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Saying it out loud


jaminkw

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After several nights of interrupted sleep, it's time to say it out loud. It's my way of dealing with fear. I told Stan this morning, I'll tell anyone here who is reading, I'll tell my friends on FB and I'll tell my Cancer Group members tonight. Hope that will help.

I'm worried about my cancer and that it may have spread to my abdomen. Those who have taken Alimta know that constipation is the primary side-effect and it can be extreme. I've been dealing with it for more than a year now but it keeps changing so I have to keep changing my routine for dealing with it. Consequently, I have a lot of intestinal distress from too many laxatives or not enough. It is almost always associated with gas but can show itself in many areas from chest, abdomen and on down. It is difficult to impossible to ignore my abdominal distress now. My mind always goes to those "thickenings" the radiologist said looks similar to signs of cancer spread to the abdomen. I'm really scared and when I look at the calendar, I can't believe it's still a little more than a month to that 9-wk scan. There I've said it.

Thanks for listening.

Judy in KW

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Hi Judy,

Its 3.04pm just now,I am at work just now and on my tea-break,I have a meeting at 4pm,I was just passing by for a moment to check the mail,and saw your posting,wish I could be with you for a moment just to give you a wee hug,Ill just have to send you a cyber one,I was a bit worried about earlier mail concerning your doctors comments,not that I understood the technicalities of your feedback,The empathy I have with you is almost like whats happening to you is kinda like happening to me,if you can understand what I mean.I am really sorry you have this doubt and fear hanging over you,I know we all live with this daily to a certain extent,and we all fear the peaks and troughs of our emotions,it takes something out the ordinary however trivial,to bring the doubts back.

You know everyone here wants the best for you,and if there was anything we can do to ease your feelings we would do it.Wish I could help you more,I will mail you again when I get home.

God Bless,

Eric xxxx

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I know your cancer group members have experienced this uncertainty and fear to some degree and I hope they will be able to offer you come encouragement and comfort when you see them tonight.

I don't know if there is anything you can do until those scans in 9 weeks or not? Can you call your medical team and let them know how you feel...that the uncertainty is overwhelming and ask if there is something in the interim they can do to give you some physical as well as emotional relief?

I wish there were more I could say or that I was closer to help in some way.

Please know that I am holding you in my prayers and thinking about you everyday.

((hug))

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Gosh, Judy, I wish I could find something magic to say that would help you turn off that worry switch. It would be nice if the next scan could be moved up, but 9 weeks/2 months is probably about the minimum for being able to detect any changes, and as I read your post it was already moved up from the original 3 months. The only thing I might suggest is having another radiologist look at your most recent scan. Some of these guys go overboard with the CYA, as we've discussed before. In the meantime, try to concentrate on the positive trend your last few scans have shown and try to release all this other stuff. Not easy, but if you can do it, it will do you a world of good. Aloha,

Ned

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(((Judy))),

This is my second attempt to post here... hope I don't lose this one. First of all, I'm so sorry that you are so uncomfortable and so worried. Judy, please try to put the worst case scenario out of your mind until it is confirmed. If I understand your last scan report correctly, you said the doctor saw something that could possibly be cancer, but nothing lit up in that area. Not lighting up is a good thing and I'm here to tell you that Mike and my mom , both have had scares from what the radiologist thought could be cancer. Anytime something shows that is where it wasn't before, it becomes a suspicion. My mom had two scares last year for things suspected of cancer.. had them followed up with biopsies only to find things benign..

Mike had 6 treatments of Alimta and constipation was severe for him. He had to learn what worked for him and stay on top of it the best he could , but even then, at times, it seemed not enough. As you have indicated, it was a continuous upset between constipation and diarrhea .I saw him lose sleep and be in pain a many a time. As for his scans on his intestines.. they always showed diverticulitis..

I'm just praying that it's something other than cancer and I hope you can possibly get tested sooner , rather than later, so you can get you answers and the treatment you need for whatever is causing you so much discomfort.

Hang in there dear,friend. Let us know where you decide to go from here. I would be pushing the docs to help you find answers now. Let us be here to support you.

Love & Prayers,

Sue

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never made it to alimta but Please Know Your in my thoughts and Prayers and a BIG HUG for extra strength!

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Well, say it loud. I'm glad Stan is listening and hearing you as well. I tend to transfer some of my fear onto M when it gets to be too much. He bounces back well when the news is good. Delightfully, really.

Last month, my little bout with the intestinal toxin and the diarrhea and fevers - man, I really thought I was cooked. All I could think was "I've got lung cancer, I need a break from whatever other crude is out there". It's resolved, my scan was good, and yet there are other little things nipping at my mind. So, yes, I can imagine where you are - especially with a film that needs to be followed.

Here's to those good days watching bunnies and dolphins. And let yourself wallow in the fear if you need to - knowing you, it will get old and you will move along. My 2 cents. (Lucy charged a nickel.)

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(((Judy))) ~ oh I hear you loud and clear, friend. I haven't found the 'off' switch for the worry machine, so I can't help you there. It's easy for folks to tell you to just relax and wait and see. Yea, right!!!! Watch THEM do it, I say!

