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Tichondria's picture
Tichondria
Posts: 39
Joined: Mar 2016

A little about myself I guess is in order. Currently 36 (just had birthday on the 10th). For years I delt with abnormal periods, between ages of 20-28 I had no period. All the while I've been diagnosed as 1. Morbidly obese (was loosing weight though, YAY me. Went from 340 to 263 but that is on hold for now) 2. PCOS 3. Pre-diabetic. I have ovarian, uterine, and cervical cancer on mothers side of things. Colon cancer on fathers side. So I guess in a way I feel like every single thing that could "enchance" my ability to get cancer was there. The obesity was my own fault, but everything else... I just chalk that up to unlucky genetics.

I tend to be a pretty laid back kind of girl. Probably my reasoning for not going in sooner. Would you believe I refused to have paps done or anything else since I was 16? I think I had 1 pap done when I was around 25.. but can't remember if I did or not. I guess to be blunt, I didn't want to see another doctor, just to have them tell me everything was fine and it was all in my head. Been told this so many times, it felt like listening to a broken record. I guess when you have a hard youth growing up, and classified as Bi-polar/PTSD, they just assume it's your depression making you feel sick and bad.

However, I finally couldn't stand the constant pain and went to see a gynocologist in December of 2015. At the time, he didn't automatically refuse to listen to me. I told him I was just comming to him because I wanted a hysterectomy. I was tired of the non stop bleeding/clotting or the on/off again bleeding that was requiring me to wear depends because I never knew when it was going to happen. However, he then did something none of the rest of them did, he ordered for a ultrasound of the abdominal area and a trans vaginal ultrasound. I didn't get to see him again until Feb 22nd. (Again, I was procrastinating but finally told myself, enough was enough).

On that day he said due to what the results showed from the ultrasounds and with my lining being thicker as well as my family history and past history of issues, he wanted to do a biopsy that day. I agreed (and let me tell you.. I was not one of those women who only felt minor discomfort.. that was the most painful thing I've had other than when my appendix burst when I was 18). But then was told, not to worry he was only looking for reasons for such weird bleeding and was ruling things out.

I of course didn't worry so much until on the 25th of feb. I recieved an "urgent" email (no home phone at the time, I prefer to use my computer to make phone calls) and so I set up an appointment with him for March 3rd. Not even going to state how nervous I was between those few days. On one hand, I had recieved 3 letters in the mail that all stated I needed to be seen imediately and or I needed to call to get the results. However, I would call and they were telling me  Icould not be told over the phone as the doctor did not OK it, and I had to talk to him. That did nothing for my anxiety but thanks to my husband it was at least livable LOL.

He came in, and without smiling, he said.. "I have good news for you and I have bad news for you" I asked him what the good news was. He told me that the pap smear came back clear and no sign of HPV. I sighed in relief because I knew HPV has strains that can cause cancer. However, then he looked me in the eye, got up.. put a hand on my shoulder and said, "but I'm sorry to have to tell you this, but as of now you have grade 1 endometrial cancer."

I think he was surprised I didn't cry, in fact, my eyes didn't even tear up. It's funny you know.. the whole time waiting to hear the news I thought the worst and was worried, but the moment he actually confirmed my fears. It was like this weird calm came over me. And I remember in complete detail everything he told me that day, including how he looked, the way he moved.. the smell of the room.. the look on my husbands face. It's crystal clear, ask me to tell you what I ate yesterday and I couldn't tell you. I'm sorry that this is so long.. but the only person I've really had even seem remotely concerned for me has been my husband and old friend from england and my husband's mother/father. I'm not sure what I was looking for, but it's like, once I let my family and closest friends know, they have all just kind of dissapeared. I don't know if it's because they are worried, or just don't care. But in all actuality, it really doesn't bother me.

I think that is what worries me a little. That those things don't really bother me. Ah well.. perhaps it's just the way I handle this. However, I am scheduled for my radical hystorectomy on the 16th, with my gyno/oncol. Starting tomorrow I get to start the whole, drink 2 8oz glasses of Golytely for the 14th starting at noon, and again on the 15th starting at noon, with nothing but liquids. And none of the liquids can have red or purple colors. I thought that odd but i'm good with that. I have stalked up on boulion, broth, apple juice, and lots of other juices that have no bits of fruit in them and don't have red or purple.

I am a little nervous about the surgery as she is doing it laproscopically and removing everything vaginally. Only nervous due to the fact that many websites have stated that usually those with uterine cancer have abdominal procedures to reduce chances of contamination? But then I read forums and many ladies had theirs done same way. So not quite sure what to think about that. I know grade 1 is the lowest grade and i'm forever greatfull to hear that. I'm just concerened about the staging at this point.

I also had to have a CT w/conrast done of my abdominal area because my gyno/oncol was worried about my off/on of constipation/diarrhea and the severe edema in my legs/feet I have suffered with that has gotten worse over the past year or two. But I had that done a few days ago and I've heard nothing about those so I'm just assuming they probably found nothing. Or.. she will go over them with me on the 16th when I go in for surgery.  Anyway, before I ramble on even more.. (boy this felt good to just say all of this and get it off my chest) I will say thank you to all the women here now and before me, that have given such wonderful information to look at and read. It has helped me in more ways than I can think.

