Fear

MelStar · February 2004

I have a question for all you "experienced" people. Does the fear of recurrence ever go away? I know I've only been in remission for four months, but I feel the fear is there 24/7
and I really would like to move past it, but does a person really ever move past it?

Melody (formerly Mel in other posts, but I decided to use my whole name)

kerry · February 2004

Mel,

I don't think the fear ever goes away. I am 6 months off of chemo and every time I feel just a twinge of pain I think the cancer has come back. I also have friends who have been cancer free for several years and yet they still fear a recurrance. We can't live our lives in this constant fear, we must get on with living, but it is also the "nature of the beast". I just stay faithful to the thought that the chemo got it all and I'm going to be ok.

I also stay very busy and count my many blessings.

Kerry

Unknown · February 2004

Melody, as a care giver I can only tell you that from my perspective, I don't think the fear, for me, of Bert's cancer coming back will ever fully leave me. I've talked with plenty of cancer patients...all kinds, and the best conclusion I can draw from all these folks, including Bert and my mom is that no, the fear never, ever really goes totally away but you learn to live more in the present rather than projecting into the future. The future will be what it will be and that's exactly what it is...the future, so why worry so much about it today.

I think from both the care giver's and cancer patient's point of view, we all have to try to live with it and not constantly dwell on it...that's not living either if your whole life focuses on the fear of cancer coming back. It's kind of funny when you think about it that most of us were not like this before cancer entered into our lives and yet none of us ever knew that it would or even thought about it entering into our lives. I'm sure there are countless people out there that have cancer and aren't even aware of it yet (I know Bert wasn't aware of it for 5-6 years before they found it and my mother for well over 4 years before they found her lung cancer...and it did come back and during her remission, she lived every day to the fullest). And there are many, many more folks that cancer will somehow touch their lives but my point here is I don't see any of them worrying about cancer, just like we all once didn't worry about cancer....even though we knew what the odds ratio is and that it's definitely a disease to be reckoned with.

I suppose that as time goes by and the longer one stays in remission the easier it becomes and the more confident we become that we may just have beat the crap out of this demon. The best we can do is to stay positive and believe with all our hearts and souls that we or our loved ones will make it and this demon will not come back. A minister recently told me when I spoke with him about my mom's recurrence that the one thing most cancer patients who go into remission, be it one time or many times, have in common is their strong desire to live and their optimistic, hopeful attitude. He's right...my mom went into remission once and she strongly feels she can do so again. Bert already thinks he's licked it for good and I say "bully for him." I'm the skeptic, worry wart in the group. So keep dwelling on having licked this disease, not having it come back and congratulations on being in remission!!!! It's wonderful news.

This lengthy post has been brought to you by that west coast neurotic who's constantly fearful of a CEA in a husband that for all intense and purposes is cancer free!!!!! Jeeeeezzzzzzz, what's the world coming too (hehe....LOL).

) But I am getting so much better, ya'll!

Monika

)

kangatoo · February 2004

unknown said:
Melody, as a care giver I can only tell you that from my perspective, I don't think the fear, for me, of Bert's cancer coming back will ever fully leave me. I've talked with plenty of cancer patients...all kinds, and the best conclusion I can draw from all these folks, including Bert and my mom is that no, the fear never, ever really goes totally away but you learn to live more in the present rather than projecting into the future. The future will be what it will be and that's exactly what it is...the future, so why worry so much about it today.

I think from both the care giver's and cancer patient's point of view, we all have to try to live with it and not constantly dwell on it...that's not living either if your whole life focuses on the fear of cancer coming back. It's kind of funny when you think about it that most of us were not like this before cancer entered into our lives and yet none of us ever knew that it would or even thought about it entering into our lives. I'm sure there are countless people out there that have cancer and aren't even aware of it yet (I know Bert wasn't aware of it for 5-6 years before they found it and my mother for well over 4 years before they found her lung cancer...and it did come back and during her remission, she lived every day to the fullest). And there are many, many more folks that cancer will somehow touch their lives but my point here is I don't see any of them worrying about cancer, just like we all once didn't worry about cancer....even though we knew what the odds ratio is and that it's definitely a disease to be reckoned with.

I suppose that as time goes by and the longer one stays in remission the easier it becomes and the more confident we become that we may just have beat the crap out of this demon. The best we can do is to stay positive and believe with all our hearts and souls that we or our loved ones will make it and this demon will not come back. A minister recently told me when I spoke with him about my mom's recurrence that the one thing most cancer patients who go into remission, be it one time or many times, have in common is their strong desire to live and their optimistic, hopeful attitude. He's right...my mom went into remission once and she strongly feels she can do so again. Bert already thinks he's licked it for good and I say "bully for him." I'm the skeptic, worry wart in the group. So keep dwelling on having licked this disease, not having it come back and congratulations on being in remission!!!! It's wonderful news.

