Ok, Here's what I think.
I think that I have so many small tumors in my liver that they (the doctors) don't think that there is anything to do.
I think that they feel that the best they can do is wait until I have symptoms that they can deal with and then deal with those in a way that lets me suffer as little as possible as I die. My last appt was with my oncologist's assistant and she said that she thought I should get pain pills stronger than I'd had. I said no. She didn't understand that I don't want to just snooze through.
I think they have absolutely no thought to saving me or increasing my life span one bit.
I think they have totally written me off and their only interest is if I somehow continue to "beat the odds". But now they call my cancer "indolent' so that puts me in some space where they won't predict how long it will take to get to some terminal type of situation.
I think this sucks.
Apparently since I don't have major bucks or insurance, they are not about to try anything weird or experimental. I am just another junk heap cancer "victim" that they tell themselves they couldn't save anyway.
I feel like I've been written off and that not one dot of energy is going to go into me other than some sort of maintainance until the cancer grows so extensive that they then can say... put her in hospice, she doesn't have long to live.
I read about all of these people with various sorts of cancer who have been given treatments and surgeries and you name it, even though they think it will only come back, as it tends to do. But but for me "nothing can be done". I can get chemo, until the chemo itself kills me. but no one has anything to suggest, no matter how radical or experimental or whatever, to give me a shot. I've been told that if my measured tumors grow more, they might consider chemo embolization, but since they only measure a few of the biggest ones, who knows when that will happen.
I don't know how to fight this. I don't know what to do. I think I'm supposed to just take it. Ya, I'm angry, Ya, I'm pissed off. I wish I had someone somewhere who would say "let's fight this" and have some suggestion as to what to do.
I feel very alone.
I am alone. I don't have anyone who will or can step up and fight for me. Janel would have, and has, but now she has cancer too and has to do her own battles. Wouldn't ya know. I'd be there for her, too, but I'm doing the same thing.
I read all about how hard it is on the caretakers, but I wouldn't know. What happens to those cancer people who don't have caretakers?
Sorry I sound so negative. But the truth is we all feel negative at some point and it's only the myth that we somehow are such strong fighters and all the other hero bull shit that keeps us from voicing some of the more scary and negative stuff.
Well, since no one is going to hear it anyway, I guess I can say it for all. THIS SUCKS!
Bathtub Lasagna
5 months ago
2 comments:
I'm so sorry to hear what you're going through; glancing at your blog from time to time has been a source of hope for me because my father also has cancer of unknown primary.
It must be overwhelming going it alone. My dad has three daughters and a son-in-law actively fighting for him and we are all still heartbroken and overwhelmed by how hard it is to find him adequate care and to talk to doctors.
You have probably already thought of these points so feel free to ignore anything that is not helpful...
1. Is there a cancer care coordinator on staff at your med facility? (Some facilities have people on staff who are supposed to attend appointments w/ you and help advocate for you.)
2. Can you ask your doc's to consult w/ leading experts on your condition (if it was still a CUP diagnosis, Dr. Greco would be the right person to talk to) on the best treatment for you? If you want them to do this, having the name and contact information for the expert in question is a good idea. Ask your relatives to research this for you if it is too overwhelming. (I have e-mailed people all around the country and there are some very gracious doc's who have written back w/ very helpful suggestions.)
3. If it won't cause undue delays in your treatment, can you stay with relatives who are near a top tier cancer facility (see U.S. News rankings on best cancer care facilities in the U.S.) and seek treatment or consultation there? Apparently, there are plane services that provide transport free of charge to patients w/ cancer.
Dear PattiB:
Hi! My name is Risa. I am writing from Tokyo, Japan. I too, am feeling sorry for what you are going through. My mother-in-law also has CUP. I came to know your website, by trying to search, desperately for an answer, or at least a some sort of clue to help her out from the agony.
By the way, I loved the picture on the website (God, I liked the purple wig! you look so COOL), your great sense of humor. In particular, I learned greatly from the copy of an article with the list of "What to do and What not to do" for the caregivers of the cancer patients.
Yes, I was always trying to make my mother-in-law positive--I even praised her many times for being so postive--Thanks to your article, now I know how silly I was and am thinking of asking her forgiveness next time I see her.
Dear Ms. PattiB, I am so thankful for your honesty. I would have never realized how much pain I had given her, had I not read your website.
Since you said you were alone, I would pray for you, for your recovery from Japan. How's that?
Whenever I pray for my mother-in-law, I would ask God to also help out the "brave PattiB in the purple wig." Hope this helps.
Again, thanks for the great website. I wish you the very best and God Bless YOU!!
Risa
Post a Comment