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

sorry we had to me this way, but I am glad you found his place.  You will meet many strong and knowledgable women here who will welcome you into our hearts and lives.  It is sad that you had to suffer so long, but I am so glad you found a dr who was willing to listen.  This is the place to ask questions and vent or just write if you need to.  You will get many different options to think about.  Each person had their own unique set of experiences.  It has been over 3 1/2 years since I had my radical hysterictomy and started down this bath.  It had at times been bumpy, butI am still here. I have many moe good days than bad.  You will find out that you are an incredibly strong person.  It sounds like you have a wonderful man by you side.  Hugs and prayers, Lou Ann

It happened to Me's picture
It happened to Me
Posts: 206
Joined: Apr 2014

Thanks for sharing your story with us.  You are safe with us.  Many people are scared of the "c" word and don't know how to act or react when they find out you have it.  I decided early on that I was talking about it and I would set the tone.  My idea was that if I laughed and joked about being "spayed", it would break the ice and I was positive that I would be fine on the tail end of this journey.  We have alot of stories and encouraging words for you, so don't hesitate to ask the questions.   I'll share a reader's digest version of my journey.  spotting or bleeding from Feb. to May of 2013.  I was 51 and thought I was peri-menopausal or menopausal.  Went to ob/gyn, they did pap and found two different types of cells.  two weeks later, had colposcopy (took biopsy of endometrial lining) and found cancer.  That was June, 2013, they told me I would have hysterectomy and maybe radiation but no big deal they thought.  Went to meet gyn/onc and was told it was a rare cancer (really rare for my age) and it was aggressive.  Was told surgery and possibly chemo. and/or radiation based on what they found.  Radical hyst. July, 2013, found out it already spread and was staged at 3c grade 3. 4 weeks and a couple days (body had to heal), I started chemo. on Aug. 1, 2013.  I ended on Jan. 2, 2014 and have been NED ever sense (No Evidence of Disease).    My family and friends were incredible and I think alot of it has to do with how I reacted to it.    I hope that they step up and support you. 

I'm glad you got it off your chest.  There are so many things this board will provide for you.  Don't look too far in advance and don't look at statistics on internet.    There is a great bunch of women on this board who will be happy to help carry the load of this journey.

Jeanette

EZLiving66's picture
EZLiving66
Posts: 1358
Joined: Oct 2015

You've come to the right place and you're safe here.  I'm Eldri, 63, and had a total hysterectomy where my gyno/oncologist did it using the DiVinci robot and removed everything through the vagina.  The surgery went really well and I literally danced out of the hospital the next morning.  Originally I was told I had grade 1, regular old endometrial cancer based on the first biopsy.  Unfortunately, after my hysterectomy, it was determined it was Stage II, Grade 3, UPSC.  My doctor thought he had gotten all the cancer and a CT scan after confirmed they could not find any other tumors.  However, just in case any stray cancer cells had been released when he cut into my uterus, he recommended six rounds of chemo.  I made it through three before I started having some major complications.  Other ladies on this board, breezed through their chemo and even were able to work while having it.

Everyone has different reactions but at least by reading our posts you see the possibilities.  Keep posting and let us know how things are going.  The women on here are the BEST!!

Love,

Eldri

Gardena
Posts: 102
Joined: Jan 2016

There are a lot of great people here who are happy to listen or share, so please reach out anytime you are in need. I think the beginning of the cancer journey can be some of the hardest days, dealing with all the unknowns. You will find yourself doing things you never thought possible. Looked at that way, cancer can be empowering. When I first found out I had cancer I kept it private and have continued to tell only a handful of close friends and family. Thats just how I am, others share their dx freely. There is no right or wrong way. Regardless of how much or little a person shares with others there will always be the possibility of rejection due to others comfort level hearing the news. Whether it makes them question their own mortality or have a fear of being depended on, or whatever goes thru their head, the result is they step out of our lives. And for that I am grateful. One of my dearest friends said terribly insensitive things to me when she learned of my dx, and was glib and shallow towards me when for the last 12 years we've been thick as thieves and traveled together with our families. She backed away and I am glad she has, as I need and want positive, life affirming people around me. Do I miss her? No, because now I have more room for people I love who care about me. 

I'm happy you have a loving and supportive husband and in laws. I have found my relationship with my husband has been strengthened by my cancer dx. I would not wish this disease on anyone, but when you find yourself on this journey only take along those wanting to come.

As far as your surgery goes, if your doc is using the DiVinci robotic machine it is pretty standard to bag the uterus prior to bringing it thru the vaginal track. Ask your doc to ensure.

Please keep us posted as you proceed, best wishes for a smooth surgery~

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1557
Joined: Jun 2015

First of all, congrats on losing the weight! That is a major accomplishment.

Sorry for your DX and glad you found us. Like others have said, the early part of learning you have cancer is the hardest. You will find a lot of support and information on this site. So, please stay with us and let us know how you are doing. Also, a thread 'Ladies going through Chemo' is loaded with information on several experiences that happened last year. If you have time to read it, I think it will help you.

