to say or write or think I just watch those clouds slowly moving. It allows me to think "all is going to be okay."

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(26 replies, posted in In Remembrance)

Dear Tess,

I am so sorry for your loss. May you find some peace at this time. I see that you are feeling everything that is natural to feel at this time. my prayer is that you WILL find that time alone with your beloved dad when the time is right, you deserve that much. Know that you are loved.

Hugs through tears,

Ashlea

25

(12 replies, posted in Grief Management)

Dear Pam,

You are beautiful. Keep on holding on. You're family must be so blessed to have you with them at this time.

I am praying for you and your family,

Ashlea