after the cure

woodchip

how do you deal with the people you love who only want you back the way you were and even more productive to catch up financially in the time lost due to cancer ? My hands are my trade ---Master Carpenter

HeartJourney1

I don't know.

I don't know how to get myself back to "normal". To be honest, I don't feel like I'll ever be the same again. I feel as tho I've lost another big part of myself in this process called surviving. And I don't know how to convey my feelings to others.

I don't know how to even explain to myself, let alone anyone else, that now, cured, I should be theoretically jumping for joy. And yet I'm so filled with despair. I know intellectually why: in my case I am in forced menopause. I'd rather have 1,000 hot flashes than this emotional collapse of what I was.

So if you find any answers, please... share them with me.

Unknown

I sooooo understand what you are saying.
I was diagnosed with cancer 3 times over 10 years, undergoing 2 major surgeries, chemo, rads, tamoxifin. I am now NED (no evidence of disease) for over 10 years. But people STILL do not understand that I am not, and never will be able to resume all the usual functions of life.
The general consensus is that once you are 'cured', all is as it once was.
That is one reason this forum is so important. Only those of us who have undergone this trial can really understand each other's position.
You might like to join us in the csn chat room. You will find many supportive, understanding people there.

terato

I was first diagnosed in 1980. My employer, at the time, did not consider me productive enough, so he terminated me, but "allowed" me to retain my group health coverage. It took quite a long time for me to find employment, even when I concluded chemo. My psychiatrist actually said, "Why are you depressed, you survived?" My wife left me, which turned out to be a blessing in disguise! No one ever allowed me to grieve the loss of my testicle, lymph nodes, the ability to father children. I was only 28 at the time, damn it, and I could not even ejaculate! By what right did my boss, wife, her family, my psychiatrist have to question my "right" to be depressed?

I went through the same crap following my brother's suicide in '94. People just wanted me to "get over it". Had I found him on the battlefield, they would have called it PTSD. However, I found him in his apartment with an electric cord around his neck, so I was supposed to put it all behind me in a few weeks and get on with life.

Those who are unafflicted by sickness and loss often have no concept of what we go through. Fortunately, I found a good psychiatrist who recognized that I had never fully resolved my sense of loss about my cancer and could not even begin to deal with my brother's death until the earlier loss had been resolved. In the meantime, I had attempted to cope with my series of losses with alcohol and a series of dead-end relationships.

I recently lost my mother and refrained from getting drunk. I have also backed off from well-meaning friends who wanted to "fix me up" with unattached women friends, for now. If I ever do marry again, it will be when I am whole again, at least in heart, mind, and spirit. I guess I finally know myself well enough now to know when I am ready for further challenges. I pray that you will be, also.

Rick

HeartJourney1

terato said:

I was first diagnosed in 1980. My employer, at the time, did not consider me productive enough, so he terminated me, but "allowed" me to retain my group health coverage. It took quite a long time for me to find employment, even when I concluded chemo. My psychiatrist actually said, "Why are you depressed, you survived?" My wife left me, which turned out to be a blessing in disguise! No one ever allowed me to grieve the loss of my testicle, lymph nodes, the ability to father children. I was only 28 at the time, damn it, and I could not even ejaculate! By what right did my boss, wife, her family, my psychiatrist have to question my "right" to be depressed?

I went through the same crap following my brother's suicide in '94. People just wanted me to "get over it". Had I found him on the battlefield, they would have called it PTSD. However, I found him in his apartment with an electric cord around his neck, so I was supposed to put it all behind me in a few weeks and get on with life.

Those who are unafflicted by sickness and loss often have no concept of what we go through. Fortunately, I found a good psychiatrist who recognized that I had never fully resolved my sense of loss about my cancer and could not even begin to deal with my brother's death until the earlier loss had been resolved. In the meantime, I had attempted to cope with my series of losses with alcohol and a series of dead-end relationships.

I recently lost my mother and refrained from getting drunk. I have also backed off from well-meaning friends who wanted to "fix me up" with unattached women friends, for now. If I ever do marry again, it will be when I am whole again, at least in heart, mind, and spirit. I guess I finally know myself well enough now to know when I am ready for further challenges. I pray that you will be, also.

