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It Just Keeps Going

DragonLadyHere's picture
DragonLadyHere
Posts: 29
Joined: Feb 2019

I had an aggressive form of Uterine cancer. I had a total hysterectomy, six rounds of chemo (Paxlitaxel and Carboplatin), and three rounds of brachytherapy, and I'm a little more than a year out from those things. It was the hardest thing I have ever endured---and I've been through some serious stuff, but I know my ordeal was relatively easy compared to other peoples. I have to say though, it's been a bumpy recovery. My bowels have not been the same (they made mention of possible damage from radiation) and I've just not felt great since, I was hospitalized back in December for a week and a half. I have some good days of course, but there have definitely been some issues. I'm facing a number of things in the next few weeks, my anxiety about a return of cancer is growing. There's been a spot on my left breast they've been investigating for a year now and now I am to have a breast biopsy in about three weeks, they say nothing looks "suspicious" and they "want to be sure", but they keep calling to make sure I have it scheduled---and I do. I have nodules on my very large thyroid and they want to biopsy that. I am also to have a colonoscopy on the 29th of this month and I'm not thrilled about it. (It doesn't help that it's scheduled the day after my birthday) Now there's a new pain in my right side and it's getting worse, so my mind went right to cancer. I spoke to my Oncologist about it and I'll be moving my appointment up, because of course, now she's concerned. 

My family does their best to support me, but they have their own fears about my health. People who have been through it understand that fear of cancer returning though, so that's why I came here to this forum This anxiety has been more than I bargained for. I confess, I am having quite a hard time. It feels like my body just keeps going wrong. I am tired of worrying about it. How do you deal with that kind of anxiety? The frustration?

I guess the upside is there was nothing 'suspicious' a few months ago, and yet. .. new pain brings new anxiety. I sure would appreciate encourgement, offers of hope, cheers, "huzzahs" or whatever you've got. Someone once told me "once you've had cancer, you're part of the family." I am hoping that's the case here. I tried the Chat Room here, but, they seem pretty established with each other there, kind of hard to keep up with.

Wannabeatit
Posts: 97
Joined: Dec 2017

I totally understand what you are going through. All I can say is that I think we all feel the same at some time or other and it is something that is very normal. I wish we could just get over these feelings but it’s almost like we are in a high state of awarenes. We don’t allow ourselves to let our guard down. Maybe that is a good thing in a way but it does put our nerves on edge. What I have experienced is that it does pass and we can have periods of time where things just go back to normal and oh that feels so good.

DragonLadyHere's picture
DragonLadyHere
Posts: 29
Joined: Feb 2019

Yes, those 'normal times' definitely feel so good. Just felt like I haven't had enough of them lately I guess.

zsazsa1
Posts: 358
Joined: Oct 2018

Yes, everyone of us understands that constant fear of recurrence.  I went to see a psychologist to talk about my anxiety about recurrence - but it doesn't really help.  After all, it's a very rational fear!  Hopefully all your tests will come out okay, and you'll be temporarily reassured.

One thing that has helped me somewhat is thinking about all the little abdominal/pelvic pains I've had that have been there for a few days or even weeks, and then gone away.  That makes me hope that new ones will, too, since the ones in the past haven't been recurrences.

DragonLadyHere's picture
DragonLadyHere
Posts: 29
Joined: Feb 2019

Yeah, I have a psychiatrist too, and he's been great, but. .. still, he can only do so much. After talking to him, I tend to feel less crazy, lol. I am hoping these pains resolve, but they've been going for awhile. It's better some days, and not others. At least they know about them and are investigating. There's that. I am glad so many people understand so much here, but sad about the reason: Cancer.

EZLiving66's picture
EZLiving66
Posts: 1363
Joined: Oct 2015

Welcome to our board and yes, we totally understand what you're going through. Every little ache and pain causes us to fear the cancer is back. I too have an aggressive form of uterine cancer - UPSC, Stage II. I only made it through three chemos and my oncologist said he'd save radiation if it came back. I fully expect it will at some point but try to live each day in the moment. Please let us know how things are going!

Love,

Eldri

DragonLadyHere's picture
DragonLadyHere
Posts: 29
Joined: Feb 2019

Thank you. I will! Yes, chemo is very rough. I found the radiation rather awkward, lol.

Wannabeatit
Posts: 97
Joined: Dec 2017

Another thing I try to convince myself of is “It isn’t until it is”

DragonLadyHere's picture
DragonLadyHere
Posts: 29
Joined: Feb 2019

Yes, sometimes I can swing that, but some days. .. not so much. When I posted my comments here, that was one of those times where I couldn't.

