update on Diana and I

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lindadanis
lindadanis Member Posts: 235
edited March 2014 in Esophageal Cancer #1
Hi everyone. Just thought I would update all of you. We are starting grief counseling this week for the both of us, thought it would be a good idea. Things have been ok around here, we have our days of being very sad about losing Ed and my mom. It was a terrible year and although I miss both of them terribly,I am somewhat relieved also that they are not in pain anymore. I just wrote a two page letter to Ed's oncologist, actually I wrote the letter to the head doctor where he was going. Ed's doctor never never called me, wrote to me, nothing after Ed's passing and I was very very upset. I waited a month and never received nothing so I sat down yesterday and wrote a very long letter about how I felt they let Diana and I down.
We saw this man, every week, for almost one week, how disgusting that this doctor did not even take five minutes out of his day to call me and pass on his sympathy to us. yes, I realize that we are not the only ones in his treatment center, that life goes on, etc., etc., but believe me I am feeling very let down by all of them. The nurse who basically was Ed's nurse thoughout all his tretment did not even know that Eddie had died for almost tweleve days after his death. I found this a total outrage and I am hoping that my letter will leave some sort of impression to this head doctor to teach all his "doctors" to put a little compassion into their lives, make that one phone call, drop a small note in the mail.
I will keep you updated on this, I would love to hear from all of you, especially you William, on what you think about this subject, was I asking too much?

Life without Ed is certainly different, we can now go out without worrying, we can sleep throughout the night without worrying, you get the drift, the big worry is over. No, not all the worrying, I still have my worries about us, about what the future will hold for us, it is not all over by a long short, but in short, we now can go out and not have to worry about Ed.
I miss him so much, after all, 27 years with one man is a long time. I have looked back over and over so much about how he acted the past year, I do believe that the brain cancer must of been there for a long time because this was NOT the man I spent all those years with.
I have learned to let go of the anger, I did that the day he died, I let go of alot of things for my own sake and for Diana'. I truly believe that Eddie got cheated out of life, he was only 55 years old, he will never see Diana get married, have children, retire from his job, grow old with me, it is so sad and he will miss all of this. Maybe this is what he was thinking all those months????? I have a much new opinion about people dealing with cancer, never having to be around it most of my life, it has changed me forever. No one asks to be diagnosed with this horrible disease, it is not fair, it is not fair for them nor their families. The entire family is deeply affected by cancer. My life will never be the same now, I know it, but I am trying to accept it. I miss my friend everyday, everynight eating dinner, watching tv, having our coffee and desert together. I just plain miss him.
I miss my mom, not having her to call to talk about losing Ed is weird. I think about both of them everday. I lost two of my best friends within one week of each other, it is alot to deal with but I believe that they are together, maybe they are both on Ed's new bike together, I must believe this or I will go nuts. My mom felt like Ed was a son to her, she was devastated when he was diagnosed last year and always told me that they would die together, she must of have known something because they almost did. In some sense, I have a sort of relief that they are together, a weird relief, but a relief. The upcoming holidays are going to be tough, I am expecting this. Missing both of them, not having them at the Thanksgiving table or under the Xmas tree will be so sad and strange. I am not looking forward to the holidays at all. I know that time, and only time, will help heal.
I am awaiting for a beautiful stone to be put on Ed's grave soon, Diana and I picked it out together a few weeks ago. Ed is buried on the same street as we live, we can actually walk to his grave so we visit it quite often.

well I think I have gone on and on this morning, just have been thinking of alot of you and wanted to say "hi". Cannot say everything is fine but you can get the drift, we are doing ok. We have each other and that is so important and I am so blessed to have my daughter with me. We stay strong for eachother, we are so lucky.

Will keep you updated on the doctor's situation and also keep you all in my prayers.

Love

Linda

Comments

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  • zinniemay
    zinniemay Member Posts: 522
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    a kind word
    I think like you do. Greg went to a specilist and had his first sugery, the specialist told him cancer but not to worry he would be there for him. He sent us to Ann Arbor. When Greg had another problem and needed to go back, they set a appointment but not to see the doctor but a staff person. We have never seen the Specialist doctor or had a call or his office call for a check up nothing.
    This Ear Nose Throat doctor (Who was the speicalist) I blame way to much. Greg went to his in 2007 or 8 complaining about his throat . Greg did not know that he would not see the Specialist that he would see a staff person. When done the guy say I don't see nothing but better have the doctor look next time. Greg was so mad he told them why pay to see a speicalist and see a staff. So he wait still he could hardly talk and had to go back to the same specialist. That is when the found the cancer.
    I am not sure I am saying this right. But I think had he saw the specialist things would be different. Had he saw the specialist he was paying to see things may have turned out not to be Stage 4 Ni Mo Larynx cancer squamous cell. I am very angry. Heart is breaking everyday. I am angry .
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
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    Hello Linda
    Thank you so

