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The whole truth about me

KarenMG's picture
KarenMG
Posts: 109
Joined: Jun 2017

It's difficult to read these posts and if you start a new topic, you usually won't get many responses. If you look at most of the posts, this is true of all of them. Is it because this IS in fact the most difficult part about this whole thing? I know everyone is not stage 4. I am. My emotions are the worst part of this whole illness, other than the fact that this is going to end my life way sooner than I ever thought it would end. Of course life is very fragile, no one knows what might happen to them at any time. It is a terrifying thought for sure.

Obviously from what I just said, I have not seemingly begun to find peace in my situation. It is not going to be easy. I am seeing a therapist faithfully, I called a Hospice counselor to try to set up sort of an "end of life" type plan or just counseling. Now, I am not saying that I only have a short time left, but I need to be prepared none the less. I do have days that I wake up and my first thoughts are that I'm going to leave this earth soon. I am not that sick, I do get out of the house some, I am not in treatment and certainly not bedridden.

Physically I feel sick through most of the day, I have nausea most of the time and my appetite is way off. These things may be caused by the three rather aggressive treatments I've had to my liver, where the cancer metastasized to. I have a pain in my right side near my ribs which is has not ceased since the last treatment on Jan 15th. The interventional radiologist I was seeing at the time suggested yet another invasive treatment involving injecting chemo beads into that area. Ugh! My oncologist is now saying that continuing to treat my liver and ignoring the rest of me is not a great idea and that I should give my liver a rest. I know that I am unable to lay on my right side since then and that is how I used to like to try to sleep. I am able to lay on my left side, and am not really comfortable on my back. I end up having to use my heating pad on my right side to get comfortable, sometimes it seems to cause more discomfort. I also have fairly extreme fatigue which is a side effect of the Y90 I had.

My thoughts before having the Y90 treatments was that I was fearful that after having them that I would be sicker afterwards, which I am and would not return to at least the mediocre way I felt prior. I guess I should have listened to my inner dialogue, but I had this gung ho interventional radiologist cheering me on and giving me so much hope for possibly a cure and adding 2 years to my life. Now my Oncologist avoids the subject like the plague and is fairly vague about that, probably since he mistakenly told me that I may only have 4-6 months to live back in November of 2017!!! How could he be so far off? Which really keeps me confused about where I am now.

There is so much that I don't know what to do about. I don't know what to think, what to tell my family and friends? It's like being in Limbo. My Oncologist has perfected the art of avoiding the subject with me. I know that he does not know for sure but I am having the post Y90 scan this Friday and see him on the 19th. So definitely he needs to tell me something more definitive. Hard as it may be to hear. This pain my right side is really concerning, it hurts to take a deep breath or sneeze still. I think it is a tumor.

I am also scheduled to see the replacement Interventional radiologist who I've seen once post procedure, wow he seemed fairly worthless. I asked him about my increasing CEA and what might be causing that and he just shrugged his shoulders. That hardly seems like an acceptable answer from a MD. I may not bother seeing him after the scan, what's the point?

So due to the serious fatigue and pain, I cannot see me taking the vacation I had planned to Hawaii. The only person I have that could go with me and I will have to pay for everything for him and me, is my son that has aspbergers and is very difficult to get along with. He has taken off work for a long time now to help me, and right now he goes to pick up groceries or food for me and that's about it. He does go to my doctor visits with me. I think he tries but he doesn't understand a lot of things and we have some very serious communication breakdowns, like tonight which ends with me feeling like crying and him acting very depressed. So going on a long trip and being stuck with someone that may not be that sympathetic if I get sick, doesn't seem like a fun idea. It might not be a pleasant trip.

My emotional struggles with all this are pretty much a disaster in my opinion. I cry every day for no specific reason, usually triggered by music or something emotional on television. My therapist, when I mention this just asks me when I am going to start taking an antidepressant. I am AD resistant, they never helped me in the past so why would they help now. My brain feels wacky nowadays with all the meds I take, even caffeine (too much) can put me in a tail spin so I am definitely afraid to try an AD. I told my therapist that I don't want to talk about them anymore, I realize that therapists think that they are the answer. I disagree completely. So much of the advice she gives me, I don't take. I fear going to support groups due to driving 10 miles in the downtown traffic. Also I think that they would be super depressing. I don't really want to talk to the Hospice people right now. But my whole family is so dysfunctional right now, it seems worse than ever to me.