Rick

Wow. You guys do understand. Woodchip, I don't know about you, but I'm feeling understood and that in itself is good. Don't get me wrong - I'm not buying into any "misery loves company" attitude. I just really appreciate that you guys understand... makes me feel less alone, less lonely, less crazy.

Thanks :-)

soccerfreaks

Some nice answers, my friend. I hope that you heed them. But I think your problem is something else. You are speaking of finances and expectations for your return as the primary breadwinner, for starters, if I am not mistaken.

I am new to this site, and have been a cancer survivor for only most of a year so far, but my mother died of cancer and both of my sisters had cancer and my bsst friend had cancer, and I am convinced beyond doubt that one of the ignored effects of this disease is guilt. It blows me away that this is so, because one does not feel guilt for catching a cold or getting the flu or contracting whatever other virus or disease is out there, but there seems to be this guilt thing associated with cancer. I will tell you that I am surviving cancer of the tongue and neck, thus far, and that I smoked like a fiend and did my share of beer drinking, and so I know I brought my particular brand of cancer upon myself. And yet, I don't feel guilt about causing the cancer. I feel guilt about having the cancer and about what it has done to my finances and my family ... and I am a computer programmer married to a registered nurse! I HAVE great medical benefits and the opportunity to rehabilitate...and yet I went back to work two, three months before I was "supposed to"...out of guilt?

Look, it's not enough for you to get on this site and listen to the nice things people have to say about you. Your family, the people who do not understand, need to get on this site, too.

Let me tell them: I am not a master carpenter, I do not have to go out and work in a physical manner everyday. I merely have to sit at a desk and think and type...and yet...the days wear me out. My treatments are behind, but still...the days wear me out. I am never sure I will get through an entire day (okay, I may have some nutrition problems, with my particular cancer, but still)... you need your courage and your will to survive. Part of survival, eventually, is to get back up and be as much as you were before, as much as you are capable of. Nasty truth. Anything less is too much slack. But you will not be the same, as others have noted. And not just physically. They must understand that perhaps money doesn't mean what it once did to you. Life, escaped from death, may have given you a new perspective. They need to know that. Hard for you to tell them. But lots of others can. Starting with me.

HeartJourney1

soccerfreaks said:

Some nice answers, my friend. I hope that you heed them. But I think your problem is something else. You are speaking of finances and expectations for your return as the primary breadwinner, for starters, if I am not mistaken.

I am new to this site, and have been a cancer survivor for only most of a year so far, but my mother died of cancer and both of my sisters had cancer and my bsst friend had cancer, and I am convinced beyond doubt that one of the ignored effects of this disease is guilt. It blows me away that this is so, because one does not feel guilt for catching a cold or getting the flu or contracting whatever other virus or disease is out there, but there seems to be this guilt thing associated with cancer. I will tell you that I am surviving cancer of the tongue and neck, thus far, and that I smoked like a fiend and did my share of beer drinking, and so I know I brought my particular brand of cancer upon myself. And yet, I don't feel guilt about causing the cancer. I feel guilt about having the cancer and about what it has done to my finances and my family ... and I am a computer programmer married to a registered nurse! I HAVE great medical benefits and the opportunity to rehabilitate...and yet I went back to work two, three months before I was "supposed to"...out of guilt?

Look, it's not enough for you to get on this site and listen to the nice things people have to say about you. Your family, the people who do not understand, need to get on this site, too.

Let me tell them: I am not a master carpenter, I do not have to go out and work in a physical manner everyday. I merely have to sit at a desk and think and type...and yet...the days wear me out. My treatments are behind, but still...the days wear me out. I am never sure I will get through an entire day (okay, I may have some nutrition problems, with my particular cancer, but still)... you need your courage and your will to survive. Part of survival, eventually, is to get back up and be as much as you were before, as much as you are capable of. Nasty truth. Anything less is too much slack. But you will not be the same, as others have noted. And not just physically. They must understand that perhaps money doesn't mean what it once did to you. Life, escaped from death, may have given you a new perspective. They need to know that. Hard for you to tell them. But lots of others can. Starting with me.

