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Facing Y90 treatments, Emotional difficulties are challenging

KarenMG's picture
KarenMG
Posts: 107
Joined: Jun 2017

Hello everyone!

I haven't posted here in months, it seemed to be a bit too much reality for me at my last visit.

So now I'm preparing to have the Y90 treatment to my liver for 3 lesions, approximately 8 cm each I believe. It's taken a lot for me to decide to do this but after a recent PET scan it seems to be the only option unless I am ready to just give up and let it over take me. So no! I am pretty petrified. There is a mapping procedure first where you are put completely to sleep. Sort of like a trial run to see if radiation goes through the proper channels and make sure it will not go to the lungs or abdomen and cause worse problems. That is next Tuesday. Then 2 weeks later, radiation beads will be injected into one lobe of my liver and then 2 weeks later will repeat to other lobe. From all I've read, it seems the worse symptoms are nausea. One patient reported a clear scan after treatment.

HOWEVER, I am totally anxious, very anxious about having any of this done. I already had a history of anxiety before the cancer diagnosis. It has gotten increasingly worse during this 2 year ordeal. I had been off all anti depressants and anxiety meds for five years. Now I have had to start back taking Ativan. I have problems with getting out into the world, shopping and driving. You name it, I have anxiety about it. So thinking about facing life threatening treatments, which is possible but not likely, is pushing me into a level of anxiety that is fairly crippling.

I don't really know how to explain how I feel. I do know that I have regressed back into some mental illness and that makes having a positive outlook very difficult. I keep going and pushing myself but my thoughts about everything is very dark and depressing. I cannot walk into a department store and pass the dresses without thinking about how I need to pick out 'the dress' to be buried in. Should I? I wish I could control the very dark thoughts that I have, I have not had any luck in a search for some counseling. The one therapist my cancer center had left. ??? Strange because it is a HUGE cancer center. I guess everyone is not like me.

I had a light bulb moment while writing on the emotional support board that my anxiety issue is way worse than most of the physical symptoms of pain and nausea related to the cancer treatments and symptoms.

SO...what I am getting around to is that the long post I wrote on the emotional support board only got one reply and what I need more than anything right now IS the emotional and mental health support and feedback from my fellow cancer sufferers.

Does anyone have any suggestions about another cancer support board that might be more geared for this? I am realizing also while writing this that if any way I can get up the nerve, I need to make more effort to find a therapist to help. I would rather have just support from my peers, I've experienced a few therapists and they are not going through what we are. Not great memories sometimes!

Sorry for not coming here more often and supporting others here as much as I should, I'm pretty much too self absorbed right now it seems. I will work on that.

Thanks so much for reading. If you have no thoughts or ideas, just say hello!

Hugs, Karen

 

Canadian Sandy's picture
Canadian Sandy
Posts: 459
Joined: Jul 2016

Hi Karen.....I can’t help much but hopefully someone will come along that has some advice.

My heart goes out to you and I will pray that all goes well. I to feel that talking to our peers is more helpful.

My faith has carried me through everything and hope you can get comfort that way also. 

 

 

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

I am getting ready for a radiation treatment shortly (couple of hours) so apologies for brevity/bit of shorthand writing on this.  Pretty sure every patient has had at least some thoughts like yours (is this the dress, should I make arrangements, etc.) from time-to-time even without also anxiety issues going into this. And I am pretty sure that many who did not have those issues before cancer, sure as heck have them now.  Just a question of how severe or if they are just missing the fact they have it. 

Try this link and scroll through

https://csn.cancer.org/resources

Doing a quick a scan on the names of organizations, etc on the first page of resources https://csn.cancer.org/resources was https://csn.cancer.org/node/295577  Which looks to be one thing to look at and I am guessing there are going to be others, looks like a list of 600 plus.  

