What do I do Now?

stacyjo

Hello to all who read this... I am at a place in life I never wanted to be, like all of you. Well,maybe not like you. I don't know, everyone feels different and I am so darned confused, hurt and scared and any other emotion you can think of, that I just can't get to come out of my fingers on this keyboard.

On 9/17/09, the love of my life, literally, got "the news". He went to another dr. for a 2nd opinion and without doing a biopsy, they both believe he has cancer of the larynx(voicebox). The lump is about the size of a pea. WHAT DO I DO NOW???

He has surgery 10/20/09 to remove it and then we wait for the pathology report to come back. I guess my first set of questions will be to you all is: How do you deal? What do you do? And why am I lashing out at him? Its not like its his fault he got cancer!!! I am so moody right now. I am trying hard to be the rock for him. But who is my rock? I have known him most of my life. ( I am 36, he is 54). My earliest memory of him is from when I was 5 years old. He was my idol. He and my mom and his parents were good friends. We stayed in and out of touch over the years, until July 2008. We have both been going through bad divorces, and connected. Since then, its beeen wonderful. well,until....

I realized last year that I have loved him my entire life, in one way or another. And now, I don't know what is going to happen... I know I will be there...that goes without saying. But what do I do now??? This waiting is eating at me....

I would just love to be able to talk with someone about this... I am scared and alone. I am afraid to tell him what I am feeling, because I don't want him to think I am weak... HELP!!
~Stacy Jo

trish07

One Thing At A Time...
Stacy Jo, to start with there is someone spamming all the boards right now by the name of "username32", so you may have to repost this topic when csn gets rid of this invader.

I have been taking care of my husband for 2 years now,he was diagnosed with a rare cancer at stg. lv. Was not expected to survive long. It is a difficult road for one with cancer and for you as the caregiver also. It is difficult to be "the rock" 24/7 and you are just beginning this journey.

At this point don't jump to conclusions, they may very well have caught his cancer early enough that the surgery will render him cancer free. Or maybe they will also have him do some rounds of chemo after surgery to make sure all is clear. What I can tell you is try not to linger on all of the things that "might come up", YOU CAN ONLY DEAL WITH ONE TASK AT A TIME...then when you conquer that...you will deal with the next.

Be kind to yourself. Look at this as you and him as a team and together you are going to fight this, one day at a time. You will have times that you will feel strong enough to fight a tiger and moments when you feel you can't go on. But you will, you can do this... and when you need to vent or just tell about your day, come here for the support of other caregivers that have been and are where you are now.

We will be "Your Rock"

Take Care, Trish

B 1

You are NEVER Weak!
Find a support group and if that does not work find a counselor. Someone who does not have a personal connection to you and who can look at things objectively. We are not invincible, even if we think we are. I came home and yelled at my husband, who by the way does not deserve that. He is running my house completely and totaly.

You can only deal with Today!! and sometime this moment. Don't try to worry about what is going to happen tomorrow or next week. And tell him you are scared and alone, you will be surprised cause he is probably also.

I am my mother's primary caregiver and doing from 70 miles away. Really helpfull, aint' I. I travel to her apartment twice a week. She was diagnosed with Stage IV Breast Cancer in September, already had the Modified Radical Mastectomy on the left side with complications. Three days after the surgery she started to bleed internal and they had to open her back up to stop the bleeding. I stayed for 7 days, and that was only two weeks ago. Oncology appointment is not until the end of October.

SonSon

pre-emptive grief
Stacy,
You are experiencing pre-emptive grief...anger. You recognize subconsciously that this love of your life may be abruptly taken from you and dangit you are angry.
Keep posting to the boards and talk it out to yourself so that you can understand more what you are going through and can be more loving to your love and connect with him and be his rock.
Fatima

stacyjo

trish07 said:

One Thing At A Time...
Stacy Jo, to start with there is someone spamming all the boards right now by the name of "username32", so you may have to repost this topic when csn gets rid of this invader.

I have been taking care of my husband for 2 years now,he was diagnosed with a rare cancer at stg. lv. Was not expected to survive long. It is a difficult road for one with cancer and for you as the caregiver also. It is difficult to be "the rock" 24/7 and you are just beginning this journey.

At this point don't jump to conclusions, they may very well have caught his cancer early enough that the surgery will render him cancer free. Or maybe they will also have him do some rounds of chemo after surgery to make sure all is clear. What I can tell you is try not to linger on all of the things that "might come up", YOU CAN ONLY DEAL WITH ONE TASK AT A TIME...then when you conquer that...you will deal with the next.

Be kind to yourself. Look at this as you and him as a team and together you are going to fight this, one day at a time. You will have times that you will feel strong enough to fight a tiger and moments when you feel you can't go on. But you will, you can do this... and when you need to vent or just tell about your day, come here for the support of other caregivers that have been and are where you are now.

