Loss for words

sillylilmizzy
sillylilmizzy Member Posts: 10
edited March 2014 in Emotional Support #1
It's been a journey the last few months. There are moments I want to cry, I feel mad and other times I am so lost. I feel like I have lost that piece of me that I once had before my uterus was removed. Overies still there I go thru these mood swings, one moment I am mourning the child I'll never have with my husband. The next moment I am so frustrated because I use to be indpendant and could roll my wheelchair all day and clean and cook and do things. And other moments I am happy, and feel blessed to be alive.

I found out I had fibroid tumors about 5 years ago. I asked my doctor if I had cancer and he said no many times over the last 5 years. I had lost alot of blood due to the tumors one time my hemogloben level was at a 4 went to the hospital sat with a friend who just had stroke then when she was okay I checked myself into the hospital and that day was my first transfusion. It took a week of me walking around and feeling really tired and my heart almost giving away before i detected something was wrong. This time actually it came on with in hours I bled and threw up and then prayed to get into the car, and not pass out(My hemogloben was at a 6 this time. ) I had to make a decission to have My uterus removed, meant I would never be able to carry a child, but I couldn't leave my husband behind, or my friends how selfish would that be of me. I cried thru it was in the hospital most of the time. I thought the bad stuff was over, and h ere we could make new memories and go on with our life. Friday my doctor got the test back. He said there was cancer in the Lining of my uterus. I don't know if I am strong enough right now to wonder what this means.. But I do question all the time and I asked him some questions like do I still have it? Should I have more test? I am so at a loss what do I say, and what do I do.. I had to read on the internet what cancer of the lining of the uterus was called. It's endometrial Cancer, and to digest everything... I pray and hope it's gone.. But I am so scared and trying to be strong.

I can barely walk around or roll my wheelchair on long walks like I use too. I went out for a half hour yesterday and it took everything I had to walk back, and I am so tired today..

Comments

  • GregStahl
    GregStahl Member Posts: 188
    #2
    Sorry
    to read about all your going through. Have you seen an Oncologist yet?
    If you are looking to research endometrial Cancer, go to the M.D.Anderson website...they are the best in the world.
    If you need to talk, advice, vent.....we are here for you.
    Greg
  • GregStahl
    GregStahl Member Posts: 188
    #3
    MD Anderson link
    http://www.mdanderson.org/patient-and-cancer-information/cancer-information/cancer-types/uterine-cancer/index.html
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #4
    So Sorry you are having to
    So Sorry you are having to deal with all of these problems. You say you have had to have your uterus removed, did the dr. suggest that you have a cat or a pet scan done to check for anymore cancer? Was your uterus cancerous? I would think that the dr. would want you to do some chemo or radiation treatments. There a a lot of questions here that need to be answered. If you are not satisfied with your current dr. I would suggest you get a second opinion. Come here often and vent whenever you feel the need. Keep us updated.
    Tina
  • sillylilmizzy
    sillylilmizzy Member Posts: 10
    #5
    GregStahl said:

    Sorry
    to read about all your going through. Have you seen an Oncologist yet?
    If you are looking to research endometrial Cancer, go to the M.D.Anderson website...they are the best in the world.
    If you need to talk, advice, vent.....we are here for you.
    Greg

    Thank you
    Greg,

    I actually came across this site last nite.. I have had alot of questions this whole weekend .....my doctor called me today and sent me to another Doctor, I called them today they got me in right away my apt is tomorrow. So well see what happens. I have alot of mixed emotions. I will go to see that site you talked about and research an Oncologist. I think that is what the other doctor is, they just keep sending me to one doctor after another. I have an OB doctor, he is the one who removed the uterus, it is my primary doctor he worked with. But is the primary doctor who found all this stuff out and kept on top of it. It's a mess, this why I got on here to vent kinda but mostly to see what I should do next. Thanks alot every piece of advice the more I know it totally helps.

    Another friend Mona
  • sillylilmizzy
    sillylilmizzy Member Posts: 10
    #6
    Tina Blondek said:

    So Sorry you are having to
    So Sorry you are having to deal with all of these problems. You say you have had to have your uterus removed, did the dr. suggest that you have a cat or a pet scan done to check for anymore cancer? Was your uterus cancerous? I would think that the dr. would want you to do some chemo or radiation treatments. There a a lot of questions here that need to be answered. If you are not satisfied with your current dr. I would suggest you get a second opinion. Come here often and vent whenever you feel the need. Keep us updated.
    Tina

    Thank you for your support
    My doctor didn't do any test actually he was concentrating on the loss of blood and things like that. I think all this slipped thru the cracks. I had a cat scan toward the surgery to make sure my heart was okay. I have another apt tomorrow with another doctor, He got me in right away. I do have alot of questions, my primary doctor called me back today, It slipped thru my OB doctors fingers, I don't understand why he did not tell me there was cancer in the lining of the uterus. I know my body is recoving from this, but I am so tired. It'll be okay. I would of never known if I had not been sick on Friday and went to see my doctor.

