My Dad gone but never forgotten

My heart aches for each and every one of you~
This CC thing is the most vicious disease I have ever had to deal with. We’ve had family members die from different types of cancer – but they at least had a little time. From what I’m hearing it just seems to come from nowhere. Some folks don’t even have symptoms? It’s all just crazy!
My brother was diagnosed 9/3/09. Today – we are thrilled that he was able to eat a cup of ice-cream (spiked with ensure).
This past week has been a roller coaster no one ever wants to ride.
I pray that all of you and your loved ones beat the **** out of this CC! (Sorry)
Sometimes it just frustrates me so!

Prayers and healing thoughts to all,

Sandy

Thank you, Lainy. You are such a blessing in all of our lives.

Jolene

Katie,

I wish I had the ability to take away your pain, but the truth is, to this day I am haunted by the questions, frustration and, frankly, the anger. I truly do emphathize with you. Just yesterday, I had such a dark afternoon missing him so immensely and frustrated because I still want and need answers. I am constantly second-guessing every decision that I made on dad’s behalf. I worry that I will make some judgement error for my mom or brother (Mom has advanced Parkinson’s Disease and my brother has Cerebral Palsy-I am caregiver for mom, and guardian of my brother)

I think because the majority of us have lost our loved ones so quickly after diagnosis, that we barely had time to wrap our minds around this horrible word-cholangiocarcinoma, prepare our questions, find sympathetic medical care, prepare for the worst and so on. After the whirlwind is over we are left with such mind-blowing grief and horror, it takes all we have to just simply…breathe. I was guilt-ridden because I could breathe, my life-loving father no longer breathed.

I was my dad’s caregiver for 4 years. He did have diabetes so I managed his homecare and went to his medical appointments, etc. We had no indication that he had CC. (That is one of my many unanswered questions: he had quarterly lab tests, quarterly x-rays of kidneys and liver, etc…why didn’t anything show up?) Dad was diagnosed 6 months before he died. And believe it or not, we had to fight to get that diagnosis. We had such a horrific time prior to obtaining information…and my dad had great healthcare coverage! Just uncooperative medical opportunities. I won’t go into the struggle my family went through…I’ve mentioned it before on this wonderfully supportive panel, and on my dad’s caringbridge website.

If I could ever offer any advice, it would be this: keep returning to this website, this life-saving panel. I come here when the unanswered questions surface, and I get what I need from the others. I need to hear from Lainy, Marion, Kris, Darla, Patty…everyone on this panel-to keep me focused, grounded, breathing. Only these wonderful people in this ‘club no one wants to join’ can truly understand each other.

Oh, Katie…I hope that you are able to find your answers. Your father must have been such a wonderful man for you to grieve so. The more passionate the love, the deeper the grief. My dad told us everyday that he loved us…sometimes several times a day…it didn’t matter that we are adults, he made sure we heard it.

I believe that your dad is with you, watching over all of you- proudly and lovingly. Preparing to greet you when your earthly journey is complete. Until that time, take care of your husband, your children and your mother as your dad expects you to. But mostly, love yourself as he loves you, be happy as he wants you to be…and sometimes, give yourself the hug that he would give you.

Please let me know how you are doing. And feel free to e-mail me if you choose to. I would like to know how your mom is doing. I’m sure it is difficult for you with her being so far away. I can tell that you are such a loving daughter. How lucky your children and husband are to have you in their lives. Such character is obviously a gift from your loving dad.

Peace to you and yours, and many hugs from Northern Minnesota!!!
Jolene

If you think of it: could you send along a prayer? My dad’s birthday is this weekend, and I’m missing his craziness! Dad felt that our birthdays were equivalent to national holidays. Very big in his eyes. For his birthday, he would send out daily e-mail announcements to each of us beginning 2 weeks before the event as reminders. White cake with white frosting. Shrimp at the restuarant…and, (gasp) POLKA MUSIC!!!

I am so very sorry for your loss. Our dads live forever in our hearts, and as old as we become, we never stop being a ‘daddy’s girl’. I pray that you will find some comfort in each other, and peace in your loving memories. Until you are able to smile again, we travel this journey with you.

I lost my beloved ‘daddy’ a year ago. I miss him deeply each day, but I see him in my brother’s smile, my nephew’s pranks, and another brother’s eyes.
Our legend is gone, but his legacy lives on.

As you hold each other in mourning, may God wrap you all in his peace.

Jolene