This Can't be good
Comments
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Woo Hoo!Harmanygroves said:Much to Celebrate!
Your news is great, T, and I'm also happy that things are looking up for so many on our forum--Spyder, with her amazing joi de vie (sigh, I shouldn't be 'doing' French, ha ha!); Deb 1 with recent good news; and me, as just yesterday Gyn Onc declared me "NED" for the time being, which I'm delighted about.
Celebrate good times, C'mon!
So great to hear those words and so happy for you! Definitely time to celebrate!
Big hugs between "Deb-utantes"!
Deb 1
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Celebrate Good Times NEDHarmanygroves said:Much to Celebrate!
Your news is great, T, and I'm also happy that things are looking up for so many on our forum--Spyder, with her amazing joi de vie (sigh, I shouldn't be 'doing' French, ha ha!); Deb 1 with recent good news; and me, as just yesterday Gyn Onc declared me "NED" for the time being, which I'm delighted about.
Celebrate good times, C'mon!
NED, It's Margarita time girlfriend, congrats
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Kind of Weird...Just an Observationcmb said:Congrats
It's so satisfying to hear "NED" after treatment, isn't it? Enjoy the sense of satisfaction that all the past months' efforts have been worth it.
I've fluctuated between overexertion, exhaustion, and tears all day. I get so wound up before appointments! I did have some huge successes today, including:
1. Genetic counselling appointment made
2. Uro oncology appointment made
3. appt in November made with PA, who will check me and then six weeks later, I'll meet my new gyn onc Dr. Monroe and I got that appointment made too!
Whee! I also found the opportunity to tell my scheduler my horror story about my first gyn onc, the inappropriate "curtain opener," if you remember that little tale!
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Thanks, Number !!Dak82 said:Woo Hoo!
So great to hear those words and so happy for you! Definitely time to celebrate!
Big hugs between "Deb-utantes"!
Deb 1
Big Ol' Number 2 appreciates you!
Ha...ha....hahahahh!
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I just ate a truckload of Thai Food!Spydergal said:Celebrate Good Times NED
NED, It's Margarita time girlfriend, congrats
and had a glass of wine on NED night. Margaritas next week, maybe! I have to trickle out the rewards, or I'll explode!
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Wonderful!Harmanygroves said:Much to Celebrate!
Your news is great, T, and I'm also happy that things are looking up for so many on our forum--Spyder, with her amazing joi de vie (sigh, I shouldn't be 'doing' French, ha ha!); Deb 1 with recent good news; and me, as just yesterday Gyn Onc declared me "NED" for the time being, which I'm delighted about.
Celebrate good times, C'mon!
I am so happy to hear of your NED status! Cheers to this fantastic news and to all the strength you had to get here! So very happy for you!
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Big "But"t519 said:Wonderful!
I am so happy to hear of your NED status! Cheers to this fantastic news and to all the strength you had to get here! So very happy for you!
Yep, BUT I'm extremely cynical and wary!
I also have something like six appointments scheduled over the next four months --urology, radiology, check up ology X 2, new gyn onc appointment to meet and greet since my second gyn onc is retiring, yada yada. I'm CAUTIOUSLY happy??
I'm not a pessimist; I'm a realist. I have to say that I'm finding myself happy again. As my gyn onc said, "it's going to take some time."
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Congrats on the NED, and big hugs.Harmanygroves said:Big "But"
Yep, BUT I'm extremely cynical and wary!
I also have something like six appointments scheduled over the next four months --urology, radiology, check up ology X 2, new gyn onc appointment to meet and greet since my second gyn onc is retiring, yada yada. I'm CAUTIOUSLY happy??
I'm not a pessimist; I'm a realist. I have to say that I'm finding myself happy again. As my gyn onc said, "it's going to take some time."
Such good news! And you deserve it.
xxoo
Denise
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Dark CloudHarmanygroves said:Big "But"
Yep, BUT I'm extremely cynical and wary!
I also have something like six appointments scheduled over the next four months --urology, radiology, check up ology X 2, new gyn onc appointment to meet and greet since my second gyn onc is retiring, yada yada. I'm CAUTIOUSLY happy??