For me, the surgery was the easiest part. I had the robotic hysterectomy and it took just over 6 hours. Recovery wasn't too bad. Only took pain pills for the first couple of days.  It is important for you to WALK afterwards. Make yourself do it so that you don't have any clotting issues.

Come back with any questions. Nothing is off limits.

Love and Hugs,

Cindi

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

I won't repeat what the others have said but heartily agree with them.  I hope your surgery goes well and that everything is early stage, low grade.  No matter what, you've just added a whole bunch of caring people to your corner.

Tichondria's picture
Tichondria
Posts: 39
Joined: Mar 2016

It felt so good to just talk this all out and hear some wonderful replies back.  Today is day one of the bowel prep. I'm already hungry but making sure I don't stray from the instructions. I however have a massive headache atm, I hate that. I feel so bad for my husband, this morning I had to take an "emergency" shower, and then call him in because A. I was dizzy and B. I had a HUGE clot that came out and needed him to get the garbage. I admit, I freaked out a little. I've never had these before. Oh sure, little ones every now and again, but this one filled my entire hand. And you know... this has only gotten like this since about 3 days before my appointment with my gyno/oncol. I'm not really sure what to make of it.

Sure I bled heavy for like 3 hours after my biopsy but then everything settled down and was doing just the normal on/off bleeding. Then wham! flood gates opened and then these clots. I'm not sure if my body just knows whats going to happen and now is trying to rid itself of the "thick" lining that was discovered back in December or what. Or if it just knows it's time is about up and so is making me suffer as much as it can before surgery removes this uterus for good. I'm kinda thinking the second. I swear it has a mind of its own and really trying to make me suffer now *laughs*.

I sound a little crazy saying that, but it's honestly how I feel. I also admit, being on a water retention pill, and now for next two days having to drink 2 cups of Golytely to induce diarrhea, I'm a little worried about having any energy. This bleeding has already drained me so much, but now that I have to purpously give myself diarrhea, I worry about being able to do much more than just get up from my couch, do what I need then imediately lay back down. Oh well, I suppose this is just what I have to do to get better huh. I can't wait until the 16th is here and gone and I'm on the road to recovery. I want to see if my body will finally start giving me my energy back, and my life back.

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

You have just gained a bunch of people in your corner, so I'm glad that you reached out to us.  I remember that pre-surgery liquid diet just not being much fun at all!  If you're tired, just take it easy as much as you can before Wednesday.  For me, the surgery was not bad at all, and this coming from someone who had never had any type of surgery before.  Here's hoping things go well for you on Wednesday and a speedy recovery.

Chris

DrienneB's picture
DrienneB
Posts: 186
Joined: Aug 2013

If you are subject to migraines and have migraine medications (imitrex/sumatriptan), it can hep with the headache from the bowel prep dehydration. I had to do my bowel prep in a motel room close to the hospital where I had my hyserectomy plus for endometrial cancer. (I had to be at the hospital at 6am) I was so glad I had thought to pack those pills. I was so miserable with cramps and exhaustion the night I was doing the prep, and that  bad headache pre-surgery was not what I needed. I had a colonoscopy first, then the laparscopic surgery a few hours later. What a day.

Hoping the best for you in the next couple of days, and a speedy recovery.

-jane

Tichondria's picture
Tichondria
Posts: 39
Joined: Mar 2016

Just finished drinking my first 8oz of Golytely and oh my lord it is the nastiest stuff I've ever tasted. My pharmacist said to sip it. Nope... I had to chug or I would never get through it. However I will wait an hour before my next 8oz, because I've heard if you chug all of it, you get terrible gas pains. Thank goodness for apple juice to chase this taste away. I am so glad I don't have to drink liters of this stuff. Just 2 8oz of it for 2 days, and then good to go. I hate the not eating though. Also i'm concerned about the no liquids on day before surgery to, only because I have such hard to find veins, and no liquid means they will have an even harder time finding my veins.

Oh well, I guess I'll just have to hope I don't become a new pin cushion. I still remember the horror of my gallbladder surgery, 6 attempts on each arm before they asked someone else to come and try. But this wasn't at the same hospital so I'll probably have much better luck hahaha.

EZLiving66's picture
EZLiving66
Posts: 1358
Joined: Oct 2015

I never had to do any of that before my surgery.  All they told me was nothing to eat after midnight and nothing to drink after 6:00 a.m. - my surgery wasn't until the afternoon.

I have the same vein problem but after a few tries they brought in this older nurse who told me she had 31 years experience finding veins.  She did it all by feeling my arm and I never felt a thing.  When I had to have my port installed they called her in again and ta!da!, she found it right away!!  I hope the same things happens for you!!

Love,

Eldri

Tichondria's picture
Tichondria
Posts: 39
Joined: Mar 2016

Can't believe how grouchy I am with not being able to eat. I mean.. granted I never ate much to begin with, but I at least would have a salad or some soup. Not being able to eat has given me a horrendous headache, and I can only take acetaminophen. Because apparently Ibuprofen is not allowed, however this tylanol is not working for crud. So atm, I'm hangry (hungry and angry lol) I have a headache the size of Texas, and tomorrow when my mother in law arrives, she was planning to take us out for dinner.

