You are so so right, Leroy. Again, I have not walked in your shoes, but when I was in the hospital for the better part of four months, IT WAS MY FRIENDS, who helped make it "O.K." It was not life threatening - just lots of pain! We cannot get through this life without others in it - for better or worse - and yes, it is as difficult on loved ones as on the patient - it HURTS to see someone we love sick, worried, suffering.

Take care of you - and G-d bless you.

Love, Jan

Sent by janice goldberg white | 7:24 AM ET | 05-20-2008

Oh WOW! You hit the nail again squarely on the head. Care givers are important and frequently overlooked by the medical team as a participant in the trip. Care givers experience an emotional roller coaster ride that may be comparable to the patients. Care givers have to keep going and doing when the patient cannot or refuses to. Care givers may also have to kick the patient in the butt at various intervals to keep them moving forward.

Thanks for recognizing the importance of the care giver.

A care giver, trying to NOT be any more.

Sent by Sue Chap | 7:46 AM ET | 05-20-2008

Good morning Leroy~ A very good message from you this morning once again. Yes,the people around the Cancer patient can make such a difference in how the patient endures and survives their ordeal. I have heard so many horror stories from others about broken relationships, and how they were treated by those who were supposed to care. Oh, how hurtful that can be to someone who doesn't know how long they will survive or how damaged they will look and feel. Your message of today NEEDS to be addressed and you have done it with your usual tact and diplomacy. Maybe these experiences serve to show us who are friends and loved ones truly are.

Sent by J C R | 8:21 AM ET | 05-20-2008

Dear Leroy,
I totally agree that the only other people who are as scared as you are, are your significant others. For the past 27 months everyone asks how my husband is doing, but then they go on with their own lives. My children and myself are the only ones who really care and share the deep pain.

Yesterday it was decided..............No more chemotherapy or procedures of any type. It's in Gods hands.
Prayers to all.

Sent by sasha321 | 8:38 AM ET | 05-20-2008

Amen to your blog today! We all need help and support. Many if not most, step into the breech to do whatever is necessary and even nice to do to help our family, friends and acquaintances. I can attest to this because I am so blessed. I must say that many have helped but the one I know I can count on every day without fail is my wife. She has been with me through all of the lows and the highs. She fought along with me to do all of the necessary things as well as the unpleasant things to ensure my well being. I always tell others who are newly diagnosed that one of the keys to your survival will be your caregiver or caregivers. Being the caregiver is often a thankless job but I salute each and everyone who is a caregiver. You are my unsung HEROES!

I realize that not everyone is fortunate to have a loving caregiver. For some the reality of the situation is just too much! For those in such a situation, please don't be afraid to reachout to others for help...church, support groups, cancer blogs, ask your oncologist for recommendations, ask the social worker at the hospital, etc. Don't be afraid to ask for help! My experience is that many people will come to assist you that may not know you but just know that you need help.

I have a young friend who has NHL. He is going to have a bone marrow transplant to hopefully bring him to a NED status. Obviously, family and friends lined up to be potential donors. The more astounding is that strangers who did not know him but knew of his need were also ready to volunteer.

Inspite of all of the "bad" we read about and see on TV, there is much more good in this world. I do believe in the goodness of man when there are others in need in the cancerworld. Reachout, be persistent, if you need to and tap into the goodness that awaits you. Call me naive if you wish but I know this to be true.

Sent by Al Cato | 8:40 AM ET | 05-20-2008

I remember when I brought Mom to get her 'nth CT scan. We sat down beside this older fellow, obviously very ill, his gray hair only visible as his head lay draped atop the bars of his walker. I kept waiting for his son or daughter or somebody to come back from the restroom -- or where ever they were -- and help him through things. They never did...because they were never there. The nurse looked around to see if somebody was with him, too. He made it up and into the x-ray room with nobody anxiously waiting in the wings for the results. Our hearts broke for him that day. We DO need somebody with us when we're plunked into the cancer world and it seems sometimes that it is those who need it most, who have nobody there. Mom's lung cancer was my battle, too; my journey, too. We took it together, side-by-side, down rough roads and smooth roads. Up hills and down hills and even off-road, in the ditch. I DID need to be there -- not just for her, but for me. Just as cancer often changes the perceptions/lives of the person who has it, it also can change the perceptions/lives of that person's caregiver. I'll never be the same person I was before Mom was diagnosed with terminal cancer, and I wouldn't want to be.

Sent by Karen Laven | 8:50 AM ET | 05-20-2008

I live alone, except for my wonderful Maine Coon cat Stewie, and when I was in treatment I was surprised at who from my family stepped up to be there for me and who didn't. I felt very much alone most of the time. I did have a friend who helped me out so much, but she had a life and lived an hour away. My mother and stepdad couldn't really deal with it well. My dad would call and see me when he was in town. I would meet other survivors who had a husband or wife or significant other and I would be jealous. I do realize now that even if you do have someone in your life its not necessarily a good thing if that person can't be there emotionally for you. Care givers are amazing people and I have met some true survivors on my journey. I've also opened my eyes up to some family relationships and seen them for what they really are.

Sent by Jenn | 8:56 AM ET | 05-20-2008

Your comments today make me sad about my dad, who died from cancer in 2001. We all knew he had it but he really only shared the worst parts with my mom until the last week of his life. I wish he had felt comfortable doing so much earlier, as I would have felt privileged to be there more and to do whatever I could to help him. Thank you once again for your very honest and thoughtful insights.

Sent by Renay | 8:57 AM ET | 05-20-2008

Dear Leroy,
So well said! My heart goes out to those who find themselves abandoned by the people in their lives who should be caring for them. My hope is that othere people in their lives step up to the plate and provide the needed support. I have been blessed with family and friends who have been in the battle with me and are rejoicing that at least for now I have a break from it.
Charlotte in Rural Ridge, PA

Sent by Charlotte Kewish | 9:09 AM ET | 05-20-2008

i have read those devastating words also...a spouse that cannot" handle it"..how sad is that...to be married to someone that can't handle it...well a word of advice...get rid of that dear loved one, not the one with cancer the idiot who can't handle it...QUICK! anyone suffering from this disease doesn't need any of that around them.

