Topic: Difficult subject, sorry...

I know this will be difficult for some, but I want to ask the following........
For anyone here who has experience of a loved one dying from this cancer, I would like to have an idea of what to expect, for my own sake, and for my Mum. In an ideal world, we all want our loved ones to pass peacefully and with as little suffering as possible. Mum has decided that she will not take any further treatment of any kind, apart from palliative care. She hopes of course to suffer as little as possible. I have been told by UK Cancerbackup that in 9 out of 10 case, it will be a slow decline.What can we expect?
Again, sorry for asking this, but who else to ask?
With love and thanks.

Re: Difficult subject, sorry...

Kate - My thoughts are definitely with you during this time.  Going through the slow decline was definitely one of the most difficult journeys in my life. 

This is only my perspective, and the patient was young (31).  The decline was slow - many doctors/nurses/hospice all said the same thing: the process took so long because she was young.  After 6 months of chemo, she was slated to have a resection back in May '06.  However, they found that she had fatty liver and called off the surgery.  (I believe fatty liver is common for her chemo)  The doctors opted to reroute the blood flow to her liver, hoping concentrating the blood flow on the healthy part would reverse the fatty liver.   We waited approximately 4-5 weeks for the next scheduled resection.  During this time, she was completely without chemo, and the pain started to intensify.  The fluid in her extremities also began to accumulate.

In June, she went in for her second attempt at resection - this time the surgeon opened her up and saw the cancer had metastesized to the abdomen.  They closed her up and eventually sent her home.  She then began a second, chemo regime. 

During this time, the pain lessened, but never went away.  And she was always bloated.  The doctors put her on diuretics, which seemed to help.

Around late September/early October, her body became weak, causing her to miss out on chemo treatments.  They gave her a blood transfusion and magnesium treatments, which worked briefly.  A week later, the scans showed that her second chemo regime was not working, and the tumors were spreading.  At this point, the ascities had begun to set in.  (I can't recall when it first started, but it was definitely there in September - she looked about 5 months pregant at one point)  The oncologist opted to restart her original chemo regime (the one she was on prior to the attempted surgeries) in mid-October.   She was borderline for the chemo, but they opted to proceed.  She completed her infusion at the hospital, but was not able to complete the infusion from home.  She became extremely disoriented, confused, and weak.  She went into the hospital for what was essentially dehydration and kidney failure.  She was there for 8 days while the doctors slowly rehydrated her, and the kidney function increased.  This is the first time they started draining her abdomen.  During this hospital stay, we would chat with her every time she was awake.  Only towards the end of the stay did she become lucid.  She did not remember anything past the chemo treatment.

Early November, she went back for one day of physical therapy, but then decided that she was in too much pain to fight any longer.  She knew the outcome would not change regardless of what she did, and she was too tired and in too much pain to go on.  I'm not going to lie - the pain was unbarable at the end.  From the day she verbally told her husband that she was done seeking treatment (November 3rd), it took her body almost two weeks to shut down.  And during that two weeks, she did not receive any food, and only liquids on the first two days.  After that, we just watched as the body slowly shut down.  At this point her body had accumulated so much water in the abdomen that I think it was able to survive for so long without any fluids.  Those two weeks were painful to watch - she moaned non-stop until the last day.  Her breathing would fluctuate between extreme labor, and ease.  The hospice nurses kept telling us that she was not in pain, but her expression on her face indicated otherwise.  She was never comfortable.  Sometime around November 7th, the bile started coming out her nose.  It was small and runny at first, and easily suctioned.  By the end, it was extremely thick, an would clog up the suction devices as we tried to clear her airways.  Over that 2 week period, the fluid slowly came off her body, and the urine product dwindled significantly.  Her face, arms, hands, and feet finally started to look normal again.

On November 15th, she finally found peace.  It was the only day when she was quiet, and appeared restful.  That evening, she took her last breath.  Something that nobody told me, and I found rather shocking to stumble upon, is that she would be extremely yellow once the blood flow stopped.  She had been jaundiced before, but I was not prepared for the color after she passed away.

Something the hospice nurse shared with us that you may find helpful: you look for three things to coincide: (1) the patient stops eating, (2) stop drinking, and (3) urine production stops.  When all three coincide, the patient generally has about 3 days left.  This ended up being true in our case.  I'm sure it's not absolute - but it did give all of us something to focus upon while we were waiting.

My best to you, Kate.

30-something caregiver

Re: Difficult subject, sorry...

Hi Kate,
I admire your Mom's strength, wisdom, and faith.  I have personally been involved with the dying and death of 3 very close friends that had cancer.  Although different familys and individuals and circumstances; most common was dealing with the emotional part.  I would recommend going to a web site( www.dyingwell.com ). Dr. Ira Byock, MD  provides lots of information and different senerios as well as recommendation of who to get involved.  I have found it to be very informative and helpful.  As you read through some of his information you'll see clearly what to expect and what your role as a caregiver and loving daughter can be.  Love, talking, and touch will be a few good pointers as well as when to let Mom know it's it's okay.  Just asking the question Quoted by Dr. Byock puts you half way there of how to deal with this end of life reality that we all must face eventually. 
God Bless you and your Mom.
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Difficult subject, sorry...

I have been collecting case studies of people with gall bladder and bile duct cancers.  Several have passed away, but their loved ones have expressed interest in sharing their experiences.  Send me an email and ask any questions you have, and I will forward it to them.

Woodyb@cox.net

Re: Difficult subject, sorry...

Thanks for your good wishes Jeff!
And thank you Sara, for the details, which do make rather grim reading, but it is good to know other peoples experiences........don't think I'll share that one with Mum though!
Woody, I will email you!
Thank you again, everyone!
By the way, we saw our local GP today, and he is making a referal for Mum to UCH in London. Hopefully Mum will be seen within 2 weeks, all being well, for a second opinion.