So now I will have to tell her to just take the hubby out, because I guarentee there will be nothing at a restaraunt I can eat. *sigh* This is just the absolute worst part. Because I know I will hardly want to eat after surgery. Bleh!!! really hope they also prescribe anti nausea meds because any of those harder pain meds always makes me sick to my stomach. Here is hoping  this next day goes by very, very quick so I can get to the surgery day hahaha.

BabyCoach's picture
BabyCoach
Posts: 95
Joined: Mar 2016

Many of us have had you in our thoughts these last few tough days.  Let us hear back how you are doing.

Tichondria's picture
Tichondria
Posts: 39
Joined: Mar 2016

I ended up staying an extra night though because my bladder didn't want to "wake up". And neither I, nor my husband wanted to straight cathe myself. They wanted to release me the following day and just straight cath myself. But I looked at them and said.. I can't bend over and do this, when you guys have us lay down to do it.. how does that work? Also my hubby was like.. I will just end up hurting her. So you can put in a more perm. cath and we will just have a doctor there remove it in a day or so or you can keep her one more night.

 

So they kept me one more night, but definitely not without a grumble and saying not sure "if your insurance will approve this" Which either it will or it will not. But your a non profit hospital so the whole "Trying to scare me into leaving" is not going to work. I would rather deal with some of your rude and quite honestly annoying nurses for one more night then try and straight cathe myself and possibly do something very wrong and then I have  more issues to deal with other than just healing up while I wait for my staging.

Trying to get ahold of my doctor was the hardest thing to do. Not sure if they just didn't feel that I was important or what anymore, but I definitely feel that now my surgery is done, that the "nice and helpfull" phase has ended. Instead I'm left with the "Why are you bothering me again for" phase and "Your results from the staging will come in a week or so" so don't bug me phase. Just not quite sure what to think of them. Some of the nurses were so nice, and others I would rather of had them go take care of someone else. Lucky for me, I got roomed in the orthopedic station so I got roomed with a very nice woman who agreed with me whole heartedly on how the nurses were.

And how the doctors were, although I will say hers was way more friendly and responsive. I just tried to sleep most of the second day that she was already gone for, so I didn't "bother" those nurses. I knew how much of a bother I was when the first night I had a cathe. in, my bag almost exploded because it was soo full from no one "absolutely no one" opening it and draining it. And the 2nd nurse who got me after almost 20 hours couldn't believe it. She was like.. the cna never checked. I told her "what cna?" They never came not even once to check my blood pressure, which had been all over the place, from 130/54 to 96/53. Seriously 96/53 and they were not even concerned? bleh. I should stop now Or it will just irritate me some more and I don't need that.

I'm home, I'm safe, and my hubby is doing awesome. I'm up and down on my own, i'm using the bathroom on my own. The only thing I can't do is dress and cook. So I'm happy. I would be happier if this pain would go away. LOL it's weird, out of all the incisions, only 1 of 5 hurts and that is the one on the left side and was swollen and red when I left but looked "ok and fine" to the doctor. But since bathing gently and with warm water has become less swollen and less red. Love my hubby!!

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

i am so happy that your surgery went well, but sad and angry that you were treated that way.  For me it was a little bit the opposite.  My bowels did not want to wake up and I was beginning to think that they planned to keep me forever.  Now it is time fo you to rest and heal.  Take it nice and easy for awhile.  Hugs and prayers, Lou Ann

EZLiving66's picture
EZLiving66
Posts: 1358
Joined: Oct 2015

Welcome to the world of modern medicine!!  I was sent home after my gallbladder surgery with pneumonia and a collapsed lung.  That night I was so sick my husband took me back to their emergency room.  The doctor there couldn't believe I had been released a few hours before.  Fast foward two weeks and I was STILL in the hospital!  I don't have a lot of faith in nurses and doctors.  I think we have to be our own advocate and I applaud you for holding your ground and staying an extra day.

Hopefully your surgeon got all the cancer and may or may not do any followup therapy "just in case."  That's what happened to me.  My husband was an angel too!

Love,

Eldri

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1557
Joined: Jun 2015

So glad that part is behind you. And also happy to hear your husband is doing a great job caring for you.

Sorry you had such horrible care at the hospital though.  I was fortunate to have caring people after my surgery. No one should have to deal with bad nurses!

Take care of yourself. Rest and don't lift anything! You are going to have up and down days for a while.

Love and Hugs,

Cindi

Tichondria's picture
Tichondria
Posts: 39
Joined: Mar 2016

Love how amazing my husband is, and my in-laws. If it was not for them, I don't think it would of been as easy to get through.  I still have to wait on the staging of my cancer, but for now. I'm just going to consider myself NED. Until I get something  that tells me otherwise, I will think of myself as NED and not worry. If it turns out I still need treatment then I will take that one step at a time. It does no good to worry myself silly. It will just decrease my healing time, and I'm all about returning to be as normal as possible.

