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Sick Of Being Sick, Tired Of The New Normal

mwells1004's picture
mwells1004
Posts: 13
Joined: Jul 2017

This is my first time posting on the boards but I have been here for about 6 months, getting encouragement and strength from all of you. I finally had to post though, I was diagnosed in March with stage 4 grade 3 Uterine Carcinosarcoma (MMMT). I have been dealing pretty well until recently. I just finished my 4th Chemo (carbo/taxol) and all I have to say is that I am tired of being sick, I am tired of sore legs and a gross tasting mouth. I am SO tired of people treating me like a porcelain doll or even worse treating me like I am 2 years old. I am tired of trying to stay positive but at the same time covertly make funeral plans so that my family won't be burdened. I know I am just being silly and this is just me whining but I just have to know...how do all of you ladies deal when it all just becomes too much to take?

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2892
Joined: Mar 2013

mwells, let me the first to formally welcome you with open arms.  I am so sorry to hear your diagnosis and the battle is wearisome.  You are not whining to us - we will listen to anything you have to say.

How do/did I deal?  Sometimes it was having a really good pity party for myself with big ole tears.  I just had to get it out and then I would pick myself up.  Hugs dear one.  I am sure the ladies will be along shortly with their thoughts.

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

Hi Mwells. 

Although I have a different diagnosis, I was where you are in the treatment last summer.  Try to picture yourself healed and what you'll be doing when that happens. I found practicing some guided imagery exercises every day helped me to stay positive. The University of Michigan Cancer Center has some that you can use for free. And I did have a few little pity parties but try not to go down that deep dark rabbit hole.  We're all with you.

Jairoldi's picture
Jairoldi
Posts: 221
Joined: May 2017

I feel similarly. Trying to stay positive, getting through the chemo, and even making the covert funeral plans. I had a big meltdown 2 weeks ago when my legs hurt so badly I had a hard time getting off the couch. I will have my 3rd carbo/taxol this Friday (every 21 days) and am so not looking forward to it. I have UPSC Stage 3. This week was good, other than tired legs and this is what will make me take myself on Friday for another round. 

Nellasing
Posts: 529
Joined: Oct 2016

Just want you to know we'll be thinking of you on Friday for #3!  You are doing great!!!  I hope you are letting them know about the pain so they can assist you with that.  There is no reason to tough it out when there is help available. 

I don't think there is anything negative in making plans for different outcomes.  It might give you peace of mind and that's huge!  Once you are done with those thoughts put them away and focus on the day at hand.  Living in the day- looking for each blessing - those are the things that helped me and help me to this day!  (((HUGS)))

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

Welcome to this club No one wants to belong to.  So sorry you have to go through this.  This is a good place to come for advice, information, compassion, and to just plain, vent.  I have been on this roller coaster for almost 5 years now. Also stage IV.  I can go for quite awhile and then I have a meltdown.  I cry, my husband holds me and after awhile the tears wash away my worries.  It is hard but hang in there, you are stronger than you think.

Hugs and prayers, Lou Ann

Gardena
Posts: 102
Joined: Jan 2016

The way you feel about what you're going thru is normal and you're going to find some days are rougher than others. Personally, I was miserable during frontline treatment, what you wrote totally described my feelings. Know you will feel better, you are stronger than you ever knew. You will come out of this beat up and wounded, but you will get stronger and your mind and body will heal. In the meantime, cut yourself some slack. Get outside when you can. Most importantly, this frontline treatment will end. You can do this, one step at a time, one day at a time. Hang in there, you're doing good.

Sandrine04
Posts: 76
Joined: Nov 2016

Hello,  my name is sandrine i am french. 

I have a adénocarcinoma endometrial, i am 40.  

