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get it together HOW

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

How do you get it together? I am having one of the days no one wants . I feel so alone even the dust left the room. I want to just cry and scream and maybe kick a door , but I know I would have to fix it. I am so sure I am lossing my mind or at least forgot where I put the darn thing.
I am so sad and can not explain why , So lonely So very very lonely. All the what if's and whys seam to hit me in the head today.
Is it just one of "then" days or is others feeling this way? How can I control this and put on a happy face.

kimmygarland's picture
kimmygarland
Posts: 313
Joined: Aug 2009

I've had several of those days myself. I have a good cry (a messy, bawling, cry) and I feel better afterward. I go in the bathroom or outside or even to my car. A couple of times he has realized Im breaking down and we comfort each other.

Others have told me to just think about one day at a time. THIS day, he is ok, this day there is enough money, this day he can eat, this day he feels good.... etc.

I will probably be a basket case as we get closer to surgery on the 15th, so please remind me of this!

Hang in there and know that you are not alone and we understand. ((HUGS))

Barbara53's picture
Barbara53
Posts: 659
Joined: Aug 2009

I think we just naturally start grieving terrible things before they actually happen, and that the advance freakout is part of the process. You sound normal but in pain to me! I hope this link is easy to type, to a Wendell Berry poem about the peace of the wild things, who live in the moment and don't experience grief until it comes. Helps to quietly put things in perspective.

http://www.gratefulness.org/poetry/peace_of_wild_things.htm

Pennymac02's picture
Pennymac02
Posts: 336
Joined: Aug 2010

Maybe we all have too much holiday down time because of the long weekend, but I'm going through this today, too. I'm really tired today because last night was one of those "sleeping with one ear open" nights because he was so uncomfortable, and Tues and Weds of this next week we're going to go back for the CT to see if the embolization slowed the tumors and I'm desperately trying not to look ahead with worry. I am able to focus on living in the moment for a short time, and then my brain takes off on another "what if" tangent and I have to make my gratitude list again and reel in my thoughts back to just for today...

Thanks guys, for posting that you felt this way; I was feeling kind of alone with it.
Penny

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

I pposted it because some times I have a pity party and no one comes over ! I get so down I feel bad. Then I read their are others who feel this way. I have a small moment where I can say to myself I am "Normal"
It means allot to hear I am not alone (bad for others) BUt it helps me to know If I am crazy then I am not alone.
We had some upsetting news Friday Of course it is a Holiday weekend gives us a extra day of worry. Cause the place we need to go to is closed for the holiday. I worry all the time but when he worries it stresses me so much . He gets really down in the dumps and I follow! Hopfully we will get it strieghten out Tuesday.
But I want you to know you guys made my day I am alone but not so alone!

kimmygarland's picture
kimmygarland
Posts: 313
Joined: Aug 2009

I have found over the last 14 months that being the primary caregiver is a lonely job. Even though my husband tries to not isolate himself, he does somewhat. Between that, and other people truly not understanding, it is lonely. My family and friends THINK they understand - but as we here know - they really don't unless they've been here.

It's so helpful to come here and have others that truly do understand.

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

I just have this empty feeling , and I worry over all things and anything. I have always worried but somehow could control it not now. So Have the all this things running thru my head . I can't even think.

Pennymac02's picture
Pennymac02
Posts: 336
Joined: Aug 2010

My therapist has reccomended a book that I've been reading called "When Things Fall Apart" by Pema Condron. It a little different philosophy than I'm used to, but it talks about finding peace and acceptance regardless of ugly difficult situations and seems to be helping me. I am trying to cope with life on hold, not knowing the extent of the cancer, whether he'll be eligible for a transplant, whether its metastisized, we don't even know what stage it is yet, because we are dealing with the VA and they just don't communicate. The radiologist said 6 months to 2 years, but you know how that goes. Nothing concrete. I've even pulled his medical records to find out and still don't have the info I need. So the constant worry over what I have no knowledge or control over was making me lose my mind, literally. I have posted before about just struggling to stay in the moment, it's an ongoing battle and I have to remind myself of my decision to live in the NOW almost constantly. But it's the only way I can keep from having those thoughts run through my brain over and over.

Keep your chin up!

