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MMMT / Return to work

Buzzy900
Posts: 9
Joined: Jun 2017

to anyone that may have uterine carcinosarcoma I find it so hard to seek others as this is so incredibly rare.  I had major surgery in February. Completed carbo/taxol in June and brachytherapy in August.  Have been home for ten months. I'm attempting to work for 4hours  a day eother in the office but mostly from home.  I'm just so very fatigued still. Not sure if that's normal. I'm hoping getting out a bit will be okay. I find this disease has put me in a very dark place. If anyone has any positive thoughts please let me know. I can't wrap my head around this frightening diagnosis 

Blessings to all

buzzy900

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2803
Joined: Mar 2013

Buzzy, I'd like to be the first to welcome you, I think you will find other women along in the next day or two, so I would encourage you to be sure to come back.  

It is hard to find anyplace that offers gyn cancer women a chance to talk, but fortunately, this board is pretty active and the women will openly share.

Buzzy, everyone is going to be different.  Some of us have been lucky enough to have worked throughout all our treatment while others have had very difficult timI am not sure if you have other medical conditions, and I hope you have asked your doctor about how to get the pep back in your step. Maybe they can recommend a diet change, or maybe a dietician can help you find some answers. 

Buzzy900
Posts: 9
Joined: Jun 2017

thank you for the warm welcome. Good advice about the diet change!  I will check back this forum as you recommend 

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

I too have uterine carcinosarcoma (stage 4 grade 3) I finished my chemo in August. I was very lucky and was able to keep my job as a CNA throughout my treatment. Everyone is so different but I definitely feel you with the fatigue, I have a newfound love of naps! You should definitely talk to your doctor about how much this is affecting you though, you deserve the best QOL possible. My docs drilled me with the importance of staying active even when I didn't want to, as I said definitely talk to your doc but exercise, balanced eating and good hydration are always a good idea. Feel free to message me if you ever want to vent about the dreaded MMMT! Lots of love, Melissa 

Buzzy900
Posts: 9
Joined: Jun 2017

Hi Melissa. I'm sure to be in touch With you. Thanks for the kind note. Not happy to be in this club but am grateful for the caring people

with warm and caring thoughts

Buzzy

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1686
Joined: Jun 2015

Hi Buzzy, Welcome. It has only been 4 months since you finished treatment. Your body has gone through a lot. Please be patient with yourself. It took 18 months for me to really feel "normal".  At about 6 months I didn't require as much rest time. It took 12 months for my blood counts to move back into a low normal range. You will build up your strength. But it doesn't happen overnight. Everyone is different so you may improve at a faster pace than I did.

I agree with the other ladies.... drink a lot of water, eat well, and push yourself to exercise as much as you can. I walk every day. I'm up to 4+ miles now. Be kind to yourself and know things do improve.

Love and Hugs,

Cindi

Buzzy900
Posts: 9
Joined: Jun 2017

hi Cindi

thanks for the welcome and the good advice. I was in panic mode about being so tired. But what you say makes sense. I have been through the mill between diagnosis and treatment.  I guess my body is still healing. I will try walking. I do drink water all day. I guess I used to be so energetic it's hard to adjust.

Thanks again for helping me navigate through this 

love and hugs 

Denise

txtrisha55's picture
txtrisha55
Posts: 686
Joined: Apr 2011

 

Welcome and sorry you had to join the club.  This is a great web site, full of caring and loving women and caretakers, which can listen to you venting, crying, celebrating, and just sharing your concerns.

 

I would suggest talking with your gyn onc dr or their nurses and ask them if what you are feeling is normal and do they have suggestions to help.  You could also see if the cancer center you went to has a support group for cancer survivors.  You would not have to have someone with “Your Type of Cancer” most people go through the same “not me” when they hear the word cancer.

 

You are a survivor. You have gotten through the rough part of the diagnosis, surgery, and treatment.  Now to get yourself back into the swing of things.  Everyone is different.

 

I was Grade 3, Stage 3C1 MMMT back in April 2011.  I had Surgery, Chemo and no radiation.  I took off two months but went back to work after two chemo treatments.  I still had four to go.  I went back to work bald.  Yes I had bad days and those days I took off.  I got up and walked, changed some of my eating habits and lost a little bit of weight.