I'm not a pessimist; I'm a realist. I have to say that I'm finding myself happy again. As my gyn onc said, "it's going to take some time."
It's normal for that dark cloud of "Will I have a recurrence?" to follow you wherever you go for a long time after you finish treatment. Having the misforturne to have been struck by cancer lightening, it is very, very difficult to accept or believe that treatment may have cured you. That cloud always seem to loom larger whenever appointments or tests draw near and hopefully recedes a bit for a while after you get each "it's all good". Another nickname for it here is "Scanxiety" and you are in no way alone in the experience.
Even at five years out, the cloud can still keep me awake at night because others have had recurrences this far down the road and then there is always the fear of lightening striking twice or even three times with a different cancer. The difference between us and the uninitiated is that we no longer believe that it will happen to someone else; we just know it has its sights on us.
How does one cope? We each have our own ways of trying to exert some kind of control over our fates, but I think the most helpful is to be as busy as we can going on and living each day to the best of our abilities. It distracts us from the cloud hanging over us and renders the beast unable to take any more time from us than we've already had to give it. That takes care of the daytime, but I haven't figured out how to fend it off when I can't sleep at night beyond meditation. That helps, but I sure wish it wasn't still needed. This is just part of how cancer has changed us, I guess.
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Found a PsychiatristKathy G. said:Spydergal,
Spydergal,
The advice about asking for an anti-anxiety med during this time is an excellent suggestion!
As Denise has mentioned you are allowed to feel scared, hysterical, angry & confused! The waiting is hell, and having time to think we play out worse case scenarios in our head!
In reference to you feeling like things should have been looked at more closely in 2019...maybe yes or maybe no. Looking back however is normal, but an energy waster. Try not to go there. Keep moving forward.
If you have read through alot of the stories on this board you learn there are many kinds of endometrial cancer and symptoms present differently depending on the type of cancer and the woman experiencing symptoms.
I had a abnormal PAP for the first time in my life two years before my diagnosis. I was told it was likely due to me entering menopause so no cause for concern.
The following year I had many UTIs with blood in my urine, but was told it was from the infections. Later that year I began spotting. That's when I got diagnosed with my slow growing, garden variety stage 1 cancer.
Looking back I think the abnormal PAP, and then blood in urine were indicators cancer had taken root, but there's no way of knowing. I am just grateful it gwas caught when it was!
Try to be grateful your appointment was moved up so you can get some answers, and the ball rolling. Make a list of questions you want to ask when the anxiety hits. Think about the anti-anxiety meds suggestion. And try to stay busy.
Hugs!
Kathy
I found a psychiatrist not far from me, she is very nice, easy to talk to. I told her about my panic attacks, lack of sleep. The bottom line is I've been doing what my mom used to call "painting the devil on the wall". the psychiatrist has called in a script for Zanax and she is starting me on a low dose 1/4mg. I'll see her again next month and she told me that if I need to see her sooner she will fit me in. I'm hoping MOFFITT will call this week to make the pre-op appointment and tell me the date of the DNC. Thanks to everyone for tolerating my panic posts and being so supportive, I don't think I could get through this without you all. Mahalo
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It is great to hear you foundHarmanygroves said:Thanks, Number !!
Big Ol' Number 2 appreciates you!
Ha...ha....hahahahh!
It is great to hear you found a better gyno-onc (iPad spell check kept changing gyno to gyros (lol), I guess siri is hungry) and won't be going back to that arrogant jerk. Sounds like you've got the ball rolling and hitting it outta the park.
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Thanks Spyd!Spydergal said:It is great to hear you found
It is great to hear you found a better gyno-onc (iPad spell check kept changing gyno to gyros (lol), I guess siri is hungry) and won't be going back to that arrogant jerk. Sounds like you've got the ball rolling and hitting it outta the park.
Yes, I have to be really careful to avoid thinking about my first gyn onc, because it puts me in a very bad mental space. Seriously!
Also, glad you got yourself a psychiatrist and are getting some medications. They are such a big help during all this hard stuff.
