On my mind…

me pop and terry2

Left – Terry, my sister, Middle – My Pop, Right – Wendy, me

I don’t talk about my family often, other than hubby and the furry babies.  But there is something on my mind, something that may explain part of sadness.

My father had liver cancer in 2013, he went through treatment (chemoembolization) and they got it.  It was a much easier way to treat cancer than anything I’ve ever seen.  He has been doing well since then….

Until his check up in December, well even then they didn’t think anything was seriously wrong.  When he had his initial cancer he had a large tumor that they got rid of, and he had a tiny little tumor that they left alone, but they have watched.  It hadn’t grown at all then at his December check up, it was an itsy bitsy bit bigger, so they decided to go in and do Radiofrequency ablation (RFA) and get rid of it.  They did this the near the end of January.  During that procedure the doctor found more 2 tumors.

This was supposed to be an in and out no big deal procedure, but it took my father a while to recover from it.  Last Monday he had the chemoembolization again on the remaining tumors, this procedure is less hard on him.  Now this coming Monday he will have RFA again on both of the tumors.

My father is 82 years old.  This is really hard on him.  It’s also really hard on my sister.  She is taking care of him.  She was taking care of him after his first surgery when I was put in the hospital for having seizures.  She was so worried about me she got my uncle to come stay with my father and came to help me, then she turned around and went right back to care for my father again.  For over a month now she has had no life of her own, she has only been taking care of others, and I don’t know how much longer she will have to do this.  She is normally very involved in her grandchildren’s lives, I know this has to be hard on all of them.

I haven’t been able to go see my father.

I can’t help either of them.

I can’t help but think….what if…

and I can’t help but feel worried, sad, and guilty.

 

When you have times when you can’t help others who you love, how do you handle it?

I shouldn’t feel guilty for being sick, but at times like this, I do.  Well, I feel guilty that my sister has to shoulder all of this on by herself.  I feel guilty that I can’t even be there to hold my father’s hand.  And I feel guilty that I felt better today than I have since I can remember.

After days of having vertigo constantly, yes I had 2 days of rotational vertigo that went on every single second, I woke up feeling amazing today.

I had a really good day…..it’s hard when I think about what my family is going through.

 

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15 thoughts on “On my mind…

  1. Enjoy your good days — that’s what your family would want. If you feel guilty every time you don’t feel really sick, then you’ll never feel well. I can understand, in a way, the guilt, but remember decisions and dynamics from times past play into this. Families are more than illness, they are complex relationships.
    You care, you worry, you feel guilty. Believe me, that’s more than some family members do about each other.
    Glad to hear you had a good day, even if it made you feel guilty. I know you don’t get many of those.

    Liked by 1 person

  2. Fist of all I am so sorry that you had two days of constant rotational vertigo! Ack! My heart goes out to you and I’m so happy you got a great day! I’m also sorry to hear about your dad’s liver cancer and your sister needing to step in and you desiring to be there and having all sorts of feelings that sound normal and valid. My heart breaks as you all are going through this!

    You asked, “When you have times when you can’t help others, how do you handle it.” The fact you are asking that question means you have a huge heart, Wendy. That is a beautiful thing. And guilt comes along with that sometimes.

    As George is severely chronically ill too- this happens often in our own dynamic. We will be laying in bed next to each other needing a meal, both suffering and neither feeling well enough to move. I will try to slide my hand to his and share my feelings with him and he shares them back. There is power in being able to say “I hate that it is this the way it is and that I can’t help you right now. And I hate you are suffering and that I can’t help you or even get close to helping you the way you need to be help.” We don’t do sorries in cases like this because it isn’t our fault we are so ill- but expressing our feelings can be really a load off. And maybe one of us does the almost impossible and gets food together and we eat and if George has been the one to sacrifice to feel worse for me by getting me food- I let him know how much I appreciate him to override the guilt. Words go a long way with us. Our dynamic is when we say the things we feel-it helps. Not everyone is like that. Even George didn’t communicate feelings until the last couple years. Some people have other “love languages” and words just aren’t a part of them. But even if they aren’t, I know I always feel better I said something and they heard it.