Also this link https://www.cancer.org/treatment/support-programs-and-services.html

A google search on some terms:  https://www.google.com/search?q=emotional+support+groups+cancer+patients&oq=emotional+support+groups+cancer+patients&aqs=chrome..69i57.9360j0j4&sourceid=chrome&ie=UTF-8

I would start with the first two links myself which is on this site because some results on google are broader.  Definately get started and making some calls.  Don't get disheaterned if you contact some that do not meet your needs for whatever, move on to the next until you get someone to help. 

gul1976's picture
gul1976
Posts: 37
Joined: Mar 2018

Have you tried qigong? Qigong therapy helps my sister a lot. She gets energized and feels positively after every session. Good luck and take care.

JanJan63's picture
JanJan63
Posts: 2476
Joined: Sep 2014

I experienced that about a year ago and it lasted for a couple of months. At the time I was recovering from sepsis so physically I didn't have anything positive going for me, either. I could take any subject and turn it into something dark and upsetting and then was unable to steer my mind away from it. I ended up going on anti-depressants and using some techniques my doctor told me about. I still will occasionally start thinking ugly things and I have to almost physically give me head a shake to stop it and then make myself focus on something positive.

I tried going off the anti-depressants a while back and immediately started having nightmares. So I guess I'll stick with them. The dark thoughts I had were anything from my own death to animal abuse. Not that I'd ever abuse an animal but due to facebook I've seen a lot of horrible things and, for some reason, that was often my got to place for dark thoughts. I'd literally have to force myself to stop and think about something more positive. It's hard but you can control your thoughts. 

When I was in the hospital for the last surgery, just over a month ago, I used mindfulness when I was scared or going through a painful procedure. I'd try to dissasociate from the situation and imagine I was riding my horse in the mountains. I once read about a woman who had been captured and tortured by the Nazis. She said the mistake they made was to torture her while she faced a window where she could see a beautiful meadow and trees outside. She'd mentally remove herself from the situation and was then able to withstand the torture. That's some pretty tough mindfullness but it made me more determined to be able to do something similar.

I don't know if anything I've said helps in any way, all I know is that we've all been there. Focusing on our eventual death, wondering how long we have, all that negative stuff. It's hard but you will get through it. And know that there are people who really do understand.

Take care,

Jan

Trubrit's picture
Trubrit
Posts: 4716
Joined: Jan 2013

I am sorry to hear that you are experiencing such debilitating anxiety.  My heart goes out to you, because I have friends who suffer so, and I see how it changes their life. 

There are many here who are taking anxiety medication; other than the side effects it may cause, I believe it has to be a good thing. If it helps, take it.

Next time you pass a dress in the store, and think 'Should I be burried in this?' Say yes, and buy it. Put it in the back of the closet, and there, you have one less worry on your mind.  Plan that funeral, pay for it even, more things NOT to stress about. 

There are many people who have had the Y90 procedure done, some are from the forum and don't post any more; but that doesn't mean it didn't work.  

Many members, when they experience the joys of being NED, don't return to the forum, thus, we don't always get the positive 'Yes, it worked' replies that so many of us need.  Do not read the stats. They do not apply to you, me or anyone out there. If it works for you, it works, regardless of what the stats say. 

Do not worry about how often you post. We are here for you if you only post once in a blue moon. You need the support right now, and we're here to give it to you. One day, you will have the health and energy to support others, right now, let it be all about you. 

Try meditaiton, it doen't work for everyone. Its not all about sitting crossed legged on the hard floor, either. You can meditate while driving, shopping, going out your front door. Its all about breathing and getting your mind into a good place.  

I wish you nothing but the best, as you move forward with the Y90.   

Post when you can, we will all be waiting to hear how things are going. 

Tru

 

 

 

mountainhiker
Posts: 54
Joined: Aug 2018

Hey Karen,

You are not unusual in any way.  I can't imagine anyone being diagnosed with this terrible disease and not feeling down at least once in a while.  At the beginning of my journey in early 2017, I was in a very bad place - I just knew I wouldn't live to see my 3 young kids grow up.  I organized all our financial matters, took care of some legal things I had been putting off, and basically was getting ready to ride off into the sunset.  In some strange way, I actually think doing all that stuff cleared my mind of a bunch of trivial things and allowed me to grieve for myself.  It's okay to mourn - as long as you don't give up the will to fight.