We will be "Your Rock"

Take Care, Trish

I cried...
Thank you for your support, all of you... Upon reading your responses, I sat and cried. Why? Because of so many things. Because I'm sad, because I am realizing that I am not alone in this fight with him. We talked a bit today about how I want to be strong, but maybe sometimes I can't be. And you know what, he UNDERSTOOD. I am angry that I may lose him, but I have also come to the realization that I can not fix everything. I guess I was afraid to tell him I how I really feel for fear that he would think I am weak, not strong enough to be there. I know he does not want to see me hurting, nor I him, but together, we can get through anything.

Again thank you for your response. It is a warm feeling to know that I can go somewhere and vent, and talk to people who know what I mean, and can and will help. Someday I will be able to do that as well. Being there really does mean a lot!!!

May God bless you and keep you very close to his heart. I know that I will.

stacyjo

B 1 said:

You are NEVER Weak!
Find a support group and if that does not work find a counselor. Someone who does not have a personal connection to you and who can look at things objectively. We are not invincible, even if we think we are. I came home and yelled at my husband, who by the way does not deserve that. He is running my house completely and totaly.

You can only deal with Today!! and sometime this moment. Don't try to worry about what is going to happen tomorrow or next week. And tell him you are scared and alone, you will be surprised cause he is probably also.

I am my mother's primary caregiver and doing from 70 miles away. Really helpfull, aint' I. I travel to her apartment twice a week. She was diagnosed with Stage IV Breast Cancer in September, already had the Modified Radical Mastectomy on the left side with complications. Three days after the surgery she started to bleed internal and they had to open her back up to stop the bleeding. I stayed for 7 days, and that was only two weeks ago. Oncology appointment is not until the end of October.

thank you
Thank you from the bottom of my heart. You sound like you are doing a great job with your mom. Living over an hour away and driving 2 times a week must drain you in itself.
I hate that I have been, let's say, very difficult lately. I even got jealous of his sister! They have had a somewhat distant relationship for a bit, and now that they are reconnecting, I am extremely happy about it. But yesterday, I spouted off like some maniac about being jealous of him and her getting to spend so much time together! What a fool I was.
Thank you for letting me realize that it is okay to tackle one day at a time.

May God bless you.

stacyjo

SonSon said:

pre-emptive grief
Stacy,
You are experiencing pre-emptive grief...anger. You recognize subconsciously that this love of your life may be abruptly taken from you and dangit you are angry.
Keep posting to the boards and talk it out to yourself so that you can understand more what you are going through and can be more loving to your love and connect with him and be his rock.
Fatima

yes, anger is my name right now
Yes, I am very angry. Its a good thing that my mirror can not talk back to me. I have yelled and carried on like a mad woman these last 3 1/2 weeks.

God bless.

junklady

stacyjo said:

yes, anger is my name right now
Yes, I am very angry. Its a good thing that my mirror can not talk back to me. I have yelled and carried on like a mad woman these last 3 1/2 weeks.

God bless.

Stacyjo- I'm angry too
Stacyjo- I am angry too. Also frustrated that I can not do more for my Dale. I hate to see him the way he is. I am sad and cry a lot. He always says "don't cry", so I go outside. I have a journal that I write in everyday, it is my silent way of venting. I seems to make me feel a little better. I make a to do list for the day, every little project takes my mind away from the illness. Dale has end stage laryngeal cancer, and I know some day I will be without him, breaks my heart. I know there are no perfect words of comfort, but know you are not alone. Somehow we, the caregivers, have to be strong. I do whatever it takes. This site is very good for venting or whatever emotional support you need. Hang in there.

sue Siwek

you are not weak! all you
you are not weak! all you can do is love him and be there for him. you do need someone to talk to and not just on this site. where is your family and his? ask them for their love and help. if they are unaware of what is going on due to an estrangement, tell them so that they have the opportunity to make things right. you must have someone who can comfort you. also, call hospice they can give you some relief as well. i am sure since the diagnosis that he is fearful of his own mortality and that maybe you won't stick around. all you can do is reassure him and love him. good luck.

stacyjo

junklady said:

Stacyjo- I'm angry too
Stacyjo- I am angry too. Also frustrated that I can not do more for my Dale. I hate to see him the way he is. I am sad and cry a lot. He always says "don't cry", so I go outside. I have a journal that I write in everyday, it is my silent way of venting. I seems to make me feel a little better. I make a to do list for the day, every little project takes my mind away from the illness. Dale has end stage laryngeal cancer, and I know some day I will be without him, breaks my heart. I know there are no perfect words of comfort, but know you are not alone. Somehow we, the caregivers, have to be strong. I do whatever it takes. This site is very good for venting or whatever emotional support you need. Hang in there.