    For example, George went 8 hours away for his dad’s 70th and I couldn’t go because of health issues. And I get a phone call Saturday night and he is majorly ill. He’s had a sinus infection (shown on ct scan) for 7 months and the long acting antibiotics and prednisone did not help one bit-actually made him worse in some ways. Now he has a terrible cold he acquired on top and he is supposed to drive home today (Sunday). His plan is to leave early and stop every hour or so to nap. And now-I can’t drive any sort of distance because of medications and because of weakness in my legs which I am working on. But, even though I’d be no help and this situation would actually make me worse health-wise if I were there, I feel guilty I am not there to help him. How do I handle this when I hear his voice over the phone obviously suffering? I allow myself to feel the feelings-but not let them take me over. I tell him how I feel and what I wish I could do. And I tell him I love him and I believe in him and I pray for him. And that makes him feel loved. Thus, I feel better getting off my chest.

    My dad just had a complete knee replacement and my mom has been run ragged (they live states away as well) and well, I want to come down and support her-be what she needs as she is what my dad needs -but I can’t again because of my health. But,. I often tell her “If I were healthy, I would do this” and she is always very moved that I am thinking of her. It is as though I am caring for her even though I can’t care in the way I WANT to. She always seems happy to hear that I desire to take the burden away/help out/come even though I can’t.

    I’m not telling you my stories to compare because I don’t believe in comparison! Not being there for my dad if he had cancer would be hard on me too- knowing my sibling (who would never be like your sis btw) was doing so much-I would feel the same as you do. I hope I answered your question. There isn’t an easy answer is there? Its late and I ramble when its late. Forgive me. I hope i didn’t’ write too much about my experiences as I’m sure you need more comfort than advice. I’m just wanting to be helpful! Be easy with yourself. Sending you a gentle hug and love and hoping and praying things get better for your family.

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    • Kelly, No you didn’t say too much, or write too much about your experiences, I savored every word. And got some good advice.
      I have a hard time not saying I’m sorry. I think my sister takes that as me feeling sorry for myself. It’s not, it’s empathy for what she is going through.
      She doesn’t seem to like me saying, if I could I would. She says she knows, but I’m not sure she believes it. I took care of my mom. We were very close. I treasure every moment. My sister was able to help a little, but I was the caregiver. Unfortunately, that also means, I know what it’s like to not have breaks.
      My sister is much closer to my father than I have ever been. I do want to help, more than I can say. Sometimes I feel like I might be in the way.

      If I were healthy and close to you, I would love to help you and George out.
      It touches my heart so much how well you two handle things in your relationship when you are both so ill.

      I hope George’s sinus infection clears up soon, how horrible. And may he get home safe.

      Thank you always for your insight and advice. It will help me in many situations.

      You and George are always in my thoughts and heart.

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  3. Oh my, can I relate or can I relate? It’s one thing when our chronic illnesses or disabilities keep us from working well, interacting, etc. However, when they keep us from GIVING BACK well, it is really hard. Especially when we see others sacrificing more than they should have to if “only I were well”. I have learned that even on days I’m nearly crawling around on the floor to get to place to place, I can still FaceTime or contact those I love who are burdened with various things. My grandmother only did the phone – yet I could not. In her last year I fell in love with writing letters again because I wrote her so much. It was my way of “helping” since I couldn’t be there. Hugs to you and praying that like many of us with chronic, invisible illnesses, you continue to learn your value “in spite of”. HUGS, HUGS!

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  4. Guilt is a good emotion – it helps us to recognize when we need to correct course and do right ACTION within our CAPABILITY.

    When we act within our capacity, to the best of our ability and knowledge guilt is not helpful to anyone. As far as I can tell you have nothing to feel guilty about – sad, helpless, frustrated . . . yes, but not guilty!!!!

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  5. Wendy, on a good day, you pull yourself together and do something you can’t normally do. Whether that is taking a nice long hot bath, going for a walk with Stewart, or calling your family and telling them how much you love them. You live in such a bubble because of your illness that when your days are good, you have to POP that bubble and do something unusual.