Barbara53's picture
Barbara53
Posts: 659
Joined: Aug 2009

Oh, Penny, I know. My battle-scarred late stage ovarian mama got a new chemo on Friday, and I'm spending the weekend keeping her calm and quiet because the poor thing is having scary cardiac complications. A Labor Day to remember, huh.

kimmygarland's picture
kimmygarland
Posts: 313
Joined: Aug 2009

Pardon my french.
Penny - thanks for the mention of the book, I am going to see if I can find it.

Hang in there.

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

Just having a few bad days I guess I have to think they all can't be good ones . Just the hard truth of life.
I except allot of things and this is one that is not easy for anyone to except. But sometimes we are drained so much that we just slip into that bad mood and nothing gets us out of it.

Noellesmom
Posts: 1317
Joined: Aug 2010

There it is -that element that makes us realize we are human even if we feel we are asked to do what seems to be superhuman things!

Zinniemay, I'm sorry for your rough day. I agree with Kimmy - too much weekend and getting off our schedules. It throws everyone.

Gentle hugs coming to you. Bunches of them.

Tomorrow is another day (said Scarlet)...

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

Thank you giuys what you do is reassume me that I am not going out the deepend or if I am allot of people are going with me.
I was born a worrier I can not help it I have O.C.D. ANd suffer depressiong before all this.
My husband is good he has always been the glue that binds us. And on a personal note it was a hard weekend, Not medically. He goes Thursday for Chemo and we are praying, that he will be better .
But sometimes I think Holiday weekends you realize who your friends and family are. And if you are like me far away from family . Well you know. I am not sure they would be that much support if I lived closer to them , but nice to think they would.
Thanks all of you.

grandmafay's picture
grandmafay
Posts: 1629
Joined: Aug 2009

I have always been the family worrier. I was the family worrier on steroids when my husband was fighting colon cancer. At first, I didn't only worry about the cancer, I worried about everything. Every change in my routine had me overwhelmed. The roller coaster ride of good times, bad times, and not knowing times was really difficult. At some point, my husband started saying to me, "Let it go dear. Just let it go." I really tried to adopt that philosophy. I even succeeded to a point. In fact, I still hear him saying that to me now. It does help. I agree that we all need to try to live in the now. It is not easy. Little things use to set me off, things that really didn't matter all that much. I can still get wound up about those little things. That is when I hear the let it go statement. I guess my advice for what it's worth is hang in there, try to appreciate today, and let those little things go. Let the big things go, too, if you can't change them. Easy to say. Hard to do. Gay

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

Gay,
I have read your post and I take allot from them. I was never a worrier till I had my daughter then my son and next thing I know I worried oveer everything. Slowly it became else cause I always had my husband to complain to. So now the worry is at everyone little thing. But you are right. I have to keep pushing myself to remember change the things I can and let the rest go. It is not easy and tyhere are days and some times weeks that I am so presured by all that is going on . I think this is it! I have had it I can't take anymore. and then the next day comes ever so slowly. But it does come and I can regain myself. I worry to much over some of the silliest things.
Anyway I want you to know I do hear you and I think you give us alot of comfort. I don't know if anyone has said that to you before. But I think you have done more for us than you even knbow.
Jennie

karenbeth's picture
karenbeth
Posts: 194
Joined: Sep 2010

Ah, this post and the responses really hit home. Over the past few months I feel I've come to intellectually accept what is happening, but emotionally I am all over the place. It doesn't take much to send me from calm to despairing or on the verge of tears. My partner doesn't like me to cry in front of him over his illness, but he knows that sometimes I can't help it. When I am in a bad place I try to talk it out with him or someone else. When he was first diagnosed and out of the hospital, the first morning I was going back to work I had an anxiety attack. I have since gone back on anti depressants that I had gone off of a while ago. I am doing everything I can to keep on an even keel; otherwise I know I'll be of no use to anyone. However, I know some days or moments will be bad and I just have to see them out.

kimmygarland's picture
kimmygarland
Posts: 313
Joined: Aug 2009

About 10 days ago I went to my PCP and got a very small dose/mild anti depressant. It has helped me tremendously. I have not had a crying fit in several days. It has really evened me out to where I am able to be positive with my husband and not be so emotional, which he hates.