My new gyn onc, who is retiring (jeez louise, right?) is a really nice older man from the Netherlands, and he came back into my exam room to give me the professional advice that I should get back on my antidepressants (which I'd already asked my radiological oncologist to prescribe) as I seem so anxious, which is a manifestation of depression. My mom was always tightly wound too! I come by it all pretty honestly, lol!
Anyway, great to have good friends in the site here, and it made me smile to see you and CMB are now squarely in the wuss category when it comes to that biopsy!
There are some of us in here who basically said, "Uhuh, not even gonna try," so you both are probably more courageous wussies than some of us!
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thank you SO much, Blue!BluebirdOne said:Congrats on the NED, and big hugs.
Such good news! And you deserve it.
xxoo
Denise
You're a sweetheart!
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Yes to all of this, but.,...MAbound said:Dark Cloud
It's normal for that dark cloud of "Will I have a recurrence?" to follow you wherever you go for a long time after you finish treatment. Having the misforturne to have been struck by cancer lightening, it is very, very difficult to accept or believe that treatment may have cured you. That cloud always seem to loom larger whenever appointments or tests draw near and hopefully recedes a bit for a while after you get each "it's all good". Another nickname for it here is "Scanxiety" and you are in no way alone in the experience.
Even at five years out, the cloud can still keep me awake at night because others have had recurrences this far down the road and then there is always the fear of lightening striking twice or even three times with a different cancer. The difference between us and the uninitiated is that we no longer believe that it will happen to someone else; we just know it has its sights on us.
How does one cope? We each have our own ways of trying to exert some kind of control over our fates, but I think the most helpful is to be as busy as we can going on and living each day to the best of our abilities. It distracts us from the cloud hanging over us and renders the beast unable to take any more time from us than we've already had to give it. That takes care of the daytime, but I haven't figured out how to fend it off when I can't sleep at night beyond meditation. That helps, but I sure wish it wasn't still needed. This is just part of how cancer has changed us, I guess.
I'm training myself to celebrate the appointments and successes. I let the clouds roll in later. I make myself take a breath!
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That's good!Harmanygroves said:Yes to all of this, but.,...
I'm training myself to celebrate the appointments and successes. I let the clouds roll in later. I make myself take a breath!
It took me longer to start celebrating anything. I couldn't bring myself to celebrate my last chemo because I still had to recover from that last infusion, have a 2nd pelvic wash surgery, go through radiation and then recover from that. I tensed up before each 3 month check-up because I was sure I'd recur and the only thing holding it at bay was the Megace I was on.
The first time I celebrated was when I graduated to 6 month check-ups about 9 months after I was taken off of Megace. That milestone just felt so liberating to me! My neuropathy was abating a lot by then, too. The frequent doctor appointments and testing following treatment prior to that had gotten to be such a drag and reinforced that I was still a cancer patient. The cloud still follows me, but it isn't nearly as low or dark as it had been. Recovering from cancer is as big a deal as getting treated for it, in my estimation. It all takes a lot of time and a variety of means to get through it.
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You said it...MAbound said:That's good!
It took me longer to start celebrating anything. I couldn't bring myself to celebrate my last chemo because I still had to recover from that last infusion, have a 2nd pelvic wash surgery, go through radiation and then recover from that. I tensed up before each 3 month check-up because I was sure I'd recur and the only thing holding it at bay was the Megace I was on.
The first time I celebrated was when I graduated to 6 month check-ups about 9 months after I was taken off of Megace. That milestone just felt so liberating to me! My neuropathy was abating a lot by then, too. The frequent doctor appointments and testing following treatment prior to that had gotten to be such a drag and reinforced that I was still a cancer patient. The cloud still follows me, but it isn't nearly as low or dark as it had been. Recovering from cancer is as big a deal as getting treated for it, in my estimation. It all takes a lot of time and a variety of means to get through it.
There's not a lot of time to take a breathe when you're caught in the surf.
You're being battered and thrown around, and a quick breath and then back under. I understand.
