1. < Cancer: Managing Symptoms

Choosing palliative care; what is your experience?

Posted by jobli0 @jobli0, Jul 22 8:36am

I would like to hear from or about other people who have chosen palliative care rather than cancer treatment. I would like to know the age of the patient. I am an 86 year old woman who has rejected treatment for adenocarcinoma sigmoid colon, metastasized to my liver. I have done a fair amount of genealogy and for fifty years I claimed that “everyone in my family dies of heart attacks and strokes.” Mother Nature made a liar out of me! I rejected radiation and chemotherapy because I have had a decent 86 years and choose to end my years without the potential discomfort generally associated with those treatments and surgery was not an option.

I have numerous co-morbidities which I have survived for about five or six years. I will be balancing the elimination of anticoagulants without which I will be in danger of having a stroke against taking anticoagulants and be in greater danger of bleeding again. I had a colonoscopy in June to determine the source of blood loss and then started much heavier bleeding from my colon until my hemoglobin was 6.4. I was unaware of what was happening as my children and the hospital staff determined that I should be released to hospice. Three units of blood and the bleeding stopped so that when I arrived at home I was greatly rejuvenated and declined hospice. I have no pain but I do realize what may be in my future: either colon blockage or future bleeding are possibilities. What else?

I came to Mayo Clinic Connect sections on congestive heart failure, chronic kidney disease, central sleep apnea, and neuropathy. I didn’t expect to add cancer, but here I am. What was your experience? What am I facing? Thank you. Best wishes for everyone who is traveling this road.

Interested in more discussions like this? Go to the Cancer: Managing Symptoms Support Group.

babse | @babse | Jul 31 7:17pm
In reply to @babse "Hi there, I am 76 with advanced MS. My lesions are all In my brain so..." + (show)
@babse

Hi there, I am 76 with advanced MS. My lesions are all
In my brain so I walk. However, I have incapacitating pain with no support system and frontal lobe lesions. I had palliative care— a visit once a month by two nurses to regulate my pain and medicine. The main nurse quit her job so now I have no one. I miss the chance to see faces. I rarely go outside. I. have multiple symptoms including restless leg with seizures and can only sleep about four hours a night. I did like palliative care. I do not see a neurologist due to shortage and my not traveling I have choking and swallowing issues and invontimence. Etc

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Thanks to each of you.
You rekindled my passion
For writing ‘!

REPLY
asutton0144 | @asutton0144 | Aug 10 6:21am
In reply to @jobli0 "I hope to reach other people who have chosen palliative care rather than cancer treatment. I..." + (show)
@jobli0

I hope to reach other people who have chosen palliative care rather than cancer treatment. I appreciate those who have commented and sent hugs, which really touched me. I would like to hear about the experiences of those who rejected treatment. Thank you all.

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I too have chosen Palliative Care instead of surgery / treatments.
Praying for you and ALL of us going through down this unforgiving road.

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2 replies
jobli0 | @jobli0 | Aug 10 8:24am
In reply to @asutton0144 "I too have chosen Palliative Care instead of surgery / treatments. Praying for you and ALL..." + (show)
@asutton0144

I too have chosen Palliative Care instead of surgery / treatments.
Praying for you and ALL of us going through down this unforgiving road.

Jump to this post

asutton,
Would you want to share your experience, your age, your situation?

I left the hospital on June 10th after receiving three units of blood. Two months later I know I have limited time on this planet, but I am feeling great with no pain. I am trying to do some writing for my children, sharing memoies of my childhood and family stories such as my great grandmother dying from an "allergic reaction to chokecherries and milk" when my grandfather was an infant. I remember being chased by a rooster pecking at my legs and being too small to get the kitchen door open. I have accessed some online newspapers from the eighteen hundreds which are interesting, having grown up in rural Red River Valley of the North between Minnesota and North Dakota.

I am the last living descendent of my grandparents on both sides so I have no one to compare memories. I felt quite lonely when my last sibling died a few years ago.

I still drive at 86 and sometimes take a 93 year old friend to appointments.

asutton, how are you doing? What stage is your cancer, if you care to share your situation? I hope these last months for everyone reading this can be joyful and and as full as possibe. Peace.

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2 replies
Mentor
Miriam, Volunteer Mentor | @mir123 | Aug 10 9:29am
In reply to @jobli0 "asutton, Would you want to share your experience, your age, your situation? I left the hospital..." + (show)
@jobli0

asutton,
Would you want to share your experience, your age, your situation?

I left the hospital on June 10th after receiving three units of blood. Two months later I know I have limited time on this planet, but I am feeling great with no pain. I am trying to do some writing for my children, sharing memoies of my childhood and family stories such as my great grandmother dying from an "allergic reaction to chokecherries and milk" when my grandfather was an infant. I remember being chased by a rooster pecking at my legs and being too small to get the kitchen door open. I have accessed some online newspapers from the eighteen hundreds which are interesting, having grown up in rural Red River Valley of the North between Minnesota and North Dakota.

I am the last living descendent of my grandparents on both sides so I have no one to compare memories. I felt quite lonely when my last sibling died a few years ago.