Sent by marianne daltton | 9:10 AM ET | 05-20-2008

i have read those devastating words also...a spouse that cannot" handle it"..how sad is that...to be married to someone that can't handle it...well a word of advice...get rid of that dear loved one, not the one with cancer the idiot who can't handle it...QUICK! anyone suffering from this disease doesn't need any of that around them.

Sent by marianne daltton | 9:10 AM ET | 05-20-2008

Leroy,

Your depth of insight and ability to get to the heart of the matter constantly amazes me. My boyfriend is having a VERY hard time with all of this and actually during the past week i've begun to feel that he will be leaving me very soon. I'm not getting what I need from him either and he doesn't seem to be able to suffer through everything with me. RUN! - that is all I see anymore when I look into his eyes. To be very ill and realize that the person you love most in this world can not continue on the journey with you is truly the loneliest and scariest place in the world. Thank you for talking about this. I'm not sure if i'll ever find love again, or if I'll even be around long enough for the opportunity to present itself.

Sent by Lauren | 9:23 AM ET | 05-20-2008

My fiance was all alone here. The cancer did not change our plans, I moved here in August, sold my home, left my 18 yr old son after he graduated and gave up a good job and financial security to come here and be with him and create as many memories for us both. We had no idea how much time we had together. He died on Dec. 1st. My financial situation is so different than it was in KS. My life here is so different than it was in KS. My friends, my son are in KS, my daughter is in CA. My family is CA. Would I do this over again? You bet... we had 4 wonderful months living and loving together. Was it all good? No....We had plans for "when he got better". He never did.
I don't know what life has in store for me right now, I am scared, but I am still here, trying to buy my home, he is with me and I feel sorry for those that gave it all up!

Sent by Laurie Hirth | 9:24 AM ET | 05-20-2008

Well said Leroy! Thank you.

As scared as we were when our son was sick the only place we felt worth while and whole was when we were with him - at home, at the hospital - we were the 3 amigos. When he was gone there was no emptier feeling - not only that he wasn't there any more, he wasn't there to take care of.

But on the other hand, we knew he was holding a lot of feelings in but would not express them to us as we learned later he did not want to worry us anymore than we were. I can't tell you how much we wish he would have opened up to us and not try to fight the emotions cancer brings by himself. I know it is hard, but if any of the cancer patients reading this blog are able, please talk to your caregivers about what you are feeling as we don't need to be protected from your pain. Yes we are scared and sad and hurting, but it is YOU going through this horrible journey not us...so we are there for you. Let us in, share your pain. With this comes the hope the journey will not be so lonely.

Thanks once again Leroy. This blog has been a wonderful outlet for me and I can't tell you how much I appreciate you making it available and sharing your life with us.

God bless you.

Judy
In memory of my son, Theodore W. Voller

Sent by Judy Voller | 9:25 AM ET | 05-20-2008

This post makes me cry. I am 38 and single. I am currently dating someone for 5 months that I thought was there for me. I am in remission and probably it will stay that way. Thank God. However, I've been going through a rough patch. There are many problems that treatment left me with and my recovery has been ever so slow. I hit my all time low last week and just broke down. I didn't even flip out that much during cancer. What happened was they sent me for a special adrenal function test and had it performed in the chemo room. I was sitting in the chemo room in one of the chairs like I used to. The tears poured down my face. I coudn't believe my reaction because I had no reason to be upset. Then they tried the IV placement. 3 times it was fully inserted and they could not get blood. My veins are shot. I cried more. The ordeal took 4 hours and 2 hours of commuting. I came home to find out they messed up the test and want to do it again. I broke down. When my boyfriend called I burst into more tears and he told me "that I should know how this goes by now". I freaked. I sat in that chair alone for nothing after 3 weeks of constant blood tests and doctors visits and I couldn't take anymore. Let's just say since that day we are close to breaking up. He cannot deal with the lows of this since 90 percent of the time I am acting fine. I wonder sometimes if the "me" I know is truly gone. I cannot deal with this man's reluctance now as I have to take care of myself.

Maybe I am better off doing things by myself and not depending on others except my mother. Bless her, she's my hero.

Sorry Leroy...didn't mean to be negative.

Hug Laurie for me.

Lori

Sent by Lori | 9:26 AM ET | 05-20-2008

Grief in all forms haunts our cancer community. That relationships can be fragile is not unique to our circumstances. Oh to someday have the option of walking away to a new life without stage IV colon cancer. I'm perhaps a little too envious of those living my fantasy to be too judgmental.

Hold Fast, Hold Hands & Forgive the Trespasses

Don MacLeod

Sent by Don MacLeod | 9:33 AM ET | 05-20-2008

Leroy:
I know of several cases where spouses left the survivor within a year of diagnoses and treatments. The doubled anguish in the lives of these deserted friends of mine is terrible to see.
Most of us are fortunate to have a soulmate who we can lean on. In our case we each were able to assume the roll of caregiver, one for the other.
Hopefully, there are substitute surrogates who can help those who have lost their immediate primary-caregivers. But there is no substitute for the solace and comfort that comes from your soulmate.
Love, Don

Sent by don winslow | 9:34 AM ET | 05-20-2008

To Sasha321

I am sorry you and your family have been overlooked by the healthcare team. I CAN appreciate your position, because I have been there with my sister. Please accept my prayers during this time. The decision that has been made is not easy one. Yes, I have been there also, and only merely a month ago. Leave nothing unsaid as this journey nears its end.

Remember the good times. Someone from this blog reached out to me at this time, I am now reaching out to you. Please contact me if you would like to.

Sent by Sue Chap | 9:51 AM ET | 05-20-2008

This is to LORI, I am also 38 years old and live alone (as i stated in my comment above). I am dealing with the side effects of treatment and at the same time slowly wanting to get back into the dating scene. i'm so nervous that someone won't want to take on the issues I have from treatment or that if i have a recurrence will they stick around? Its a tough place to be in. I guess I have to hope that theres someone out there who WILL want to stick around. My heart goes out to you. Thanks for you post.

Sent by Jenn | 10:16 AM ET | 05-20-2008

Sasha,
I know what you are facing. It cannot be described, there are no words. My kids used to say -Bond. lean, hey man I'm not alone.