My mother in law is thinking of getting a new car and they were possibly thinking of giving us their other car. My hubby proudly told them, that while he would not look a gift car in the mouth, it was all up to them and no matter what they decided to do with it, he would be happy for them. I can't even begin to describe how amazing the hubby has been. Even with my little ups/downs. And I swear my temper is worse than ever. One moment I'm fine, and the next I feel like a little bit of raving lunatic.

I have decided to quit taking some of my other meds that my normal doctor prescribes for me, because atm... I don't believe it is in my best health to continue them. And that medicine is the phentermine one. I don't think in my current condition it's a good idea to be taking it. My food input has been relatively low since a few days before surgery. I've only eaten 1-2 times a day because the rest of the time I feel full and kind of nauseous. I've mostly been eating light food like scrambled eggs, and drinking apple juice. It just tastes the best atm. Thank you everyone for your replies, I don't feel so alone when you ladies talk with me. I've been a member on a  few msg boards but this is the one that I always come back to, because you ladies talk to me. And I just feel more relaxed. So thank you!!!

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

I agree with you taking it one step at a time and just taking care of healing from the surgery and not worrying about what the future might or might not bring.  Sorry about your nurses, though.  I've found a wide range in the caring of the nurses I've been exposed to.  Some are just "doing their job" while others truly see it as a calling.  I still remember the one night nurse that thanked me for the privilege caring for me!

Wonderful that you have such a strong support system.  That makes a huge difference.  Continue to eat and drink what tastes good to you.  Your appetite for other things will probably come back faster than you think.

Chris

 

Tichondria's picture
Tichondria
Posts: 39
Joined: Mar 2016

I would like nothing more than to add all you wonderful people as friends, but I'm not sure how to do that? I would like to be able to follow you all and see how you all are doing as well.

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

There may be an easier way to do this, but I haven't found it yet.  You can search for members by their user name at the top right of the page.  When they pop up, there is an "Add Friend" option.  Click on that and it will send a friend request.

In addition, if a user has created info on their "About Me" page, it will show up if you click on their name.  It's a great way to share info about our own particular journey.  

Chris

ncg007
Posts: 132
Joined: Nov 2015

Tichondria...happy that you are doing good.  It sounds like you have right attitude in approaching all this mind over matter.  Wishing you a speedy recovery and good results.

Nancy

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

before stopping your phentermine.  I looked it up and it SHOULD NOT BE STOPPED ABRUPTLY.  It needs to be tapered off.  Also check about any other meds you are taking before stopping them.  Your pharmacist is another good resource.

i've taught people to self  cath and it is awkward, especially for women.  You need to watch ( with a mirror) and then give a return demonstration when its time to do it again.  Depending on your anatomy (we all differ a bit) it can be downright challenging.  Also if your technique isn't good, you can give yourself a UTI.  Usually it's used for someone who needs to do this long term.  Anyway, it would have taken a lot more effort than an extra night in the hospital was worth. 

When you get your form to evaluate your care, I would mention the catheter bag not being emptied.  the exploding bag would have been the least of your problems.  Serious consequences could happen if no one noticed if it wasn't draining properly.

 

 

Tichondria's picture
Tichondria
Posts: 39
Joined: Mar 2016

Actually I had already stopped it about a week before my surgery and I just have not started up again. Only because  my blood pressure was doing great in the hospital without it, and I know taking it, my BP has been like 190/102 and higher. But for stopping slowly I did  that, tapered myself off a week before surgery because they told me i couldn't have it. Then just never restarted. I hope I do get a form to evaluate my care, there are 2 nurses and 1 cna that I will give glowing recommendations for. The other ones, not so much. I understand cna's can get busy/bogged down when they get 15+ patients however the nurses only had 5... So I don't think they have an excuse. And then I watched a cna mark off that she seen me on the board when she didn't do anything the first night. So I'm going to comment about that.

 

It's my opinion, if you want to be a cna, you need to do your work or at least touch base with your patients. Not completely ignore  them and then make a mark saying you did vitals when you didn't. That is just bad news and more times then not gets people in trouble. I used to be a cna, I never once said I did something when I didn't so when something didn't get done, I owened up to it. But I also didn't wait till end of shift to advise I had not done anything either, I let my nurses know if I was getting behind. But then again, I worked in a nursing home where CNAs get 35+ patients sometimes 15 patients and I would of thought I was on the easy path.

EZLiving66's picture
EZLiving66
Posts: 1358
Joined: Oct 2015

I agree with you - consider yourself NED unless told otherwise.  Even if chemo and/or radiation is recommended, if it's only to prevent a possible recurrence, you're still NED.  I also agree to be careful going off any medication.  Our 41 year old daughter stopped taking one of her meds - not by choice; she had run out and couldn't get into her doctor for two weeks.  She had terrible withdrawl symptoms but thought she had the flu and ended up in the emergency room.

I'm glad to hear you have so much support.  I don't know what I would have done without my husband.  Over our 47 years together, I've pretty much taken care of most things but he stepped right in even changing the bed (althought he put one of the pillow cases and the bottom fitted sheet on inside out - LOL).

Let us know how you're doing.  We're her for you!