For the first six months or so, I heavily and aggressively resented anyone that suggested that "Wow, you must feel SO much better now," and "Thank God they got 'it' all out!" and stupid, insensitive platitudes. I had people interrupt me with these platitudes. (why listen to the cancer patient bring me down when I can wax on).
Still though, I began making myself feel "satisfied smug happy?" with each appointment completed and survived. Like most women in here who have mentioned this, the appointment time is like stressful. A day checking for disease is like walking into the sea knowing there are sharks. I was going to talk about woods and bears, but decided to stick with the ocean theme there
Every time I complete an appointment or office visit--or big *()_ surgery or radiation treatment--I ask myself, "Did you get through it? was there any positive information? how do you feel?"
I also make serious efforts to not leave an appointment with any questions or doubts. If I need to address ONE more thing, I spit it right out there and do NOT stand up to leave until I'm ready to scoot out the door. No stone (shell!) is left unturned! Then I do "inner monologue" and tell myself I did a great job advocating for myself.
It's been a process to learn to do this.
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Your words meant so muchMAbound said:Dark Cloud
It's normal for that dark cloud of "Will I have a recurrence?" to follow you wherever you go for a long time after you finish treatment. Having the misforturne to have been struck by cancer lightening, it is very, very difficult to accept or believe that treatment may have cured you. That cloud always seem to loom larger whenever appointments or tests draw near and hopefully recedes a bit for a while after you get each "it's all good". Another nickname for it here is "Scanxiety" and you are in no way alone in the experience.
Even at five years out, the cloud can still keep me awake at night because others have had recurrences this far down the road and then there is always the fear of lightening striking twice or even three times with a different cancer. The difference between us and the uninitiated is that we no longer believe that it will happen to someone else; we just know it has its sights on us.
How does one cope? We each have our own ways of trying to exert some kind of control over our fates, but I think the most helpful is to be as busy as we can going on and living each day to the best of our abilities. It distracts us from the cloud hanging over us and renders the beast unable to take any more time from us than we've already had to give it. That takes care of the daytime, but I haven't figured out how to fend it off when I can't sleep at night beyond meditation. That helps, but I sure wish it wasn't still needed. This is just part of how cancer has changed us, I guess.
Your post could not have come at a better time. As each check-up nears, I become more and more anxious. The cloud looms larger and dark thoughts prevail. I am afraid to think nothing will be found as somehow that might jinx the results. Some real negative magical thinking going on. I guess it helps to hear that this is all "normal". l do feel like my life has changed forever. It is always there in the background. Most days I busy myself and am not preoccupied but other days are not so good. I keep waiting for the hammer to fall. Even though my exam and CA125 came out fine in the last two days, I have not been able to shake the cloud. My CA125 went up 3.3 points and that is what I focus on despite the gyn onc words that it is not a problem. Your words were a comfort and I want to thank you for that.
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CA-125Maxster said:Your words meant so much
Your post could not have come at a better time. As each check-up nears, I become more and more anxious. The cloud looms larger and dark thoughts prevail. I am afraid to think nothing will be found as somehow that might jinx the results. Some real negative magical thinking going on. I guess it helps to hear that this is all "normal". l do feel like my life has changed forever. It is always there in the background. Most days I busy myself and am not preoccupied but other days are not so good. I keep waiting for the hammer to fall. Even though my exam and CA125 came out fine in the last two days, I have not been able to shake the cloud. My CA125 went up 3.3 points and that is what I focus on despite the gyn onc words that it is not a problem. Your words were a comfort and I want to thank you for that.
Just remember that CA-125 is more than just an indicator of recurrence. Any kind of inflamation ... from a procedure, arthritis, colds, etc... can make the result fluctuate and cause a false alarm.
We all watch that number like a hawk and while it was a leap of faith to let my new gyn-onc stop checking mine, it's been one less thing for me to stress over when appointments come up. It probably would have been really elevated when my hip issues started. Before I had an MRI to check it out, my mind was remembering how Pinky and Der Maus both had recurrences in their Psoas muscle and I'll admit to being more than a bit worried that was happening to me. Having cancer tends to make us think every pain following treatment could be it coming back. We'll probably always be like that now.
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