Please share your experience, we care for mum and are lost

MexicanMary

My mother had a total mastectomy and 43 lymph nodes removed in 2008. In 2018 Mets were found in liver, spinal column, and lungs. Bother times she underwent chemo and radiation.

She has non-alcoholic cirrhosis and delicate kidneys

Yesterday she had an ultrasound and x-ray. Her liver and epiplón are covered in Mets. She was fluid in her pleura and is mal nourished (we're working on that as much as possible) but since she's retaining fluid (ascites) things are delicate.

I know that at this point cancer might be the thing that causes her transition. But in this vast world of people i wonder if there are people who have gone thorough or after going thorough similar things with recovery success

She's not taking chemo or radiotherapy. She's fed with all of that, so others then magic, psychic stuff or a miracle i don't expect recovery. But I would love to have my mother with me a few more years.

Has anyone been able to accomplish that? How?

exbrnxgrl

Querida,

I am not in your mother’s situation (I am stage IV with bone metastasis) but wanted to offer a word. Your mom is in a difficult situation. Without any treatment it is likely her cancer will progress but no one can predict the course of the disease. I hope she will consider conventional medicine to help with her nutrition. Epiplon es omentum en Inglés. May your mom find peace with whatever she chooses to do and may you y tu familia find peace as well.
Abrazos

ParakeetsRule

So sorry about your mom. But it's her decision to stop treatment. There are many options out there now that can extend life and improve the quality of life, but if she doesn't want to take them there's not much you can do. Just enjoy your time with her as much as you can and do whatever she wants to feel happy and comfortable!

MexicanMary

Hello! thank you for replying. I feel rejuvenated and hopeful every time I see you, awesome ladies, here, enjoying life and living it to the best. What my mother just does not want (and that was made clear to us today) is chemotherapy, radiotherapy or surgery. and the reason is simpl, since she is already in the Mets stage, there is only certainty that the cancer will return.

For the rest of her problems, she IS taking medication. right now she's taking (and I am sorry if I did not translate properly) Ursodiol to reduce the liver swelling, cinitapride to ensure that her stomach empties properly, iron (for the anemia), propanolol for the liver porta vein, and a few others as well as diuretics to get rid of all the accumulated water in her body (ascites) and the pleura.

She also asked us today to DNR but ensure she is dead once that happens. It was a long, tough day. However, she does seem better. She squeezed a nap in the middle of the afternoon (not something big, just half an hour) and she was prescribed an ensure like beverage called supportan.

the first bottle made some sort of fizz in her body, we were scared, she was limp! after a while the nutritionist (to whom I need to pry the information out of, because she won't volunteer it) did recognize that this is a heavy nutrition drink and for someone like my mother who had spent a whole week eating nothing but fruit "for the studies sake" it might be too much...

I am currently feeding her quality over volume. Only highly nutritional things. Lentils, filet (I squeeze it likea lemon and she drinks the juices) -my mom's a vampire, .lol. and the vegetables and fruits that do not cause her stomach or intestines any pain.

MexicanMary

Hello! Thank you for replying! Yes, I know there is little that we can do. We are reading as much as possible on what to do and how to turn it into something positive. To ensure her transition as painless as possible.

I have read here that there are many wonderful women who are living their best life with their mets. I believe that while she does not want to undergo chemotherapy, radiotherapy or surgery there is little that we can do to revert the damage or progression of the disease. However, I also believe tha, she might live a few more years if these terrible things are properly managed.

That is what I need, information, experiences, and recollections on how is this done. Hopefully, I can steal her away from death for a few more years. Of course, when she is called to go back home, it will still hurt as if my own heart is ripped off my chest and everything else. But I am clinging to hope and being greedy as hell.

MexicanMary

I want to share this with you guys. It is our experience but maybe it will help someone out there. Well, since I posted this thread here a LOT has happened. The radiologist that did the work on my mother and who told us that she only had a handful of weeks to live, stated a DIFFERENT THING in the report. to us, he said that mom's lungs were clear and that the liver was ridden with mets. In the report, he states that there are "some" mets in the liver but the lungs have "several" mets.

That pissed me off. How could he be so unprofessional? Then I wanted to give him the benefit of the doubt. Maybe he had more time to study the work and realized he had spoken too soon. or too late? Still we decided to take the lab work to other physicians to see what they had to say. We interviewed about 20. From all scopes, from surgeons to oncologists to spleen and liver specialists. ONLY ONE agreed with the radiologist. The rest stated that for an XRay without contrast, it was very hard to determine if the mets were active or dormant. Or there at all (I have now learned that sometimes mets are "killed" and they leave scar tissue that can be mistaken as mets and only a biopsy can rule them out.

Well, that opened a door for another set of worms. there was a surgeon who said that he could help mom get over this problem she currently has, as cancer has been "ruled out" for the time being. In this process, the surgeon decided to ditch my mother mid treatment and go on a "vacay" overseas. He nearly killed mom as both my sister and I trusted his credentials. Diplomas and credentials mean nothing, guys, you could end up in the claws of one of these.

Then we found another surgeon-internist. She explained to me that all my mother has are intake related problems. Covid/covid vacciination -long covid/neurological damage of the vaccine - constant coughing - medication - erosive gastritis - intake problems - liver problems and where we are now.

So I need to get her to eat as much animal protein as possible and she can be healthy again. She also mentioned that the thyroid gland might be the culprit here. As a cancer patient caregiver, I focus most of the times in this big monster: Cancer and forget that bodies get sick of a million other ways. that there are silent killers that seem harmless but that are as poisonous and deadly as the black widow spider, who happens to be tiny.

Mom is alive, but she has had a tough 3 months. she's tired and sometimes she does break up and cries because we are constantly hovering over her with medication, care and questions. How do you guys solve that? Keep the questions and the caring at optimal level without hurting the patient? and how do you do it? I have been constantly up for these 3 months since 10 am to 3 am everyday caring for her, doing little stuff around the house (it is hard to care for a patient! I never knew how hard it is!) and working.

I currently live on soda pop, something i can swallow more or less quickly and aspirin. but there are times when I keep the tv remote in the freezer and do stupid things like that.