Being all that I can be

soccerfreaks

I am new to this site, but enjoying reading the discussions in various areas and even more so enjoying responding. Which is probably a bad thing.

But here's the deal: I had a 15-hour surgery for neck and tongue cancer back in October of '05. That was, of course, followed by chemo and lots of radiation.

And I am still here. And...I don't fear cancer. Didn't from the start, but certainly don't now. More importantly, I don't fear death. If I did before, I don't now.

This is astonishing, in that I still have petty but very real fears about keeping my job, paying my bills, preparing for frigging retirement!

And, most important, I now look back, something I never did before, and wonder if I made the right choices. What I mean by this, succinctly, is that I am fairly convinced I have not done enough in my life to merit the effort put forth to save me thus far. Wow. A mouthful. But that's it. It's like I don't deserve this "second chance". Like I don't deserve these hours and days and months and hopefully years, because I am not contributing to humanity's well-being, I am not doing the things I should be doing to justify my existence.

Something like that. Hard to put into words. I reference the word "guilt" elsewhere, in talking to others. It seems to me that cancer survivors are either extremely happy and upbeat because they beat it, or...they are guilty somehow. And that is not just me. I know a lot of cancer survivors, many from long before I was one of them, and too many of them seem to have this sense of guilt...or something close to it. That may be the wrong word...but something close to it, if it is wrong.

Am I completely off target here?

In any event, bless all of you, and may you stay, as Bob Dylan sings, Forever Young.

TereB

Hi soccerfreaks,
I like your nice attitude. I am glad you enjoy responding in the various areas of discussion and I do not think it is a bad thing. If you are helping someone else, how can it be bad? Please do not feel guilty about feeling good or enjoying something you do that is not hurting anyone.

Cancer makes most of us think about many things, especially our lives, past, present and future. You deserve a second chance, most people do, so take advantage of the new opportunity to change things you do not like or accept that which cannot be changed.

Many cancer survivors feel the "guilt" about surviving when so many don't. I haven't exactly felt guilty but there have been times when I felt bad because I am surviving while others aren't. I finally put it to rest when I accepted there is not much I can do for other's survival except lend a hand sometimes and include them in my prayers. Psichotherapy helped me see things in perspective and in general I feel very calm now.

I hope you find a place of comfort for yourself.
All the best,
TereB

lgnicoll

Your message struck such a familiar chord. I have not been through nearly the struggle that you have, but after the one big bad news, all other news seems to have been good and I don't feel as if this is such a big thing. I have tried to make life better for others, in my life, but I would hardly consider that I was worthy of the luck I have had or the blessings bestowed upon me. The only thing I can figure is that there must be something I am slated to do and to do that I will need to be alive. I have always felt that we live as long as we have a purpose or an undone thing that God expects us to do. I am not sure this will help you, but I do understand how you feel. I think we and others need to learn to accept the gifts we have been given graciously.

soccerfreaks

Interestingly, (to me) I had a veritable team of doctors...seven or eight or 10, not including the interns... I won't list them all, but really, there were a bunch of them, which was great until it was time to check out of the hospital and I needed signatures from all of them!

But that is beside the point...the point is that after many months of therapy and healing, while visiting my principal surgeon I advised him that he was missing a member from his team: a psychiatrist or a psychologist. While my doctor agreed and quickly decided I needed a shrink immediately (!) I don't think he really paid attention to the underlying thought: cancer is not just a physical thing. Before you are done, you are DONE both physically and mentally. And while my doctors did an excellent job in both areas, they are not and were not professional mental health folks. I agree with your implicit statement, TereB, that mental health professionals can help you get over some of the biggest hurdles you will face. I would venture to say that a good shrink might even help you get over some of the PHYSICAL obstacles to happiness. I know that, for me, my therapists, at least one of them, became my biggest sounding board as I worked my way through the early going...until insurance for therapy ran out.

Take care.

conniec

soccerfreaks said:

Interestingly, (to me) I had a veritable team of doctors...seven or eight or 10, not including the interns... I won't list them all, but really, there were a bunch of them, which was great until it was time to check out of the hospital and I needed signatures from all of them!

