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Meg45

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Hi everyone... I'm newly registered, but I've been a frequent visitor these past few months since my mom's diagnosis of extensive SCLC, and I have to say reading everyone's posts has been both informative and supportive. It's nice knowing that while it feels like this is all completely uncharted territory, and my family's all alone in this, there are so many of you out there who understand every single minute of what we're going through.

I'm struggling with juggling family dynamics, trying not to hurt feelings, the uncertainty of all of this, and with what seems to be a daily struggle between hope and fear. My mom is truly the bravest, toughest, strongest, most wonderful person I have ever met and I wake up every morning crying and fall asleep every night crying, even five months after diagnosis - both for my family's pain in even picturing a life without her and for her pain in trying to imagine how we'll get through it without her there to guide us, and what she won't be able to be a part of anymore.

I guess what I'm asking for is for thoughts and prayers - even though I don't you any of you, and it seems that all of us touched by this disease need all the prayers we can get just to make it through the day.

My mom just participated in a clinical trial with the seneca valley virus, and since she now has symptoms of the flu, we're under the impression that she received the virus and not the placebo. I'm hoping you all can keep her in your thoughts so that this virus actually works and stops the cancer from growing and spreading more than it has - at least for a little while.

Thank you - for paving the way, for helping to educate me on so much, and for honestly giving me hope and a little bit of cheer by sharing your experiences with everyone in this community. Some of us (i.e. me) may be a bit shy, but your words - all of your words - are helping to get me through such a difficult time and helping me to keep a brave face on for my parents and brothers and sisters. Thank you all.

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  • 2 weeks later...

Hello Meg,

You have my prayers for your Mom, you and your family.

This was a well-remembered journey and though I haven't posted in months, this special place helped me with the most wonderful support. I am grateful to this day for all of that.

The people here are warm, wise, and will be as guardian angels as you walk this walk.

The one thing which I have highly valued during the five years Bill survived was hope. It cannot be overused. It's what made life bearable and gave us quality. It was mostly a glass half full.

My hope is that your Mom has much success in her treatments and that she and all of you around her are blessed each and every precious day.

Barbara

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Meg,

I'll chime in too - I remember when I first stumbled across this site - how I felt like you and your family - totally lost and no one understood. There are so many great people that pass through here from time to time you will be in everyone's prayers including mine.

Keep us posted on your mom and you - take care of yourself - sometimes that's hard to do. We'll be here ready to offer a virtual hug and shoulder when you need one.

Annette

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THanks everyone for the kind words, and thoughts and prayers.

Good news is that my mom received the actual drug in the clinical trial and not the placebo, as she came down with the flu immediately after receiving the infusion, so we're really excited about that. It felt so weird to be *happy* she was ill, but the oncologists are talking about the Seneca Valley Virus being some kind of wonder drug in comparison to chemotherapy, so we all felt a little lucky that she was chosen to receive it and not the placebo.

I've been trying to stay off the internet looking up statistics and time frames and spans and things like that, because they only make me go crazy. Here's to hoping, wishing and praying, because THAT is what gets us through.

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Meg, so glad your Mom is in this promising trial. I agree with ts that having Barbara appear must be good luck. I was told once that all prayers are equally attended to but I think Barbara's might carry a little extra weight.

You may be shy but you are beautifully articulate so don't be a stranger. Your words are coming through loud and clear here.

Judy in KW

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and Judy, thanks for the kind words - this stuff is hard to talk about, but it's a lot easier to write it down than try to explain it to people who aren't in it moment by moment with you. Thanks all, for being my sounding board so far. I'm sure I'll have more posts and more venting to be done down the road, but here's to hoping for a quiet, calm and steady fall/winter.

Thanks again all!

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Meg, thank you for this update. What good news that she got into the trial and got the actual drug and not the placebo. I'm praying that this helps immensely. Do know that even when you don't have an update, you can come and "talk" about anything that is on your mind. We're here for you!

Judy in MI

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