 

Armywife's picture
Armywife
Posts: 327
Joined: Feb 2018

Isn't it funny?  Some days all I can think about is cancer, and how soon it's coming back.  Other days the whole thing feels like it was a bad dream and didn't even really happen.  My husband is convinced I am healed.  I want so much for that to be true because I want to be here for my elderly parents and to see my almost 30-year-old daughter married someday and to be a grandma.   But with Stage IVB endometroid, LVSI, positive pelvic wash, it's really hard to believe that I'm not just on borrowed time.  Makes me scared to have to go through treatment again.  Makes me wish I wouldn't waste so much time day to day, just scrolling through social media, but be more intentional about LIVING.  I wish I had answers for you.  I, too, have pain in my right side, but my most recent CT in October showed no evidence of disease.  Lately I've been feeling crampy down low in my pelvis, but my most recent physical exam last week showed no evidence of disease there.  My gyn/onc says that scar tissue can often feel a little funny.  Hoping you will be able to relax a bit, but we sure understand that's harder than it sounds.

DragonLadyHere's picture
DragonLadyHere
Posts: 29
Joined: Feb 2019

You described it EXACTLY, Armywife! EXACTLY. I'm sure your pain must be just as unsettling to you as mine is. I guess technically, we're all on borrowed time, just feels like the cancer experience brings one a little closer to that edge than most. I was an Army wife too, and my hubby fervently wants me to be okay too.

DragonLadyHere's picture
DragonLadyHere
Posts: 29
Joined: Feb 2019

Thank you all so much! YES, you've all helped me to feel a little better just by knowing how I feel. That just does wonders for me. I very much appreciate your responses here. Laughing I'll try to figure out how to reply on this forum to you all, but I'm relatively new to these discussions boards, I've only posted a couple things I think.

janaes
Posts: 783
Joined: May 2016

Yep as all the others have said. You are normal. I hope you have a very happy birthday. I know its hard. I started chemo the day after my birthday. I didnt want it on my birthday. So the day before i went out to dinner with family. It was better than on my birthday but it was still hard. I tried. Yea family tried to get that, but they dont. Mine esspecially didnt get it after treatment. They wanted to move on and wanted me to also. I couldnt so i came here and they understood. It does get easier the further you get out but it is something that is a part of me. 

I just had my first colonoscopy a few weeks ago. It scared me too but it turned out not to be as bad as i thought. Just remember to take things a day at a time and if you have a bad day or moment know tthat its normal.

Best of luck as you go forward.

DragonLadyHere's picture
DragonLadyHere
Posts: 29
Joined: Feb 2019

Thank you, Janaes. Yeah, some days are hard. I guess that's how I found myself here. Like your family, mine want me to be okay, but it's been a bumpy road. Sometimes, I don't feel okay. I started chemo on Halloween day, lol. I have my colonoscopy in a week. I haven't had one in awhile. I just want to get it done with I guess. Very undignifying procedure, lol.

janaes
Posts: 783
Joined: May 2016

Thats a very goos word to discribe a colonoscapy (undignifying).

BluebirdOne's picture
BluebirdOne
Posts: 209
Joined: Jul 2018

a colonoscopy.  By the time they insert the thingamajig,  you are asleep. With Brachy at the teaching hospital I had any number people looking at my hoohaw with the other thingamajig tube sticking in it and observing much of the process except the actual radiation. Talk about undignified! I just kept telling myself "they aren't looking at my bald head and face and I would probably never see them again." Of course, they were all very respectful, but Jeez Louise, talk about embarrassing 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1564
Joined: Jun 2015

Denise, you made me laugh this morning! And, I couldn't agree with you more!!!! Great description.  

The entire team where I got my Brachy done were men.... uhm.... Embarassed

Love and Hugs,

Cindi

BluebirdOne's picture
BluebirdOne
Posts: 209
Joined: Jul 2018

Levels, two female med students who seemed more embarrassed than me and looked like 5th graders, one female radiation doc, two female technicians who were wonderful and I think I imagined a large gorilla who walked by as well, but maybe was real. I just kept thinking they wouldn't recognize both my face and nether regions until I remembered I had two more sessions!