Hey Soccerfreaks... I really liked your answer. And I agree: this would benefit greatly those around us so they have a better understanding.

I am finding that people aren't really comprehending the fatigue. I didn't just have a hysterectomy. I had cancer. I was sick. I was so tired. Now I'm not "sick" but good grief, I'm still tired.

It is kinda hard ... some women's reactions are: I had a hyst, didn't have cancer, but you'll be fine soon. They really don't realize it. No, people just don't get it. I sure didn't and I'm in the healthcare field!

I've tried to explain that I'm not the same and I really don't think I'll ever be the same. Physically, I am ALWAYS going to think every little twinge in my body is a panic alarm .. is IT back? The lymph nodes, connective tissues and muscles... added to the amount of body material removed.. and believe me, there's a whole lot of rearranging going on in there for a long time.

The emotional strain... very fatiguing. The forced menopause... oh sheesh, don't even go there!

Being sick for so long before hand means even more "recovery" time, even more fatigue.

I know I'm singin' to the choir here! You're very astute to realize and point out the our support network needs to visit here.

And another wise point: life is short. We've learned that the hard way. I've never been "into" money (NOT implying anyone is!), but even so, I realize that I need to put even more priority on what I DO value: time with people I love, fulfilling my purpose, etc.

A dear, dear friend & chiropractor/healer told me that yes, I am different, yes, I will not be the same, but now I have a chance to be "delightfully different".

And I just had an epiphany: maybe I need to stop trying to get others to 'understand' and concentrate on being my new delightful self! LOL

Thanks to ALL of you....

Be blessed!

soccerfreaks

HeartJourney1 said:

Hey Soccerfreaks... I really liked your answer. And I agree: this would benefit greatly those around us so they have a better understanding.

I am finding that people aren't really comprehending the fatigue. I didn't just have a hysterectomy. I had cancer. I was sick. I was so tired. Now I'm not "sick" but good grief, I'm still tired.

It is kinda hard ... some women's reactions are: I had a hyst, didn't have cancer, but you'll be fine soon. They really don't realize it. No, people just don't get it. I sure didn't and I'm in the healthcare field!

I've tried to explain that I'm not the same and I really don't think I'll ever be the same. Physically, I am ALWAYS going to think every little twinge in my body is a panic alarm .. is IT back? The lymph nodes, connective tissues and muscles... added to the amount of body material removed.. and believe me, there's a whole lot of rearranging going on in there for a long time.

The emotional strain... very fatiguing. The forced menopause... oh sheesh, don't even go there!

Being sick for so long before hand means even more "recovery" time, even more fatigue.

I know I'm singin' to the choir here! You're very astute to realize and point out the our support network needs to visit here.

And another wise point: life is short. We've learned that the hard way. I've never been "into" money (NOT implying anyone is!), but even so, I realize that I need to put even more priority on what I DO value: time with people I love, fulfilling my purpose, etc.

A dear, dear friend & chiropractor/healer told me that yes, I am different, yes, I will not be the same, but now I have a chance to be "delightfully different".

And I just had an epiphany: maybe I need to stop trying to get others to 'understand' and concentrate on being my new delightful self! LOL

Thanks to ALL of you....

Be blessed!

An epiphany! Outstanding! ...and maybe an answer for me, too. Dare to be delightfully different! They can't take away our birthdays, that's for sure.

Take care.

TereB

Hey Everybody,
Your are all so right, we are not the same after the cancer fight, even if we win. We have been changed, not only physically but also our minds and emotions have changed. The fatigue is very real. Cancer is not a disease like others, it affects us physically and emotionally and many people who have not gone through the same thing do not understand. They assume that after surgeries and treatment we are back to our old lives and that is not true or realistic. I think we do better when we accept our new "me". Doing the best that we can at the moment is good even if it is not up to other people's standards or expectations.
To all a big (((hug)))!
TereB

Lees22

TereB said:

