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Waiting to get next scan March 15th

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

Hi all,

If it seems like I only pop in occasionally, you are right. It's just too tough for me. I apologize for not coming here more often and offering my support. I feel like I'm treading water and just barely keeping my head from going under.

Obviously it's depression. However, I still feel like I am recouperating from my last Y90 or both of them. My liver definitely took a hit from those!

I think that dreading the scan results is severely keeping me down and more depressed, I realized this today. So I am going to try to remember that whatever is there is there now if that makes sense. Not much I can do about it.

It seems my energy level is highly affected by my mental/emotional state. The family issues are ridiculously bad. I'm sure others have worse situations, but it's the way we handle them.

Today, my phone did not ring all day until 11 pm. Just that in itself had my crying all night. I went out to a nice restaurant and picked up food, came home and started crying again. Ended up unable to eat after all. It's hard for me to understand how someone with stage 4 cancer and not a lot of hope it seems has not one single person in the whole world calling to say hello or checking on them. I have 2 sons, a daughter in law, 4 grandchildren, 2 nephews, a sister, a brother in law, a best friend from high school and some long distance relatives that all have my phone number. I must be some piece of garbage to deserve this or maybe I am thinking too much of my self worth.

I know that we all die alone in the end, truly. It's a very lonely and personal experience. No matter who is in the room. It would just be nice to have some comfort from others in the meantime. I guess I just do not deserve better, I must have earned this.

Sorry, these are thoughts that have been on my mind for quite a while and obviously I don't have anyone that I feel comfortable to share them with, wouldn't want to do that to do them anyways.

I always thought that if you got terminal cancer that your family would rally around you and comfort you to the end. Boy was I wrong!

I do have a great therapist but just don't think she can help me. I told her this and that I don't think any doctor is going to help me any further, they have shown me what they are willing to do. I guess one reason I feel this way is that I cannot seem to have one good day since my last treatment so my optimism is very low.

Maybe the scan will show improvement, I am going to demand more information when I go see the doctors to hear the results. I still feel very much in the dark, I only know how I feel right now.

Karen

 

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

I'm so sorry you're experiencing this Karen. I feel like I have a lot of support from my husband and daughter and friends and acquaintances. To be honest I don't often hear from my friends but it's okay because of my family being so great. And I understand. If I had a friend with cancer I don't know if I'd know what to say or how to act. And time gets away quickly when people are busy. The truth is that I have nothing new to say. I have no life and nothing to say or tell them. If I reach out they'll respond, for sure. But the fact is I have cancer and people don't know what to say and are scared I'll have bad or cringeworthy news. Before I had it I thought a person either beat it and got better or it killed them. I had no idea about the nuances of it. 

I sleep long and am often weak and because of the dehydration I often don't have a voice or much of one so it's hard to talk. I like messaging people or posting on Facebook so they can get back to me when they have time because they have lives. But I think people just don't know how to be supportive. The "you'll do it", "you're so strong", "you've been through worse", crap like that are all just platitudes. Little more than "thoughts and prayers" or "there, there". I just want to be treated like I'm the same and laugh at the same things and gossip about people we don't like (sorry but we do) and talk about life in general. I don't want to talk about my cancer. When someone asks I tell them but I immediately change the subject. The last thing I want is anyone avoiding me because I want to talk about depressing things.

I've been through what you've been through Karen. I've become bitter and angry and resentful. Of other, healthy people which I'm not proud of but I think is natural. I used to be okay with people talking about their everyday little annoyances. A post on Facebook saying how they wish this fly would go away or some trivial crap like that. Now I just feel like responding "oh, poor baby, how about a trade? I'll have the flu and you can have cancer?" Not nice and nobody would talk to me if I did but I still have the feelings. I got so depressed last year I had to go on anti-depressants. I'm still on them. It's a low dose but I asked my doctor a month ago if I could go off of them and he didn't want me to.

Anyway, enough of my babbling. I just hate hearing about someone who feels they don't have support and is feeling lonely. It shouldn't happen.

