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Reply by linda*
22 Aug 2016, 7:22 PM

hello lulu.
how are you feeling about the roller-coaster ride these days? 
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Reply by Lulu975
27 Aug 2016, 9:05 PM

Well the ride continues but not a fierce as before.  I still have days where the emotions come out of nowhere and I have a meltdown.  Other days I do a better job of pretending that my life is 'normal' and that things are OK. I just never know what I will get and never know what will set me off. Living with uncertainly is the norm now.
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Reply by jessicasarah
08 Sep 2016, 4:10 PM

Hi LuLu. I wanted to say my feelings about living with this metastatic diagnosis echo yours. i feel like i can't make goals or plans for the future.  I am lonely a lot and don't feel that anyone really understands what this is like. I feel like I am living in a grey land, one between life and death, where I can't fully commit to one. I wish I knew how to enjoy life better and what it is that prevents me from trying.  
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Reply by Lulu975
18 Sep 2016, 10:57 PM

Hi Jessicasarah, I agree that I can't make plans or goals.  I got a notice in the mail about an appointment in 6-12 months and then wondered if I would even be here still.  People say just live in the moment but I can't, I have always planned and had a plan and now I am at the mercy of a bunch of cells that do what they want when then want and who knows how long I can stop them.  I often feel like I am an alien in this world now, I am not dead but not really alive in many ways either.  I moved a few  months ago and have had a difficult time with unpacking.  I kept thinking why bother to do it when it will be easier for my family to pack up things when I die and I can make it easier for them to just live out of boxes. A lot of things I think I could do but then say why bother it takes energy and I am going to die. Everyone gives advice but unless they walk in your shoes how can they possible undertstand what it's like to face your mortality each second,minute and hour of each day.

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Reply by KathCull_admin
16 Nov 2016, 6:48 PM

Hello 
It's been a couple of months since we spoke on this thread and I was just wondering how everyone is.

Lulu975 are you any more settled in your 'new' home? Thinking about your mother too - your plate as you said is full. 

linda* thinking of you and veils in your life.

Jessicasarah I hope there have been things in your life that have given you joy this week.

Take care all of you.
Katherine 
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Reply by Lulu975
27 Nov 2016, 10:55 PM

I am still settling in. Had bad news that there is some progression so starting on a new treatment.  Mom and sister doing really well in nursing home and am relieved that it's  not my job anymore to take care of them.  Trying to live well with the uncertainty is very hard and emotions still like rollercoasters that come and go.  
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Reply by Nickk2017
21 Mar 2017, 8:45 AM

hi Don’t be afraid to talk with your friend. It is better to say, “I don’t know what to say” than to stop calling or visiting out of fear

Here are some options to help show your care and support:

 

I'm sorry this has happened to you.

If you ever feel like talking, I’m here to listen.

What are you thinking of doing, and how can I help?

I care about you.

I’m thinking about you. 

 

Thanks
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Reply by KathCull_admin
23 Apr 2017, 3:50 PM

Hi Nickk2017
Welcome to the community. It sounds like you have some experinece in receiving this care and support and/or supporting others. Your suggestions are valuable.

Katherine 
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