Love,

Eldri

Tichondria's picture
Tichondria
Posts: 39
Joined: Mar 2016

Been nauseous all day today. Got up this morning and thought I was going to loose my apple juice but after one dry heave it just stopped and settled down. Then I got up a little bit ago and I'm sitting here at the computer desk instead of using laptop and my nausea level is at an all time high today :( It is just not settling down very well. I might have to call my normal gyno and see if he will prescribe me some anti nausea meds. Because I am just having a really hard time today. Perhaps I'm over doing  it but I didn't feel like I was. I'm not eating any really heavy foods. I had 1 small salad (when my nasuea first acted up) then 2 chili dogs (yeah I know.. worse thing to eat but when I burp it's not them I'm tasting.. I still taste that dumb salad.. sorry for the not so pretty details.) But I'm hoping I didn't get sick from eating that salad. I know spinich and stuff can go bad, but it wasn't slimy and didn't look bad, but ever since eating it.. I've just felt horrible :(

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1557
Joined: Jun 2015

Definitely call the doc and get some medicine. The anti-nausea pills they gave me for chemo worked well.

Also, you might want to try the brat diet (bannanas, rice, applesauce, toast) for a few days and see if that helps.

I hope you feel better soon!

Love and Hugs,

Cindi

Tichondria's picture
Tichondria
Posts: 39
Joined: Mar 2016

So I already had a day penned in for my normal physician. Not that I really depend on him much lol. He actually tried to tell me that PCOS can go away just by having a kid... ya ok.. don't quit your normal day job there buddy. But he is at least good for taking blood pressure and allowing me to get pills that I need. I determined not to take any of my oxy's until tonight. I know they can make you nasueas and constipated. So I'm just trying to do ibuprofen today unless I really, really need a stronger pain pill.

 

They gave me 60 and i'm down to 24 since the 18th. So I know I've been depending on em too much. Pretty sad that these things only work for 3 hours then you have to take more. I guess that how narcotics hook someone. Well so far, i'm doing good on no narcotics since 1am this morning. Been over 12 hours free. Now if I could just get my legs to quit hurting. They feel sore and stiff.. so I walked around a little more than normal. It's the weirdest thing though. Only half my legs have hair, the other half.. nothing... not sure what to make of that.

EZLiving66's picture
EZLiving66
Posts: 1358
Joined: Oct 2015

I got sick one night after eating red grapes and I wondered the same thing - had those grapes gone bad??  It's probably going to be a long time before I eat grapes again!!!  The anti-nausea meds didn't work for me but other people swear by them so it's worth a try.

Hope you feel better today!!

Love,

Eldri

Soup52's picture
Soup52
Posts: 902
Joined: Jan 2016

Welcome! I don't know how I missed your posts except I'm out of town right now. I hope you will encounter better nurses in the future. The ones at my cancer center are fabulous. You will get plenty of support on this board. It is the best. I've tried other boards, but it doesn't seem like people participate on a regular basis. Looking forward to hearing about your progress.

Tichondria's picture
Tichondria
Posts: 39
Joined: Mar 2016

Can't fill them yet though, will have to wait till first of month.  Oh the joys of being on disability and having to wait till the beginning of the month.  However, I'm slowly loosing more and more faith in my doctor. Even though he just found out about my cancer and having to do tvh/bso he was telling me that eating applesauce and bananas was too much sugar and wanted me to eat more protein. Said get those protein drinks at safeway 10 for 10. I almost wanted to look at him and go, "have you seen the amount of sugar in those things?" lol. I'm scared more protein will make this constipation worse.

And then he was like.. just take a laxative... yet everything i read said some can make pain worse because it irritates the lining of the intestine and can cause lots of pain. I don't need anymore lol.. I barely went # 2 today and that was with a lot of rocking back and forth so I was not straining since that can dmg the insides. Should I make an apt with my normal Gyno.. or should I make a call my my Gyno/onco and ask her what kinds of foods I should eat.. I thought bland/soft would help make my stool softer/easier to pass but maybe i'm wrong. What do you Ladies think, or what did you do to help with constipation without having to rely on pills and what not?

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

My doctor recomended Myralax and I also take DocQlax or the generic.  That was recomended by my surgeon/Gyn-Onc.  Both doctors say I can take both.  I am on pain meds that cause constipation and they want to me pre-emptive.  They are stool softners and are mild.  Many doctors recomend the Myralax before chemo treatments 

i have always heard that eating a diet with a lot of whole grain and fresh fruit and veggies help, but have haven't had much luck with them.  Sometimes a nice thick milk shake helps.

hugs and prayers , Lou Ann

Tichondria's picture
Tichondria
Posts: 39
Joined: Mar 2016

Just wanted to give you a big thank you. I will have the hubby get some Myralax for me.  And hugs and prayers back at ya. I hope your scan comes back with some great news.. and for the rest of you wonderful women, thank you soooo very much!!! having you ladies here and having someone to talk too off an on really makes my day feel so much better/easier to deal with.

