get it together HOW

zinniemay

Tina Blondek said:

Hello ZinnieMay
First I
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

I am just me
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

zinniemay said:

I am just me
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

Hate the Waiting
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

grandmafay said:

Hate the Waiting
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

ssay it again
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.

kimmygarland

Pennymac02 said:

Me too
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.

Sounds like we are all
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

kimmygarland said:

Sounds like we are all
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.

Hospital
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

zinniemay said:

Hospital
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!

New here
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

Mrsbourceforce said:

New here
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.

New here
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

zinniemay said:

New here
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

Thanks for understanding
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

Mrsbourceforce said:

Thanks for understanding
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.

Still
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

Mrsbourceforce said:

New here
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.

Hope
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

grandmafay said:

Hope
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

Hope
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

grandmafay said:

Hope
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

Thank you
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.

Mrsbourceforce

kimmygarland said:

Hope
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))

Good luck
I'll be praying your husband does well!