 

I am 6 years from the start of it all and no recurrence.  I feel blessed but I still think about it.  I pray you find the answers you are looking for and get back to a new normal. trish

 

Buzzy900
Posts: 9
Joined: Jun 2017

hi Trish

i am so happy for you. Your story is such an inspiration. I was falling into a very dark place. Crying all day and wondering what will happen to me. I'm so grateful for your post

you have given me that ray of hope and I thank you

 

denise

survivingsu's picture
survivingsu
Posts: 134
Joined: Apr 2013

Hi Buzzy,

I had a rare and very aggressive uterine cancer (small cell undifferentiated carcinoma) 8 years ago.  The cancer and the treatment (simultaneous chemo/radiation, internal radiation, then surgery, then follow-up chemo) was super hard on me, wiped me out, especially my blood level numbers.  I had a lot of transfusions during treatment.  It was hard going back to work after treatment, I was so tired...then they found my Thyroid was not working right and I take meds for that.  Anyway, it takes a lot of time to get back in the swing of things - but it can be done!  Hang in there!!!!

Susan

Buzzy900
Posts: 9
Joined: Jun 2017

Hi Susan

thanks so much for your post and letting me know it does take time to get back into the swing. You are supportive and that means a lot to me. 

 

Much appreciated

Denise

survivingsu's picture
survivingsu
Posts: 134
Joined: Apr 2013

Hi again Buzzy,

Thank you very much for your reply, that lets me know I was helpful to you.  Everyone is different, with different treatments, conditions, etc., but here are a few specific examples in my case:

1) Strength and endurance after treatment was a very gradual thing for me.  Before heading back to work I had to practice walking to my neighborhood bus stop so I'd know I could do it.  It took a few months to feel like myself, and even then I didn't quite.  About a year later I got my port removed, and boy that made me feel a lot like my old self!

2) Aches and pains - I still get them, I can't tell if it is because of the treatment, or just aging.

3) My guts took a long time getting back to near-normal...almost 3 years I think, again it was a gradual improvement thing.

4) My hair - I went bald twice during treatment.  It started growing back when I had my final chemo post-surgery, and that was the second time I went bald.  My hair grew back, but it is thin and I used to have thick, full hair...but aging and hereditary can do that too.

5) Having survived cancer takes its toll mentally, at least it did for me, but that gets much better over time too.  I easily worried about every little test, pain, number, whatever, until more time went by & I felt good.  I also experienced guilt, as I knew really good people do not necessarily survive cancer, that is eventually replaced by the joy of just being alive, and wanting to share and help others.  More than ever this experience reinforced the big picture that all we have is each other and a little time.

My very best to you!

:0)

Susan

Buzzy900
Posts: 9
Joined: Jun 2017

Thanks again. I need the positive reinforcement. It's all so consuming and frightening. I'm taking baby steps but I can see I'm nowhere near I used to be. I will follow your good advice and pray I somewhat return to who I once was. Lots of prayers and positivity not only for me but all of us  mentally I'm spent and hoping it gets easier  

 

thanks again for reaching out

Denise

janaes
Posts: 800
Joined: May 2016

Welcome my story is this. I too was diagnosed with MMMtvstage two grade three.   I wanted to work. I was fortunate to have summers off work so i missed my last month of work and had my surgery in may 2016.  I recovered from surgery and started chemo in june. I was half way done with chemo treatments when i went back to work.  I couldnt do it i worked three days and went home and the next day went to my bosses boss and she okayed me to take 3 months off.  

I will tell you when i was done with treatment, it took alot of work to get where i wanted to be.  I went back to work sometime in nov.  4 hours a day. I had to take hour breaks at first and had to come home an restfor an hour before i did any thing else.  Before i went back to work i was at first just walking to the corner an back.  I just did a little more each day.  We are all different but that is how it went fot me.  It took months to feel fairly good. Good luck janae

  

Buzzy900
Posts: 9
Joined: Jun 2017

Hi Janae

thanks for the encouragement and sharing your story. I just returned to work today for 4 hours.  2 in the office and 2 at home. It actually felt good to get off the couch and interface with people. Less time to feel sorry for me and all the what if worrying!  I did fall asleep before dinner I was wiped out. But I'm praying I get back to where I was or close to it 

 

thank you again!! Denise 

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