I still drive at 86 and sometimes take a 93 year old friend to appointments.

asutton, how are you doing? What stage is your cancer, if you care to share your situation? I hope these last months for everyone reading this can be joyful and and as full as possibe. Peace.

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I love hearing the memories you've been writing down!

REPLY
asutton0144 | @asutton0144 | Aug 10 10:42am
In reply to @jobli0 "asutton, Would you want to share your experience, your age, your situation? I left the hospital..." + (show)
@jobli0

asutton,
Would you want to share your experience, your age, your situation?

I left the hospital on June 10th after receiving three units of blood. Two months later I know I have limited time on this planet, but I am feeling great with no pain. I am trying to do some writing for my children, sharing memoies of my childhood and family stories such as my great grandmother dying from an "allergic reaction to chokecherries and milk" when my grandfather was an infant. I remember being chased by a rooster pecking at my legs and being too small to get the kitchen door open. I have accessed some online newspapers from the eighteen hundreds which are interesting, having grown up in rural Red River Valley of the North between Minnesota and North Dakota.

I am the last living descendent of my grandparents on both sides so I have no one to compare memories. I felt quite lonely when my last sibling died a few years ago.

I still drive at 86 and sometimes take a 93 year old friend to appointments.

asutton, how are you doing? What stage is your cancer, if you care to share your situation? I hope these last months for everyone reading this can be joyful and and as full as possibe. Peace.

Jump to this post

Good Morning
Except for a tooth ache I feel great!
I’m stage 2 pancreatic cancer on the head, I have Lupus and Fibromyalgia. I’ve been on my own since I was 12 years old after years of physical and sexual abuse. I graduated from high school, have an Associate degree in Business and was working on my Bachelor’s when I had a TIA ( mini stroke) in 2013.
I haven’t had really bad stomach pains but the intensity is amplifying!
I’ve had 1 MRI and scheduled for another in 2 weeks.
No bowel movements and no appetite / HORRIBLE pain under my right breast is what caused me to go ER.

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1 reply
jobli0 | @jobli0 | Aug 10 11:45am
In reply to @asutton0144 "Good Morning Except for a tooth ache I feel great! I’m stage 2 pancreatic cancer on..." + (show)
@asutton0144

Good Morning
Except for a tooth ache I feel great!
I’m stage 2 pancreatic cancer on the head, I have Lupus and Fibromyalgia. I’ve been on my own since I was 12 years old after years of physical and sexual abuse. I graduated from high school, have an Associate degree in Business and was working on my Bachelor’s when I had a TIA ( mini stroke) in 2013.
I haven’t had really bad stomach pains but the intensity is amplifying!
I’ve had 1 MRI and scheduled for another in 2 weeks.
No bowel movements and no appetite / HORRIBLE pain under my right breast is what caused me to go ER.

Jump to this post

I'm sorry you are experiencing so much pain. You sound quite young to have had such personal trauma. I hope you have a support system - friends, rather than family. please reach out to others, to me, if you wish. You will be in my thoughts as we face our personal journeys. Stay in touch. Love and peace.

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1 reply
asutton0144 | @asutton0144 | Aug 10 1:21pm
In reply to @jobli0 "I'm sorry you are experiencing so much pain. You sound quite young to have had such..." + (show)
@jobli0

I'm sorry you are experiencing so much pain. You sound quite young to have had such personal trauma. I hope you have a support system - friends, rather than family. please reach out to others, to me, if you wish. You will be in my thoughts as we face our personal journeys. Stay in touch. Love and peace.

Jump to this post

Thank you …. GOD placed an AWESOME team of love in my life! Only a FEW are family
Now HE’S given me you
Have a great evening my Sunshine 💜

REPLY
1 reply
Robin | @loveisblind | Aug 10 4:34pm
In reply to @asutton0144 "Thank you …. GOD placed an AWESOME team of love in my life! Only a FEW..." + (show)
@asutton0144

Thank you …. GOD placed an AWESOME team of love in my life! Only a FEW are family
Now HE’S given me you
Have a great evening my Sunshine 💜

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It was terrible they never got me out of pain so I live with cancer and
pain all day and night

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1 reply
jobli0 | @jobli0 | Aug 11 9:07am
In reply to @loveisblind "It was terrible they never got me out of pain so I live with cancer and..." + (show)
@loveisblind

It was terrible they never got me out of pain so I live with cancer and
pain all day and night

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I am sorry to hear that you are in so much pain. Do you have a primary care provider you can talk with? A family member or friend who can contact medical people?

REPLY
babse | @babse | Aug 11 1:26pm
In reply to @asutton0144 "I too have chosen Palliative Care instead of surgery / treatments. Praying for you and ALL..." + (show)
@asutton0144

I too have chosen Palliative Care instead of surgery / treatments.
Praying for you and ALL of us going through down this unforgiving road.

Jump to this post

I had palliative care for
pain with MS. We have
no support groups here and I liked the support palliative cares provided. There were not enough nurses after munchies moved son my GP took over writing the prescription. I do not have a neurilogist. Only one here I was sad to lose my palliative care.

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