    Hello Linda
    Thank you so much for your recent update. Yes, I totally get your "drift". My family and I are going through the same situation. It has only been 7 months since Dad's passing. You are not alone with the "dr" situation. I called my dad's primary ongologist and his nurse the night he passed away. That was the last time I ever spoke to them or heard from them. They did not even send a sympathy card. We know that they are very busy, they have lots of patients they are taking care of, but come on! At least send a sympathy card to the families of patients who have passed away! I am glad you wrote a nice long letter to Ed's dr. That was very helpful emotionally for you. Yes, the holidays are approaching......we have to make ourselves remember the many years of holidays we did get to spend with our loved ones. Think of the gifts, the meals, the quality time we spent with them. I will also be thinking our loved ones are celebrating their own holidays in Heaven, cancer, pain, and worry free! God bless you Dianna and family. May God continue to give you and all of us the peace we continue to need at this most difficult time. Keep in touch.
    Tina in Va
  • lindadanis
    lindadanis Member Posts: 235
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    unknown said:

    This comment has been removed by the Moderator

    Sherri
    Sherri, thanks for posting and I have not forgotten to call you, your name is on my frig.
    I will call you later on today.

    Linda
  • Pghmomma
    Pghmomma Member Posts: 141
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    Hello Linda
    Thank you so

    Hello Linda
    Thank you so much for your recent update. Yes, I totally get your "drift". My family and I are going through the same situation. It has only been 7 months since Dad's passing. You are not alone with the "dr" situation. I called my dad's primary ongologist and his nurse the night he passed away. That was the last time I ever spoke to them or heard from them. They did not even send a sympathy card. We know that they are very busy, they have lots of patients they are taking care of, but come on! At least send a sympathy card to the families of patients who have passed away! I am glad you wrote a nice long letter to Ed's dr. That was very helpful emotionally for you. Yes, the holidays are approaching......we have to make ourselves remember the many years of holidays we did get to spend with our loved ones. Think of the gifts, the meals, the quality time we spent with them. I will also be thinking our loved ones are celebrating their own holidays in Heaven, cancer, pain, and worry free! God bless you Dianna and family. May God continue to give you and all of us the peace we continue to need at this most difficult time. Keep in touch.
    Tina in Va

    Linda
    I could have wrote that post. I feel so lost with out my dad. Its so sad, its been 6 months. I just feel like he was cheated. My mom feels the same way. He was only 55 years old. He did get to see me and my sister marry, have kids but he didnt get to grow old with us either. I have sooooo much anger inside for this. I talk daily, sometimes several times to my dad because I cant get over all of this. We went from one day him working and eating well. The next hearing he was cancer free and the next day him sick in the hospital. I know this sounds silly but death was never an option for us. He was stage 111. He was doing good. Had surgery in Dec followed by chemo. He breezed thur it. Now he is gone. We put him thur hell for what... For him to die anyway. Its just sooo sad. Now the dr thing.
    We did recived tons of cards and calls from his dr's but only because his Onc felt like it was all his fault this had happen. Frankly it was. If I were in your shoes I think I would of wrote a letter too.

    Im sorry for jacking your thread sweetie but I do want you to know that Others feel the same. I know that this thanksgiving will be VERY hard on me. My dad was here with us last thanksgiving but this was right before his dignosis and it was so hard to go and see him cause he couldnt enjoy thanksgiving dinner cause he couldnt eat anything. Then his birthday dec 5th. He couldnt even eat cake. So we did Ice cream cake. Then his surgery dec8th. Then xmas which he spent time in the hospital for that from having a leak. Then he was free till April 1st which leads to easter in the hospital. Horrible time for my family coming up as well.

    I will keep you in my prayers.

    My poor mom is having such a hard time which she hasnt been back to work since all of this happened.

    God bless
    Tina
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  • MOE58
    MOE58 Member Posts: 589 Member
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    Linda thanks for the update,
    I canot imagine what you and Diana are going through. You are one strong woman!!! I think of you two going to the grief couseling is a great idea. Yes the cancer made the mean person in your husband, and sometimes we say words we never meant but as a caregiver its hard. I know that Jeff's cancer made him the person he is now, I learned so much going through Cancer with him, and I would do it again if not with him someone I know. You are so right we don't ask for this beast but somehow it appears, I think if Jeff wouldn't of gotten cancer I would still be with him today, I will always have a special place in my heart for him, when you go through the journey of chemo, doctors visits surgery more chemo and etc, you just cant give up on them. We are friends and friends is it, but i will always know how to deal with cancer.