 

 

Edit:

 

On a side note.. i have something that happened I was gonna ask you all about.  Been having very weird issues with my head lately. Not sure if the medicine i'm taking for pain is messing with me or what. But I am not quite sure how to explain my issues. It's like.. a part of my brain is on hyper-drive and going so fast I can't keep up (it will just push out words like go, stop, now.. very easy usually 1 syllable words, while the other half of my brain is going at the same time but it's going incredibly slow.. like it will think totally different words. I was laying down and when this woke me out of a dead sleep I had to look at my hand, I knew it was a hand.. but I couldn't think of the word at that moment. I couldn't speak, all I could do was grunt, I could still move around a little but it was very hard.

This sounds so ridiculous even just typing it up but I have no real way to describe what happened. It was just the oddest sensation, and it took almost an hour before I was back to normal. I could then get up, use the bathroom, talk. It was like I was in my body but had no "real" control over it. And I was worried about telling a doctor because they always assume things with me. I guess I just wanted to tell someone, somewhere that doesn't brand me as the mental ill girl. That is why this forum is so wonderful. The people here don't automatically assume, and you can be scared and or confused and they help you as best they can or just to say, he it's ok.. it will get better. So thank you everyone, thank you for being so kind to me and helping to keep me from being too spastic lol.

EZLiving66's picture
EZLiving66
Posts: 1358
Joined: Oct 2015

I have had some strange episodes too with my brain.  One day on my way home from work - I've worked at that some location for 18 years - I got lost!  I had no idea where I was - nothing looked familiar.  Luckily my husband was in the passenger seat (I knew who he was) and told me where to go.  It's about a 20 minute drive home and everything looked unfamiliar until we got to our driveway.  I recognized our house.  It really scared me and I called my doctor about it.  She said it could be Transient Global Amnesia which could have been triggered by a number of things including the pain meds or PTSD.  I also had night terrors and repetitive dreams which she thought were at first caused my pain meds but when I quit taking them and still had the dreams, she thought it was because of my liver problems.

I'm lucky that my GP takes these things seriously unlike my oncologist's office who looks at me like I have two heads when I told them about some of my side effects.

As far as the constipation, I took the Miralax the day of my first chemo as suggested.  OMG, I thought I was going to die because I had diarhhea so bad.  I have IBS and with chronic diarhhea, the Miralax just aggravated it.  I learned I was one of the few people who didn't get constipated from chemo and opiate pain meds - just the opposite.  

We've all be through hell and back with a lot of strange side effects.  Don't worry - you're safe here!!

Love,

Eldri

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

my daughter who has chronic stomach issues suggested a product called Gin-Gin. It is ginger chews and comes in several flavors.  It works pretty well for nausia.  There is also something Calle Sea-Bands. They are bands you wear on your wrist and hit on a specific pressure point. They are made for pregnancy, chemo patients and for sea sickness. Easy to use and no chemicals.

hugs and prayers, Lou Ann

pinky104
Posts: 574
Joined: Feb 2013

I had constipation after surgery, but it was because of the narcotic pain meds.  Once I got off of them, I was fine.  I had been on Percocet.  Protein is supposed to be recommended during chemo, so if you go for chemo, be sure to eat extra protein. Also, be sure to keep hydrated.  That should help the constipation, too.  Foods with garlic often help me, as do the apples.  Your symptoms in your earlier post reminded me of gallbladder problems. If you don't get better, you might want to get checked out for that.  I had mine out with my cancer surgery because gallstones were found on my CT scan.

I know someone with constipation who regularly takes the MiraLax, but also has to take Konsyl for fiber along with it every third day.  One local gastroenterologist said that's the only good kind to take.  Konsyl is sold at Walmarts (look for the white and cranberry colored plastic container) and online. I've had trouble finding it in some of the other grocery stores and drug stores in my area. You might be able to find it in other stores, depending upon where you live.    

I'm wondering about the origin of your name.  Does it have anything to do with the town in the Adirondacks called Ticonderoga? 

 

 

Tichondria's picture
Tichondria
Posts: 39
Joined: Mar 2016

Actually.. tichondria was an old character I made when I was a teenager for a D&D game. And it just kind of stuck since then, my real name is Miranda. It's just when I try to sign up for things, that is almost always taken and tichondria is rarely taken :)

Tichondria's picture
Tichondria
Posts: 39
Joined: Mar 2016

I would of thought gallbladder to. Sadly about 4 years ago though, I had to have mine removed due to gallstones. So while the symptoms are very much the same, I can't blame it on that haha. Wish I could though, this overly full, bloated feeling reminds me exactly of how i felt before they took out my gallbladder. They thought it was due to my stones, because I was always bloated, felt over full all the time, even when I just ate a a little bit of food. And then now when I had my tvh/bso surgery, I find that over full and bloated all the time is another symptom of uterine cancer. I'm wondering when it is that I really started to get effected by the cancer, and was my symptoms before due to gallbladder or did I have the cancer then. But if I did.. then I know it is a very slow growing cancer and if so then that almost makes me feel positive that I will hopefully be considered NED once the staging process is done. I just wish they would hurry

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

I did not use Miralax after surgery (did during chemo, though) but I did use Colace twice a day.  That helped a lot for me and seemed fairly mild.  No straining, no rocking.  And yes, lots of water will help, too. And once you get off the pain meds, things will resolve themselves. Fruits, vegetables, whole grains will help move things along, too.