    Thanks for your advice Tina

    Another friend Mona
  • jazzy1
    jazzy1 Member Posts: 1,379
    #7
    sillylilmizzy said:

    Thank you for your support
    My doctor didn't do any test actually he was concentrating on the loss of blood and things like that. I think all this slipped thru the cracks. I had a cat scan toward the surgery to make sure my heart was okay. I have another apt tomorrow with another doctor, He got me in right away. I do have alot of questions, my primary doctor called me back today, It slipped thru my OB doctors fingers, I don't understand why he did not tell me there was cancer in the lining of the uterus. I know my body is recoving from this, but I am so tired. It'll be okay. I would of never known if I had not been sick on Friday and went to see my doctor.

    Thanks for your advice Tina

    Another friend Mona

    Hum...
    Can't believe the doc didn't tell you about the cancer???? How could they not have that conversation with you as we all know that's the disease and the issue at hand?? I know we're all human so can only hope is was an oversight.

    Good luck with your appt tomorrow....keep us posted.

    Best to you and stay strong...
    Jan
  • dixiegirl
    dixiegirl Member Posts: 1,043 Member
    #8
    jazzy1 said:

    Hum...
    Can't believe the doc didn't tell you about the cancer???? How could they not have that conversation with you as we all know that's the disease and the issue at hand?? I know we're all human so can only hope is was an oversight.

    Good luck with your appt tomorrow....keep us posted.

    Best to you and stay strong...
    Jan

    Ask questions
    Honey I am so sorry to hear your frustrations. I know you're scared, this is scary stuff.
    I would imagine the new Dr you're going to see would be an oncologist. Write your questions down.....all of them. Make a list. Take someone with you and have them give the pages to your doc...and yes if necessary I said Pages (plural) :)

    I took two pages of questions to my surgeon for my biopsy, and what he didn't answer my oncologist did. I am never ashamed of asking to explain what I don't understand. We pay huge costs for their education and service to us.

    After things settle down you might consider a consultation with the doc who missed it. You deserve the right to vent to him. He needs to know how you feel and it's too easy to write things off by phone. He needs to see your pain.

    You'll find the next few weeks crazy and exhausing, but it's time to start the fight. Put the boxing gloves on honey and get ready for the whirlwind. You CAN do this. We'll be here to support you when you need it. Come to the chat room. We'll walk you through it as you need.

    Take care,

    Beth
  • GregStahl
    GregStahl Member Posts: 188
    #9
    sillylilmizzy said:

    Thank you
    Greg,

    I actually came across this site last nite.. I have had alot of questions this whole weekend .....my doctor called me today and sent me to another Doctor, I called them today they got me in right away my apt is tomorrow. So well see what happens. I have alot of mixed emotions. I will go to see that site you talked about and research an Oncologist. I think that is what the other doctor is, they just keep sending me to one doctor after another. I have an OB doctor, he is the one who removed the uterus, it is my primary doctor he worked with. But is the primary doctor who found all this stuff out and kept on top of it. It's a mess, this why I got on here to vent kinda but mostly to see what I should do next. Thanks alot every piece of advice the more I know it totally helps.

    Another friend Mona

    Good luck
    with the appt tomorrow, please do keep us posted.
    Greg
  • AnnaLeigh
    AnnaLeigh Member Posts: 187 Member
    #10
    It's a confusing and scary time
    Mona,

    My heart goes out to you because I know what a confusing and scary time this can be. Beth gave some wonderful advice about writing down your questions. Also write down the answers you get from the doctors so you can review them later after you get home. There will be too much information coming at you to be able to expect to remember it all. A notebook for your medical visits will come in handy later !!!

    Do you have someone that can attend the doctor visits with you? Someone to act as a patient advocate? A "doctor visit buddy" can also help ask new questions while you are there getting information. They can take notes for you and help you remember what comes next on the "To-do" list. Everyone goes through a certain amount of shock when they hear the word Cancer and they don't always have the ability to listen or communicate in a pro-active, assertive way.

    You are going through so much right now and I hope you have someone caring and compassionate enough to walk this hard road with you and hold your hand during this troubling time.