Prayers for your husband and whole family.

Sent by Irene | 10:25 AM ET | 05-20-2008

As a caregiver, I am troubled by your comments. Cancer is such a cruel disease -- not only to the patient but to those of us who are picking up all of the pieces. Again and again and again.

I don't think people leave cancer patients because they want to. Sometimes it is a matter of leaving or dying ourselves.

Sent by Sandy | 10:26 AM ET | 05-20-2008

OUCH! Today's topic is painful. How sad that many of us only find out what both we and our loved ones, family and friends, are capable of when cancer is doing the testing.

My cancer taught me that I can handle a lot more than I ever imagined: alone when necessary and with support from family and friends when possible.

The man I expected to marry couldn't stand the heat and fled the (emotional) kitchen and people who were casual friends became the ones to sit with me during chemo and hug me when I needed hugs to remind me life was worth fighting for.

Blessed be the peacemakers, and, even more blessed be the caretakers.

Sent by Peggy | 10:27 AM ET | 05-20-2008

My breast cancer returned metastatically just two months after moving in with a partner. Over the challenging months and years ahead, she became less and less engaged, telling me "she's not a caretaker". I have always been very independent and strong through my battle, so my demands were not extreme. Generally, I sought comfort and intimacy as I faced many big questions about my mortality. After a while, I became resolved with her minimal involvement--present physically, but little beyond that. I needed the stability of a home, another body, and domestic partner health insurance benefits.

But after one particularly great challenge, and a glimmer of hope for longer term survival, I resolved to move on. What LIFE was I fighting for? One in which I was entirely shut down? I took the risk, and moved out more than a year ago.

I don't know if it's coincidence, or the result of making this change, but in that year my disease has been stable, where it had previously been steadily progressing for 3 years. It hasn't been easy, and thankfully many friends and particularly my mother have provided me great support. I feel I am living my life as best I can, as honestly as I can. And that is why I fight. I wish there was someone sharing my life on a daily basis. But in the zen that comes with this battle, I am so grateful for those who ARE there for me. And after reading your post and the many comments, I know how lucky I am.

Sent by Laura B | 10:38 AM ET | 05-20-2008

Leroy, 40 years ago my first father in law had leukemia. He died NEVER being told he had cancer. I often wonder what that precious man thought was happening to him. Back then you didn't tell people that they had the BIG C. Only the family knew and we didn't tell anyone else. I remember asking if they were giving him extra cream in his coffee to help get some nourishment in him and being told to SHHHHH!!! He might hear you...

I also remember being SO AFRAID that I would have cancer some day and no one would tell me.. I knew a lot of people I loved who died of cancer and NO ONE mentioned it.. Like it wasn't there or something..

People stuck around for my father in law but I wonder if he wondered "Why are all these people here?" Very sad...

Sent by Patsy Elmore | 10:42 AM ET | 05-20-2008

My husband (Stage IV Bladder Cancer, all treatment has failed) tells me that without me, he would not be here, that he would not have pursued the agressive treatment he endured without my emotional and physical support.

I'm shocked when I hear people say that they are surprised/impressed that we are still together. I know that if the tables were turned, he would absolutely be there for me.

I cannot in my wildest thoughts imagine deserting my husband at such a time. I don't understand how the deserters rationalize their choice.

It is an honor to be with my husband during these times and I simply couldn't live with myself if I turned away. His family, however, is amazingly blase...they call every six months or so (some much less), they say they will visit and don't. My children (bless their hearts) have been very supportive, visiting in the hospital, helping around the house and they visit more often as time goes on.

His family's attitude used to make me angry but this far down the trail, I focus my energy on living the time that my husband and I have together and spending time with the people who know how to love.

Sent by Ricci | 10:52 AM ET | 05-20-2008

Gee, Leroy and here I thought you were talking to me! My mom and my sister have helped me and we have become much closer. But in the space of a week I broke up with my long distance boyfriend and I lost my job, while I was in radiation treatment. I still don't know how I managed to complete 33 radiation treatments. The Rad techs were great as were the nurses and my doctor. They gave me a lot of support. So I figure I now have a hole in my life big enough to pilot a cargo ship through, something big is going to come my way. I have also reconnected with some people I loved in the past, and one in particular has come through for me in a small but important way.

Sent by Dianne (DC) | 11:00 AM ET | 05-20-2008

Ironically, the longer I'm around, the harder it is to open up to and lean on people around me. I start to feel guilty because my cancer affects not just me but my kids, husband, and friends, and it goes on and on, it's an unrelenting cycle of treatment, tests, and problems. Don't get me wrong, I'm happy to be here and want to be a long-term survivor; but it places such a burden on those around us. My husband has developed stomach problems and I suspect stress is a major factor. He's been great but can't verbalize his fears or concerns. So I hold back from expressing my fears (lots of them, real and unfounded) and pains because I want things to be "normal" and reduce the stress on my family.

Sent by Marcia | 11:02 AM ET | 05-20-2008

Your blog today is so very accurate. I truely believe that cancer is mentally harder on our love ones, than it is on us, the cancer patient. It must be very difficult to stand by and watch what we are going through, and not really understanding the effects of the treatments on our bodies. Blessed are the caregivers that do not walk away.

Sent by Roxi | 11:05 AM ET | 05-20-2008

Dear Leroy; i read your blog daily but seldom post. But today i felt compelled to respond.

My "mentor" when i went through my breast cancer diagnosis and treatment was my friend Carrie. She was my age, married without children like me, had gone through the same treatment I was about to embark on, etc. She was about one year post treatment when i was diagnosed, so she was an "experienced" survivor. She taught me how to do deep breathing, to listen to relaxing music, to think good thoughts during my chemo. She showed me her breast prosthesis. She came to my treatments and held my hand. She was there for me.

A year after i finished my treatment, she had a recurrence. She went through more chemo but things didn't look good. And then one day, her husband of 15 years told her he was leaving, "that he couldn't deal with it," because his mother had died of breast cancer and he "couldnt wait around to watch her die, too."

You can well imagine that there were many of us who wanted to hunt him down and wring his little neck - -especially when we learned that he had fallen into the waiting arms of one of Carrie's (formerly) closest friends.