I have a sister that's been out of work, along with her husband, for over a year. I avoid talking to her now because I'm out of positivity and I can't give her any more platitudes. I just really don't know what to say. And I can't help her. I know that's a frustration with people who care for cancer fighters. You can't offer any kind of advice. There's so many silly things out there that are wrong and when someone suggests something and I don't jump on it I feel like they're thinking that if I only listened to them I'd be cured.

Hugs Karen,

Jan 

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

Thanks so much for all your heartfelt comments. Unfortunately, I do realize that I sound bitter, angry and resentful. I truly try to think positively most of the time, if I did not I could not survive my life on a daily basis! I do need to find peace, I am not seeking it often as I should be. I don't have time to waste for sure.

Then when I'm having a bad night, it all seems to hit me at once. I fear I've driven people away with my honesty about my situation. I do not talk about it all that often but I can't see the need to lie about it.

My best friend from high school just wants to hear positives too...she called and when I mentioned my recent MD visits, she said "So everything is good right" I just had to tell her, no I'm afraid not. I mean things are progressing but not exactly the way you think. I sort of lost my patience with her which was wrong but it was kind of a dumb thing to say. Oh well, I know she wants the best for me.

Jan, I am sorry that you are weak and staying in bed so much, I hope you see some improvement and gain some strength my dear! You are such a lovely person. Thanks for being so supportive, I can tell you really care about us all.

Love and hugs to you, blessings and strength.

Karen

 

 

Melanie67's picture
Melanie67
Posts: 10
Joined: Jan 2019

Hi Karen,

My name is Melanie and I have stage IV CRC cancer, rectum and liver, diagnosed 1/8/18.  Currently “watching” three lung nodules.  While I have the support of my family, I frequently feel very alone, especially at night.  I feel that the only ones who can truly understand stage IV are those who are stage IV.  I don’t know if it is frowned upon to discuss religion on this website, but I am a Christian, and I find that my greatest comfort and strength comes from God alone.  Is there a Calvary Chapel in your area?  Where I attend, at least a dozen people in the congregation have cancer and there is a cancer support group.  Even if you are not a believer, Calvary Chapel will welcome you.  I make this suggestion with the kindest of intentions and hope that I do not offend you.  

You said, “I guess I just do not deserve better, I must have earned this.” I want to assure you that you do deserve better and that you did not earn this.  One small problem in one small cell is how all stage IV cancer starts out.  Nothing that we do or don’t do can really prevent cancer.  It is just an accident that happens in a cell.

I am keeping you in my thoughts and prayers.

Melanie  

 

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

Great words from Melanie. I also have my faith to give me strength but am not a churchgoer or have a specific religious faith. It has helped me immensely. I can't imagine not having that in my life.

At the same time what I see in my situation is that people want to help but don't know what to do. I go on Facebook regularly. I live vicariously through other people on there, I guess. Lol! But I keep my friends list short and only have people who are good for my soul. If I ask something on there I'll get a ton of responses. It seems like everyone wants to help. Some just text me directly but the fact is that they seem happy to be able to help.

I hope you're feeling a bit better Karen. Thank you for your kind words! And Melanie, you're a tough cookie! I hope everything will turn out okay for you, too. I also am stage 4 and have mets in both lungs, my liver and another one in the colon. It sucks but I can live with it.

Hugs to you both!

Jan

Twinzma
Posts: 210
Joined: Jan 2018

I am so sorry you don't have the support you need and deserve. Don't ever doubt yourself honey, it's on them. You are sick and if they can't pick up the phone to call you they are the issue. I belong to several support groups both for Jims cancer and for my own health concerns and it just breaks my heart how many people are struggling to get emotional support from their own family members. I could never! My mother is thorn in my side, real cruel to me but she is my mother and I still take care of her. 

It takes time with the therapist, but know she will get you feeling better. I don't come here as often as I did, it's because I am in and out of my dark place right now myself. I am seeing my doctor soon to go back on Antidepressents again, but know I am here, message me if you want to talk and I will get back to you. They may not be here for you....but I am! Hugs!!! 

