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    Marybm posted an update

    It's been over a year since I lost my daddy. Most of the time I'm ok. Most of the time when I think of him, or when someone brings him up....I smile. I love hearing stories about him. I love thinking about all the great times we had. All the memories. But sometimes....I just miss him so much. Sometimes, it just hurts so bad. I still pick up my phone, ready to call him, and the pain I get in my heart when I remember I can't takes my breath away. I get mad at my brain, like why do you still think you can call him? I don't know why I'm so sad today, some times it just hits me. And the only things I can think about are from that day. I hate that I can literally pin point the worst day of my life. People always say "Ugh, today was the worst day of my life'...it's almost a figure of speech, right? It's not a figure of speech for me anymore. November 5th 2013 was the worst day of my life. I lost my dad. The most important man in my life. It's weird how many details I remember from that day. I picked up my cousin from the airport, she's pretty much like my sister, my parents basically raised her. She wasn't going to come home until the next day, but I lied to her and told her everyone was flying in now, so she changed her flight. We went and saw dad. I remember asking her if she was sure she wanted to see him because he wasn't really conscious or anything. When ever someone would come to see him, they didn't expect that. We had kind of gotten use to it. He'd wake up for a few seconds a couple time a day, but that was about it. I know he could hear us though. I remember one time when he woke, I told him I loved him, and he whispered " I know." Anyways, me and my cousin and my brother....we just sat with him that day. I told him she was here. He had called her a week or so before and told her to be there for me and my brother, and she was. She was here. We were all together. I don't know what was so different about that day, but when we left....I kissed him and told him goodbye. I don't know why I told him goodbye that day. Every other day I just told him I'd him later, or I'd see him tomorrow, but that day I told him goodbye. About an hour after we left, we got the call. I just remember holding his hand, until I wasn't allowed to anymore. One thing I know though, I want to die in a hospital. I hope I die in a hospital. Or if I win the lottery or something, I'm going to open a funeral home. A good one. I hated how they took my dad away. I still can't get that image out of my head. I'm sure I was just super emotional, and I probably would have hated anything they did, but watching them take him, was the hardest thing. I held it together until they took him. My dad always made me promise not to cry for him, I think it hurt him more to see us cry, than it did to know he was dying. So I always tried hard to keep my promise to him. But I lost it when they took him. Anyways, I'm just rambling now. But, I needed to get it out. Sometimes, it just hits you like a brick. And I hate talking to people about it. My step mom shared this quote on facebook, something about how grief is so hard because people stop having sympathy. I hate that quote. I don't believe in that quote. I don't need sympathy. I'm still here. I'm still alive. Grief is so hard because you lost someone you love, and you have to keep going on without them. It's so hard because they are not here to live their life anymore. You don't get to watch that amazing person be amazing anymore. Life goes on without them, no matter how much you want them here. Anyways, I just needed to get that all out, and what better place.

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    Marybm asked a questionPancreatic Cancer

    Pain/nausea after whipple

    7 answers
    • Russ' Avatar
      Russ

      Hi Marybm, the pain,and nausea are common after such major surgery. Others have given you the same advice, but stick with what Blue asked. Is your father taking any enzyme pills? Everything we eat goes through our pancreas, and after major surgery your body/pancreas needs some help in digesting food and sending nutrients to where they belong. I take 12-14 enzyme pills every day. If your doctor is not prescribing enzyme pills for your father...ask him for a prescription. I vomited every day while under treatments, and even after nearly 13years I am in a constant state of mild nausea every day. Now that could certainly be a long term side effect or simply because I take 37 pills a day plus 4 vitamins. Is he taking any pain pills? You mention his weight loss...I lost 50 lbs and weighed in at 130 lbs...a scarecrow of my former self. Rather than a protein drink Ensure...drink Prosure. It is a drink that was designed specifically for people with pancreatic cancer to have a better quality of life. I don't know if it is still on the market...check it out. The pain and nausea are not uncommon.