To his (only partial) credit, he did "come around" a bit when Carrie's situation was clearly terminal. Although he never moved back into the house, he was "there for her" in a way that she apparently found acceptable. And when she died in the hospital, surrounded by a group of her women friends singing all the songs that she loved, he was holding her in his arms.

There are very few things that have upset and angered me more than Jim's bailing on Carrie when she was ill. I simply could not, and still cannot, know what inside someone would enable them to do that.

On the other hand, when i went through my treatment, my husband was there for me every step of the way - - as were an unbelievable number of friends and, indeed, a lot of folks i'd never even met (friends of friends, who'd had breast cancer too and wanted to reach out to me - - i was blown away, but since then have done it for others many times so i now understand the impulse).

But i think that you really do find out who your friends are, and arent', when you are confronted with cancer. People either step up, or they don't. And for better or worse, how people responded to me when i was ill has stayed with me now for 10 years...and i will never forget who was there for me, and who wasn't.

Sent by Suzanne Mitchell | 11:08 AM ET | 05-20-2008

Hi Leroy, and God bless you today!
My Dad is at the center of our circle, and we are there for him--my Mom, one of my two brothers, and me. I can't imagine or understand not being there. Dad is part of my every thought. How can it be any other way if you love someone?!?

Sent by Linda Lee | 11:13 AM ET | 05-20-2008

Leroy,

Some in cancer land are more alone than others. I want to ask those people to reach out. Don't let youself be alone. Hospice is great for this kind of thing. Also,counseling can help. There are cancer survivor groups for every kind of cancer there is. There is the American Cancer Society. So, if there isn't anyone close at hand, you still don't have to be alone!

Sasha - may your faith lift you and your dear ones be there in this difficult time.

Sent by Diana Kitch | 11:14 AM ET | 05-20-2008

Sasha,
You, your husband, and family are in my prayers.

Sent by Stacy | 11:18 AM ET | 05-20-2008

This is a bit off topi, but I wanted to make sure you all heard that Jon Lester, of the Boston Red Sox pitched the first no-hitter of the season last night. He is a cancer survivor.

Sent by Chris | 11:19 AM ET | 05-20-2008

It's heartrending to hear about the many folks (women, mostly) who have been abandoned by their spouse or partner who "couldn't deal with it." My husband was 100% there for me through 17 months of treatment and I will never forget that. Sometimes now I think he isn't always as sympathetic as I would wish about my fears of recurrence. But then I remember that as caregiver, he went through everything with me so selflessly, and yet often didn't have much support for his own emotional needs. So maybe it's time for me to take care of him awhile. A few days ago, I had a conversation with an aquaintance who is fighting a very serious kind of cancer, yet has had to return to work full time in an effort to pay off some of her debts. She said she will probably lose her house. And she lives alone and has no close family. Remembering how scared I was, I couldn't imagine having to deal with all of that alone while fighting for your life.

Sent by Doris | 11:22 AM ET | 05-20-2008

Leroy - excellent post. When I was diagnosed with colon cancer and had the subsequent surgery and 6 months of chemo it was my wife who was there every single day and night. We have talked about it many times and the hardest thing she felt was the not having someone to talk to. She pointed out that the person with cancer is talking to their doctor, the nurses etc... all the time about it. The caregiver sits to the side patiently, patiently waiting to take you home. It was so much harder for her that it was for me and I am always thankful that she was there day in and day out. Thank you to all of the caregivers!

Sent by Richard | 11:29 AM ET | 05-20-2008

Good Morning Leroy, Laurie and All,

Leroy, Your tribute to caregivers and your concern for those who do not have a significant other to travel the road in Cancer World with them, is inspiring. You have said it all when you say that going on alone is not an option. I know you would be as lost without Laurie as I would be without Tom. It just wouldn't work!

Laurie, I know there are times when the mountains look so high that you wonder how you and Leroy will ever get over them. But the important thing is that you are there by Leroy's side. Just as Tom is with me. I can't picture how we, who have Cancer, would ever go on without you!

To All, I know that this is and will continue to be a heart breaking journey at times. But we will travel this road together. We will weep for the sad times and rejoyce in the victories until the final battle is won, once and for all! And Sasha, our thoughts and prayers are with you and your husband. God Bless!!

Eileen Pruyne
Charlotte, NC

Sent by Eileen Pruyne | 11:32 AM ET | 05-20-2008

I never once thought about leaving my husband after he was diagnosed with lung cancer. The thought never crossed my mind. We were a team and helped each other. Yes, it was rough on me - but rougher on him!! I pulled my strength from him and he pulled it from me. The family was our strength also and I could not have done it without them.
Sasha - I will pray for strength for you and your husband.

Sent by Deb from Michigan | 11:41 AM ET | 05-20-2008

I don't really know how to say this. My partner says that it's my fault that I have cancer. She says that she knew I had cancer at least six months before I was diagnosed, and that the reason that I have it is that my relationship to God was not good enough, and that I will die unless I do something to improve that relationship. I am dumbfounded. This is from someone I thought I knew pretty well after many years of marriage.

Sent by Anonymous | 11:43 AM ET | 05-20-2008

Leroy, I could mot agree more. Trying to do this alone, I can't imagine. Each day brings something more. You have to have someone to share this. No question it is difficult for everyone, but to just walk away, I can't figure that one out.
Well we are doing radiation everyday. Will talk with the Doc today about Chemo. Everyday brings something. Thoughts, Stan

Sent by Stan Wozniak | 11:54 AM ET | 05-20-2008

Leroy, I have said this for years, no matter what the situation may be "no one loses any sleep over me except my husband", whether it be cancer or whatever other problem and I truly believe this. My husband truly amazes me, he has been at my side throughout all my cancers over 20 years worth and I wouldn't have made it without him. I tell people all the time, don't send me flowers or get-well cards, send them to my husband. He works everyday and takes care of me everyday too. He is my angel. I truly believe that the caregiver who really loves you has the hardest job in the world. I the patient, must deal with the pain, but having to stand by and watch your loved one suffer and knowing that there is nothing you can do to stop their pain, is far worse, in my opinion. I consider myself so very fortunate to have my angel by my side. NOTE TO LORI, Dump him, being alone is better than having someone around who doesn't care.

