Topic: Moving toward the journey's end - sensitive

My husband Terry has fought hard for over two years with surgery, radiation and chemo but we have run out of options and are now concetrating on palliative care.  Terry's chemo ended in early October due to rising bilirubin levels.  Although he had many scans and other tests in an effort to identify a way to bypass the blockage of the bile ducts, we learned that the problem was due to compression of the tumors in the liver on the bile ducts and there was no available treatment.  During the past three months, he has had good periods when we were able to get out of the house and to socialize with friends and family as well as more difficult periods.
Last week, however, he became very ill so I took him to the ER.  His bilirubin is now over 13 and is continuing to rise and he is quite jaundiced.  He has experienced increasing confusion and memory loss  that is being treated with laculose.  He has also developed very low blood pressure that becomes worse if he tries to stand and we have been told this cannot be corrected.  His ascites had increased a great deal and were drained twice while in the hospital, giving him a greatly increased level of comfort.  At my request, yesterday they installed a drain so the fluid can be drained in a bottle, thus eliminating the need for further hospital procedures.  A surprising effect of the drainage of the ascites is that his ability to eat seems to have been restored.  For months he has been living on liquid supplements, yogurt etc. As soon as the ascites were drained, he ate a chicken sandwich and he has been eating well ever since.  I wish we had done this earlier.
We think he will be discharged from the hospital today and the plan is to move him to a rehab facility for a week or so.  We are not optimistic that he will benefit much from rehab at this point but it will buy me some time to set up home health care.  I know that many of you have had good experiences with hospice and I may consider it at some point but, based on a previous negative experience with hospice for my mother, I would prefer to avoid it as long as I can.  Fortunately, I will be able to hire caregivers to help me through this process.  We don't have children and there are few family members nearby so I will need some help.
Despite all that is happening to him, my husband refuses to believe he will not recover.  The aide at the hospital told me he said he plans to return to work as soon as he gets better.  It breaks my heart when he says things like this but maybe he needs to retain a little bit of hope to get through this period.
I haven't posted for quite some time but it has helped me to put these thoughts in writing.  This discussion board has been a wonderful resource for us and, once all this is over, I hope to return to doing some advocacy work for the Cholangiocarcinoma Foundation.

Re: Moving toward the journey's end - sensitive

Dearest LindaR -
So sorry that things have gotten to this point for you and your husband. It sounds like both of you have fought a valiant battle.

I am glad you are getting home health involved as they will be able to provide valuable assistance to both of you. Be sure to rely on them for as much as you can. I am sorry that you hospice experience was so bad in the past because I would encourage you to head that direction sooner than later.

I am also glad that you will have caregivers in the home to assist you. It is important at this time for you to spend some time as his wife rather than just his caregiver. Being a caregiver is so tough when you don't have that ability to take a break. I encourage you to take time for yourself even if it's getting in the car and taking a short drive.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Moving toward the journey's end - sensitive

Linda,   

Good to hear from you, but sorry for what you and Terry are now dealing with.  From what you have said, it sounds like you are being very realistic and doing what needs to be done.  Also sounds like Terry has a very good attitude and that is a good thing.  If only believing could make it so, but who knows what the future will bring.  Be it long or short, I'm wishing you the best on this journey that none of us wanted to or planned to be on.   Being cautiously optimistic can't hurt.   As Kris mentioned, take some time to take care of you, too and let us know how things are going.

Thinking of you

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: Moving toward the journey's end - sensitive

Dear Linda, so sorry about Terry but I do have one question about the Jaundice. Does Terry have stents? The Jaundice could be making him more sick. I totally understand about Hospice. Home Hospice was fabulous but at the end I had to take Teddy to a Hospice Facility and they really did us wrong!! I will never forget but the anger has subsided. We are all sending you a ton of prayers and hope that at the least they can take care of the Jaundice. I feel that would help a lot of how he is feeling. Take care and be strong.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Moving toward the journey's end - sensitive

Linda,

I'm so sorry about your husband. My husband also maintained until the end that he would return to work. And, like you, I didn't dispute what he said. For our situation it was the right thing to do and I wouldn't have done differently. It would have broken my husband's heart to think that he was losing his career. There was no reason for him to confront that, along with everything else he was having to face.

I send you heartfelt wishes for strength and comfort in the time ahead of you.

As I've said to others, if you think it's right for you and your husband, a quick video made with your phone of the two of you expressing your love for one another may become a cherished item in the years to come. It has for me.

Take care, Margaret

Re: Moving toward the journey's end - sensitive

Linda,

So sorry to here you and your husband have come to this point.  Glad to hear that the drain gave your husband some relief and that things are being set up for his return home. 

Take care Linda.  Thinking of you.
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Moving toward the journey's end - sensitive

Linda....again, you choose to insist on an intervention benefitting Terry.  This time you requested an external drain for biliary drainage.  Although there is a high risk of infection and that I believe is why physicians like to steer away from it, but given Terry's circumstances, it worked out best.  It warms my heart to know that he is able to enjoy a sandwich which I am sure he much longed for.
Know that we are thinking of you and Terry.
Hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER