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Disconnected


jaminkw

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I was really tired when I went to bed last night but wound up getting up and wandering around the LCSC and CancerGrace sites. This morning I tried to talk to my husband about what was going thru my mind when I was trying to sleep and he just walked away. When he came back through the room, I told him I'd been trying to talk to him and he walked away. Of course he stopped and listened but before he did I said well, that's why I'm on the sites.

Truth be told, it's not him. In the large picture, he's been a gem through all of this. Even on the sites lately, I'm going through what I've come to think of as my disconnected phases. I keep reaching out, here and to people in my life and even when they do respond, I don't really feel like it gets through to me. Who wants to hear about cancer all the time? Even I don't but I wonder if there will be a time when I don't.

I'm embarrassed by what I feel when I come on site and there are so many people suffering in the throes of this disease. But anyway, here goes. One of the things I think about when I'm laying awake at night is how long a break will my oncologist be o.k. with in the Fall. I've decided the Aug 12 scan will be great but how long until the next scan, before or after the break? What if I take a break and the scans following it are good? Can I wait until "the disease progresses" then before I go back on chemo? What if it doesn't progress but the oncologist wants me to go back on Avastin maintenance. I'll be on Medicare February 2 but what if it doesn't pay for Avastin maintenance?

Bottom line: What are the odds I'll get some significant time of at least physical normalcy? There are no answers but if you are reading this, thanks for listening.

Judy in Key West

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Judy:

Your writings always stretch me to think more, to be more, and for that I will always thank you.

As to disconnects? If I have learned anything about this last journey of my life, it is that no matter how long or short it is, for the most part, no matter who is by my side, I will be taking it alone.

Some of my family and friends have been incredibly supportive and understanding; others have shown fear, denial, anger and even dementia. But in the end, it's my journey and mine alone.

During the past 17 months, I have tried to balance optimism with realism, buying time with quality of life, introspection with an outpouring of love; and on balance, I feel lucky, as though I'm living on bonus time (I hope it's a big bonus, of course, but que sera, sera).

After all, I've had a full and rewarding life, have loved and been loved, have experienced both parenthood and grandparenthood, have had several careers that I loved (careers that enriched the lives of not only myself, but others), as well as hobbies I've loved (including yacht racing/cruising, reading, writing, historical research, etc.), including travelling half the world.

And on top of everything else, this final journey has become the most incredible learning experience of my life.

When possible I've tried to convey my philosophies to those around me, in hopes that they will be comforted by them after I've gone, but in some cases, they just can't take it, and I've been forced to accept that as well (I can only hope that after I'm gone, my words will reverberate and be of comfort).

For most of my life I've been the one assuming the caregiver role, I've been the strong one. I would like to think that I'm still strong, but now I need to put myself first... if I want to succeed in dying with grace, dignity, and my sense of humor still intact.

And that requires a disconnect.

Carole

Life is a Terminal Condition

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YA'll got me teary eyed biut its ok really I get it ! Love, prayers, and hugs from a resident caregiver survivor!! RandyW

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I agree with all of you. Your words and feelings are the same as mine. Some days are better then others. But disconnecting is what we learn to do on this journey.

As for talking about cancer, I have to tell you even I get tired of talking about cancer. HOWEVER, in the early years of this journey I didn't. But back then I didn't have anyone to talk to about it like we do now. THANK GOD FOR THE INTERNET and for SUPPORT GROUPS!

Carole, my sister Bonnie who passed away from lung cancer 20 years ago at the age of 43 died with grace and dignity. She made dying a class act and very comfortable for those of us around her. Like you said, in some cases people just can't take it. But I can assure you, those people that couldn't take it when she was alive sure did get it after she passed on all her words and kind heartedness was really for our comfort. I hope she knows that. I try to do in my journey exactly what she did in hers. Soften the blow for others. She and I were always strong willed. I don't know that I am so strong today, but I try to be.

I look back at my families journey with lung cancer and I didn't get it either until I became a lung cancer survivor. Being a caregiver to my dad, mom and sister and then becoming a lung cancer patient/survivor is honestly applies and oranges. Either side isn't fun to be one. But I sure know NOW what my mom and dad and sister went through on there journeys and how hard they worked on giving us comfort during there last days.

I try not to alarm my loved ones and I try not to show them I might be fearful or scared. I can really put on a pretty good act when I need to. Can't we all? Get that smile and paste it on your face. I can't tell you how many people say to me, "With all you've been through you look so good" If they only knew how horrible at times INSIDE I felt. But, we do what ever it takes to get through and comfort others.

My hubby has been with me through hell and back again. Sadly enough for several reasons. My cancer journey, my son's suicide, my heart surgeries, family issues, loss of family members, and he just stands next to me through it all. Yet, he's the one that I lash out at the most. GOD LOVE HIM, cause I SURE DO! Yet at times I feel all alone and I know I'm not!

Judy, I have lots of those nights where I can't sleep and I come down and read the computer too. I find comfort sometimes in doing that and sometimes it's not so comforting. Just know you may not be alone when your up all night. :wink:

I think we HAVE to DISCONNECT ( turn it on, turn it off) just to get through a lot of the rough spots on this journey. If we didn't we'd be stuck in a hole with no way out. And having eachother REALLY gets us through the tough times.

As wonderful as my husband is, he has no clue what it's like to be a cancer patient, and God knows I don't every want him to find out. I know where I can go and who I can go and share my thoughts and fears with.

(((((((((((HUGS FOR ALL)))))))))))

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  • 2 weeks later...
I try not to alarm my loved ones and I try not to show them I might be fearful or scared. I can really put on a pretty good act when I need to. Can't we all? Get that smile and paste it on your face. I can't tell you how many people say to me, "With all you've been through you look so good" If they only knew how horrible at times INSIDE I felt. But, we do what ever it takes to get through and comfort others.

My hubby has been with me through hell and back again. Sadly enough for several reasons. My cancer journey, my son's suicide, my heart surgeries, family issues, loss of family members, and he just stands next to me through it all. Yet, he's the one that I lash out at the most. GOD LOVE HIM, cause I SURE DO! Yet at times I feel all alone and I know I'm not!

You can't get more open or honest than that. Thank you for opening your heart and sharing with us and letting those of us on the "other side" get a glimpse of what you go thru.

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Carole, my sister Bonnie who passed away from lung cancer 20 years ago at the age of 43 died with grace and dignity. She made dying a class act and very comfortable for those of us around her. Like you said, in some cases people just can't take it. But I can assure you, those people that couldn't take it when she was alive sure did get it after she passed on all her words and kind heartedness was really for our comfort.

Connie: A belated thank you for your kind words. Hearing from you that there's a good chance that my words and feelings will linger on and be of help to my loved ones after I'm gone means more to me than you will ever know.

Affectionately, Carole

Life is not measured by the number of breaths we take, but by the moments that take our breath away.--the late, great George Carlin

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