Sent by Ruth White | 11:57 AM ET | 05-20-2008

Unfortunately, my husband and I know this all to well. Both of us (he's 59, I'm 50) have stage 4 cancer and we have had to, and continue to have to, take care of each other and see each other through all of it.

Sent by Amy | 12:16 PM ET | 05-20-2008

Leroy, as much as it hurt me to see my husband go through cancer, I never left his side. He rarely saw me cry, but cry I did. His parents were with him during the day while I worked. I cried all the way to work, made it through the day and cried all the way home. I was by his side when he took his last breath. The thought of abandoning him never entered my mind. I stayed with him in the hospital during his surgeries, they put a cot in his room for me. He didn't want me to leave, he was so scared and it was a relief to open his eyes and see me there. I only wish I could open my eyes and see him by my side again.

Sent by Cindy | 12:37 PM ET | 05-20-2008

What about caregivers who have been abandoned by their loved ones? Maybe not abandoned, but certainly not included. My sister with stage IV colon cancer has refused to acknowledge what is happening to her. "I'll be fine." is all I hear, even through brain surgery, colon surgery, chemo infusions, radiation. "I'll be fine." No sharing, just take all the things I do for granted (financial support, housekeeping, cleaning, cooking, vacation days spent in the infusion room...) No confiding, not even wanting to spend time together. Just selfishness and taking. I'm trying not to let it tear me apart, but it is hard. I try to think about my Mom, who passed away 5 years ago, and how she would be so glad I am taking care of things, since she cannot.

Sent by Kate | 12:55 PM ET | 05-20-2008

Thanks again, Leroy, to take time away from your pain to speak to and comfort others. My biggest source of sadness comes from my inability to have had honest conversations with my mother during her illness. The elephant in the room, indeed. We became closer than we had ever been, yet never spoke of her inevitable death. I still wonder what went through her mind when I left her at night to go home to my husband and young children. I know I cried lots of tears thinking of her and her rapid decline; I will never know if she did the same because she rarely complained, not to me or her close friends. I'm not sure her oncologist(who only saw her three times in the four months after her diagnosis)realized how bad she felt because she was always so positive and didn't want to burden anyone. For anyone feeling that silence is the best way to spare your caregivers pain, please know that most of us want to help share the burden as much as possible. We can't ease the physical pain, but want so much to be useful. Yes, it can be exhausting at times, in all honesty, but living day-to-day wondering if my mother felt that I was doing enough, if she knew how much I loved her, if she knew that I would have given anything to alleviate her suffering is just as difficult.
Thank you, thank you and thank you again, Leroy, for this gify you give everyone with this blog, and know that we are all pulling for you.
tina collins

Sent by tinal collins | 12:57 PM ET | 05-20-2008

Leroy, I want to add to the chorus of thanks to caregivers. My husband, Joe, our extended family, and community friends were marvelous, each in their own ways, during my 19 months of treatments. My work colleagues were in frequent contact. There was one person, though, with whom I had to have an unexpectedly different relationship - a best friend for over 30 years. She was diagnosed with breast cancer a few months prior to my ovarian cancer diagnosis. Instead of being there to care for her and family in a physical sense, our concurrent therapies meant that we could best help each other as our own special support group. We lived a short 30 minute drive from each others homes; yet, only had visited occasionally after the demands of work and family were met. During treatments we resumed nearly daily contact, and our friendship has become even stronger. Without all of these supportive individuals, I cannot imagine being in the place I am in today.

To Sasha and to Stan, Please know that you and your families have been and will continue to be in my prayers and thoughts as you travel on this journey.

Sent by Sheara | 1:09 PM ET | 05-20-2008

The way my husband and I dealt with the possibility of the "Big C" was to plan his funeral. We joked about it. Many
people thought it was morbid and NOT something to joke about. But being irreverent about it helped us to think that this was something that wouldn't beat us. If the worst happened and he died...I don't know that our joking about it would make that any easier. But it made the *living* with it easier. His pathology report was "inconclusive". So we just wait and see if it comes back. (We are told it most likely won't.) I could never abandon him. His tumor has given us hilarious "new material".

Sent by Tumor Boy's Wife | 1:11 PM ET | 05-20-2008

Sasha, Lori, Stan and all, my continued prayers for strength.
After 5 months, the support from friends and neighbors has gone, its my family that I cling to for support now!

Sent by Laurie | 1:18 PM ET | 05-20-2008

Sasha,
I am so sorry. You all are in my prayers.

Sent by Jen | 1:20 PM ET | 05-20-2008

As a caregiver, I am troubled by your comments. Cancer is such a cruel disease -- not only to the patient but to those of us who are picking up all of the pieces. Again and again and again.

I don't think people leave cancer patients because they want to. Sometimes it is a matter of leaving or dying ourselves.

Sent by Sandy | 1:35 PM ET | 05-20-2008

it's funny you say that. i'm hooked on your blog and it's my husband who has been sick. i think of it as "my cancer too" -- not sure how fair that is but it's just the way i feel...

Sent by allison | 1:36 PM ET | 05-20-2008

Leroy,
I can hardly believe that I am on this site today, but somehow still had to check in. You are all my special cancer world family. My husband was diagnosed 2 years ago with lung cancer and was told possibly 6 months. He passed away on Sunday 5.18.08. I am very sad.

Today you couldn't be more right or insightful. Cancer is a very lonely event for not only the individual but the significant other as well. Over the last 2 years I have gained so much strength from you and all the very special people who are a part of this site. People who live with the same circumstances. I honestly do not think I could have survived or been as helpful to my husband with out all of you. My husband did not read your blog, he turned inward probably to try to survive as well, but I did share many of your postings with him.

My heart and prayers will still be with all of you. I know there are many struggling out there. Sasha, I wish I could give you a hug. I have followed your postings closely as they have been so close to my situation. Al Cato, you are a very special person, such depth. I am so glad that you have such a wonderful family. And to all others that I have followed thank you and I will continue to pray for an easy road for all of you.

Leroy, thank you for all that you do with all the shareing of yourself and your feelings. I just can't express enough the importamce of it. We are not alone. Take time to give Laurie a big hug! God Bless.