But that is beside the point...the point is that after many months of therapy and healing, while visiting my principal surgeon I advised him that he was missing a member from his team: a psychiatrist or a psychologist. While my doctor agreed and quickly decided I needed a shrink immediately (!) I don't think he really paid attention to the underlying thought: cancer is not just a physical thing. Before you are done, you are DONE both physically and mentally. And while my doctors did an excellent job in both areas, they are not and were not professional mental health folks. I agree with your implicit statement, TereB, that mental health professionals can help you get over some of the biggest hurdles you will face. I would venture to say that a good shrink might even help you get over some of the PHYSICAL obstacles to happiness. I know that, for me, my therapists, at least one of them, became my biggest sounding board as I worked my way through the early going...until insurance for therapy ran out.

Take care.

DEAR SOCCERMOM, wow, do I sssooo understand what you are saying! I, too, had a "team," but sadly, this team really WASN'T a team in the context I tjought a TEAM would be -- always on top of everything that was happening to me, knowing what each of the others were doing, and all working toward the same goal. In my case, the breast surgeon couldn't tell me ANYTHING about chhemotherapy, the chemo nurses couldn't tell me about radiation, etc. AND, since I was ALREADY despressed due to a spinal fusion which left me partially paralyzed, the NEED to have that MISSING COMPONENT on THE TEAM was VITAL, for me. ALSO, what blew me out of the water, was tat I was on a clinical trial for chemo. Of ALL the people I thought would kknow the MOST about EVERY SINGLE aspect of my tx, I thought it wuld be her. HAH! What a joke! AND, the shrink that I ended up going to,LITERALLY SAID to me, "wow, you're a fantastic actor, I never knew you were THIS depressed!" when she gave (first to my husband) a mental pysche eval test, then asked me the same questions, and I was 3 points away from a white wrap-around jacket. WHAT a waste of two years.

NOW, starting this Friday, I am seeing a woman three/4 years older than I am (I'm now 42, had first mast. at 39, second at 41, recon. at 42-42, which failed, contracted HA-MRSA from the OR at 42, and continue to have infections regularly due to that total mess up AND still have problems from the removal of all reconstruction work, since it failed due to this infection the hospital gave me - so now I look ;ike FRANKENWENCH...) -- BUT, SO, I start seeinng this woman who HAS HAD BC, a lumpt., chemo, rads, recon, the other breast lifted, the cancer breast have complications -- so she as SOME idea where I'm coming from. Not quite the same as waliing around with a concave chest, such as I have, when my breasts used to enter the room before the rest of me did!!! -- just a little self-degrading on my behalf..).

SO, in essence, after the history of my life (!!) ;-) ... I 100% AGREE with you that a mental health expert, one who deals with all TYPES of breast cancer, the side effects, the 4am "I want to die" tears flowing down my face, the rads and some of the HORRIFYING side effects NO BODY told me about, the disaster that was recon since this woman wanted my money and NEVER listened to ME (ARGH!) -- having some one like that from the very first day the doctor say, 'I'M SORRY, BUT YOU HAVE BREAST CANCER...." -- there should be someone in the same room THAT MOMENT!

OK, off my soap box. THANK YOU for opening up this topic, it is a hugely needed thread, and one that people are afraid, I think, to discusss about -- the same as with our non-existent sex lives.

BLESSE BE AND HARM NONE...

PEACE - conniec

soccerfreaks

conniec said:

DEAR SOCCERMOM, wow, do I sssooo understand what you are saying! I, too, had a "team," but sadly, this team really WASN'T a team in the context I tjought a TEAM would be -- always on top of everything that was happening to me, knowing what each of the others were doing, and all working toward the same goal. In my case, the breast surgeon couldn't tell me ANYTHING about chhemotherapy, the chemo nurses couldn't tell me about radiation, etc. AND, since I was ALREADY despressed due to a spinal fusion which left me partially paralyzed, the NEED to have that MISSING COMPONENT on THE TEAM was VITAL, for me. ALSO, what blew me out of the water, was tat I was on a clinical trial for chemo. Of ALL the people I thought would kknow the MOST about EVERY SINGLE aspect of my tx, I thought it wuld be her. HAH! What a joke! AND, the shrink that I ended up going to,LITERALLY SAID to me, "wow, you're a fantastic actor, I never knew you were THIS depressed!" when she gave (first to my husband) a mental pysche eval test, then asked me the same questions, and I was 3 points away from a white wrap-around jacket. WHAT a waste of two years.