Oh, God, those protein drinks are ridiculously sweet.  I have found an organic one, Orgain, that isn't too bad and has quite a bit of protein in it, 16 g.  I drank a lot of it when I was recovering from surgery.  I also recently came across something that's loaded with protein:  collagen peptides.  If you get the unflavored powder, it dissolves completely in water or any hot or cold liquid and it is absolutely tasteless.   18g protein per 2 scoops.  This was the "protein powder" recommended by my naturopath.

I used ginger for the few times I dealt with queasiness, either ginger chews or even sucking on slices of raw ginger.  And that good old stand-by, ginger ale. Also, I know that for me, having a little something in my stomach before I took the pain meds helped prevent nausea, even if it was just a bit of yogurt or a couple of crackers.

I hope this phase passes quickly for you.

Chris

Tichondria's picture
Tichondria
Posts: 39
Joined: Mar 2016

I'm going to try miralax and that protein powder you were talking about.. and I don't know why i didn't even think about some ginger ale. I should have the hubby grab some. He made me tomatoe soup today and I told him to eat the rest of the meatloaf because I was eating so little of it and it don't want it to go bad. Plus I think he is done with chicken lol.  He has turned into quite the cook for me. I will try that collagen peptides though, i'll put it into my fruit juices or maybe when I make some smoothies.. Love home made smoothies, best thing ever.. just wish where i lived there was a Jamba Juice here. I LOVE those places!

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1557
Joined: Jun 2015

Miranda, I used Colace and Miralax after surgery. Please consider using both so that you can get things moving faster and more comfortably.  I also used both during chemo.  As long as you are on the pain meds, keep using them daily. They won't hurt you, and your body won't come to depend upon them once you are off the other meds. My doctor told me this and that was certainly the case for me.

I hope things settle down for you. BTW, I have a feeling the strange brain things is a result of the pain meds.  There are a couple of ladies on our board that are/were nurses. I'm hoping they will see this or your post and confirm my assumption or provide you a better explanation. Either way, it is probably a good idea to share it with your doctor.

Love and Hugs,

Cindi

Soup52's picture
Soup52
Posts: 902
Joined: Jan 2016

Yes, I agree with the other ladies. Stool softener  sand Miralax work for me. The constipation has been an ongoing problem for me, more than diarea. Also, drinking a lot of water can be helpful, too. I can't believe that they didn't automatically give you nausea meds. Because I've taken them proactively and didon't have any nausea as a result.

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

Hi Miranda, after my surgery I got off oxy as quick as possible because of the constipation.

It got so bad at the start of chemo that I had to call my gyn-onc nurses and they gave me their secret recipe to get things moving quickly: 1 cap full of Milk of Magnesia (MoM), 1 cap full of Miralax and 1 MoM cap full of prune juice. Mix together in a cup and warm in a microwave then drink. It tasted HORRIBLE but it did the trick in about 30 minutes.

After that, I started taking Miralax twice a day. I added in Metamucil a few weeks later. It keeps me regular without having to worry.

For protein, I eat plain, organic greek yogurt (whole or 2%) with a little strawberry preserves mixed in to cut the sourness. The yogurt has 23 grams of protein per cup - which is really hard to beat!

I hope you start to feel better soon!

 

 

Sandy3185's picture
Sandy3185
Posts: 228
Joined: Oct 2013

Tichondria I'm almost positive those symptoms are from the pain killers. I was taking Oxi after my surgery and I think I was taking it too often. I was having a lot of discomfort but I really didn't need to take the Oxi as often as I did! I started getting some weird reactions almost like hallucinations as well as having trouble finding words when talking with others. I stopped taking the Oxi and just took Tylenol and everything started getting better! My mind cleared up, my appetite improved( until I started chemo anyway!) and even my constipation got better, again until I started chemo. So my recommendation would be to cut way back on the Oxi and see if that doesn't help with all your problems! Good luck, Sandy

Tichondria's picture
Tichondria
Posts: 39
Joined: Mar 2016

Love you all, thank you so much. BTW the miralax worked like a charm!! I mixed it in with my apple juice so i couldn't taste a thing, and within 1 hour everything was going. So i'm going to lay off the miralax while I have diarrhea now (go figure) but I would rather have a little diarrhea than deal with constipation. But everything is working wonderfuly for that.

as for the narcotics i only take them about every 10-12 hours. usually at night, because by then everything hurts really bad. I don't walk a whole lot yet, but i do walk some, however by nighttime I hurt really bad and i'm not doing anything strenuous i just sit at my chair at my desk for a little bit or back into the couch. Not sure why the massive back spasms lately or the left side pulling/burning but i'm sure it will calm down and if not then my post op is april 8th so I'll figure something out. Still waiting to hear back on the staging, it's been over a week now so tomorrow morning / afternoon i'm going to call my gyno/oncol and see if they have the results of my staging back yet.

 

Hugs and hope everything is going well for you ladies.

Miranda

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