Sent by dorothy in oregon | 2:22 PM ET | 05-20-2008

Sasha, we will ALL pray for you. Sandy, it sounds like you need a break. Can anyone help you so you can get some air? Sounds like you needs it.

Sasha, we will all pray for you. Sandy, I think you missed the point and it soundsl like you need a little break. Hopefully, there's someone YOU can turn to. Take care.

Sent by Becky | 2:36 PM ET | 05-20-2008

I am giving all of you a mental hug. I think today's topic is especially painful b/c so many people do go through cancer alone and have seen cancer be the true test of their trusted relationships. it might seem really odd to some, but as my boyfriend and I have started discussing plans to become engaged, the insecure part of me that saw my mother's cancer wedge itself between my parents and catalyze their eventual divorce after thirty-something years will ask my boyfriend to assure me that we'd never leave the other if one of us got sick or hurt. i know my dad was also hurting watching her be so sick, but it seems so horribly unfair to me that after all my mom had been through, she had to endure heartbreak on top of it.

Sent by anon | 2:53 PM ET | 05-20-2008

Leroy, "I just received the news today, oh boy." of Ted Kennedy's brain tumor. I tried to get to his web site but no luck. I am sure it is receiving many hits per second. So alone needs to be balanced. Don't you think having a "healthy balance" between alone and company is important to meet?

Sent by Leah | 3:09 PM ET | 05-20-2008

I am a woman who has now survived 2 /12
years from breast cancer (2 different
kinds, one in each breast) and I had a
double mastectomy that did not heal right on one side so had an open chest
wound for a full month prior to the
start of chemo. I live in the mountains
with my husband who did NOTHING at all
to help with any of the household
chorse, laundry, meals, grocery shopping,etc. But it made me so mad
(and deeply hurt too) that I made up
my mind I would beat this no matter
WHAT it took out of me.

Now, the deepest hurt of all is that
my 36 year old daughter was diagnosed
with Stage III breast cancer too and
she lives in a state quite far away.

Trust me....that kind of emotional
pain is far, far worse than anything I
had to endure myself. Last month
her husband moved out and she's not
even done with her chemo, her surgery,
or 5 upcoming weeks of radiation.

No matter what my own situation is: I
will go and be with her for her
surgery and recovery.

You never know how strong you are----
until you are truly "put to the test"
and then get yet another "whollop".

If it weren't for my dear friends
(none of whom live near me) I don't
think I could be doing this! that and
my beloved little pomeranian dog, now
12 years old, who never left my side.

We do a lot of work as a therapy dog
handling team working at Hospice House
and nursing homes as it has given me
an answer to having a true PURPOSE to
my life.

Attitude is everything with this disease! and friends are God's angels
even if you can't see them...you know
that they are there!
Lorraine

Sent by Lorraine N. Berkholz | 3:46 PM ET | 05-20-2008

Hey, Leroy---My husband, father, brothers and sisters and in-laws have all been wonderful. They know that you laugh and grieve as you go along. My mother has always been depressed and she has panic attacks. She had panic attacks whenever I went to the doctor. She told me that I should quit work and simultaneously stop thinking about being sick. She says I could get better if I just had a better attitude about the whole thing. She finally just asked me to leave her alone. My brother says it's easier for her to be mad than sad. It hurts, but I know it's lots less painful for her to let me go by choice. I am so grateful to the rest of my friends and loved ones.

Sent by Funoozer | 4:18 PM ET | 05-20-2008

Hello,
I lost my friend to cancer yesterday. I told her about your blog--Thank you for sharing your cancer life with all of us -- Above all, my oldest elementary school buddy got much comfort out of your blog day to day. Thank you for letting her know she wasn't alone. I believe she wrote you several times. Her name was Andrea Angel--Say a prayer for her please. She prayed for you every day.
Bless your heart, Damn that cancer!
xoxo Kitty Ford-Daly

Sent by Kitty | 4:36 PM ET | 05-20-2008

Guilty! I "hide" my cancer from those who don't "get" it. I used to be an open book but found it did not stop the rumors (misinformation) from flowing which eventually got back to (and hurt) my family and those who truly care.

Now, "I'm fine". "why are you still on chemo" "oh, they just want to make sure it stays away".

I used to faithfully read a blog written by a computer programmer. He had very good business advice (be honest with your employer, document, document), how to dress when your weight changes dramatically, etc.

I don't follow his very good advice. I'm too scared my employer will give me the boot if they knew the truth.

I'm fine.

Sent by Karen D. | 4:47 PM ET | 05-20-2008

Dear Dorothy from Oregon,
My sincerest condolences on the loss of your husband. My husband has been battling stage IV lung cancer for almost a year and a half now and is now at home with hospice care. I appreciate what you have endured. I lost my Mom last year to cancer. She was 85 and lived 1200 miles from family. She did not want to move near her children because she was comfortable in her home. For the last year of her life, she lived with a nurse's aide and her children and grandchildren made frequent trips to visit her. A lot of friends were able to identify with the stress it caused me. Yet, now that my husband is suffering and I have been the backbone of his support, I find that others don't understand my stress. When I'd try and explain about how hard it was on me, people would say, "Well, imagine how he feels". To some I'd say, "You're right". To close friends, I'd say, "Don't worry about him, I'm taking good care of him. I need someone to take care of me" I've stopped complaining and trying to explain. Unless people have walked in my shoes, they just don't get it. Peace be with you.

Sent by Elaine | 5:00 PM ET | 05-20-2008

Dear Leroy,
Thank you for the opportunity today to say that I am the luckiest person in the world. Yes I have stage IV breast cancer but I am happily married for the past 30 years to my best friend. He is my rock and has been with me every step of the way. I know there is pain about the thoughts of leaving him when I die, but it is a testament to our love. I could not to this without him.