DragonLadyHere's picture
DragonLadyHere
Posts: 29
Joined: Feb 2019

Yes, the Brachytherapy was indeed undignifying! It was rather embarrassing, then they leave you all allone in a dark room to stew about it, lol. Doing the prep today and tomorrow for the colonoscopy on Monday. At this rate, my innards will squeak, and yes, I much prefer to be OUT for it. :D Of course, I am very much hoping all comes back that I'm well with no sign of cancer. 

janaes
Posts: 783
Joined: May 2016

Good luck with your colonoscopy monday. I hope i all comes nack clear for you too. I will be thinking of you

janaes
Posts: 783
Joined: May 2016

Sorry that is supposed to say back not nack

DragonLadyHere's picture
DragonLadyHere
Posts: 29
Joined: Feb 2019

Thankyou janaes! I sure hope so too. I appreciate your good thoughts! <3

BluebirdOne's picture
BluebirdOne
Posts: 209
Joined: Jul 2018

Dragon Lady, 

I think most if not all of us have felt exactly how you feel. Not normal but nothing about the entire cancer experience is normal. From biopsy to surgery to staging to chemo to radiation to survivorship. The first three months after dx, I was a blubbering, fragile, depressed mess, with incontinence, diarrhea, constipation, and neuropathy. Add in the crushing bone pain, nausea, occasional vomiting, and baldness, I was in a constant state of terror I was never going to feel better again. The physical distress passed only to have the emotional duress explode as I had to tell family and friends my dx. Now as I approach my first 6 month scan I have back pain, from right to left. Everyday I find myself weepy or totally breaking down, with a few good days. My poor husband has to live with this crazed person. I know this is anxiety due to the scan coming up, but I cannot control my overwhelming sense of doom. So this is not normal but it is now normal for me. The knowledge I have gained from the women on this site has been invaluable, and I know how lucky I am to have found them. This helps me to cope and when I think back to how distressed I was when first diagnosed, I know that I am coping much better but there are a lot of peaks and very low points. My biggest coping mechanism is to remember that other than to get treatment and live a healthy lifestyle, there isn't much I can do about preventing recurrence. We are here for you. 

Xoxo

Denise

DragonLadyHere's picture
DragonLadyHere
Posts: 29
Joined: Feb 2019

Thank you, Denise. Yeah, NOTHING is normal anymore for any of us I guess. Every little pain. .. you just wonder. Some days, I can convince myself quite well that 'it' is back and I won't make it through it this time. When I told my hubby that my uterine biopsy came back as cancer, I could see the news hit him physically. I will never, ever forget that as long as I live. He felt so bad for me when I had the bone pain, he just held my hand and cried with me. People often talk about how sad it is that cancer takes so many---and oh my gosh, it is, but it all leaves those who survive with absolute wreakage some days. Not everyone gets that or is willing to talk about it it seems, except here. I am so thankful for your responses here.

SF73
Posts: 277
Joined: Oct 2017

You guys are definitely not alone in feeling this way. I am amazed at my body's ability to make up problems near surveillance visits. 10 days to every visit with my oncologist, I convince myself that I am recurring. It is like clockwork. My poor husband has to experience all these lows with me. 

BluebirdOne's picture
BluebirdOne
Posts: 209
Joined: Jul 2018

It is hard on everyone. 

Forherself's picture
Forherself
Posts: 241
Joined: Jan 2019

I was just wondering after reading your posts.   And I wanted to mention that there is a good article on Post Traumatic Stress Disorder. on the Mayo Clinic website.   https://www.mayoclinic.org/diseases-conditions/post-traumatic-stress-disorder/symptoms-causes/syc-20355967 

At the end it mentions that life threatening illness can cause it.  it is good to just be aware that yes, you have a good reason to feel upset.  And feel your feelings.  I realized I had some symptoms of PTSD after my surgery.   I could not sleep in the same bed that I recovered in.  I just relived all those emotions as soon as I went to bed.  It helped to move to a different room for awhile.   I think it's a good article to read. 

BluebirdOne's picture
BluebirdOne
Posts: 209
Joined: Jul 2018

I recognized a few of the symptoms mostly the extreme anxiety, depression and inability to control my negative thoughts. Sleep has been a problem. On days I am coping better, I realize I am in total denial. Hardest for me is putting on the happy face, the "I am going to beat this face" for others, when I am screaming inside my head. Then I feel really guilty, stupid and over reacting because I am 1a. The emotional aspect is much harder for me than the physical which still surprises me, but it shouldn't. 

xoxo

Denise

DragonLadyHere's picture
DragonLadyHere
Posts: 29
Joined: Feb 2019

That's an interesting article, I'd not heard of it before. Thanks for sharing it ForHerself.

SF73
Posts: 277
Joined: Oct 2017

I also think that I have PTSD. In the words of our elequent president "Cancer was my Vietnam" :) And sadly, no opportunity to leave the war zone either. 

Forherself's picture
Forherself
Posts: 241
Joined: Jan 2019

is staggering.   It helps to recognize that its normal.   I have a hard time talking to people about it, so appreciate being able to come here and talk with women who really know what it is like.   People's reactions are interesting.  You need to be able to put some distance between yourself and THEIR emotions.  

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