Butt's picture
Butt
Posts: 299
Joined: May 2018

I don t have any family in this country and I wish I did. I have friends and let sctalk about close friends. A couple never check on me. One calls about once a week but never asks about my health and talks about other things. One who is a friend but not a close one texts me the same question over and over once in 2 months or so and the question is do you still work. The rest contact occasionally and want to know about my health some asks general questions done ask rather specific questions. It annoys s&&& out of me because all I have to do is fill them in on the latest news when I don t get anything  in return. And these is how it goes......Butt.

feckcancer
Posts: 90
Joined: Jun 2018

The best thing about the worst time of your life is that you get to see true colours of everyone

Karen, i often think of you & hope you are okay . My family is the same except for my daughter and it is very easy to feel alone. for myself i only spend time with people that really care for & love me . That is my family now. always here for you. xx

Butt's picture
Butt
Posts: 299
Joined: May 2018

I need to admit that after I got diagnosed it thru me off balance. When I am off balance I may burst into tears for no any significant reason whatsoever. I do believe that most docs, nurses, shrinks care To a certain degree. A matter of fact doctors leant in medical schoolhow to exercise empathy and show it thru certain body language, eye contact or certain well polished statements. They started to teach it wuite a few years ago.I am not saying all of them do so. But docs, nurses and shrinks go thru motions. They do their job. They have life outside of medical establishments. They have own problems and issues. It is nice to have a few people in your life who truly care and love you. In my situation because my family is overseas I have may be a Very few people who really care but I am not getting from them much help or assistance either. I used to like my oncologist. But I stopped liking him a few months ago because he is not helping me to come to the point where I want to be and it means being cured. It is my biggest wish! I understand that I can change an oncologist who probably will be less knowledgeable because the original one who also won t have a secret pill that can cure my cancer. I can t handle smells of that cancer center including the waiting area.It makes me sick. They say it is some disinfecting products. Overall, I am ok with smells and disinfecting products. I wanted to move for treatments to MD Anderson because I wanted a new environment. They said that they have the same treatments  and go back home. I guess if I were really insisting they probably would take me. But again I don t see they have anything fancy that can fix me. The pathetic part of who is going to take care of the person when they start clearly going downhill? There are home care agencies and etc. and let s day one can afford it but someone still must coordinate those things and monitor what exactly they are doing. I doubt that those gals who make 12$ per hour really care. I heard enough ugly stories when they are nice to you when a family is stopping by otherwise like to sleep or look on their I phone. I can go on. This thought is very scary for me. Butt. PS I always type on this forum from my phone. So, there are typos and no paragraphs.

beaumontdave's picture
beaumontdave
Posts: 992
Joined: Aug 2013

It's been 11 1/2 years since diagnosis and while I wasn't looking for friends to pop in more and didn't really want  many visiters during and after my hospital trips, I'm still bitter enough about the efforts of friends and some family regarding being there for Cindy. She liked contact and attention, and when it got hard, the visits were few and felt obligatory in their nature. When finally there, we  had idiots talking to her loudly like she couldn't hear or understand them. Humans are scared little animals as a group, shunning the very old, the sick, and the weak like we're still hunter clans in caves. Cowards, afraid to be discomforted by another's affliction. There, that felt therapeutic, lol.  Anyway, my cynicism doesn't keep me from being with or enjoying folks, I just don't ask for or expect anything. We did have the core family there, and that handful was enough. They have my undying love and loyalty. I'm sorry that all here don't have that group to lean on, this crap's hard enough with out feelings of abandoment, and zero support. Hang in there....................................................................Dave

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

Karen, I'm so sorry to hear the abandonment you're going through while battling cancer. I hope you're feeling a bit better since your post. I understand the support that we all need while we're battling. Just a simple phone call or a text asking how are you feeling would mean much. I know when I used to just get a text asking how I was feeling that it brightened up my day even when I was feeling like crap. I"m glad to hear that you finally found a good therapist. It helps to talk it out. You have all of our empathy from here. 

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