Sent by Mary C. | 5:01 PM ET | 05-20-2008

Thanks, Leroy. Thanks a lot. I have been very conflicted in the last couple of days. I got an email that a dear woman I know is no longer fighting her cancer; options have run out, she and her family have discussed and chosen hospice care. They say she's got a couple of months, tops. The thing is, I suspected this would happen. She had stage 4 cancer. I've seen this before in friends and family. I knew her odds weren't good. But she has this amazing family and group of friends who rallied together to send her loving and healing energy. They were willing to believe in a miracle and I found myself wanting to believe with them--even though the rationalist in my brain kept saying, "yeah, but..." So I dared to hope with them and joined with them to give her that miracle. To hear that she's now preparing to die tears at my heart. Was all we did for her a meaningless gesture? Were we just playing some delusional denial game? I didn't know, I just felt so profoundly sad and a little dupped by my own desire for that rare gift of unexpected recovery that's not going to come. But reading your message today makes me realize that the miracle did occur, just not the one I wanted it to be. She and her family contend that we all did her good--that she felt our prayers and intent and it helped her through the difficulties of treatment. It gave her what she needed in the moment--an unconditional outpowering of love--and that's enough. She knows it'll be there still for her husband and daughter when she's gone. It was about her and what she needed, after all, not some payback for me. I didn't realize until reading these postings that not everybody gets what she has received from her beloved. They taught me how to love fiercely and unconditionally against impossible odds. I guess that's the real miracle after all.

Sent by CJ | 5:20 PM ET | 05-20-2008

Dear Leroy
On my Breast Cancer support list (one of them), there were several "significant others" who turned tail and ran away from their spouse or lover when the going got rough. I can't think of a sadder thing to have to endure at such a time. Happily though, most husbands and boyfriends (and their female counterparts, as men DO get BC) have stuck by their Other Half through the worst of it. It's amazing how hard it must be on them, yet they stay. I was a lucky one.

Sent by Alycia Keating | 5:46 PM ET | 05-20-2008

Once again - another topic that comes up too often. I guess I am feeling sorry for myself today. I was diagnosed some 8 years ago. My cancer type is very rare but I have been pretty lucky so far. Many rounds of chemotherapy and it seems endless surgeries for so many things I have lost count.

Through it all my husband tried as best he could. My friends were willing to lend an ear or hand as necessary, but after so long a battle things have become "old hat". My husband has gone outside the marriage for attention, as I, many times am unavailable for that, being too sick or weak. I feel terribly alone many times and more like a burden than anything else. I know this does not impact me well in this battle and am trying to make some changes to improve things.
I have been on the caregiver side and took care of both my parents as they eventually succumbed to their cancers. It is indeed one of the most trying yet rewarding things a person can do, so I do sympathize with the caregiver side. It can be a real tough road.
Please remember that for some this battle goes on for a long time. It takes your money, your appearance, your friends and many relationships.

Thanks for giving me this forum.

Sent by Mina | 6:20 PM ET | 05-20-2008

Not one of you reading Leroy's blog is alone. Never! You are in the center of this team of people who each cares for the other in their prayers and thoughts each day. This army is for each one, caregiver, patient, survivor, and friend. There is love and understanding here. Please continue to get a good heaping tablespoon every day and when you are giving that mental hug remember to feel the comforting hug that is being sent to you. Love and strength to all.

Sent by Lucy from Alaska | 7:42 PM ET | 05-20-2008

My husband, Tom, quit his teaching job to stay full time with our son, Andrew, in his condo as he is terminally ill with metastatic melanoma. It has been two months and the end is very near now. He has done a wonderful job with the help of Hospice. I continued to work to keep our health ins. and came down on weekends. Also, I stayed with Andrew for 1/2 month while he underwent daily radiation treatment. I can't get over how good my husband has been. Andrew has gone through so much. We are all together now. How very sad it is to see your 35 year-old son suffer. One is so helpless. At least we have been there for him all this time. Thanks for your wonderful words regarding this - cancer patients cannot go through this alone.

Sent by Maureen | 7:44 PM ET | 05-20-2008

I'm not sure if my first post just didn't go through or if it was declined, but earlier today I posted part of what Terry e-mailed me in December 2006:

We need to talk about some things sometime. You let me know when - stuff like some pharmacy questions, stuff like that, but also some other stuff for you to think about, like when and if I decide to give up in the future, do you want to be there, do you want to know, do you want to be part of it, stuff like that. I'm not talking about tomorrow or next week or next month, but it's all stuff we need to talk about.

I don't want to hit you with a load of bricks here, but this is nothing we haven't both thought about. I'm just getting really tired of knowing it's not really going to get better, at least long term.

So we talked. And I reassured Terry that nothing prior had scared me off (and there were some pretty horrific things the last 10 years or so) and that I had no intention of walking out. And so I didn't.

I couldn't.

And, of course, two months later Terry was dead. But we had discussed it all, small consolation as that is now. We got to say everything we needed to say, and peace was made. I have no regrets there. We had the blessing of time and foreknowledge of what was just around the corner.

Sasha, Dorothy and all, so many of us have been there. And we're so sorry you have to be where we had to be.

But know that we understand, and will be here for the foreseeable future for you, and for all of us. Talking about it helps us as much as it does everyone else.

Sent by Bruce | 7:46 PM ET | 05-20-2008

many people here say that they find it difficult to leave. i'm currently supporting my mom who has a rare and agressive form of blood cancer. i can't imagine not being there for her. i don't want to have regrets, and to that end, i do whatever i can to make things easier for her. but my brother is the opposite. he loves and appreciates her, but just can't deal with the situation. and so he does nothing to support her financially/emotionally/physically. i know he's just unable to deal with this. if he could (mentally/psychologically) he would, but he's in total denial. i've been angry at him. sometimes i resent him for leaving more burden on me and my father (my dad is currently supporting both my mom and his own father who are both cancer patients). but at the end of the day, we can't force him to be involved. all we can do is push forward and hope for the best.

Sent by someone in canada | 9:38 PM ET | 05-20-2008

Leroy,
I don't know if your topics are just hitting home more often by your choice of them or if I am just that much more absorbed. Once again it is late because I have been working and then to the nursing home/rehab center to visit my husband. Each week I say I am going to take one day and send someone in my place (he has many visitors) but I just can't imagine a day going by without seeing him. I can't imagine not taking care of him. We have a lot of time (37 years) invested in each other and I refuse to waste that. His family is supportive and our kids are always there for both of us so, in that respect, he is a very lucky man.This journey is hard enough without feeling the rejection of people who have professed to love you when the sun was shining. To Sasha and Dorothy my heart goes out to both of you especially. To everyone else your blog family will always be there to listen. God Bless us all.