This lengthy post has been brought to you by that west coast neurotic who's constantly fearful of a CEA in a husband that for all intense and purposes is cancer free!!!!! Jeeeeezzzzzzz, what's the world coming too (hehe....LOL). ) But I am getting so much better, ya'll!

Monika ) ) )

Melody--hey , love your name--kinda rings sweet!
I would be lying if I told you I was not afraid.In terms of cancer I guess I am more afraid of one day dying in pain--I have felt pain before when my epidural after I came out of surgery did not work.Have never felt pain like it before nor want to again.
As for my mental state I would say that I am not afraid of dying--just truly afraid of the thought of leaving my lovely wife and kids without a husband/father.
I sure do fear the detection of any more cancers--hey, I try not to dwell on it but the chance is there and I guess we all have it in the back of our mind.
I live my life now knowing that the cancer "may" get me but I also try to sort out my life now much more differently than I used to.
Once upon of time I used to worry about trivial things--the cancer has mellowed me somewhat now and there are a lot of things I just don't worry about anymore.Jen and the 3 kids(all adults now) are my number one priority--if they are happy--then so am I.
I don't think the fear will ever leave me Melody--but hey--we all gotta meet our maker sometime--is just a matter of time.
luv n hugs, kanga n Jen

Kathee · February 2004

Hi Melody,
I had colon cancer 7 years ago. I had 12 inches (cecum area) removed-resectioned- 48 lymph nodes removed (cancer found in only 2) a year of chemo- 5FU. I just recently had a colonoscopy (June 03)- first one in three years....all fine. I guess since my mom and uncle also had colon cancer, and they survived, in fact my mom never stopped playing on her tennis team the entire time she was on chemo...I had very good roll models. They were always very positive. And when it's something this big, it's out of your hands. I do not eat red meat, I don't drink or smoke (and never did before my cancer...) I try to watch my sugar intake, and exercise,(which I tend to NOT do all the time

)
I guess I have had times when I had stomach pains over the years, that I did get scared, but it's not as bad as it used to be. Right now my 11 yr. old son has Glioblastoma Multiforme Stage IV brain cancer..he is 11. I found out that colon and brain cancer are from the same family. Obviously there is something genetic going on...my fears are for my children now. But I have a strong spritual faith, believe in massage, noni juice, protocel and really counting my blessings rather than thinking of my misfortunes. I don't think it ever goes away, the fear, it just takes time and it's not so vivid as you continue to heal and get those clear colonoscopy's. Melody you will be in my prayers. God Bless.
Kathy

kerry · February 2004

Kathee said:
Hi Melody,
I had colon cancer 7 years ago. I had 12 inches (cecum area) removed-resectioned- 48 lymph nodes removed (cancer found in only 2) a year of chemo- 5FU. I just recently had a colonoscopy (June 03)- first one in three years....all fine. I guess since my mom and uncle also had colon cancer, and they survived, in fact my mom never stopped playing on her tennis team the entire time she was on chemo...I had very good roll models. They were always very positive. And when it's something this big, it's out of your hands. I do not eat red meat, I don't drink or smoke (and never did before my cancer...) I try to watch my sugar intake, and exercise,(which I tend to NOT do all the time )
I guess I have had times when I had stomach pains over the years, that I did get scared, but it's not as bad as it used to be. Right now my 11 yr. old son has Glioblastoma Multiforme Stage IV brain cancer..he is 11. I found out that colon and brain cancer are from the same family. Obviously there is something genetic going on...my fears are for my children now. But I have a strong spritual faith, believe in massage, noni juice, protocel and really counting my blessings rather than thinking of my misfortunes. I don't think it ever goes away, the fear, it just takes time and it's not so vivid as you continue to heal and get those clear colonoscopy's. Melody you will be in my prayers. God Bless.
Kathy

Kathy, You are an inspiration to us. Thanks for sharing your story. You are also in our prayers. I have two daughters who I worry about also. You and your son will be in my prayers.

Kerry

2bhealed · February 2004

Hi Melody,

I have been cancer free for 2 1/2 years now (I don't use the term remission...to me implies I am awaiting its return) and the fear has not left me yet. It's eased but the boogie man is still hiding in my closet.

I have tried to the best of my ability to use this fear to my advantage and make changes in my life that are more conducive to health...ie...stepping away from toxic relationships, making decisions in life directions that I feel will create more balance and harmony and joy for us all, and focusing on living rather than existing. With gusto!

On the flip side I am still working on reconciling that I may die "sooner" than others b/c of this disease. My time is already determined which is a mystery to me so I have to decide how I want to live each day. That is powerful and a gift for those who are forced to look their mortality in the eye...and stare it down.

