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CYBER HUGS

shortmarge
Posts: 296
Joined: Nov 2008

Just felt I needed to send cyber hugs to all new comers and everyone on this discussion board. You are all wonderful, strong, amazing women and you are all in my prayers everyday.

GOD BLESS!

MIND, BODY AND SOUL.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Thanks, Marge! I learned yesterday that I will have my 'positioning' CT-scan and simulation for my internal radiation this morning after my external pelvic radiation treatment (#26 of the total 28 external rads today). I was told I would be 'fitted' for my vaginal cylinder. THAT doesn't sound too pleasant! I was already warned about the 'rectal marker' and catheter by my oncologist, so the 3-way-probe (YUK!) will be a reality for me in just a few hours. My husband is already as upset as I am about this; he feels so sorry for me. But this is the last leg of this journey and when internal rads are over July 1, this should all be over for me for a long long time, hopefully forever. I can do this. But a hug is surely welcome!

When it was just the 4 of us as UPSC Sisters (you, me, Deanna, & Peggy) and everyone was NED or in treatment with clear Ct-scans, it was easier to constantly believe in 'the cure' we are all fighting to achieve. The sufferings and recurrances of some of our new UPSC Sisters make us face the possibilities that there might be other challenges ahead for some of us. I'd rather have my eyes wide open. It's hard, but it's important that we KNOW, so that we live our lives as fully and joyfully as we can and not waste a single day. So I add my CYBER HUGS and WELCOME to all our new 'sisters' here; and give Marge and Deanna and Peggy an extra hard SQUEEZE because I know this new awareness is hard for all of us who had previously been isolated in our small circle.

Ro10's picture
Ro10
Posts: 1561
Joined: Jan 2009

Linda hope you made it through the morning okay today. When I was "fitted" for my vaginal cylinder it was more like a pelvic exam. They just needed to know the size they needed. Hopefully the other "probes" will only be when you actually get the treatments. Number 26 external radiation completed. That feels wonderful doesn't it. Only two more to go.
When I signed on to this site, I was number 10, thus the sign in Ro10. There certainly have been many many more since I signed on in January. Sorry to hear so many others are on the same journey. I continue to find this site a valuable resource and support, as others know the anxieties that I face. Everyone's encouragement is always appreciated. HUGS to all.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Thanks, Ro! I have to admit, the simulation this morning for the internal radiation (that I will have 6/17, 6/24, & 7/01) wasn't that bad! I was prepared for something much much worse. The 4 people in the room (my oncologist, his oncology nurse, & 2 CT-scan technicians I knew from my initial positioning CT-scan for the extrenal radiation) made me free okay about the embarrassing nature of the simulation. I was pleased that my oncologist was there to oversee the simulation and insert the cylinder himself.

I had to switch into a 3-armed hospital gown, with my shirt and shoes on, slacks and undies off. I was positioned on the CT-table so I'd go in head-first, but it was an open machine where my head and legs were out in the open. I had a pillow under my butt, a pillow under each knee that I was instructed to let flop outward like a frog (no stirrups), and 2 pillows under my head, so I was really pretty comfy. First of all, even though the oncologist had mentioned the rectal marker and catheter to me during our last chat, that didn't happen!! (woo! woo!) The technician said that when they 'line you up' using CT-scans, the catheter and rectal marker are not needed; and that they used to use them when they used X-rays to line you up. But before each of the 3 actual treatments, I will receive a positioning CT-scan of some kind. They didn't use any kind of IV-injected contrast for the scan, and I didn't have to fast or drink barium or anything before today's simulation CT-scan. I envisioned the vaginal tube as a metal cylinder, but instead it was some type of resin or graphite composite and they had it really slicked up with AstroGlide or something similar and it didn't hurt or stick going in or out. The scan made a fairly loud whirring noise and it felt like the tube was vibrating a little (not in a GOOD way! HA!) The whole thing, from the time I walked into the room until I could leave was probably around 15 minutes. And when I was leaving, the technician told me that today was the worst of it, that the actual treatments would be even easier. I am MUCH relieved! You all know how much I have dreaded and feared this, although my fear has always been more the long-term side effects than the treatments themselves. But I feel I'm in good hands. Whew!

bonniesue
Posts: 126
Joined: Apr 2009

I am happy it went well and you are almost done with it. blessings and hugs.

deanna14
Posts: 738
Joined: Oct 2008

I am happy that you had a tolerable experience with your internal rad simulation! I'm sorry if I caused you more anxiety by sharing my "not so pleasant" experience. I agree that the actual treatments are much easier than the simulation. I did not seem to have much by way of side effects with the internal radiation either. You are almost at the finish line! And I am glad that you had a "good" experience.

barb55's picture
barb55
Posts: 91
Joined: Jan 2009

Linda, I hesitated writing anything earlier about your brachy because I wasn't sure if you were getting the same treatment I had and I didn't want to give you any unreliable expectations. But, YEAH, your technician was right- the worst part is over and you are almost at the finish line.
My radiologist here in Rhode Island stopped after my first internal because he was afraid of damaging my intestines. We have mutual friends and I know he is an excellent doctor. At the time I agreed to stop- partly because he was adamant and I did know he was making the decision based on what he felt was best for me and partly because I was weak and tired and really wanting to stop. In retrospect, I would have gone back to my doctors in Boston and maybe pushed for more - maybe they would have been more aggressive. Maybe I would have been damaged. I'll really never know, but I do wonder. Of course, I'm doing well so I have to believe we did the right thing. Wish I had this blog then- at least I could have asked you all for feedback.Take care all. Barb

livenow09's picture
livenow09
Posts: 63
Joined: Apr 2009

thanks Marge
I can use all the hugs I can get; healthwise a person needs 12 a day to stay well; don't think we get enough; so start hugging as many people as you can; laugh out loud at least once; it kicks up the endorphins;
Aloha and heart felt best wishes to all of you...this is a hard path, but we will prevail one way or another;
agree with you Linda I'd rather have my eyes WIDE open; many don't want to hear about how treacherous this bug is...but I feel as if I have to wake people up sometimes to the reality, especially the people I love; my fear is more for them than for myself...

Marie

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Cyber hugs to all, Thanks Marge. Thanks Marie for the stats on hugs. Glad your radiation experience was not as bad as you thought, Linda.
Mary Ann

woofgang's picture
woofgang
Posts: 12
Joined: Apr 2009

Marge, thanks for all the cyber hugs. I have a CT scan tomorrow after having finished the 6 chemos. Radiation simulation is June 18. Linda, such great news that the brachy simulation wasn't as bad as you thought. My mind has been going wild over the radiation, and everyone's posts have helped alot. I'd rather know the worst and be thankful when it doesn't happen. Someone mentioned all the courageous women on this site - I'm inspired by all of you.

More cyber hugs,

Sharon

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