My 2 cents on guilt/regret

[KatieB]

I haven't posted about my grief in a really long time. I feel like I am still grieving, everyday. Sometimes it's just a moment where I am reminded of something, othertimes I am overwhelmed for an entire day or two or more.

I don't think I'll ever get over it, but I know I am walking thru it, at my own pace, what's comfortable for me.

I can tell you that he is a part of everything I do, and some part of every one of my days.

On our vacation, my son was on the beach building sandcastles. He carved a boat in the sand and called me over to him. He said.."Look mom! I made a boat for grandpa like the one he made me! Think he can see it? (I told him of course) and he looked up to the sky and yelled- "Hey grandpa! You like this boat?" and cracked a grin which revealled his one dimple on his left cheek. (happens to look just like his grandpa's grin- and the same dimple on the left side)

There have been some posts in this forum about guilt and regret. Although I don't have any emotional regrets when it comes to my relationship with my dad...boy do I have some guilt.....

With all my research and knowledge and contacts...I couldn't "save" him.

I should have insisted he get the PAC when he first started treatments to save him from those blown veins and black and blue arms....the vision of his pain and suffering each time blood was drawn or chemo was given- still haunt me. He was 119 pounds and his arms were the size of my wrists for about 4 months- I won't describe the dreams I've had about his arms and those needles....

I should have insisted on a bone scan regularly. (With his dx., many doctors just wait until there are symptoms- then it usually is too late.) His cancer has metastacized throughtout his skeletal system by the time he had the bone scan.

I should have enrolled him in clinical trials.

I should have done more....

It took me a long time to realize that we ALL feel this way in some form or another. Whether it is guilt or anger in reflection of their illness, the medical care they received, or the way our loved one died.

It's normal.

And I'm ok.

I know that, although I know so much more about this disease now, there was no way I could have done more at the time. I couldn't stop what was happening to him- no more than I could have stopped a speeding truck with my two hands from the immenent.

And for those of you who have guilt over your loved ones death....please try to remember...

They wouldn't want you to carry that in your heart.

I personally have to believe that I will see him again...that he is where he is meant to be and one day, we're all going to be together again. It's not easy at all- but I honor him and his memory in how I live everyday.

I am praying for all of you who are grieving to find peace. My heart hurts when I read your posts. I truely do understand, I've been there or been close...and I am here for you.

[Maryanne]

Thank you for sharing that. So many of us feel the same way you do.

I love the pic of your son with the boat... Priceless!

Maryanne

[shelliemacs]

Katie,

I too have those "What if I did this or that" moments.

I see something that makes me say "Wow mom would have loved to help with this" or "Dad would have loved to show me how to do that"

It is like you said, a daily, hourly, minute, moment by moment process and maybe you never do "get over it" you just grow to accept and live with the empty spot that has been left.

Its been 2 years 6 months and 10 days for mom and 1 year 9 months and 15 days for dad and I still have those "flashes" during the day that give me pause and the miss them feeling hits me again.

[Alisa]

This must be my day for tears. YOur message hit home with me. I went through all those feelings with my mother's death, and then again with my father's death, when I feel I should have known better (his cancer also spread throughout his whole body, first the bones, and then by the time they caught it, it was throughout his lungs. Your post really helped me put things in perspective and I thank you.

By the way - your family is absolutely gorgeous! I love looking at all the pictures you have posted.

[Don Wood]

Great picture of the lad! Katie, thanks for your post. I know it touched a lot of people. My comment to you as a father: You did the best you could with what you knew. Your love of your dad is the most important thing, and he felt that, I know. We are all smarter on MOnday after the game. So we use that knowledge, not to beat up on ourselves for the past, but to be wiser in the future for ourselves and others. You have used your knowledge to help so many here -- give yourself credit, okay? Love you. Don

[michelepal]

Thanks for the post! Your son is adorable..

Michele

[RandyW]

Today would be 3 years for Debs Fight and survival Annoversary. THANKS KATIE I understand completely what you are going through. Think I am rambling but trying not to cry. so much for that.

[KatieB]

Thanks yall. My hugs and prayers and love for each of you.

[stand4hope]

Dear Katie,

I only had a short time of guilt. I was always 100% supportive of every treatment Don had. I knew he was strong and understood that he had to do everything he possibly could to try to beat the cancer. When his only option was to try another chemo and have stereotactic radiation to his brain - again, every fiber of my soul told me it was not good.

After the first two infusions, I knew he was having trouble breathing, and yet he sat in the doctor's office and told him he wasn't. I didn't say a word, knowing he would have been furious with me for telling the doctor. I knew he was having some cognitive issues, but again, I let him take the lead. He was 100% competent and they were his decisions. I was nearly sick to my stomach when he went in that room to get the third infusion, but he told me he had to try.

As you know, the cognitive issues quickly turned into seizures and the chemo killed him. For about 2 or 3 days, I kept wishing that I would have said something, but then I suddenly realized that it wouldn't have made any difference. If I had said something, Don would easily have convinced the doctor he was fine and he could take it - which on the surface appeared to be true, plus he would have been so mad at me that life at home would have been difficult.