Sent by Kathie | 9:44 PM ET | 05-20-2008

In some respects I am glad I went through my chemo and treatments and tests being all alone with no help because family lives too far away. It made me push myself to get things done. I didn't have to look into the face of some one else's fear, so I could forget about it for a while. I didn't have to watch my words when I was crabby and not feeling good. I could eat when I wanted, sleep crazy hours, and just let the housework go. But then again I was blessed with minimal nausea, and complete disappearance of inoperable tumors after 2 1/2 treatments of chemo - but the chemo continued for 6 months anyway plus several more months after a break. Still am dealing with being weak and tired alot. I was a caretaker for 5 years 24/7 for mom with Parkinson's disease so I know that role too.

Sent by Maureen Kennedy | 10:03 PM ET | 05-20-2008

To "Anonymous", I think your partner may just have gone off the deep end with the shock and fear of your diagnosis. It is sad when those close to us cannot be who we need them to be. They may not be able... BUT you did not cause your cancer. No one knew 6 months before diagnosis that you had it. I hope you know that.
To Sasha I cried when I read your post. Just another one out here praying for you and your husband. God Bless.

Sent by Cathy | 11:51 PM ET | 05-20-2008

Dear Leroy,
You are so gifted at writing and sharing feelings so many of us have but are not able to so clearly and concisely say. It made me cry to read your message and remember the fear that I had and to also be so humbled by the help I needed. I cried when people did nice things. It's okay to cry once in a while... it just brings up the love and appreciation I have for my family and close friends who were there. My husband and mom were my life lines. It makes me sad to think that anyone could turn their back on someone with cancer, even if it is out of fear.
Love, Jen

Sent by Jennifer in CA | 1:17 AM ET | 05-21-2008

Hi, Jean! Hope you're doing well! Give Stewie a big kiss from me! Love, prayers, and best wishes for the best of luck to Leroy, and to all posters and their families! (And their pets, of course!)

Sent by Mary | 1:53 AM ET | 05-21-2008

CJ....I can feel your pain...you are very wise to have come to your understanding of the situation. While your friend could not get healing, she received peace and the knowledge of how well she was loved.

Anonymous....I can understand how shocked you must feel; it's like a slap in the face. I feel sorry for people who feel they must use their religious beliefs to knock down and hurt others. I hope you are able to come to some peace with this.

Leroy...I love your subject. I can hardly conceive of what it must be like to go through something this devastating without someone beside them who cares. Even though there are other avenuses, such as this group, it isn't the same.

I confess that I feel frustration and disgust when I hear of a loved one who walks away from a person in these situations, but I DO understand that we all handle things in our own ways. Some of us are strong enough to take on the every day pain and struggle of caretaking and find satisfaction, love and redemption in doing so....others apparently cannot do this. It is so sad. I think it is a gift from God and I thank Him that I have been able to do so, physically as well as mentally and that life's circumstances enabled me to be free to do so; I don't think that I could live with myself if I hadn't!!

Sent by Betty Obst | 11:32 AM ET | 05-21-2008

Cancer is a terrifying diagnosis -- there are no two ways about it. Drowning, alone and trapped in a car that has gone off of a bridge late at night must be terifying too. Some of the tragedy that the Kennedy family has "seen" has been karmic. Ted has lived a long and charmed life despite the toils and pain he has endured and caused others to ensure. I do not wish anything bad to happen to him and I am sorry for the despair that accompanies a diagnosis like this one. I've been there. The posts that seem to indicate that "it isn't fair" that "this should not happen to a Kennedy (Ted Kennedy) after all they've (he's) been through" -- well, that is nonsense. Cancer happens to people with no healthcare insurance, with no death benefits, with newborn babies and bright futures. It happens to me to you and to anyone it chooses. Old age is a gift granted to a few -- the rest die of "something" like drowning in a car, in a pond late at night when a senator leaves you there, escapes into the night and doesn't call the police to help you because he was drinking. You die young and your name is Mary Jo. Mary Jo would probably have chosen to die of cancer in her 70s rather than drowning in her twenties.

Sent by Liz DeWitt | 12:48 PM ET | 05-21-2008

I expected people to read the post about Mary Jo and comment, so I felt no need to...but nobody has, apparently.

Let's keep politics and blame out of this, can we? Can you, Liz, focus on NOW rather than muckraking the past?

Would YOU appreciate it if somebody started pointing fingers at YOU for a horrible mistake in your current biggest hour of need? I'm sure you've made some bad decisions, too. Maybe not leading to a death, but still, are you perfect?

Your sympathy means little when it's qualified by judgment. You might as well keep it to yourself.

Sent by Bruce | 7:11 PM ET | 05-21-2008

I've been reading your blog since we saw the living with cancer documentary, but this posting on May 20th is the first time I've commented.
My fiance of 20 plus years (we never married) died of lung cancer this past January 26th, 21 months after his diagnosis. In the final two months of his life he confided more in a family member than me, and I was angry at him for that plus some other (now) trivial things. Therefore I missed the signs that he was getting worse and he didn't tell me how he was feeling. We took him to the hospital on Saturday the 19th, brought him home on hospice on Wednesday the 23rd and he died just after midnight on the 26th.
I will never be able to forgive myself for missing the signs and being angry for stupid reasons when I should have known he was nearing the end of his life. I will be tortured forever for not having spent better quality time with him those last two months.
For all you caregivers out there, while its good to keep life as normal as possible, never forget that cancer is unpredictable and can take your loved one at any time. I always thought that I'd have another few months to a year with my Jim and we would do a lot of talking and remembering when he became bedridden - I never got that opportunity. Cherish your time together, you don't know how long it will be.

Sent by Laurel | 9:04 PM ET | 05-21-2008

I was with my mom every step of the way. She was given 3 months to live with the terminal stage 3 lung cancer diagnosis and recommended palliative treatment. She fought for 1 year and 3 months. It's been nine months since she's passed. Let's just say that I am not over it. But I am very satisfied with the decision to care for my mom.

Sent by mary | 2:06 PM ET | 05-22-2008