I realize that this has turned into a diatribe but I must get it out. So, yes my family who I love very much is making this all so much worse. I had an idea that they were all dysfunctional, including myself, but I really had no idea how much so! My sister chose to basically tell me that rather than have me or "my family" come to her house for Christmas, she would rather go out of town to escape it all. She told me this the middle of December. I shouldn't have been so shocked or surprised but it really hurt a lot. So I sent her a long text message, explaining how much it hurt and that I couldn't talk to her for a while. Since then there has been no communication from her, with everything going on with me and doctor visits, procedures and etc. Nothing. She didn't speak to my kids or grandkids for Christmas or ask about me. Didn't even tell me when my Uncle died recently. How do you treat someone that way when they have stage 4 cancer? I don't have any understanding of it all. We always had a difficult relationship, one sided with me making the effort to keep some sort of relationship that I really wanted to have with her but I can see now what her true feelings are. That's harsh.

Then I have a younger son who has 4 children. I took us all out for a very nice dinner at Christmas but have not seen the kids but once since then and that was when they all wanted to come over and watch the Super bowl. My daughter in law never calls to say hello or check on me. Not once since my diagnosis 2 years ago. Why? I have no clue. So she doesn't bring the kids over anymore either. I know that my younger son is not handling me being sick well, he never asks what is going on with me, doesn't want to know. My granddaughter that is 17 that is almost grown, I gave her my old car for her birthday last year. I never ever hear from her. My last text to her was never answered. I feel like my family hates me sometimes.

I think my situation is fairly impossible, my therapist doesn't even know what I should say to my sister. She said my granddaughter is just being a teenager. I feel like I should let folks know that they don't have forever to talk to me or be with me but that might make things worse.

So I think understandably I am angry and resentful a lot, I don't know what is going to happen with my family and I. It does not take much at all to make me break down and cry.

In the middle of all the craziness and not really knowing where I stand physically, I may have to move. I went to look at a condo to buy, but it seems really nutty. My therapist thinks it's a good idea. I think I would rather have a nicer new place (much nicer) than to take a bucket list trip that might be disastrous. A nice new home is my bucket list I think.

It is what it is as they say, I guess I can only just perservere to take the best care of myself that I can and pray for the best and a miracle.

Love,

Karen

 

GingerMay's picture
GingerMay
Posts: 134
Joined: Sep 2016

Your feelings are very understandable. I think you are doing a good job in a difficult situation.   

The family dysfunction you mention hits a chord with me. Sometimes trying to understand people is just crazy making. Not getting much from medical staff besides a course of prescribed treatment is also something I relate to.     

I am impressed by the plans you are making for yourself, and will be hopeful that the people at hospice will offer needed support. I like that you reached out to a therapist, but I know sometimes therapists really have no clue how to help.  It is OK to follow your gut instincts on not taking the AD, and actually on all that you mention. That little voice inside our head can be quite smart.         

Do what is in your heart and feels right to you. You can come here and vent as you please. Make whatever plans you think are reasonable and follow what will bring you some peace.  You do not need to explain yourself to anyone. Prayers to you.  

KarenMG's picture
KarenMG
Posts: 109
Joined: Jun 2017

Thanks so much for your compassionate and understanding comments. I know I was starting a book on here last night but these are things that you cannot say to your friends and family every day. They would definitely want to avoid that and rightly so!

Your thoughts are truly appreciated.

Karen

a_oaklee
Posts: 502
Joined: Nov 2013

Hi Karen.   I agree that all of your feelings are so understandable, and so very difficult to cope with, but it does really sound like you are doing everything that you feel is right.  I would like to suggest that you try to keep yourself open to try some things that might be helpful.  You may find a new friend at a support group.  You could go once or twice and if its not for you, nothing is lost.  If you feel your therapist is not really helping you, perhaps go to a new one.  I do believe in taking antidepressants as they have been improved and there are many to choose from.  All I am saying is if you feel like just trying something it can always just be for a month.  I know you really want to feel better.  

I am here because my husband was diagnosed with cancer in 2012.  I think he is unusual in that he didn't tell anyone except me and the kids.  It has been so hard on me to have no one to talk to about it, so I come here.  I also got some professional help, as they are sworn to secrecy.  

I understand the frustrations and disappointments that we can feel when people let us down.  I try so hard to not let my expectations of others bring me down.  Tough to do when you actually care so much about the individual, and want to have a better relationship.

I will come back to this thread if you write back.  I agree with you that it would surely be nice to continue some conversations.   

I want to go to Hawaii too!

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