His unusual reaction to the chemo could not have been anticipated by anyone, yet the chemo had already begun to destroy his lungs with the first two infusions, and nobody knew. It could not have been reversed even if he didn't have the third infusion. The third infusion just sped up the destruction. So, my guilt was short-lived, but it was there long enough to hurt.

Anyway, thank you for your post. I LOVE IT that your son shouted to his grandpa like that. Boy, did that make me smile!

Love,

Peggy

[Kel M]

Ah Katie,

Your post brought tears to my eyes. I've felt and thought much of what you wrote about since Mom died 10 months ago. I also know, as you so eloquently put it, that our loved ones would want us to lead healthy and productive lives. It's absolutely the best way we can honour them.

God bless, Katie.

Kelsey

[RandyW]

rereading your post I am glad your son realizes where grandpa is. I talk to Deb every night like that and I am not kidding. It helps me a lot. Happy for you guys. We are In a Great Place.

[jduenges]

Thank you for sharing that. I completely understood everything you said about guilt and regrets.

Jackie

[Ann]

Thanks for sharing your thoughts with us. I know this post must have been a hard one to do. I know your dad loved the boat!

[J.C.]

Katie,

Thank you for your post,

it is the way we feel so often after the loss

of a loved one.

The IFS are the worst and we should get over

them as soon as we can, we don't see the future

and those IFS could have been worst than the

reality we lived.

The grief will stay but our outlook will be

much better.

Beautiful picture of your son.

Thank you again Katie.

Hugs

Jackie

[Jyoung20]

Tears

There are many angels among us!!!

[Remembering Dave]

Katie, my ten cents . . . and I think I need this.

some people may gasp - but I have NO REGRETS OR GUILT about what I did or didn't do for Dave. Because I know I was there for him every single step of the way. I was at every meeting with every doctor, by his side at every hospitalization and ER visit - I researched, advocated, and when necessary (and usually requested by Dave) raised hell with nurses and other medical personnel to get stuff done. and the best thing is, Dave knew it, too. One time, a few months from the end, I told him I wanted him to know I was sorry for every cross word we'd ever exchanged, and he got mad - STOP IT NOW he said, because it didn't matter and we both knew it. I am human, I do have MOMENTS when I think "what if" but I know there are few what if's and I had no control over them. also, his onco doc told me after he died - I called him from the hospital, he was probably the third call I made after Dave died - and he said, Karen, take comfort in knowing you did everything for him you could. We both did.

I really have more regret about my Mom. Alot of her death could have been prevented. I wish I'd forced her to be more assertive in her treatment. But I was dealing with Dave at the same time as my Mom, and no one, not even my Dad, could force her to take chemo that she didn't like the side effects of, etc. the whole first year Dave was diagnosed with cancer, my mother was seeking help for a myriad of mysterious symptoms, and I didn't have the time or attention necessary to advocate for her to get proper help, I was to wrapped up with Dave - he had cancer, and my aging mother had aches and pains (which turned out to be cancer). so that nags at me, but I just can't let it . . .

I think I feel a little better airing this, thanks for bringing it up.

karen

[KatieB]

I think it's wonderful not to have any regrets!

For us, 3 1/2 years ago, we only knew of 3 people with sclc- Cindy, Bess and Sam. And they were in the middle of it all like we were. We didn't have other's experiences like LCSC provides now for our new members. Dad and I were swimming blindly so to speak. LCSC was new and had few members and we didn't have any other support or points of reference.

A few months after he died, I had a meeting and toured Mary Crowley Medical Research Center. This was during all the press and media coverage of the GVAX vaccines and new cell and gene therapies that were around the corner.... wow, was I impressed........if only...

I guess I don't have regrets over anything that was done, just bittersweet thinking of all that could have been done had we known, and had it been available.

Like Don said, Monday afternoon quarterbacking....

I am ok with it all now. And it's this organization and the support that we offer and the survivors that are here now that make me ok.

God Bless

[Remembering Dave]

Katie, I think there's a difference, maybe a big one, between personal regret and the what if's of what could have been done if only the treatment had been there, etc. As long as you know you did all you could, you should have no regrets. and I know you must have been there for your Dad, you started this website while he was very much still alive, I remember that, and of course you were advocating for him big time. I remember that.

maybe our conversation will help someone else. sometimes it's awfully hard to be the one left behind, but I try to remind myself that life is a gift from our God, and we are not doing Him justice if we don't try to enjoy every day of it. So I try to push through the pain and find happiness in this big gift of ours.

Karen

[KatieB]

but I try to remind myself that life is a gift from our God, and we are not doing Him justice if we don't try to enjoy every day of it. So I try to push through the pain and find happiness in this big gift of ours.

Great words to live by. I hope this thread does help someone. Thank you.

Hugs,

[Tiny]

Katie-

Your sentiments are heart rending.

Your support and leadership of this site is nothing short of miraculous. I'm sure your dad is proud of what you are doing with your life.

The beach picture is coo! Cute guy!

Thanks and love.

[shirleyb]

Katie and Karen, thank you both for you heartfelt responses on this topic.