NOW, starting this Friday, I am seeing a woman three/4 years older than I am (I'm now 42, had first mast. at 39, second at 41, recon. at 42-42, which failed, contracted HA-MRSA from the OR at 42, and continue to have infections regularly due to that total mess up AND still have problems from the removal of all reconstruction work, since it failed due to this infection the hospital gave me - so now I look ;ike FRANKENWENCH...) -- BUT, SO, I start seeinng this woman who HAS HAD BC, a lumpt., chemo, rads, recon, the other breast lifted, the cancer breast have complications -- so she as SOME idea where I'm coming from. Not quite the same as waliing around with a concave chest, such as I have, when my breasts used to enter the room before the rest of me did!!! -- just a little self-degrading on my behalf..).

SO, in essence, after the history of my life (!!) ;-) ... I 100% AGREE with you that a mental health expert, one who deals with all TYPES of breast cancer, the side effects, the 4am "I want to die" tears flowing down my face, the rads and some of the HORRIFYING side effects NO BODY told me about, the disaster that was recon since this woman wanted my money and NEVER listened to ME (ARGH!) -- having some one like that from the very first day the doctor say, 'I'M SORRY, BUT YOU HAVE BREAST CANCER...." -- there should be someone in the same room THAT MOMENT!

OK, off my soap box. THANK YOU for opening up this topic, it is a hugely needed thread, and one that people are afraid, I think, to discusss about -- the same as with our non-existent sex lives.

BLESSE BE AND HARM NONE...

PEACE - conniec

I am actually soccerfreaks (not soccermom )...but your discussion is most eloquent and to the point. I really feel for you, and will first agree with you that the mental health pro should be there from day one...very good point. Second, while I am a tongue/neck survivor, my mom had breast cancer in the mid 70s...and I used to say that they operated on her with a chain saw...back then reconstruction apparently didn't exist or she couldn't afford it, I know not which...but she pressed on and lived another 20 years before ovarian took hold, went to her brain, and finally won out. In any event, I wonder to this day how she, with six kids ranging frrom one in college (me) to one in diapers, and a husband in the navy, didn't go mad even BEFORE the cancer .

Best wishes to you, my friend. It sounds like maybe things are finally starting to go your way, at least in some respects. Stay strong.

Eil4186

Survivor guilt
Hi Socc, I just ran across this post of yours from a very long time ago. I am not sure if you still feel this way, but if you do, you shouldn't. Since getting to know you, and reading your posts and responses to others, (including myself), I have learned that you are a very special, and caring person indeed. You are so empathetic and caring towards others on this site and I am very sure you have helped and inspired many with your kindness and support. You deserve your second and third chance at life and I wish you many, many years of good health and extreme bliss! Hugs and blessings, Eil

terato

Hey, I hear ya, Bro!
I was actually laid off following the return of my malignancy, and did not have a job to return to when I became well-enough to resume employment. This was during the early 1980s when employment discrimination against cancer survivors was common practice. I suffered severe episodes of depression and worthlessness that often felt worse than the cancer itself. Then I read a newspaper article about a Congressman from New York who had introduced legislation to outlaw employment discrimination against cancer patients and wrote him a letter. He wrote back, inspiring me to get involved with promoting the issue at every opportunity. I had a mission and a reason to start caring again. Volunteer work became my outlet, not only with this, but in other areas. I got hired by a human services agency serving the mentally ill by asking the executive director, "Who better to promote your mission than someone who has experienced the same alienation as your clients?"

I made tons of bad choices in my life from marrying the wrong person to getting an impractical degree to working in the wrong field to investing in "otc" stock, you name it, I did it! Hell, my life has been one long history of bad decisions! But, I try to keep friendships active and keep my mind active with current events and politics. When I feel the depression coming on (and it does), I start doing something, anything to get out of it (Watching "Borat" while enjoying a cold beer is better than Prozac!).

"Guilt", like "worry" are bad investments of energy, which is often a limited commodity in the first place. When those emotions intrude, I just say "WTF!" and start writing, walking, cleaning something, or calling a friend. Try to find your own diversions from unhealthy emotions and use them.

Love and Courage!

Rick