    Your family knows what you are going through, more than most, so do not feel guilty because you can’t help out your sister or be with your dad. If you do not release some of that guilt, you will go crazy because it will eat you up from the inside out.

    Now, having said that, please, try to go see your dad if you can. I do not know where he lives but if Stewart needs to take time off to get you there, I know you will feel so much better even if you can only hold his hand.

    Hugz

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    • Thank you beaded path 😊
      My father is in SC, I will try to go soon, but it just hasn’t been possible.
      And there are some family dynamics that make it impossible when he’s at my sister’s. Long story.
      Before his first surgery we were going, but I got sick, sick and couldn’t risk getting him sick.

      He had his second surgery today. It was rough. I hope things are ok. My sister sent out v a prayer request.
      That’s all I really know.

      Happy late Birthday.
      I was thinking of you, just couldn’t get on line that day.
      xo

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  6. I understand guilt. When daddy was in NC and we moved away due to career and family decisions it was hard, so very hard. And then my brother, his POA, made it even harder. I understood that he felt abandoned, but he also had no right to chastise me for making what was already a very tough decision. A year later, Dad passed away. That was a year I did not get to be near him. It was hard. My sister and I came back for his last week of life and that was very important all around. My brother did not expect it and I think he was not crazy about it, but we came anyway. I beat myself up many times for making the decision about moving, but there was no other option for us. It had to happen. It still bugs me at times. I missed my dad, more than anything. My brother, well, he was fine. He had his wife to support him and she was a real gem with dad. So, for that part, I had no reason to feel guilty. And when I did live in NC, my whole family did all we could to support dad and take as much stress off of my brother and family as possible. I managed dad’s finances, brought him home on weekends, from assisted living, took him out for random meals, even on week nights after a hard work day. So, I did all I could when I was able. So…why do I feel guilty? It is likely because no matter how much I have done, nothing could ever replace that time I wanted to spend with dad. Silly, right? It was unavoidable, but I still have my moments of guilty feelings. I don’t have any sage advice. I only suggest that there is nothing to forgive about your inabilities. I seriously doubt that your dad or your dear, late mother would harbor any ill feelings for you. In fact, I suspect much the opposite. As a parent, my first concern is the well-being of my child. I suspect they would feel the same about you. It doesn’t matter the age.

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    • lisa, I know it was so very hard on you when your father was ill and you couldn’t be there. I also know you did your best, and I know you know that.
      I just need to let go of it and know things are as they are. If I could talk on the phone it would be easier. People keep saying call…I can’t.
      He’s not answering my texts. I’ve had no contact with him since February 18th. I hear how he is from my sister, but I’ve had nothing personal.
      I will try sending cards.
      I have been told that they are both happier when I have good days. That gives me something.

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  7. Having an invisible illness tends to anger family. I hope I am not talking out of turn. My family is ANGRY that I am not the old me. I look the same! I have gone through years of no one calling me or visiting me. I tried to help when my mom was having serious medical issues but was deemed unreliable. I send cards, I send tests, I go old school and write letters. Rarely do I call as that puts me in a very vulnerable situation. But I do receive some phone calls now and I will answer when anyone is trying to get a hold of me. I wish I had more for you, I don’t. I work with Fibromyalgia Awareness Groups with the hope that educating will eventually heal broken families.

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    • You aren’t speaking out of turn. It’s complicated with my niece and I. She stopped speaking to me before I got really sick. I had to learn she has issues that aren’t mine. It’s just that I feel everyone took her side, so to speak. She has kids, they deserve having a family. I can be on the outside. Frankly, I’m happier out here.
      We can only do what we can. You can only do what you can. People get angry when they don’t understand. They get angry when they do more than they want. When they feel like their life isn’t “fair”. We have no idea what it’s like to have an unfair life do we?
      I think I’m ranting a little.

      Liked by 1 person

      • I think you can rant screen do whatever you want! I agree, when people stop talking to us, it is absolutely their issues. My sister too, she has kids, I do not. Those kids need a family I do not… anyway, i like the idea of starting a tradition with my husband. I REALLY like that and I will! Thanks. Kim

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