    Let us know how you are doing. We are hear to listen and to help if we can.
  • sillylilmizzy
    sillylilmizzy Member Posts: 10
    #11
    AnnaLeigh said:

    It's a confusing and scary time
    Mona,

    My heart goes out to you because I know what a confusing and scary time this can be. Beth gave some wonderful advice about writing down your questions. Also write down the answers you get from the doctors so you can review them later after you get home. There will be too much information coming at you to be able to expect to remember it all. A notebook for your medical visits will come in handy later !!!

    Do you have someone that can attend the doctor visits with you? Someone to act as a patient advocate? A "doctor visit buddy" can also help ask new questions while you are there getting information. They can take notes for you and help you remember what comes next on the "To-do" list. Everyone goes through a certain amount of shock when they hear the word Cancer and they don't always have the ability to listen or communicate in a pro-active, assertive way.

    You are going through so much right now and I hope you have someone caring and compassionate enough to walk this hard road with you and hold your hand during this troubling time.

    Let us know how you are doing. We are hear to listen and to help if we can.

    Thank you

    I did go see the Oncologist today it was actually a really nice caring place to go. Even the patients were so recieving kind and talkative. Got a little flirt out of a little old man, which his story was inspiring he had cancer first, then his sister got it. And was there to support her, and they both looked so happy and beautiful... It was a good day I was told I am at the beginning stages, more test need to be done. My doctor said I was lucky it was found it's not a common one to be looked for. So on Monday I go and get a CT of the abdomen and Pelvis with IV and Po Contrast. I don't know what that is.. But Yum... lol... And then I go to see an OB Oncologist in a week from that, and back again in another week to my Oncologist to get the final results. There was good news, beginning stages good, meaning they could of got it all.. But bad, he not sure, since no one ever did test or monitored it the last 5 years and I bled so much. I gotta say I will ask more questions, today was about giving blood getting information, and just sitting and enjoying others today. The real work begins next week. I dread them doing anything because I am still sore from having my uterus removed, I was so sick when I came home from riding the bus.. Ever bump just hurt so bad. I am grateful for everyone's support and compassion.. Thank you for your Letter Anna.. It helps to hear advice from others, to be able to listen and if I can help.

    Ps.. My husbands Grandma called today she is 75 and she said Mona.. You know I had full blown cancer, she said when the doctor told me. I said Okay, lets get to it and well beat it. And she is amazing she said she drank like 13 glasses of water a day and kept going and flushed that stuff right out of her body. And she said I never looked back I knew it could be done and I was determined to be happy.. What a great spirit.. She is wonderful..
  • GregStahl
    GregStahl Member Posts: 188
    #12
    sillylilmizzy said:

    Thank you

    I did go see the Oncologist today it was actually a really nice caring place to go. Even the patients were so recieving kind and talkative. Got a little flirt out of a little old man, which his story was inspiring he had cancer first, then his sister got it. And was there to support her, and they both looked so happy and beautiful... It was a good day I was told I am at the beginning stages, more test need to be done. My doctor said I was lucky it was found it's not a common one to be looked for. So on Monday I go and get a CT of the abdomen and Pelvis with IV and Po Contrast. I don't know what that is.. But Yum... lol... And then I go to see an OB Oncologist in a week from that, and back again in another week to my Oncologist to get the final results. There was good news, beginning stages good, meaning they could of got it all.. But bad, he not sure, since no one ever did test or monitored it the last 5 years and I bled so much. I gotta say I will ask more questions, today was about giving blood getting information, and just sitting and enjoying others today. The real work begins next week. I dread them doing anything because I am still sore from having my uterus removed, I was so sick when I came home from riding the bus.. Ever bump just hurt so bad. I am grateful for everyone's support and compassion.. Thank you for your Letter Anna.. It helps to hear advice from others, to be able to listen and if I can help.

    Ps.. My husbands Grandma called today she is 75 and she said Mona.. You know I had full blown cancer, she said when the doctor told me. I said Okay, lets get to it and well beat it. And she is amazing she said she drank like 13 glasses of water a day and kept going and flushed that stuff right out of her body. And she said I never looked back I knew it could be done and I was determined to be happy.. What a great spirit.. She is wonderful..

    Great
    news for you. Glad everything went well. Sorry you had to ride the bus, not fun at all, maybe you can find someone to drive you to the other appointments.

    Will keep you in my thoughts and prayers as you go meet the other Dr and do the tests. Go to the MD Anderson site for more info on the test they will run and write down and ask questions!!!!
    Greg

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