I am still worried, scared and all those things, but I seem to be dealing with it more on an intellectual level like Karen said, than all the emotional stuff. I feel much better and think I am much easier to get along with, and much more helpful to my husband. (Which will be become even more important after his surgery.)

There is no easy answer to any of this and frankly, I don't see how we will get out of this without some sort of PTSD.

One day at a time.....

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

I don't ask for help because I usually am the one ro help them and get nothing from anyone except for what can I do for them. no one in the family calls anyone unless they need something. That is just so wrong.
This is a post I got frrom a cousin, Now this is what I know of her 8 siblings all but two live with in miles of me. She found out she has cancer.This month.
What is the problem? Last year while finishing chemo and rads, My husband and I went to her mother's funeral and did all the things we though we could. But not once then or up to now did or have they asked if we needed help.
My neice who lives about a hour away could always find tine to drop her kids of here for us to watch for the weekend. Her in laws live 8 miles from us. They go visit them but I have not seen her since before Greg found out he had cancer. Her kids are older now so the in laws like having them around.
My brother was going to come up but planned on bring a step grandchild (One year old) I said I don't do babies Greg immune system is down so Now not speaking to me!
I came from a family of 9 there are 6 left. They don't call or anything usless I can give them something.
Friends well the few I have One said her husband would be home she was going to come over , well she did for a hour cause they were going to a friends so though they would stop by (three days late).
Greg was so sick but a friend need a thing moved (required five trips up and down a basement and three times out side) and two door locks . As sick as he was he did it for her. Our thanks three times she said she was going to come by . Ha still waiting!
What is up with people? Seams if you know how to use people you have it made.
Vent one two three Vent!

Tina Blondek's picture
Tina Blondek
Posts: 1561
Joined: Nov 2009

Hello ZinnieMay
First I wanted to tell you thank you for making me laugh today. I read your first post, sorry you were having one of "those" days, but when I read even the dust left your house, I was laughing! I know too well the same feeling. Yesterday was the 6th month mark that my dad has passed. It is so hard. Again I felt that ache in my chest, or the feeling that I would wake up and he would still be here. You have to have a sense of humor to be able to deal with all of the things us caregivers have to do daily. Hope today finds you a little better. You can always come here, we will be waiting for you. Keep in touch. And...let me know if you find your mind....I think both of our minds might be together! You have to laugh, it seems to make it all a little better.
Tina

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

Tina, I am just me I love jokes and to laugh , I find it hard to do that now days but still want to laught and see others laught too.
The dust had not left I found it hiding in the closet! When I tried to get it well a new story began, The dust did put up a good fight but I won! My cousin and I use to chat all the time. She would kid me about Martha Stewart. So That is how dust entered my life. I said my house was do dusty That it would make MArth sick!
Greg had Chemo yesterday and a ct scan , The last time they said we will call you Monday or Tuseday , But they called Friday cause it was good news, So Now we set and wait! I know that everyone can relate to that feeling. So I feel better but have a reseveration to the nut house cause my brain and thoughts ran away. Pretty sure they are hiding out with the dust,but I don't get it cause I change my mind all the time!
I am always trying to feel better but some days get the best of me and I vent a little to much. I have a petty party and who who comes Dust everytime!
Thanks see even your words put a smile on my face cause you got it!
Thanks for making me smile back at you

grandmafay's picture
grandmafay
Posts: 1629
Joined: Aug 2009

I really hated the waiting. One thing I really liked about UCSF was that they would do my husband PETCT early in the morning and give us a late afternoon appointment to see the dr for the results. They did that because we lived a ways away, and returning another day was an inconvenience. We really appreciated that because others didn't seem to care a lot about inconveniencing us.