You can speack with me on messenger ( sandrine la papaye) 

Kiss 

Donna Faye's picture
Donna Faye
Posts: 430
Joined: Jan 2017

mwells, most of us have been right where you are - and just know it is OK to have these emotions and it is OK to let it out ! I have always been the rock of my family and friends, but after a year of mishaps - a fall in July 2016 - then cancer discovered Dec. 2016 - surgery Jan. 2017 - chemo, blood clots and radiation from April to now - I decided to stop being the rock and be a woman in need of help! As soon as I admitted my fears and my anger to my family, friends and oncology team, they all came to my aid! Talking with a counselor from the cancer center, spending weekends with my son when I did not want to be alone, asking my son-in law to give me the blood thinner shots until I got brave enough to do it...the rock became a woman who needed others to be strong and they did not disappoint.  So, ask for the support you need and don't think you are alone.  It does get better. I had cancer 20 years ago and learned then that life is a one day at a time game, so hang strong.  Hugs!!!!

txtrisha55's picture
txtrisha55
Posts: 696
Joined: Apr 2011

As the other ladies have said, hang in there, one day at a time.  You are stronger than you think you are. Ask for help as you will find other will give it to you usually where you least expect it.  We all have had those moments in time where we just say screw I do not want to do this today....just do not do it everyday and get pulled in to deep.  There is help for it, talk with your doctors and they can give medicine to help combat those times that get to much.  I am Stage III grade 3 Uterine Carcinosarcoma (MMMT).  August 22, will be 6 years NED.  I had 6 rounds of carbo taxol chemo and no radiation.  Still here.  Still waiting but no worring to much about the other shoe dropping but it is still there in the back of my mind.  Life does get better it is just different, a new normal.  I had about 2 months right after surgery and begining of the chemo treatment that people treated me like a helpless person when I was the strong one of the family.   I had to learn to adjust.  My daughter gave me my shots except for a couple of times that she got to freaked becuse my stomach had no place that was not bruised.  I could not do it because I get freaked out by needles to bad and could not give myself the shot.  Most the time she was doing it I had a pillow over my head so I did not have to see it.  It would have been a bit difficult to try and hide my face and look to see where I was giving myself a shot.  I told her to go get her then BF and get him to do it.  He is diabitic and gives himself shots all the time, no big deal for him.  So covered up everything except my big ole stomach and had him come in and give me by shot.  It was kinda of funny.  Be strong but take time when you need it.  Come back as often as you need to, we are all here to help you. trish

janaes
Posts: 800
Joined: May 2016

I was where you are last summer.  I would write here and share simmilar feelings as you.  These wonderful ladies would remind me I am normal and they felt those feeling too and it would give me the stength to go on.  MMT stage 2 grade 3

mwells1004's picture
mwells1004
Posts: 13
Joined: Jul 2017

Thank you all so much for your responses. I know you all know how it is. It is such a blessing to hear from all of you and know that I am not alone in this. :)

 

Soup52's picture
Soup52
Posts: 906
Joined: Jan 2016

Welcome to our group! We will all be here to support you!

Nellasing
Posts: 529
Joined: Oct 2016

you are definitey NOT alone!  So glad you found us and let us know you are there- welcome. 

I think the best way I've gotten my way out of slumps and sheer panic is to focus in on the day I am in- not letting my wander into the what if's and just being thankful for what is before me.  My hubby and I take long walks with our 2 girls (rescue doggies) and I listen to the birds, look at the colors, enjoy moving my body (because I can) and mining for blessings- sometimes you have to strip away the "stuff" going on in your head to actually SEE how amazing life really is.  I was blown away by the fact that my body- even as under seige as it was- could heal the scars from my surgery, my port insertion etc. etc.  When I was able to walk further than the end of the block- then back on the trail instead of laying in bed.  But even in bed- I was so thankful for my hubby helping me, for the roof over my head, for the kitties who came to visit and keep me company.  I put any card I got up on the wall so I could see it and know people were thinking of me.  I hadn't found this site yet so missed out on the company of all these wonderful, sweet folks who pour their knowledge and support out to help a fellow traveler.  So many blessings- and knowing that my life and time is in the hands of God and nothing and no one will take me before that was the biggest and best comfort to me.

