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Have you wanted to end treatment?

Twinzma
Posts: 204
Joined: Jan 2018

I am growing concerned with comments Jim has been making lately. He said he is getting tired of all of this and see's why people end treatment. I am beginning to wonder if he is thinking of stopping treatment. I don't know if it is his birthday blues (he turned 56 today) or he if he is genuinely has had enough. This ulcer thing really has taken away his quality of life, more than the chemo ever had. He said had he known the y-90 would have done this, he would have never did this to himself. Chemo for him was really isn't bad, he tolerates it so well....But since the ulcers came along, he is in pain he can't sleep is now starting to lose weight becuase he can't eat much and he is all around miserable. Lack of sleep and pain of course can really start to mess with ones mind but this is really too much for him. I wonder if there is more to it, but the blood work looks good. He had a scan on Friday...results are on the 22nd. Seriously why do the doctors keep doing this?!?!?! The results are there, give them to him already not make him wait over a week. 

He is making more comments about not being around for things and I always give out an upbeat response. You know I have said it time and time again we caretakers never know what to say....and I am really at loss with this one. How should I respond? Even his at his workplace, things are changing, they are hiring another person to do his job as well...I think that is taking a toll on his mental state, he has referred to the person as his "replacement". 

I am afraid that he is coming to the pivotal point in the journey, where he is done and it scares the hell out of me. He is in the drivers seat with the disease, always has been. If he decides to end treatment then I have to be okay with it, or at least fake it. I hope that the scans come back positive, that he is given proof that the y-90 side effects were worth it and will continue on. 

What should I say to him when he talks like this? I know "honey I will support what ever you chose" but there has to be more to it than just that. Do I encourage him to keep going, do I talk about ending treatment or do I change the subject and talk about the weather? I am sure that some of you have at one point in time thought about ending treatment....what are the words you wished you would have heard or did hear that helped you? 

NewHere's picture
NewHere
Posts: 1066
Joined: Feb 2015

I became violently ill during my first round of FOLFORI.  Three times vomiting for 6 hours straight.  During that time I told my wife if this is what this is going to be, then I am done with it.  During the particularly violent session I was ready to call it a life at that point.  It was horrific.  

Otherwise, I have not had the feeling to end treatment yet.  I am tolerating the chemotherapy and have about 7 good days out of 14, the chemo treatment week is not wonderful, mainly tired and generally not feeling well, but I am getting into the rythm of it.  Not where I want to be, but still dealing with it.  I can see at some point, based on what is going on inside, where I would stop treatment.

His thoughts of not being around and similar comments are something we (as cancer patients and caregivers) deal with.  And when I think of things, like not seeing my niece or nephews graduate high school or middle school or other similar things, it is something that is tough to deal with.  I try to shake it off.  

The emotional toll of cancer and its treatment is very often just as harsh as the cancer itself.  I know how I am physically reacting to chemo is almost surpassed by the actual mental efffect (chemo brain and ancillary issues with it, including snapping and lack of proper thinking, which is physical obviously, but coming across in this way).

Perhaps finding some counseling.  Perhaps a time-line to discuss and see how things progress.  My thought (for myself) is that ending treatment and its consequences is permanant.  I am not sure when I will accept the permanance of having (making to the decision) to pursue that choice.  I have actually used those words a few times with family. In not quite as diplomatic a way when they were going through things.  Not harsh or critical.  But basically, "Listen, I get it, I am not in your shoes.  But dead is permananent, let's talk things through and see what is out there and weigh what is going on."  And people stayed around longer. In one case, over a decade and doing well during the intervening years.  It was timing of when they felt bad and adjusting.  As I tell people my reality is watching TV for a week with naps and feeling sh--ty and like a zombie.  If I think about it in theory, that is not my idea of "living."  On the other hand, there are a ton of worse things and I look forward to the good days.

It may be worthwhile (not sure if you have or not, can't remember from posts, so apologies if I missed it) is to look further into things with respect to the issues he has going on.  If the chemo is tolerated, getting the other things under control could help.  Counseling may be available also.  It could be worth it.  