A sense of humor is the only way you get through this. Laughing is the world's best stress reliever. I remember one time we walked out of the doctor's office, got on the elevator, looked at each other, and started laughing. We weren't sure if we were given bad news or good news. It was one of those good news,bad news things. I also have a picture from my birthday when we stopped for dinner on the way home. We are both laughing in the picture. No one there would have known that we had just been told that his cancer had returned again. I know from looking at the picture that Doug had just made some joke. He joked and teased right up until the last day. Those are the precious moments and memories that I have. So keep that sense of humor going. It really helps. Fay

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

Fay, You are so right, I forget it at times and turn it to venting! It is not good for me cause the more I get mad the nastier I see myself. I always love to hear a good joke and love to tell them. I am the totally different from my husband . I can see his way of thining but I also know there is more to life than just living. We need music, laughter and good friends. I try not to have negative thoughts but he has so many he pushs onto me. Then I worry about him and then me it gets to much. I think I can not do this anymore. So I try to remember laugh at least once a day, smile at someone say how ya doin, But once in a while I my humor gets lost , I bet the dust stole it.
I am sorry about your husband, I know you miss him . I read your post . I am so glad you are on this site . You are a leader . You Help all of us. Thanks Fay for your kind words.

Pennymac02's picture
Pennymac02
Posts: 336
Joined: Aug 2010

Got to my PCP yesterday and got my medication as well. I also found out that my blood pressure, which is usually "high normal" was through the roof. She wrote a note for me to stay home from work, said go home and take the anti depressant and start on this BP medication. (It kinda made me more depressed and anxious to find out about the high BP LOL) Anyway, I did as she suggested, started to read a book, and woke up four hours later. I'll be taking that at dinner time from now on! Hopefully it will get better once my body gets used to it.

kimmygarland's picture
kimmygarland
Posts: 313
Joined: Aug 2009

in a similar boat trying to deal with this.

Grandmafay thank you for helping us get through this. Your posts are so helpful.

I am feeling a big less 'out of control' since I started on the mild anti-depressant a week ago. As we get closer to the surgery (9/15) I can tell I am getting a bit more anxious and I expect the tension to continue to build as we get closert - but at least I am not feeling like I want to go running off screaming into the night!

We'll get through this, one day at a time. ((hugs)) to everybody and I hope you can find a minute or two for a little relief this weekend.

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

You know I feel bad when we go to the hospital and see all these people all ages , all everything. I watch and I look and I see fear in some of their eyes. I do make a point of chatting with them, Some times Greg's story and stuggle makes them know some one has it harder, and sometimes when they tell their story I think how lucky we are.
The other day (Thursday) While there a lady was waiting for a ct scan, I think she acted a little scared, and Said are you ok she could not really mustare up words and shook her head. I asked her if she would like a book (Family Circle) She took it. They called her name she left with the book. Then we my husband was done he handed me it to me. He said when they call them back there they wait in another room men have a room and woman have one to. He saw her he said she was so scared. He talked to her hugged her . Gave her our phone number. Her story was so sad. But the point is that even as bad as it seams we can find comfort in others and offer comfort to them too. I take magazines every time we go and leave them for others. There are so many little things we can do all it takes is to start by saying something. I know if we are scared then chances are other are too. I know some face this along, Some people have no one at all. I learn this week my cousin have cancer on her back and breast . Last month my other cousin found out her Kidney cancer has spead to her lungs. It is a wake up call for all of us. to start reaching out and trying to help even in the smallest of ways. It still matters.
Thank you all for being my strongest guild in all these things. I will try harder to vent more positively. The Grass is always greener over the septic tank!
This is my thought for today!

Mrsbourceforce
Posts: 19
Joined: Sep 2010

Hi all.. My husband who is 43 was diagnosed a few weeks ago with a very rare and agressive grade cancer. He has liposarcoma in his lower leg. We have 2 children 10 and 13. This is terrifying on so many levels. He is starting radiation tomorrow and will have surgery in about two months. At best he only has a fifty percent chance that it hasn't already spread, to show up later in his lungs or liver. He is being treated at the university of Rochester Wilmott cancer center. I am making him go see a specialist at Roswell Park cancer center in Buffalo for a second opinion. The hardest thing for me is to act normal and not bring everyone around me down especially him and the kids. It's so hard to put on a positive face when I have such a terrible feeling about his prognosis after researching it. I'm still in an angry stage as well.. I look at people who don't take care of themselves like he has and want to stomp my feet and yell " it's not FAIR!" Why did he get sarcoma which is rare, why liposarcoma, very rare, and most of all why the highest grade of liposarcoma which is extremely rare?! Pointless to be mad but I am anyway! And mad at all the other families who are going on normally, while I have to be secretly trying to figure out how I'm going to financially support our kids if he doesn't make it. It's good to be able to vent to people who understand.

