Talking Frankly about Living with Advanced Cancer

... guide and stabilize..

Colleen, Thank you for your assistance and the direction of others that may aid me

Thank you, @colleenyoung, for tagging me in to theis discussion.

@miller03 While my story is not the same as yours, your thoughts and concerns, are very similar. Without going into a lot of detail right now, I offer you the following from my standpoint. I currently deal with an incurable blood cancer, failing kidneys, and a renal tumor.

First, be gentle on yourself. Find what brings you joy, whatever that may be. A hobby, a creative passion, nature, family, etc. Do what you need to do to be as healthy as you can. Exercise most days, even a stroll around the neighborhood at a pace you can keep up. Have a protein shake of some sort everyday; it will help pep up your energy, believe me! And raise some crucial blood counts. It’s okay to have a “lazy day” too, just not too many!

Second, get the facts you want/need to know, from reliable sources and your medical team. No sugar-coating for you, it sounds like [and sounds like me, too, here!]. Go in with questions written down, and get answers. Then, you have a great basis for decisions now and in the future. Cancer centers have amazing social workers who will help you clarify your thoughts, and understand how to talk with your family.

Talking to family/friends may or may not show they have the same thoughts/wishes as you do. As Colleen said, it is ultimately your decision. I feel my husband has a right to know what my wishes are. He knew going in to our marriage about my kidney issue, but cancer came along later. I choose quality of life over quantity.

Does this help you at all? I can respond further to you, if you’d like.
Ginger

Hi i am still hanging on and getting ready to start a clinical trial. Its a phase 1 and because I have the HER2 gene, i qualified. I haven’t met with the clinical trial team yet, i just found out Wednesday of last week. I’m a little worried, it hasn’t been tested on humans yet. My CA125 is up to 1222 and my only other option is Taxol, which Ive had several times, and did well with it. If i get to the point where im in excruciating pain and a burden to my husband I will say my goodbyes and go into hospice care, hopefully at home. I have not seen an oncology social worker but I have an awesome Pallative care doctor.

Jen, you're asking good and really fundamental questions, like whether further treatment is additive to quality of life or diminishing it. And protecting family from the "extended ugly side of prolonged, invasive/ infection/ traumatic treatment." As you said we don't have answers and everyone has to answer for themselves ultimately. But it sure can help to talk about it. I wonder if @miriam57 @gingerw @pauldale4 @starko or @odette would like to weigh in with their thoughts.

Jen, have you talked to your family about their thoughts? Have you ever talked with an oncology social worker?

Colleen, after RCHOP. (1st chemo) and radiation my bone marrow is "tired" had Reclast in the past as I completed second ( first gyn) chemo also completed 9 rounds of Doxil(3rd chemo) June 2021. This last round of chemo had me chasing relief from ever-changing GI, mod-high fatigue, anorexia, depression ie. decreased Quality of life. Now, after 6 m break I feel mentally able to try Taxol, 3weeks on one off but: 1. my blood level are still low. 2. I'm having lt-mod fatigue. 3. Some discomfort from tumor load multiple/mod. growth MNA liver/lungs. My concern is whether chemo is additive to my quality or diminishing. My wishes are to protect my family from the extended ugly side of prolonged, invasive/ infection/ traumatic treatment ...when is it too far reaching for our own good? I know we don't have all the answers but there is probability and I need some guidance. Thank you, Jen

Thank you.🥰

That's a hefty blow to get 3 serious diagnoses all at the same time. I understand you are now considering whether to continue with the full course of chemotherapy, am I right?

That's a decision that others have talked about here too:
- Going my way: Decided to stop cancer treatments https://connect.mayoclinic.org/discussion/going-my-way/

It's a very individual choice and also affects those around you. @miller03 are you finding the side effects of chemo to be a struggle? Has taking a break helped ease the side effects?

Thank you, @rose53 I appreciate the kind words!

It does my heart good to know sharing my thoughts, words, and experiences has been helpful. When my wife was diagnosed with her brain cancer and her surgeon bluntly said "so you're her caregiver now", I'd never felt that alone. Her's was an extremely complicated case and yet more often than not, as her caregiver, I was continually sent on my way with little help, support, or direction. Throughout our struggles, I always knew someday when I finally had time, I wanted to share our experiences in the hopes of helping someone else who might be feeling the same overwhelming sense of loss and dread I did.

I hope you are doing well today and wherever you are the sun is shining on your shoulders

Strength, Courage, & Peace

@IndianaScott
I just read your post to miller03. I am touched by your sentiments to them. I was diagnosed with uterine cancer over 4 months ago and have since recovered from it. However, had it not been for the support and encouragement that I received from the group of caring people like you, I would have been very lost. I was lifted up with hope when I read many who wad going through the same thing I was so I felt I was not alone. Now, I find myself exchanging my thoughts to others in hope that I too can express my appreciation. I am also sorry for the miller's loss. Thank you for what you do. Kind regards.