Cancer but not treating it

shorthairptr66, I can see why you'd want to avoid the struggle and discomfort especially while you are feeling good. Are you finding that people in your life respect your decision. I was content to have radiation (it was completely painless) but didn't want chemotherapy. Finally I found a doctor at a proton center who agreed to treat me, but everyday I was "encouraged" to agree to chemotherapy. I find your decision brave, and am hoping you have a miracle remission.

@shorthairptr66
I deal with multiple myeloma and end- stage kidney disease. I am on treatment for the MM, and daily dialysis for the kidney issue.

At the start of dialysis, 3 years ago, I made the decision to not move to any other modality of treatment. If this current treatment cannot continue for some reason, dialysis will be stopped. Like you, there is peace and empowerment in this decision.

Being single, have you made your wishes known, and end of life plans? Perhaps a visit with a palliative care nurse, or the social worker at your cancer clinic, to firm up any holes in your plans?

How is your circle of friends and family supporting you? Have you had to unfortunately shut some of them down if they will not cease to try and change your mind? That has been happening in my situation.

This is a powerful topic, and your are brave to take this on, here.
Ginger

shorthairptr66, Bless you. My Mama made the same decision after being so sick and weak from 2 chemo
treatments....she said, "No more". The doctor was not happy with her....with that said, Chemo was all he
could offer her and I think he truly meant it for good. She told him she would take pain medicine, but, she wanted to live and do some things and not be bedridden from Chemo. I so admired Mama's tenacity to fight
and live as long as she could.

Mama had bone cancer....very painful. She lived almost 3 years with no treatments. When she went home to
be with the Lord, I called her oncologist and told him she had passed away. He told me that the average person
with Chemo would only have lived 11 months. God allowed my Mama to enjoy her birthdays, Thanksgivings & her last Christmas with us and see her last grandchild born before she went to her eternal home 3 months later. We even went shopping one day, which she loved!

Please no negative comments about this. I think it has to be everyone's on personal decision. She had heart
issues and was diabetic and had a hiatal hernia repair and could not throw up since that surgery, so Chemo was not a good fit for her. I personally, am glad she changed her mind. We got to enjoy some quality time together
and she got to do some things she enjoyed before the end.

Praying for you and respecting your opinion my friend. Blessings & Prayers....

@shorthairptr66 I certainly don’t think I understand your situation or know what I’d decide if I had the same.

There is a new device just approved for rheumatoid arthritis that might help you for now.
https://www.newscientist.com/article/2490791-vagus-nerve-stimulation-receives-us-approval-to-treat-arthritis/

I'm glad you are getting comments. I can empathize. I've had chronic pain and organ damage from a severe illness when I was 21. I'm now 71! I was able to live a good life, work, and have a family. But the pain management takes a huge amount of energy. I have numerous co-morbities. In my sixties I began to realize that I wouldn't treat the "next" illness aggressively. I have a rare breast cancer that was treated in a moderate fashion--lumpectomy, short course of radiation, and aromatase inhibitors. Rather to my surprise, I feel good and am fine three years later. But I've made it clear to doctors and family I won't treat a recurrence with chemotherapy. However, your pain level is concerning. I have a palliative care doctor I consult with. And my pain management has improved since the breast cancer. Oncology, and in my case nephrology, can be more willing to treat pain effectively than a PCP. Do you feel more can be done for the arthritis? Palliative can be supportive, so I suggest it if you need it. Wishing you all the best.

covidstinks2023:
What a beautiful story about your Mama! And lived to see so much before she passed.
Yes, bone cancer is so so painful. Your Mama did what was exactly right for her.
Knowing this must give you a measure of comfort and peace.
I am so sorry you lost your Mama...but she is at rest and no more pain now.
Think of all your beautiful memories of her.
They will help sustain you. I wish you the very best in your life now.
Blessings.

Ginger--I am touched and inspired to hear how you are doing. I'm interested in the idea of a "quit point" when making decisions...I'll go so far but no further...and it is a powerful decision making tool that has helped me. Thank you!

@shorthairptr66
Last night/early this morning I first responded to you. I was on my phone, and now on my notebook.

Here is a link to a palliative care discussion here on Connect: https://connect.mayoclinic.org/discussion/the-importance-of-comfort-care-palliative-care/ There may be some good information there for you
Also, a discussion about talking frankly about living with advanced cancer may hold some thoughts you can relate to: https://connect.mayoclinic.org/discussion/talking-frankly-about-living-with-advanced-cancer/

If you do not have an advanced directive in place, I encourage that. More importantly, a Physician's Order for Life Sustaining Treatment is a document, actually a portable doctor's order and signed by a Dr, that spells out what you want done if there is an emergency. I keep a copy in my car and at home.

I sincerely hope you don't think I am being to "in your face" about your post. It is because this is a topic dear and near to me, one that has occupied my mind before. So, it would be my honor to support you however I may be able to. Yes, this could have been said in a private message. It is important for all of us who face our situations with courage and strength like you do, to know there are many who will stand with us!
Ginger
Al

Hi,
I admire you for doing what you know is right for you. My husband had lung cancer. He did have a few infusions of both Chemotherapy and Keytruda. The side effects were so bad that he almost died. After that, he refused to have anymore treatments. They weren't happy with his decision. These treatments cost $25,000 per infusion and when he decided to quit them he had just been approved by the insurance company for 10 more months of treatment. He received two infusions per month. However it was his decision. He ate healthy and continued to see the cancer doctor for medications and oxygen. We prayed together a lot also. My husband died last July after living with lung cancer for 14 years.

I wish you the best and will say a prayer for you.
PML

It took some convincing but family and friends understand my decision even though most do not agree with it. You hear someone has cancer and the next thing you talk about is treatment. You never ever hear of a person not wanting to get treatment so I think it's just something they never heard before. I'm like the lockness monster 😂.

I've always said if I get cancer I'd never go through chemo.

I had a childhood friend that passed away a few months ago. He followed the Dr instructions and the side effects almost killed him. The Dr told him the tumors were gone only to return less than a year later. He said no more and eventually passed away. He told everyone he wished he enjoyed life instead of going through chemo hell.

If I didn't have arthritis head to toe (severe spinal stenosis) I might have more fight .

It's a tough decision but I still stand by it.

Thanks