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New to group - Terminally ill father w/ bladder mets

11 years 4 months ago #17302 by cariad
Hi there
I am from the UK, but hopefully things are not too different there. I am a registered Nurse. I work in the Community and I am involved in some Palliative Care.

A basic principle of palliative care is symptom relief, pain and nausea can be and should be relieved. In my experience, even with feeding (is it parenteral nutrition?) there should still be a bowel movement and laxatives are very often required. Many types of analgesia cause constipation, and laxatives should be taken in conjunction with them.

I find it horrifying you are not being given more help from the hospice, push for this, its a basic human right, there are many avenues to explore to alleviate symptoms of nausea and pain.

I wish you luck
Anne Marie

partner of John
Diagnosed april 08
r/c may 08
T4aG3
Trying to take things one day at a time!

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11 years 4 months ago #17254 by fearandfight
Kay I am sorry to hear about the things your father has been through. I am also on pain meds and I take Senna and Colace daily. If I get to the point of after 24 hrs. and no BM I take a dose of milk of magnesium and if push comes to shove I always keep magnesium citrate in the fridge just in case as my last backup and this works for me. Joe ;)

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11 years 4 months ago #17243 by Gene Beane
Kay,
I am sorry for the situation you are in with your dad. My dad opted for no feeding tube, he was given morphine for 6 days and then he passed quitely. Obviously his fight is over, at 116 pounds he has to be weak and has no strength to carry on. My dad went straight to a hospice center, 8 rooms, all private, we stayed with him 24/7, it seems we've come together at a time where we can't be of much help, but we can help by emotionally supporting you at this sad time for you and your family..if he truly wants to go hospice is the thing to do.

This group of doctors have thrown you under the bus sorta speak, its maddening. Was he at a Major Cancer Hospital,,the ones who did his bladder removal, obviously not if they didn't know it was gone...so now what, pain management, with hospice? PALLATIVE CARE?
Either one would work and they would give him control over the pain and the comfort issues.
If he chooses to just end it hospice can do the morphine route, I can tell you from my experience its peaceful, hard to let go, on his side and yours, but his quality of life has been compromised, I pray you will find the answer to the issues at hand...somehow you will be shown the way...Ginger

Hospital Cleveland Clinic r/c Sept.14,2007
Surgeon. Dr Stephen Campbell and Gill
Gene Beane..66 Ford Motor Company
Engineer, retired Vietnam Vet

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11 years 4 months ago #17241 by Julie
Kay, there is a new specialization in oncology called Palliative care. They can work with the current team in finding ways to help alleviate your father's pain. We met with my husband's pain specialist last week and he told us that a nerve block could still help relieve his pain that is caused by his bladder cancer in his ribs. Dick is going to try radiation first.

Yes the Doctor's expect a bowel movement of sorts even when people have not eaten in several days. I had to not eat for 3 days prior to my colectomy and then 3 days after the surgery and the Doctors asked every day if I had a bowel movement. I finally questioned their expectation and they told me that people are shedding cells all the time from the lining of the digestive tract and it should eventually pass.

I will say that morphine shut down my husband's digestive tract to the point that the laxatives and the Enulose would not make things move. He stopped the morphine and lived with the pain as he preferred it to being on morphine. The Fentanyl patch is much better as a combination of stool softener and Senna will keep things moving.

A bowel obstruction would really change what they are able to offer as narcotics would result in more pain for your Dad than the cancer pain.
Ask Hospice what other methods they have for pain relief than narcotics. I hope they can give him some measure of comfort. Julie

Volunteer Coordinator
ABLSC

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11 years 4 months ago #17235 by julieann
In many ways, your story sounds similar to mine. My mother was diagnosed in July 07. Things happened very quickly and we were not at all knowledgeable about bladder cancer. Unfortunately many doctors, including many oncologists, are not very knowledgable about this cancer either. The urologist was the only docotr we had seen prior to the surgery. Very few tests were done. Mom had RC in August.....fast forward......after the surgery, she saw the local oncologist. They fet they had "gotten it all", but thought chemo was a good idea anyway. Mama refused treatment. She was reprimanded by both the oncologist and urologist for choosing the no chemo route. In January, there was spread to lymph nodes. She still opted for no chemo because, like your father, she preferred to try and have quality of life for the time she had left. Back to the doc in April to be once again reprimanded and basically was told to call when the pain begins. I say all this to say: 1) Get a doctor who KNOWS about bladder cancer. Not just any oncologist. 2) Read and find out all you can. 3) Insist that doctors give you all the facts. Our oncologist said "I just don;t like to give bad news. Well, number one, he MIGHT be in the wrong profession. Number two, no one wants to hear bad news either, but you cannot move forward without the cold hard facts. 4) Get copies of all reports (pathology etc) and look up what you don't understand. 5) Do not, do not, do not let the doctors push you around or brush you off. Just because your Dad chose no chemo, does not mean he does not deserve the very best care. That is HIS choice. 6) Ask questions here. Lots of people can and will help. 7) Know that your new forum friends will be keeping you and your family in thoughts and prayers daily.

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11 years 4 months ago #17233 by momof4
Kay,

Also, My husband is on Senokot Natural Laxatives 3 times a day, as well as Glycolax (Miralax) mixed with a drink once a day...He also has a canister of Sunsweet Prunes next to the bed to munch on...This combo has kept his bowels moving...Did they put your father on anything like this when he was using the Narcotics?

Karen

Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.

Life isn't about how to survive the storm, but how to dance in the rain.

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