So sorry to see this and I am hoping this is just a brief hiccup for you and your husband that you are soon past.

 

 

Lovekitties's picture
Lovekitties
Posts: 3322
Joined: Jan 2010

Are the doctors not able to give him anything to help with the ulcers?  How about requesting a consult with a nutritionist to find foods that will be less problematic?

His response to everything is not unusual, but perhaps frank conversation with his doctors will help him find some relief from the physical issues and some help with his emotional issues.

Wishing you both the best,

Marie who loves kitties

 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I think it's normal to have the ups and downs. From I'm going to kick cancer's a$$ to I can't do this any more and I hope I don't wake up in the morning. I have gone through the whole gamut of emotions like this, anyway. I've gone from being angry with my body for letting this happen, particularly after years of IBS and bowel misery, to being grateful for how hard it fights when I'm on the immunotherapy chemo. I've cried all the way home from a doctor's visit because the news was bad and I've done it because the news was good. There's no script for how to behave for those of us with cancer and for you, the caretaker.

My husband has been really good about what he says to me. He's said a few stupid things and made me mad but for the main part he's very good. When I say I'm done, I can't do this anymore he will say that he gets it, he's so proud of what I've gone through so far but he understands how I feel, and that he hopes I'll change my mind because he and my daughter need me and love me so much and don't want to have to live without me. Sometimes he'll say it would be s shame to go through all of that and then give up. And I'm aware that if I stop treatment and let it take me what I'll go through will be far worse than treatment.

There have been a couple of times where I've been almost bedridden for long periods of time, several months. I hate being like that and hate beiing that person. That's when it's easy for me to want to throw in the towel. But I've rallied back every time and when I do I feel like a million bucks. Its so empowering to be able to do things again and feel almost normal. It feels so good and I'm so appreciative that it almost makes the bad stuff worth it. When I'm feeling good I think it's going to be a long time before it finally gets my. When I'm feeling weak, tired, and vulnerable, I don't think it will be long.

I don't know what will work for your husband. I'd suggest not changing the subject as it will seem like you're letting him down. You're his closest ally right now. Supporting his feelings is the best route, I think. You can't possibly know what goes through his mind or how hard it is but you can sympathize. And tell him you support whatever decision he makes but you hope he takes into account you and your children and whoever else matters. A runner races until the end no matter how hard it is. They may think of giving up but they give it their all and do their best. Same with cancer. Don't let that b*****d win. Do everything to keep it at bay. Don't stop running because the race is hard. Stopping will be even harder.

I hope this helps in some way. Of course, I'm feeling good these days so it's easy for me to be positive. But he'll have better days and he'll be grateful he didn't give up eventually.

Best of luck to you both.

Hugs,

Jan

Annabelle41415's picture
Annabelle41415
Posts: 6123
Joined: Feb 2009

Sometimes but it would help to make a calendar and I'd count down the treatment on that and as one treatment went away I'd think I've only got "XX" left and then count another one down.  I'm sure that a lot of people want to but if he feels that bad and things aren't really progressing sometimes quality of life wins out over anything else.  He will know when he is not able to take anymore.  It's a hard decision for the patient to make.

Kim

NewHere's picture
NewHere
Posts: 1066
Joined: Feb 2015

That is what I did when I was on chemo (calender countdown) in 2015 and while things were not great I had an end date for chemo on calendar. Once I made halfway point it really seemed to go faster. 

I had the feelings on this time of chemo, new drug, with no chance to mark calender and see an end to it since I will be on it for as long as it works before moving onto another treatment.  Will be on it for the rest of my life until a cure comes.  So a calender/guidepost is a definite thing to try.  

RickMurtagh's picture
RickMurtagh
Posts: 584
Joined: Feb 2010

We planned a trip (just my wife and I) to Disney to celebrate finishing chemo!  It really helped me through those last few grim treatments for sure!

 

Best wishes,

Rick

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