      My name is Russ, I am nearly 69, and I am a stage IV, pancreatic cancer survivor of nearly 13 years. There are a lot of good pieces of advise, dieting, small potions, protein drinks, etc.
      Good luck...Russ

      over 3 years ago
    • Marybm's Avatar
      Marybm

      Thank you all for your answers. Unfortunately, we found out today that the cancer was back. I don't even know what to think. I was not prepared for this at all.

      over 3 years ago
    • JMS's Avatar
      JMS

      Hi Marybm - this might be totally irrelevant to your Dad's situation, but let me share that some weeks following my Whipple in April 2012, I too began to experience significant pain (this would have been about 4 weeks after surgery). I checked in with my doctor and a CT scan revealed that I had 2 abscesses on my liver (likely caused by contamination during the Whipple). I had to be re-hospitalized and ultimately treated with strong antibiotics for about one month to get them to disappear. So, this might be something to consider.... Good luck to you and your Dad. JMS

      over 3 years ago
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    Marybm shared an experience

    Procedure or Surgery (Surgery): My dad had surgery to remove is tumor! It might have been the longest day of my life, but they got it! I have never felt more relieved than when the nurse came out and told us they got the tumor! It took the doctors about four hours once they started surgery to even decide if they were going to try to remove it since it was wrapped around a vein. The surgeon said everyone told him not to do it, but he did it anyways. And I couldn't be happier he made that decision. After about ten hours of waiting around in the hospital waiting room, the surgeon came out, sat down and said "Well, we hit a home run!" Which couldn't have been more fitting since all day we were talking about "Forget baseball cards, can we get this guys autograph and frame it!" He removed the tumor, did the whipple, and all the tests they did on tumor came back that it was already dead. It has been about a month since the surgery. Recovery seems to be going slow, but it was expected. He was in the hospital for about a week and a half, then he got to go to the hotel for two weeks (we live eight hours away from the hospital) then he got a little dehydrated and such because he was having a hard time eating so he went back to the hospital for about a week, but now he is home! He lost a lot of weight, but is slowly starting to eat more and get out more. It is kind of hard because when the surgery worked, we all got so excited to get our dad back, but the recovery is taking so long, and he is so tired all the time, he seemed to have more energy during chemo. But all in all I cant complain. My dad is alive. And right now, cancer free!

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    Marybm wrote on carm's wall

    carm,
    Thank you for posting on my question about positivity. It is kind of crazy how you knew my step mom has been making this more about herself than my dad, when I tried to not even get into that part much. Thanks again

    3 Comments
    • carm's Avatar
      carm

      Marybm,
      I not only work in oncology but (1) - I also work in End of Life care and (2) - My specialty is gyne cancers so I know all too well the emotions of a woman in distress. I am here if you need any help with discussing the matter with her. In End of Life care, the only effective tool you have is a good conversation. If you wish to talk off the site by voice or email, just let me know and I will help assist you in any way that I can. Best of luck, Carm.

      about 4 years ago
    • Marybm's Avatar
      Marybm

      I want to talk to her. But I think she will be offended. So I am a little scared that it might cause more problems. I don't want to stress my dad out anymore than he already is. He keeps telling everyone that no matter what happens to him, he needs me and my step mom to get along. I don't want to fight with her at all. When I told him she was making me mad because she tried to tell me that my dad would be busy the days before surgery and wouldn't be able to see us, when that was a complete lie, he just told me that she was freaking out not to worry about it. I just don't know if I should keep my mouth shut. or say something. Its kind of driving me crazy.

      about 4 years ago
    • carm's Avatar
      carm

      I will send you my email and if it will help you, we can practice that conversation together and I will teach you what to say in a role playing exercise. Presentation is the key, and as afraid as you are about bringing the subject up to her, thats how afraid she is of what she should say when you do. You are both on equal footing, but it is all in the way you present things. If she is irrational in her conversations then the best way to combat that is to mirror her words; repeat what she says to you back to her in the form of a question. Sometimes when we hear our words repeated we realize that maybe we are not thinking critically but instead responding to a situation without any forethought. I am here to help, Carm.

      about 4 years ago
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