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

I have no answers for you, I was so scared the first time and the doctor said cancer, We cried and tyry to hold it together . We had it Only to find It mets to the lungs.
We try to take each day at a time . Find joy in the little things . I am not perfect and I vent on here way to much. I know this is new to you and you are so scared and I don't think anyone on here would not understand your feelings we all have the same feeling and still do no matter the age, my husband just turned 57. So age does not make it easier .
I think taking him for a second oponion is a good ideal. These worries you have are all normal in this unnormal world we have entered.
You never know what families are going on normal, some hide the fact that love ones are sick. They shelter their feeling so not to show how scared they really are. I see it everytime We go to the hospital.
I have walked this path before, My father and my mother died of cancer, but I did not live in their home so it was easier to put on a happy face and go about things I did not have to watch them suffer they lived 800 miles away. So now to watch my husband , I am scared too. Our childred are grown. It is the what if's that will scare you.
I am sure this is not much help. What I want to say is you will get thru this and each day you will understand more , it will not get easier but your understanding will help. I am so sorry you had to join this group but I know you will find comfort and help along the way.

Peace
Jennie

Mrsbourceforce
Posts: 19
Joined: Sep 2010

Thanks for understanding Jennie. I know age doesn't help, but it just makes it all the more devastating to think how our children will be affected by this.. And may have to grow up without their wonderful father.

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

My heart breaks everyday for people I never knew or got to know. That have been stricken by cancer as well as other reasons.. I can only hope that there is a cure for cancer and they find it fast.
I can tell you I have learned more from this site that I ever thought I could. My husband has t4nimo Squamous cell cancer of the Larynx metastic to both lungs. Three months ago I would not have knew this.
Learn to ask questions, don't assume anything. I see on here where people were given months to live and they are still living . I see on here many wondiful people who are in the same boat as we are stuggling to understand why me? My husband did not smoke, drank or anything that one would think caused his cancer. His came from H.P.V. as you learn and read more you will learn about this too.
I have questions and no answers for them. I was once told the only dumb question is the one unasked.
To me it is in our hardest times that we find the best of people.
Peace be with you
Jennie

grandmafay's picture
grandmafay
Posts: 1629
Joined: Aug 2009

First let me say how sorry I am that you and your family are now a part of the cancer family. Now let me offer some hope. Fifty percent may sound like a low percentage to you, but many cancer survivors here have beat those odds and even lower ones. What you find in literature or even on the web are dated. New treatments and protocols are being developed all the time. I guess that I am a glass is half full person. That is not to ignore your fears and anger. Of course you are scared and angry. You are also grieving the loss of your life before cancer because your life is forever changed whatever the prognosis. Right now, just take one step at a time. Deal with the now. Once you know exactly what you are dealing with, you and your husband will have a plan. Then take it one day at a time, one hour, even one minute at a time. Try not to think too far ahead. I know that is not easy. When my husband was diagnosed, the literature all said 22 months with less than a 9% chance of a five year survival. He did beat those odds by living a little over six years. I don't say that to scare you even more. I just want you to know that I do have some idea of how you are feeling. Even though my husband eventually lost his fight, I still have hope for others. I will hold you in my thoughts. Fay

kimmygarland's picture
kimmygarland
Posts: 313
Joined: Aug 2009

My heart goes out to you and your family. So sorry you are having to deal with this monster.

My husband is fighting the battle for the second time (having a recurrence), so we are in a scared and unsure mode also. He's having surgery Wednesday.

Hang in there and always remember, it's not about the statistics, it is about your husband. Just because statistics say 50/50 that doesn't mean that's what it will be for him.

((Hugs))

Mrsbourceforce
Posts: 19
Joined: Sep 2010

I'll be praying your husband does well!

Mrsbourceforce
Posts: 19
Joined: Sep 2010

I can't believe how kind you all are.. I didn't really expect anyone to respond. I know I should be a glass half full but it's hard for me! I think the worst is that from all the studies I have read the 50 percent is really a 5 year survival rate. When you get to 10 years it's more like 25-30 percent. I'm looking into the possibility that chemo might give him a better chance. It's still controversial for sarcoma. It's so hard to figure out who to talk to about it. Thank you all for understanding.

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