elainew

My husband, Gary, received Social Security Disability through the Compassionate Act. He applied more than a year after his diagnosis and he had been working parttime up to that point. Because he was no longer able to work, his application was processed immediately, the date of eligibility was determined to be the first visit he ever made to our ER with jaundice. He was paid retroactively…I believe minus the 5 month required waiting period. Eventhough his diagnosis was CC it was never questioned that he was included as part of this act (possibly because liver/pancreatic cancers are listed and he had Whipple surgery?). I believe part of our success with SS was the extremely compassionate gentleman who handled Gary’s case. He went out of his way to advise us and to obtain the information needed from Gary’s employer. I hope this is helpful.

Hi! My husband had difficulty with testicle swelling from being in a hospital bed for long periods. Much like they elevate your legs to prevent swelling, they would fold up a washcloth and elevate his testicles…one of the rather uncomfortable side effects that goes along with all this. We did have some laughs over it though!! Good luck and I hope u get good news soon.

Lainy,

The news we’ve all expected but have been dreading to hear. I’m so very sorry, Lainy, but take comfort in knowing you were there 100% for Teddy. Gary also passed after 3 nights in hospice, and the end was something you never forget…awful but awesome. Just think of all the other CC victims who greeted Teddy at the gates! The pain and suffering is over, you will get through this by your strength and memories. My thoughts and prayer are always with you…you’re my CC “sister”. Elaine

Kimmie,
My husband died one year ago and I have been tremendously uplifted by some of the books I have read or listened to while in the car. 90 Minutes In Heaven by Don Piper was extraordinary! I wish I had discovered it before Gary passed away so he could have read it also. The first few chapters are the real heart of the book – they describe the author’s vision of heaven. It was such a comfort to me! I also like anything written by Max Lucado and Joyce Meyer. You don’t have to be a religious person to gain hope, perspective and optimism from them.
Getting used to the fact that everyone else goes about their business while your world is shattered is one of the most difficult emotions I faced. It does get better with time. A bereavement group or counselor(and possibly some medication) helps as well. Good luck…wishing you peace of mind. Elaine

That was beautiful to read, Lainy, and I can tell you from experience that the memories you’re creating now WILL carry you through later. Being at peace with your situation and the knowledge that you fought as hard as you did TOGETHER will give you the strength and attitude that will allow you to continue on as Teddy WANTS you to. I’m still praying daily for a gentle end for Teddy and for a calming peace for you. You’re helping to keep my wonderful memories of Gary alive!
Elaine

Hi Lainy,

Gosh, this is a tough one to try to address…what’s good for one family may not be in the best interests of another. I would hate to influence you in any particular direction, but I’ll relate our experience and you can take it for what it’s worth.

While in the hospital being treated for fluid in the lungs (totally unaware at first that it was cancerous),our oncologist informed us Gary had weeks to live. He had been fighting cc for 2 years and we were still hopeful there was something out there for him. So…the decision had to be made – did he want to go home from the hospital with Hospice care or go directly into a Hospice unit. Since we were in a winter rental condo(FL) far removed from our permanent home, the decision was relatively easy to make. Gary polled the room (me, Gary’s brother and his wife, and himself) urging us all to be very honest. We all agreed a Hospice unit would be best. I was afraid of what was going to happen and how I would handle it at home alone…and Gary, as his usual wonderful self, wanted whatever was best for me. The option of driving or flying to SC was off the table by then because of Gary’s weakened condition.

So he was transferred to a local Hospice center that very night. BEST decision we could have made!! It was wonderful from the very first second we arrived. They made Gary feel like he was the king of the world..they were totally, 100% there to meet his needs. I can’t even explain the courtesy, respect, tenderness and excellent medical care that was shown to my husband. The staff went out of their way to speak to each family member as they all started to converge on the unit..reassuring, answering questions, seeing to our comfort, extending emotional support. They were able to almost precisely predict how and when the end would come and encouraged family members to travel sooner than later. They ministered to Gary with such dignity that we were all in awe of the process of his body shutting down (I know that sounds odd and gruesome, but that just goes to show you how amazing they were!). Gary passed away 5 days after entering Hospice. The entire experience was absolutely awful and awesome at the same time. We had those days to entirely devote to Gary (and to each other) and had no worries about anything medical…which was a huge relief. We were with Gary every minute, without distractions, and were left with no regrets of whether we had done the right thing.

Lainy and Teddy, I’m not trying to persuade you to do things the way we chose…certainly you being in your own home with family close by makes a huge difference in what you will decide to do. Gary was not going to pass away in his own home no matter what. The only issue I can really address is the medical presence to the end. That was a wonderful blessing that worked for us.

My thoughts and prayers are truly with you everyday. You two have been our heroes from the day we first found cc.org. Take care, laugh and pray together. Elaine

Heather,

My husband had his Whipple at Duke. We live 3 hours away (Conway, SC) so did chemo and radiation locally but returned to Duke many, many times for follow up care, infections, further surgery, etc. His surgeon was Dr. Doug Tyler. Duke is a wonderful place and very up-to-date in the treatment of bile duct cancer. If you would like any additional info on Duke, please don’t hesitate to ask or to contact me personally. My thoughts and prayers are with you. Elaine