    As to the holidays, yes its tuff, I lost my dad in 2005 with colon cancer that first fathers day, thanksgiving christmas and birthdays was the hardest knowing he would not be there to eat with enjoy holidays with and i cried more and more i was a daddys little girl. Then in 2008 I lost my mother unexpectedly one week after mothers day, once you loose both parents you feel like an orphan with nobody around.


    You do get through it and cope but you will never get over it I miss my dad very much just like both tina's do. But i know my parents are now in heaven together enjoying life.

    I wish the best for you and Diana and know we are all here for you

    Lori
  • oriontj
    oriontj Member Posts: 375
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    Linda I have been thinking
    about you and Diana...praying time is helping to ease the grief just a teense...though I'm not sure it can...but hearing you are ok is good news..

    orion
  • oriontj
    oriontj Member Posts: 375
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    Linda I have been thinking
    about you and Diana...praying time is helping to ease the grief just a teense...though I'm not sure it can...but hearing you are ok is good news..

    orion
  • lindadanis
    lindadanis Member Posts: 235
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    unknown said:

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    A reply to William
    Dear William, thank you so much for your lovely long post. I am trying to be careful about my emotions and about the doctors and yes, I totally agree with you that they went overboard with his treatment considering he was stage four with mets right from the beginning, however, I feel that Diana and I have a relationship with Ed's doctor right from the start, we were there EVERY visit, she took a year off of school to be with her dad and his doctor knew this all along. We did not ever drop Ed off and go out shopping, we sat in that chemo room every single time and was with him every single visit., therefore, I feel that Dr. O'Connor should at least called us. He once asked me at one of Ed's visit when we were alone " do you think I come off cold"., and I thought that was an odd questions from an oncolgist. I often thought did he new wife say something about his demeanor and being cold. I replied then "no, I don't think so". So now, after a year, my answer would be "yes"., because I do believe that when a doctor has a relationship as close as we did, they should take five minutes out of their day to extend their sympathy to a family. They choose to get into this field, they must remember that the family are the ones who are left behind, that just want a little closer. Ed's last five days in my home Willam was a total nightmare, I don't remember if I even posted about it, it is such a blur to me. His death certificate read " last four days accute delerium"., he went to the hospital on September 13th and died September 15th. From Saturday to Wednesday, he never slept, he tore his clothes off, he told me he was going to get out of the bed and hit me, he was in/out all the time, but William, they gave him morphine, ativan, haldol, in my house for two days and nothing worked, nothing calmed him down.
    \
    In short, Ed did not die a peaceful way and this has alaways bothered me. Why was he acting his way, was it the decadrone med's, brain cancer, did he go nuts???? I have this memory in my head of this and it haunts me. Do you understand now why I needed to talk to his doctor?
    My mother, on the other hand, died very peacefully, on the morphine drip, I was holding her hand as she slipped away. It was a very totally different death and I'm glad I was there to witness it, it showed me that there is a way to die, not fighting, not behaving crazy. I believe God put me in her room to show me the difference.

    So William, I am writing to you to try to make you understand my reason for writing to the cancer center. I believe that I needed to talk to Ed's doctor to put some closure to this.

    Thanks for writing William, I always appreciate your words.

    Love

    Linda
  • emg09
    emg09 Member Posts: 228
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    oriontj said:

    Linda I have been thinking
    about you and Diana...praying time is helping to ease the grief just a teense...though I'm not sure it can...but hearing you are ok is good news..

    orion

    I know how you feel
    This Saturday will be 6 months since my dad passed. It's so hard to believe. This Thanksgiving, 11/25 would be my parents 44th anniversary. I'm so dreading the holidays. I'm not sure what we are going to do for Thanksgiving this year, but I must say I really don't feel like doing anything. BUT, I know my dad wouldn't want us to feel that way. Christmas will be just as sad. Every Christmas Eve we would have German food and he would do the cooking. Last Christmas he was too sick to even be near food, so we didn't get to celebrate, but I did make an attempt to cook and I talked to him about it. I know he's no longer suffering and I will miss him forever. My mom seems to be doing ok. She misses him terribly, but she is doing what she can to get by.

    As for the Dr. I will say I was amazed that his oncologist sent us an email about how sorry she was to hear that he passed. I never did ask my mom if his general practioner sent her a card or anything. I guess they just don't know how to handle things.

    Anyway, I rarely come on here anymore. I seeing more new people come on. It makes me so sad. I do think about the site often. I was so grateful for everyone's help during this difficult time. Take care of yourself and Diana!! Everyone else, take care and keep the memories coming.

    Erika