My Dad and questions
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Dear Libeco, please accept my sincere Prayers and Sympathies to your family.
Your Father, through your memories
Will never leave you.
You will feel his tender care from now on
As a warm serenity in your heart.
Hoping you always feel the encouragement
Of his love, and hold in memory
All the happy times you spent together.TY all for great support and advice. Dad passed around 2 months after diagnosis. After my last post things just went so fast it became a blur. We all did try to keep him company and talk when we could with him. Tried to stay on top of what to expect from this website, hospice nurses, and cancer societies. We enjoyed an amazing day when he seemed nearly normal minus the strength.
Best wishes and prayers for all your loved ones and yourselves.
Helo Libeco….in additon to the great advise alredy given, this link addresses the wound issues:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=31023
Best wishes,
MarionLibeco,
As far as redness, my dad had two external drains and a feeding tube line for months and there are times they do look a little more angry and red than others. It seemed to me if they get tugged at or clothing irritates the opening the wound looked angry. They sell special 4×4 that are cut specifically for being over drain lines. I changed them once or twice a day, depending on what they looked like. Alcohol wipes and a wound cleaner (if they Dr. allows) also seemed to keep things moving. If you notice a smell or change in color of the area, I would call the Doctor. If you don’t like the nurse, ask for a new one. Unless your parents live in the middle of nowhere, there is another nurse out there. Find one that you trust, as she may well become a daily visitor.
Like Lainy said, chemo at too low of a level seems pointless. It can still cause side effects and likely has absolutely no value. Some people get spot radiation if it spreads to the bones. I think there is some value there, as the most likely side effect of that is fatigue.
As far as nutrition, I would let your dad lead the way. Fix favorites, enjoy what he can and put your worries aside. If Boost or Ensure or a banana shake seems to give an energy boost, great!
If your dad is not ready for hospice, a palliative care specialist may be willing to coordinate pain control and any treatment you seek. My dad is not ready for hospice, but sometimes managing nurses and appts. and continuing care is overwhelming.
Stacey
Dear Libeco. The redness can come from the irritation of the bile itself. It is highly irritating. There is a salve/cream that can beout under the adhesive and it really helps. Ask thenurse about the name.
#2 That was a tough decision for my Teddy to make. He was 78 and he was offered the same thing for palliative care and decided no chemo of any kind. He didn’t want to spend what time he had left being sick from chemo. He opted for a little more quality. On a personal note I don’t think I would put any of my family through chemo at 88.
#3 All is normal for where he is at. If you are not consider calling Home Hospice in (which I think would help a lot) you can go to Hospice on line and they have a wealth of information.
#4 When getting to the end don’t worry about eating. I will not matter and may drive you all crazy. Just spend the time malng some happy memories. Have you talked to hospice yet?
And just a suggestion be careful when people post, mmmmm, kind of talking like doctors. They really just want to help but we have only wonderful lay people on our Board. All are kind of practicing gut medicine. We are new to this CC and it is new to all of us. If you decide you are rady for Hospice your doctor will set it all up. Good luck and make some good memories!
Hi Libeco,
I’m so sorry you had to find us, I understand what you are going through. My
Mum also had a bypass surgery along with metal stents and it worked for almost 2.5 years.. For about 6 months she had an external drain so I do have some information on how to handle external drains. Coming to your questions:1. External drains are def more prone to infections which lead to cholangitis (bile duct inflammation due to infection) but then keeping the area dry and clean really helps. My advice for you is to keep checking the dressing to see if it’s wet and gooey, if it is then get it changed as often as required by a qualified nurse. I do think it’s better to have a nurse who’s got some experience with external drains, etc. Also I learnt to change the dressing and sort of clean up the area myself. I don’t know about any redness near the area, I don’t think it’s a cause of concern but do check with the doctor.
2. Chemotherapy at low doses is not recommended since it won’t be effective, that’s what my doctor told me. Also if he has high jaundice chemotherapy is not suggested at all. He’s 88 and I can’t say how he would be able to take any side effects of chemotherapy as well.
3. The end stage is very difficult to say, for my mum she had high jaundice, ascites ( fluid collection in her abdomen and legs) and she stRted feeling very tired, didn’t eat much, slowly became immobile and then lost her consciousness. Basically these are symptoms of end stage liver disease, I can’t say exactly about your dad because it’s different for each person.
4. Cherish every second you have with him, talk to him about all the good things, make him laugh and feel better and that you are there for him. The one comfort they will get is seeing loved ones around them happy with their lives, and being by their side.
I wish you and your dad, mum all the best!
Varun
I am fairly new to this site and have many questions, sorry for length.
Brief background
My Dad, 88, diagnosed with CC after Thanksgiving and given 2 months to 2 years. It started in bile duct and is now large tumor in liver blocking bile duct. Internal bypass drainage (sorry don’t have accurate medical terms) did not work and he uses a bile bag. The tumor is unresectable. He had severe pain and jaundice which prompted the diagnosis. He has been home for a week – now the questions.1. The visiting nurse took a week to actual come and teach my mom how to change the dressing. There was bile drainage on original bandage by the end of that week causing some irritation and redness – hopefully not start of an infection. The next day mom noticed it being more redness and called the nurse who did come. But stated that that redness was normal after procedure condition and you only have to worry if there is puss etc. Question 1 – should we be worried about redness and/or quality of nurses?
2. Dad’s treatment will be pallative care and oncologists while at hospital stated low dose chemotherapy for comfort care and to try to slow the pace down. Question 2 – does any one have experience with this type of care?
3. He has pain at times, is hardly eating, bounces from depression (can’t blame him) to being little bit more himself, much weaker and sleeps on and off throughout the day due to unability to sleep through the night. Question 3 – what are others experience from day of diagnosis to end stage, is this close to advance stages? (I am trying to read this wonderful site, but balancing work, family, and traveling to visit not alot of excess time – as I am sure most of you all know).
4. Question 4 – any tips to help lift someone’s spirits to eat more and enjoy the time left depsite the diagnosis and fatigue?
Thank you in advance for any help – I feel so bad for not being able to help my mom everyday or even weekly.
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