Because I believe in the saving Grace of Jesus Christ, I have faith in where I will go post mortem. But that does not mean I particularly want to leave this life any time soon! :-) I have 5 kids: 17, 15, 14, 12, 4 and a husband I adore so I'm not ready to check out.

When we get to the point that we can accept this diagnosis as a gift in some respects then we can really live and not worry too much about the dying.....I say not TOO much....the scales will eventually tip in favor of focusing on living rather than dying and life will be good. Free of fear? Not yet....but the bigger travesty would be fear of really living.

You are part of an unique group of folks...cancer survivors...and we have the opportunity to show the world how it's done.

peace, emily who tries to profit from the fear

spongebob · February 2004

Kathee said:
Hi Melody,
I had colon cancer 7 years ago. I had 12 inches (cecum area) removed-resectioned- 48 lymph nodes removed (cancer found in only 2) a year of chemo- 5FU. I just recently had a colonoscopy (June 03)- first one in three years....all fine. I guess since my mom and uncle also had colon cancer, and they survived, in fact my mom never stopped playing on her tennis team the entire time she was on chemo...I had very good roll models. They were always very positive. And when it's something this big, it's out of your hands. I do not eat red meat, I don't drink or smoke (and never did before my cancer...) I try to watch my sugar intake, and exercise,(which I tend to NOT do all the time )
I guess I have had times when I had stomach pains over the years, that I did get scared, but it's not as bad as it used to be. Right now my 11 yr. old son has Glioblastoma Multiforme Stage IV brain cancer..he is 11. I found out that colon and brain cancer are from the same family. Obviously there is something genetic going on...my fears are for my children now. But I have a strong spritual faith, believe in massage, noni juice, protocel and really counting my blessings rather than thinking of my misfortunes. I don't think it ever goes away, the fear, it just takes time and it's not so vivid as you continue to heal and get those clear colonoscopy's. Melody you will be in my prayers. God Bless.
Kathy

Kathy -

There is a hereditary form of colon cancer (actually there are several, but...) called Hereditary Non-Poly-posis Colorectal Cancer (HNPCC). If you have it (which is a possibility since it appears so prevelantly in your mother's family), your kids will have a 50-50 chance of having the gene. Just having the gene doesn't mean they'll get cancer, but they should start getting regular colonoscopies (NOT flex-sigs!) at an age that is ten years younger than you were when you wre first diagnosed.

There are a number of websites with info on HNPCC and the National Cancer Institute was doing a study on it when I was diagnosed a couple years ago.

- Sponge Bob

spongebob · February 2004

Ahoy, Melody (much prettier than Mel, I must say)

I'm in pretty near the same boat as Emily. I'm in remission. Since my cancer is genetic and I have seen it recur twice in my mom, I'm always on the alert. I don't think that fear will ever go away. But, I believe that there is a plan for everything and, like Emily says, the time and place of my death are pre-determined. I don't let it consume me, but I'm not in a hurry to get to the front of the line either!

Get out there and enjoy life - face it, we're all terminal! I'd just prefer to die in bed at age 95. (shot by a jealous husband!)

Stay well!

- SpongeBob

MelStar · February 2004

Thanks, everybody, for your input. I don't feel like such a big baby now. I'll try to put the fear in the background and get on with the positive side of my life.

Melody

nanuk · February 2004

Hi Melody: When I had my cc surgery 3 years ago, I asked the doctor what the chances of recurrence were, and he replied, "something else'll probably get you first.." I thought a lot about that, and realized that my LEASE on life had just been renewed, and that as long as I could see steam on the mirror each morning, it was going to be a good day..remember that FEAR stands for "forgetting everything is alright", and that;
Yesterday is a cancelled check,
Tommorrow is a promissory note,
and today is cash...spend it wisely

Bud

nanuk · February 2004

a lot of people find refuge in you also Emily.. bud

QUEENFISH · February 2004

nanuk said:
a lot of people find refuge in you also Emily.. bud

I am the fifth generation to have colorectal cancer in my family. I must say that I understand where Kathy is comming from. I worry mostly about my daughter. My doctor wants her to start colonoscopys at the age of 24. Problem is, I was told the same thing after my fathers death, and I didn't do it. I continually tell her how important it is to be tested. As far as worrying about reoccurance, I have it constantly on my mind. I also, believe in my faith and Noni juice . I am still on chemo, have been for almost a year, and I have several more months to go. I think the threat of reoccurance will , however, keep me on my toes as far as diet and testing go. So, maybe I can turn my worries into precautionary measures. Sorry to ramble, the chemo brain just takes over sometimes.
Thanks,
Lisa

Fear

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