Hey Everybody,
Your are all so right, we are not the same after the cancer fight, even if we win. We have been changed, not only physically but also our minds and emotions have changed. The fatigue is very real. Cancer is not a disease like others, it affects us physically and emotionally and many people who have not gone through the same thing do not understand. They assume that after surgeries and treatment we are back to our old lives and that is not true or realistic. I think we do better when we accept our new "me". Doing the best that we can at the moment is good even if it is not up to other people's standards or expectations.
To all a big (((hug)))!
TereB

Hi,

thanks for the uplifting and understanding. I'm a ten year survivor and still can't mention the "C" word around family without the cringe and the silence that follows. I find myself alone during the time for my annual screenings. A stressful "waiting for results" period.
Thanks for the supportive encouraging words.
Lees22

TereB

Lees22 said:

Hi,

thanks for the uplifting and understanding. I'm a ten year survivor and still can't mention the "C" word around family without the cringe and the silence that follows. I find myself alone during the time for my annual screenings. A stressful "waiting for results" period.
Thanks for the supportive encouraging words.
Lees22

Hi Lees22,
Going for follow-up tests and then waiting for the results is very stressful even if you have been a survivor for a long time. I go thru the same thing twice a year, I still feel the stress and have not gotten used to it even though I've been doing this for about 18 years. I am sorry you have to be alone at that time. If you cannot have anyone with you during the annual screenings, go to the survivor chat room. They understand well what it feels like and are willing to give you support. They are also happy with you when you get good reports.

All the best,
TereB

soccerfreaks

Lees22 said:

Hi,

thanks for the uplifting and understanding. I'm a ten year survivor and still can't mention the "C" word around family without the cringe and the silence that follows. I find myself alone during the time for my annual screenings. A stressful "waiting for results" period.
Thanks for the supportive encouraging words.
Lees22

TereB is right that you can find support herein while going through that...but that is not enough for you, I imagine.

I understand exactly what you are talking about, even though I am just now celebrating year one since surgery: at work, they seem to be planning on my demise, even though there is no evidence to suggest that I should be going anywhere ...

I would strongly advise that you have members of your family take a little look at this site, through the discussion area, on the Chat site, perhaps...so that they understand you are not the Elephant Man...and that you need for them to be there for you.

I used to think there was one thing missing from the C team: the psychiatrist/psychologist for the survivor...but now I also think that there needs to be a Drill Sergeant to run the loved ones through a training course, too.

Take care

Lees22

soccerfreaks said:

TereB is right that you can find support herein while going through that...but that is not enough for you, I imagine.

I understand exactly what you are talking about, even though I am just now celebrating year one since surgery: at work, they seem to be planning on my demise, even though there is no evidence to suggest that I should be going anywhere ...

I would strongly advise that you have members of your family take a little look at this site, through the discussion area, on the Chat site, perhaps...so that they understand you are not the Elephant Man...and that you need for them to be there for you.

I used to think there was one thing missing from the C team: the psychiatrist/psychologist for the survivor...but now I also think that there needs to be a Drill Sergeant to run the loved ones through a training course, too.

Take care

Hello,
Thanks for the input. I don't think family will take the time to 'educate' themselves in being supportive. If they haven't done it by now??
I would rather go alone then have people who fear discussing or dealing with Cancer. I guess it's up to me to find the people that can help me through this time.
I do have a psychiatrist to help me with the emotional aspect. But it's the friendship and helping me with the empty time that I miss.

Thanks for your supports.
Lees22

kd2toyou

Lees22 said:

Hello,
Thanks for the input. I don't think family will take the time to 'educate' themselves in being supportive. If they haven't done it by now??
I would rather go alone then have people who fear discussing or dealing with Cancer. I guess it's up to me to find the people that can help me through this time.
I do have a psychiatrist to help me with the emotional aspect. But it's the friendship and helping me with the empty time that I miss.

Thanks for your supports.
Lees22

I am not cured yet. I am still in the middle of surgeries and treatments. Will probably have Chemo after some radiation first.

When I need support the most from my family, it is not coming. My son wants to talk about my last wishes of death announcements in the newspaper. Now I am getting so depressed and almost want to throw-up when my son is calling.
I am glad that I found you lovely people, where I can find support.