I don't know if you're a spiritual person, but having our church family rally around us through the tough times was a HUGE help.  It gave my family peace that we would not have had otherwise.  In fact, when we headed to NYC last July for my liver resection/HAI pump implant surgery (which is a 3 1/2 - 4 hr dirve), my pastor and his wife were in their car right behind us all the way.  They stayed in the city at the same hotel as my wife and kids for 2 days to make sure they were okay.  The last people I saw before being wheeled off to the OR were my wife, my pastor and his wife...and they were the first people I saw when I awoke from surgery.  I still get choked up when I think about it.

mountainhiker

 

KarenMG's picture
KarenMG
Posts: 107
Joined: Jun 2017

Your words mean more than I can say! I guess it really does help to vent, air it all out. I had not done that in some time.

So true that this disease makes everything more difficult, if you already had depression and anxiety, it's multiplied. How could it not be.

I think you guys really helped me today with the whole silly dress thing. Next time I have that thought in the store, I will buy the damn dress and put that behind me. Making the funeral plans is a whole different ballgame but if I don't do it, that will leave it for my sister or sons to do and maybe I want it the way I want it! Of course I do.

At least after going to the pre-op visit and talking some more to a nurse, I feel less anxious about the procedure somewhat. It really does not sound so bad. I just hope the nausea isn't too severe. I don't like the idea of being put to sleep, being a reitred nurse I've seen too much of what can go wrong. Plus the hospital is not one I like but I do try to judge each event on it's own merits and not from past experiences...believe it or not.

I have checked out those resources online but did not see anything right off that seemed plausible, but I didn't make any calls so I can do that. But will I? Yes I can talk a big game but then start wallowing, avoiding and denying the situation. I'm good at that.

Funny but when I go out in public, I try to look my best, put on my best face and dress nice. No one has any idea that I am sick as I am. Of course that is better in my view. People look so shocked if you tell them if the conversation somehow leads that way. But then come the ridiculous and nosy questions but I know if I tell someone that I have stage 4 cancer, they immediately start being sad and ask all the questions that bring it all back to the surface. Sort of like counseling does. Not pleasant.

Thanks again all and I will keep you all in my prayers also.

Karen

 

Joan M's picture
Joan M
Posts: 355
Joined: Oct 2016

I don't recall being sick for very long at all.  The recovery was much easier than the ablation I had in January 2017.  My liver was clear of cancer until I had to go off chemo for several months due to a gall bladder that was inoperable.  Finally got that resolved at Mayo clinic and went back on chemo.  Now taking  a break due to extreme exhaustion and elevated liver enzymes.

Hope all goes well for you with the Y90! 

Annabelle41415's picture
Annabelle41415
Posts: 6077
Joined: Feb 2009

You should know right now that there is always hope so don't give up.  It seems like they are willing to do a procedure that they think will work on you so that is a very good thing.  It might be that you become NED after so it's a good thing you have decided to go through.  Also, come on these boards more often.  There are always people here to support you emotionally.  I'm not sure what you will be going through, but you sure can count on prayers from me for all of you daily on this board.  All of you are thought of and you should find strength in knowing we are here to help you, or just give emotional support.  Wishing you the best of luck with the upcoming procedure and please let us know how it goes.

Hugs!  Kim

plsletitrain
Posts: 253
Joined: Jul 2017

Being hit with a cancer diagnosis, going through treatments, the surgeries, the roller coaster ride, I won't believe anyone who says they didn't feel low and down at one point.  What you feel is very understandable and a lot of us can relate to it.  I know I have a wonderful support system but its different when you're talking to actual patients themselves.  They will feel what you're feeling.  I hope you get a way to steer from negative thoughts.  Its not easy, I have been and is going through it right now.  What I do is just think that after all this, I will reap the reward.  I'm thinking that I do this so I can be there for my kids.  

Just face this upcoming surgery, trust on your doctors and if you think researching (which tells you the negatives) does you more negative than good, stay away from it. Get it over and done with.  You're stronger than you think! 

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