journal
Junklady- I look at the picture on your profile and I smile. The 2 of you look like you are so in love, so fun and so strong. I get the "don't cry" too. I know its not because he doesn't want to see it, its because he doesn't want to see me hurt. Merle actually told me to go and find a younger, healthy guy when we first got the news. I am here for the duration, I told him...like it or not! Thank you for the journal idea. I think I will do that on my computer, and who knows, everything happens for a reason, someday, something good will come of this... and the to do list will help being that I can see what I have to do instead of trying to remember it... too many things to remember now as it is...
Tell, me though, do you write "breathe" on that list too??
Once he has surgery on the 20th, and the path reports come back, we will know where to go from here... not kowing is very hard!

God bless you and Dale. Take care and I hope to talk to you soon...
Stacyjo

stacyjo

sue Siwek said:

you are not weak! all you
you are not weak! all you can do is love him and be there for him. you do need someone to talk to and not just on this site. where is your family and his? ask them for their love and help. if they are unaware of what is going on due to an estrangement, tell them so that they have the opportunity to make things right. you must have someone who can comfort you. also, call hospice they can give you some relief as well. i am sure since the diagnosis that he is fearful of his own mortality and that maybe you won't stick around. all you can do is reassure him and love him. good luck.

family
My family is just kinda sitting back and waiting to see what is going on with the path reports. His mother and step father are deceased and his father is staying at arms length away. The ironic part is that the day he went to the specialist, and got the news, his 1st grandchild was born. So his daughter is trying to be there, but we are cautious with that because it was a hard delivery. My son, who is 8, told me yesterday when he caught me crying in our garage, that its okay. Its going to be okay. Merle is a strong man and that he can beat this. I felt relief, if only momentarily, in knowing that my son believes so much in this man, and that he looks up to him. Thank you for your reply to my initial post. It helps knowing that others have trekked before me and I am making a path for some.

God bless you

grandmafay

Beginning
Stacy Jo, You are just beginning this journey, and it is a journey. Cancer is a scary word. Even if the tests come back negative. The fear and anger is going to be there along with the relief. Cancer makes us all realize that we are not invincible. We live our lives forgetting that we are all terminal, born with a prognosis of death. An important thing to remember, though, is that cancer treatment has come a very long way. It is no longer a death sentence. You would be surprised how many elderly cancer survivors there are. It is treatable and beatable. As others have said take this one day at a time. Share your fears and anger with your loved one. Those we care for are often scared and angry, too. And it's even ok to lose it once in awhile. We all do that. Take care, and I wish you good news. Fay

CherylMike

My husband has head and neck cancer
Hi Stacyjo~ I have gone through all the emotions that you have described - loneliness, being terrified, confused, angry, sad. . I think this is the way that a person tries to understand and cope with the challenges that cancer brings with it. Luckly for me, it seemed most of the time that when I was really down, my husband was having a "good" day and could help me - visa versa. I also spoke frequently with his mom and sister - they are incredibly supportive. I remember waiting for tests results. Those LONG days were so hard. You think the worst and are so scared. About the only thing that helped me was to try and get my mind away from the circumstances, if only for 5 minutes. I went to the library and stocked up on books - mysteries, easy-to-reads. . I also would turn on the stereo to my favorite CD's and clean the house. Renting a great comedy and watch it holding hands with your husband. The cancer is always in the back of my mind, sometimes I can push it away for bits at a time - this really helps. Please know that you do have options. There are treatments designed specifically for head and neck cancers. My husband and I have discussed his options along his path. I think as time goes on, that gets easier. I learned that my best rock was my husband as I am his. A doctor once told me that once you are diagnosed with cancer "Elvis has definitely entered the building". You now have a "new normal" (if that makes any sense). I will pray for you.

train-nut

stacyjo said:

family
My family is just kinda sitting back and waiting to see what is going on with the path reports. His mother and step father are deceased and his father is staying at arms length away. The ironic part is that the day he went to the specialist, and got the news, his 1st grandchild was born. So his daughter is trying to be there, but we are cautious with that because it was a hard delivery. My son, who is 8, told me yesterday when he caught me crying in our garage, that its okay. Its going to be okay. Merle is a strong man and that he can beat this. I felt relief, if only momentarily, in knowing that my son believes so much in this man, and that he looks up to him. Thank you for your reply to my initial post. It helps knowing that others have trekked before me and I am making a path for some.

God bless you

The Future
Stacy Jo,

You've received a lot of great posts from some very nice people. As a stage IV H&N survivor I'm here to tell you YOU CAN DO IT. Perhaps the two of you can make some marvelous post-treatment plans...something to look forward to. Best of health to you and yours, Rich