You are doing great!!!  Go ahead and make those plans- do what you have to do to make yourself comfortable and then LIVE your life.  None of us is promised more than the day we have right?!  You'll soon be through frontline and we'll be cheering with you!  (((HUGS)))

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1793
Joined: Jun 2015

Mwells and Jairoldi, so glad you found us.... Welcome. We are here for you. I think you can see that just by all of the love being sent your way... I always had what I called a Blue day after each treatment. It normally hit me about the 5th day after chemo. Your finish line will be here before you know it.  And, then the healing will amaze you. I could only walk one lap around the yard with great effort. Now, 1.5 years out and I walk 30 miles each week. Watching my hair come back in was fun. Hated the color but it was still fun to compare month to month pictures.  I hope you continue to push through the front line treatments and come out the other side stronger and with a greater zest for life!

If you haven't already, you might want to read a thread called 'Ladies Going Through chemo'.  There is a lot of information where several of us documented our journey. Some humor there as well.

Please keep in touch and let us know how you are doing.

Love and Hugs,

Cindi

Moped7946's picture
Moped7946
Posts: 40
Joined: May 2016

I hope you are feeling better and not so overwhelmed! This whole thing is just a very strange trip!! These ladies herre are way better at encouragement than I am but I will say just hang in there...it WILL get better...

Hugs to you too!!

Lauren

Lisa3320
Posts: 3
Joined: Jul 2017

Hi Ladies.  I found out on 7/12/17 that my life has been changed forever. I'm scared, numb, confused, anxious and many othe things right now.  Was diagnosed with uterine carcinosarcoma/MMMT range 3 and am scheduled for surgery on 9/8/17.  Is that too long to wait?  It seems a long time to me.  I'm so afraid that it will spread whle waiting for that date.  Oncologist said that i'll probably need radiation in addtion to chemo.  Anyway, I found this site while searching for a blog about this monster inside me.  Just scared and thought i'd reach out.

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

Hi Lisa, I was diagnosed with uterine MMMT (grade 3, stage 1b) in Sept 2015. It is a scary diagnosis but please know that there is hope! Surgery and treatment (chemo/radiation) is no fun but it is do-able and you can get back to a normal life. I am living proof of that and there are others on this board (who post more often than I do) who can attest to that fact as well. My surgery was scheduled within 2 weeks of my diagnosis but I can't say whether that is standard or not. If you are concerned about the timing, you should definitely call the Gynecological-Oncologist who will be doing your surgery to discuss. Good luck to you! Kim

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1793
Joined: Jun 2015

Lisa3320,

First of all, welcome to our board. Sorry you had to find us but you are in a great place to get information and support. What you are experiencing is very normal. We have all been there. Waiting is the hardest part of this journey. It does get easier once you know what you are dealing with and have a plan of attack. In the meantime, please consider asking for Lorazapam or another mild anxiety med. That helped me get through the waiting period. Your wait time sounds about right. I was DX'd the end of May, 2015 and didn't have my surgery until the end of July. Even the most aggressive cancers still take some time to grow. You will be fine from that perspective.

I hope you can take the time to read some of the post going back a couple of years. I think you will find them helpful and hopeful.

Please come back and ask us anything. Someone will come along that has an answer for you. Nothing is off limits.

Love and Hugs,

Cindi

Lisa3320
Posts: 3
Joined: Jul 2017

Cindi,

Thank for responding to my post.  It really helped.  I will speak to my dr about the med.  I've been reading so much info online that it's become overwelming.  

I truly appreciate the support you're giving.

BTW - I have a Teddy too but he's a cat with the personality of a dog! 

Thank you so much,

Lisa

Soup52's picture
Soup52
Posts: 906
Joined: Jan 2016

Lisa I'm so sorry you had to join our group. To put your mind somewhat at ease I was diagnosed in August 2015 and didn't have my surgery until mid October. After all my treatment which included internal and external radiation as well as 6 rounds of chemo I am clear as of July 2016. There is hope! We will all be here for you and yes ask for the medication to help ease your anxiety. Prayers!

Lisa3320
Posts: 3
Joined: Jul 2017

Thanks Soup.  I did get some meds for anxiety.  Unfortunately, I must be very sensitive to it because I took just 0.25 mg and slept for 12 hours!  So that scared me straight.  I'll think of a different outlet.  :) Take care.

 

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