I know for me I had alot of guilt and regrets at first. But in time I came to realize I did everything I could for Randy and also for my mother when she got ill and then passed away.

We are human. We all do the best we can with the sometimes too little bit of knowledge that we possess. We trust our medical community to have answers but we sometimes forget that they too are human.

I finally came to accept that God has a plan for each of us. When our loved ones suffer so greatly like alot do because of cancer, no matter what form it is, God takes us into His Arms and gives us our greatest reward which is peace in heaven. We then become free from pain, free from hurt, free of the worldly stresses that take us over.

For those of us that are left to continue on living, it is living that each of us must do to the fullest possible extent that we can. We struggle to find those things that make us smile. We struggle to come to peace/acceptance with our losses, we struggle to keep living as our loved ones would want us to. It all takes time. And we all go on at our own pace.

In time, I have found I can smile again, I do laugh, I do enjoy the sun shining on my face. I still cry, I still think of those I have lost. That just means I loved them and was loved by them.

Thank you to all who have shared in this journey.

Thank you again for all you do Katie.

Praying for all of us.

Shirley

[bethluvswill13]

Thanks Katie B! Im one of the one carrying guilt and that helps me view things a little different.

[lilyjohn]

Thank you Katie.

I have learned that most people struggle with the guilt and regrets. I had a very hard time with those issues and only now while trying to help my family with the loss of their Dad and Paw Paw have I been able to put those issues to rest.

It is natural to say I could have, I should have and what if I would have. Those are all things that we go through. The truth is that we learn those things as we go. Most often we learn because we didn't understand as much and the outcome has left us shattered.

Right now my children are going through much of the same thing. Looking back they can see evidence that their dad was sick and didn't say anything. They feel guilty. For just a moment I felt guilty about my divorce but I know in my heart it was the best thing for both of us. My grandchildren regret that they didn't go to a party with him or that they didn't say something about a hundred different things.

We are all human. We have no idea what life has in store for us. If we did we would probably try to avoid living because we would be so afraid. Grief and loss are a part of life. Regret, anger fear and guilt are all a part of grieving just as much as sorrow. We can not avoid those things but like the sorrow we can learn to accept them and move on from there.

One thing I have learned over the years with all of my losses is that grief has no time. Grieving is a life long process. The intensity will change but that too has no set sequence. One day can be the best we have had in years and the next we will be back to day one.

I have come to accept the fact that everything happens for a reason. We may not understand that reson ever in our life but we can learn to accept it. Each experince in life is a lesson that we are meant to learn. Sometimes we may stray from the path intended for us and then we will get what is often a not so gentle nudge to put us back on track.

My adive is to live each day to the best of your ability. Give as much love as you can and know that even if you don't see it at the time you will always recieve more than you give. We honor those we love by taking everything we learn from that love and passing it on to others. Love is never meant to be stagnent. It is meant to move from one to another. The person you love and lose is not gone they are just out of sight for a while. Someday we will see them again and then we will know the answers to all of our questions and be able to put all of those regrets to rest.

By what you and Rick have done here you have passed your love on to so many others. Had it not been for the heartahce that you suffered there would be so many of us still floundering, trying to find a way to deal with our fears and heartache. Your dad gave many gifts to you and in the end those gifts were passed on to thousands. What a legacy for a man to leave

[Remembering Dave]

Shirley, you always say the wisest things!

I, too, had complete trust in God's plan, and I actually tell Faith that Daddy went to heaven because only God could fix his boo boo, the doctors couldn't, so God is fixing it. That seems to work pretty good with her, but because she's tons smarter than I am, she's come up with a rebuttal: why can't he come back after it's fixed? wow, good question!

But you know, I was almost happy for Dave as he took his last breath. I knew he was going to a better place.

Now, let me share part of what inspired me to be so proactive with his treatment and support. I'll never forget this. His onco doc (I'm his biggest fan) visited him in the hospital room that first week when he was diagnosed. He sat us both down, looked Dave straight in the eye, and told him if he didn't stop smoking, nothing he (the onco doc) did for him would save him. Right then and there I knew Dave would never pick up another cigarette, and I never worried that he would. Then he looked at me, and he said, there are other things he needs to beat this, and nothing is more important than to have the love and unconditional support of his loved ones, I think he will get that from you, but you need to know how important that is to his treatment. So right then and there I knew that I would always be as involved as possible and as supportive as possible.

I think sometimes dear ole' onco doc regretted those words, as I had a few minor battles with his nurse (his right arm)but we all remained friends and when Dave died he told me what a good job I had done for him. Biggest compliment I ever got in my life, from probably someone I have more respect for than anyone else I've met in my life.

sorry to ramble. just wanting to say that I feel fortunate to have had such a good leader in Dave's onco doc, otherwise, I might have floundered in my role.

Karen

[Andrea B.]

Oh Katie, your post brought tears to my eyes. You always continue to reach out unselfishly. We all do struggle with our different feelings. I have the same dreams and the what if I could have gotten her into see the doctor earlier or what if she would have received preventative chest scans. I used to dream about her sick all the time and slowly my dreams are replaced with her healthy and smiling. I know it is her way of reaching out to me.