Weight, Exercise, and Gynecological Cancers

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  • Tamlen
    Tamlen Member Posts: 343 Member
    edited July 2021 #42
    Dak82 said:

    Stay positive

    A good friend who has lived with multiple myeloma for 16 years reminds me to stay positive and take one day at a time. Both are hard for me these days. Like Rita and others I have always been the strong one and I certainly have not allowed myself to grieve because I don't feel like I'm at the point of grieving. But maybe I should be there. Even if the immunotherapy work we are looking at a slight life extension and the survivability rate afte EC moves to the lungs is pretty low. I don't like to look up the numbers but the realist in me felt perversely drawn to them.

    I still don't feel like I'm seriously ill. I certainly don't have my energy and my thinking has felt fuzzy recently. But I keep working full time and getting up in the morning to walk or stretch. I have only gotten morose with my sister as I worry about my family and how they will get on. I bring in 2/3 of our income and it will vanish. Those are the thoughts that intrude on me when I let them.

    Many of you expressed my thoughts on this thread. I don't dwell on the past much but I also wonder how much of a future is in front of me. I try to stay positive for my husband; he is having a rough time with this of course. I have rambled a bit here but I'm feeling a bit down tonight. I had my 2d Jemperli infusion today which makes my 4th immunotherapy treatment. We will do a scan in a few weeks to see if there has been any positive effect and I am scared to death of what we will see. I am tired and my chest hurts, making it difficult to take deep breaths. At times I want to just want to drop my guard and say how scared I am--for myself a bit but mostly for my family. Just let it all go. I think I've done that only twice in my life.

    Thanks to everyone here for being good listeners and better advisors!

    Deb

    Deb, not many months after I

    Deb, not many months after I was diagnosed at Stage IVB in 2018, I had an argument with one of my sisters after she told me I was "not allowed" to discuss my potential demise. I told her she was sticking her head in the sand. She told me that if I didn't stay positive then I deserved to die because I gave in. I still get angry thinking about her saying that.

    It has always seemed to me that we are capable and do benefit from being able to hold two truths in our minds at the same time: That we will fight the beast for as long as it makes sense to us individually AND we will make our peace with the possibility that we will not succeed. People often say to me that they can't believe how healthy and happy I seem, despite my dire diagnosis. I tell them it's because I can hold both of those thoughts as true at the same time. It drives me absolutely wild that people put out false positivity as a way to supposedly help me -- I always feel they're projecting their own fears with that, not really trying to help me.

    This is my long way of saying that it strikes me that it's not an either/or proposition. You don't have to stay strong for your family or drop your guard and tell them how scared you are. You don't have to make your peace with the possibility of cancer progression or "be positive." Could it be a both/and proposition instead?

    With love,
    Tamlen

  • MAbound
    MAbound Member Posts: 1,168 Member
    edited July 2021 #43
    Tamlen said:

    Deb, not many months after I

    Deb, not many months after I was diagnosed at Stage IVB in 2018, I had an argument with one of my sisters after she told me I was "not allowed" to discuss my potential demise. I told her she was sticking her head in the sand. She told me that if I didn't stay positive then I deserved to die because I gave in. I still get angry thinking about her saying that.

    It has always seemed to me that we are capable and do benefit from being able to hold two truths in our minds at the same time: That we will fight the beast for as long as it makes sense to us individually AND we will make our peace with the possibility that we will not succeed. People often say to me that they can't believe how healthy and happy I seem, despite my dire diagnosis. I tell them it's because I can hold both of those thoughts as true at the same time. It drives me absolutely wild that people put out false positivity as a way to supposedly help me -- I always feel they're projecting their own fears with that, not really trying to help me.

    This is my long way of saying that it strikes me that it's not an either/or proposition. You don't have to stay strong for your family or drop your guard and tell them how scared you are. You don't have to make your peace with the possibility of cancer progression or "be positive." Could it be a both/and proposition instead?

    With love,
    Tamlen

    Well! Put!

    My husband took such good care of me during and since my treatment, but he just would not let me discuss any "what ifs".

    I'm a professional worrier and I cope with that by planning and being prepared for all of the "what ifs" that pop into my head. It calms me and is a source of comfort to have a plan in place for contingencies. While I understood and respected my husband's fear, it made me more anxious to not be able to talk with him about some of the issues that would come up if treatment failed.

    It's rather isolating when well-intentioned people near and dear to you shut you down when you need to talk about end-of-life issues when that possibilty is staring you in the face. We all have these fearful thoughts and concerns when we get this diagnosis and go through treatment.

    I really like how you are thinking Tamlin...two truths. Our need to think about the possibility that we might die isn't us being negative; it's us being pro-active about coping with what is our reality.

  • Harmanygroves
    Harmanygroves Member Posts: 487 Member
    edited July 2021 #44
    Wow. The Depth.

    Come on in, the water's...deep! I'm very moved and so glad that no one here seems afraid to express not just joys, but these other thoughts.

    Deb, your support network here is amazing, and as was stated above, you are well within your rights to have hard days. 

    Look at how athletic and motivated you are. And you are so supportive of others here. I'm glad you can let down your guard and share that you're scared, because quite honestly, as Tam mentioned, we are all having to live with competing truths.

    I'm scared, and I'm afraid that this EC is going to take me out when I least expect it versus I don't want to be scared, bc if I am, could that become a self-fulfilling prophecy, and then I'll become weaker?

    I want to share with those who love me my deepest fears. I want to cry and be held but If I share my fears and break down, I will scare them and change the way we are "used to" interacting. 

    I want to research and find all the information, and know it all, as it could help me and potentially save me, versus I need to get my head out of this computer and have a ife.

    * * *

    For me, today, it was "I want to tell my sister how lame and unsupportive she's been, and that our parents didn't want her around when they died because she would have made an unsupportive scene, and not been there. She doesn't know how to say or do the right thing."

    What I said, "I look forward to seeing you when you visit in August. Perhaps you should rent your own car this time."

    (she's so used to be driven around and mollycoddled).

    Deb, and all of you, thanks for being so open and wonderful.

     

     

  • Lyn70
    Lyn70 Member Posts: 214 Member
    Late Night Prayers and Hugs for all my Sisters

    Deb, 

    Know you are heard and loved by your fellow sisters on this site. I will pray immunotherapy works. 

  • RainbowRita
    RainbowRita Member Posts: 72 Member
    edited July 2021 #46
    Amazing

    I am continuously amazed at the depth of compassion so many of you who post have for others who are afraid, overwhelmed or in pain. I know that it isn't just me who has found comfort in your words. The wisdom so many of your express so eloquently is also something I appreciate when I come here to see what thoughts you share. 

    Tamlen's comments about "holding two truths in our minds" is just so apt. Thanks for sharing that. :-)

    I hope Deb, that today is a better day for you. We all have our down days, and I think it helps a lot to just share with others who understand exactly what you are going through. No one likes to have their pain minimized by people who have absolutely no clue what you are going through. Although none of us wants to be a part of this "cancer club", I am glad to be a part of this particular one on this discussion board.