A very wise member who used to post here (and is now off enjoying life) used to say this ~ don't put the cart before the horse. In other words, don't borrow trouble. Easier said than done though.

I've had several 'concerns' these past 2 years. I worried my a$$ off ( wish I meant that literally) all for nothing. So, Judy, just let us here do all the worry for you and hold your hand. Take several deep breaths and maybe even have a glass of wine. Another good friend of mine here would offer this advice ~ I'll hold your pork chop.

Please know we are all here help you through this tenuous time. Just try your best to hold onto hope that there are many other things that could be going on other than cancer.

Kasey

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Hi Judy,

I've been away a few days. Lots going on in this household. Glad to see that you are willing to talk about it and get the fears out in the light of day. When they hide in the dark, they get quite large and scary. When you put them out in the light, I believe they lose their power and become less frightening.

As a cancer survivor, we always have that tinge of fear lurking when we feel something new, something we didn't feel before. I have been there, and 9 times out of 10 it's turned out to be nothing like what I built it up to be in my head.

I read this today: The bravest person is not always the one standing in silence. The bravest is the person who admits fear, after they have stepped.

Another one I wanted to share with great care: "Your living is determined not so much by what life brings to you as by the attitude you bring to life; not so much by what happens to you as by the way your mind looks at what happens. Circumstances and situations do color life, but you have been given the mind to choose what the color shall be."

I'm praying that this is a nuisance that will be cleared up very soon.

Judy in MI

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Now listen to you all! How can I stay in the dumps with such loving and caring friends. Ned's right--they are making me wait just the amount of time required for any change to show. I will get thru this next four weeks and two days. I am better already with the support of my husband and family, my family here at LCSC, all my friends on FB and in my group, and last but not least the retired oncologist that attends our Cancer Group. You would have enjoyed hearing him scold me like a child explaining why I don't have active chronic cancer again. Of course I know he doesn't really know either but he convinces me every time lol.

Thank you all so very much.

Judy in KW

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Hi Judy.

I don't come by too often anymore so I only just saw your original post on this thread. While I realize nothing I can say will assuage your fears, two things come to mind.

First, two weeks after I'd been diagnosed (and less than 4 wks after I'd been discharged from the hospital), I couldn't keep any food down and was beyond constipation -- nada from the lower end. (Please excuse the gross details.) After three days I went to the emergency room and was immediately admitted and everyone -- the oncologist, my ever-present and ever-cool-headed cardiologist, and the surgeon who'd biopsied my salivary gland -- was SURE it was a met to the intestine. Well, they finally operated and, guess what, it was an obstruction all right but it was from an adhesion from my back surgery 8 yrs earlier and NOT malignant. They cut out a foot of destroyed intestine and I was good as new. When we have/had cancer. everyone thinks (patients and doctors both, in my case) every problem is a met -- but the body can still have the full range of things f***ing up, after all!

Second, the digestive tract doesn't like to be fooled around with. The constipation from Alimta isn't simply a label -- it's a result of God knows what Alimta is doing to the tract. Plus laxatives can and typically do wreak havoc on the digestive tract. So you've got plenty of reasons for your digestive tract to be disgruntled, without reference to life-threatening issues.

One other gross point: if you're expelling gas, that's good. A full obstruction (malignant or not) lets NOTHING out. Sorry to be so disgusting...

Hang in there and good luck.

Ellen in PA

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Ellen, this is downright creepy. I swear to you I was thinking about you last night. I even considered pming Katie and asking if she had heard from you.

So glad I psyched you in lol. I am back to thinking positive. Don't deny that little worry wort is lingering in the background somewhere--or is it under the bed. Who used to talk about the fear under the bed?? Was it Stephanie, or Becky????

Reminders from people who know my friend Alimta do help. I did started tweaking the anti-constipation campaign before the infamous scan. I had a feeling it was wreaking havoc on my intestines. And Ellen, nothing is too gross to talk about here when we are trying to deal with cancer.

Hope you are doing well and can't tell you how good is was to hear from you. Thanks for the post.

Judy in KW

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Wasn't me! We just keep large dust bunnies under the bed. And the occasional kitty.

Great to hear from Ellen in PA, as always. Judy in KW - well, take your time off with the family and have a good time. What a funny community we have, scattered all over this great big country (and world.) A good night to all.

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Judy, honey, I am not sure how I missed such an important post from you and I am so sorry I am responding so late.

As to the under the bed comment - I think it was Becky and there was a baseball bat involved! We all know too well about the worry monster that lives inside. There is not much I can say that the others haven't so eloquently put, other than I am sending you many cyber hugs, positive thoughts and prayer that the troubles you are experiencing have a simple answer (NOT cancer). I don't know about you, but sometimes just voicing the fear takes away a little bit of it's power. Hope the same is true for you.

Take care Judy - keeping positive thoughts for you.

Hugs,

Linda

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Oops, I missed it, too. I don't think I could have said anything as well as others here did, anyway. Here's hoping your visiting with family will help get you to a better place.

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