1 (edited by pearlie0201 Thu, 03 May 2012 08:19:08)

Topic: New to site - Lost my Beloved Dad - Ft. Worth, Texas

This is my first post.  I lost my beloved dad to cc on 3/30/2012.  It is still surreal to me that he is actually gone.  Forgive me for being longwinded.  Dad starting feeling bad 08/2011, a trip to the ER resulted in his gallbladder being removed.  That helped for about 2 weeks.  He then had a stone removed from his bile duct and a stent placed in the pancreas (ERCP).  Another trip to the
ER day before Thanksgiving 2011, his pain was unbearable,  he was then diagnosed (for the first time) with liver cancer.  He then visited a oncologist and had a IR biopsy (no results - necrotic tissue).  He then had a laprascopic biopsy done by a surgical oncologist (no results - necrotic tissue). He was told by the surgical oncologist that he had hepatitis.  No cancer for the first time, he continued to decline and feel HORRIBLE/HORRIBLE.  He then visited a top gastro guy, who determined it was not hepatitis and he felt it was CANCER.  (2nd time it was cancer).  He was then referred to a liver/pancreas specialist (surgeon), he was then told it was cancer (cc).  It is now Feb 2012, and has lost over 50 pounds and is living off frosted flakes and little else.  The diarrhea was horrible and explosive.  He ends up in the hospital with spesis (sic).  Which I now know is part of cc.  The ER doctor advises how close he was to death.  He bounces back and looks good, he then goes to rehab to regain some strength so that maybe he can withstand treatment for the cc (whatever the treatment is that the doctors FINALLY decide to do).  It's a Tuesday 3/20 and the specialist says its NOT CANCER (2nd time its not).  The pathologist cannot find cancer in the biopsy slides.  He then visits the 7th doctor (3/23/2012), who tells that it is in fact cancer - cc (3rd time it is CANCER).  My dad is failing again.  I have taken my dad to every appointment and been by his side every step.  It is at this point on 3/23/2012, that I come unglued and expressed to doctor "Can you not tell he is suffering and needs to be admitted and you (doctors) need to figure out something".   He is admitted and on 3/24/2012 an internal medicine doctor says it is cc and there is nothing they can do for him, and hospice to control the pain is the best course. He enters inpatient hospice ON 03/25/2012, to get the pain managed (which his pain was left unchecked for the last 8 months - they had him on Tramadol, which did NOTHING). To wrap this up, the Hospice nurses at Vitas - Baylor - Ft. Worth are Angels on earth.  They explained everything, and got the  pain managed, and let Mother Nature take over.  My Beloved Dad "PoP" passed at 6:34am on Friday - 3/30/2012.  This is a horrific disease.  I just don't understand why in a major metropolitian area my father could not be diagnosed and treated, or at the very least be given pain meds to make him comfortable.  I was/am ignorant to how effective certain types of pain meds are.  Peace, Prayers, Love and Patience to all.

Re: New to site - Lost my Beloved Dad - Ft. Worth, Texas

Pearlie0201,

I am so sorry to hear of your dad's experience and his passing.  Unfortunately it is a story too often heard on this site.   CC is a very unpredictable disease and often hard to discover and diagnois. 

My heart goes out to you and your family for what you have experienced and the pain and grief of your loss.  Yes, it is horrific, but try to take some comfort in knowing that your dad is now at peace and no longer suffering or in pain.

My thoughts and prayers are with you at this sad and trying time.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: New to site - Lost my Beloved Dad - Ft. Worth, Texas

I'm truly sorry for your loss. I agree, it's a horrific disease. I'm glad your Dad lived his final days in the care of the hospice team. My husband died just under 4 months ago and I am full of anger about many aspects of his diagnosis and care (though he was only ill for one month) but I will be eternally grateful that he spent his last 6 days in the loving tender care of the hospice staff. They are, as you say, angels.

Deb x

"The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares." [Henri Nouwen]

Re: New to site - Lost my Beloved Dad - Ft. Worth, Texas

Dear Pearlie,

Welcome to the site. I am so very sorry to hear about your dad's passing and also what he had to go through. That is not right and I can only imagine what you both went through with all of this. I also lost my dad to this horrific disease back in 2009 and I can so feel your pain here.

Darla and Deb are very right when they talk about this disease being so hard to actually and accurately diagnose sometime, but I know that that will not make things easier for you here. When one of our loved ones is suffereing from something, we want to know there and then what the cause of it is and what can be done to deal with that. I so hope that over time, many advances will be made in not only treating this disease but also in the abilities of doctors to accurately diagnose it. That is what we all want and are fighting for.

My dad also spent his last few weeks in a hospice here in the UK, and I have nothing but great things to say about the care that he recieved there. Nothing was too much trouble for the nurses there and they did everything possible to keep my dad comfortable during that time. And for that we will always be so grateful for. We know your pain, and please know that we are here for you.

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.