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leahs25
Posts: 5
Joined: Jan 2010

I had Papillary thyrpid cancer, my thyroid, along with its cancer, removed almost two years ago. in november my father in law died, and my world which had been held in a delicate balance was thrown to the wind. I watched my mother in law cope and deal and become strong. One thing she did was join a forum, like this, she sugested i find one. So this is my first "post". I feel like i am tired of being tired, slow, medicated. But I am so young and i have my whole life ahead of me, one which i have been latley thinking will be filled with sickness and pills and Drs. I know this is negative, which is a bad start, but if i didnt feel neagtive I wouldnt need to post on a discusion board. I had a very minor dental surgery last week, which has put me up all week, not because of the dentist, but becasue of my body. I have pain a lot, salivary gland damage from the radiation, and the added dental work has made me really sad. I just want to feel like ME again. Am I whinning, i think so a bit, but so are we all, which is why we're here, becasue who else can we complain to besides people who know what its like to be us, to be tired and frustrated, but still be normal mostly healthy people. I wonder why Dr's say "its the best cancer to have, its not a big deal, your going to be fine" did they have thyroid cancer, do they know what it feels like?
This isnt a question so much as it is my rant about my own frustraion. I am generally very postive, optinistic and idealistic, but this week i feel lost and i just wanted to connect with other people who I know feel the same way, so that I didnt feel so strange.
Any comments are welcome
Thanks for being here so that I have someone to complain to this week

tonesgurl
Posts: 42
Joined: Dec 2009

Hey Leahs25,

U r definitely not alone and the complaining is ok. I also was told this cancer was the best cancer to have.....BS!!!!! I was diagnosed with Papillary cancer in July '09 and had 160 mci of RAI in November '09 (why it took so long is because I had to be off my meds for 6 weeks, but if u add the time up it was still hell of long before I got the RAI). I don't feel at all like I used to and like u said it's hard to describe to someone who hasn't been through it. Tired,edgy,frustrated,pain, u name it I have felt it too. I tell myself that tomorrow is going to be better and some days that's true but most days it's not! I just try to take it one day at a time. My cancer is still present though, the TT and RAI haven't proven successful yet but I hear that it takes about 6 months for the RAI to do it's job.

ima_survivor
Posts: 6
Joined: Jan 2010

I know that getting off your meds for 6 weeks is a nightmare...I recently had my second surgery at UCLA and they put me on Cytomel. If you have to do the RAI-131 again ask your doctor to prescribe this! It's super fast acting and you only have to be off your meds for 2 weeks!! Then you can get back to living and loving life much sooner. Also, make sure you have the low iodine diet two weeks before and after, and low iodine diet two weeks after so those nasty thyroid cancer cells are starving for the iodine. They'll absorb the RAI-131, increasing your chances of a successful outcome. I'm due for my next RAI-131 treatment in two weeks, and I really could have used this information, so i pray it helps you guys out!! Good luck with everything, and know that you're not alone!

dancercatsmom
Posts: 2
Joined: Jan 2010

I was diagnosed in 2001 and had my thyroid and 2 parathyroids removed and.... I won't go into it all. Presently I actually am feeling a lot better. Hopefully it won't take you as long and you have a good medical network. I didn't and my first doctor and endocrinologist missed things. Know your numbers. Get your labwork done and know what the results mean. Demand your doctor explain each and every number to you. Thyroglobulin should be zero, not in the normal range. The normal range is for people who have thyroids - something my first doctors screwed up. It took me a few years to track down someone who really knew what the hell was going on and now I'm in good hands and actually feel good again. Recently, I changed my diet radically and got off as much processed food as possible, no caffeine and lots of fresh fruits and veggies and filtered water and I really feel the difference. I never thought I'd wake up feeling energized again and that's just started happening in the last few months. Staying hydrated makes a difference. Allow yourself to feel crummy but know when it's time to make yourself do something good for you. Try to have fun and laugh - protect yourself from negative folks (friend and family)and only let in folks who treat you with kindness and compassion. It takes time but it does get better, it really does.

swee-ling
Posts: 1
Joined: Jan 2010

hello,
i had it too Papillary thyroid cancer i was diagnosed 2002 staged 4, i had 5 major operations and 8 times radiojodtheraphy and my last dosage of radiojod was 7500 mcb, i know every inch feeling of it, until now my left vocal cord is paralyzed, and all my Doctors are telling me that i will never able to sing again, coz singing is my life, and i told them you are only God's instrument, and In His Time i will be able to sing again, and in God's grace and mercy i am 3 and a half years cancer free and since 3 years i am singing in a German church choir....
The only thing i can say is have faith in God, think positive, attend church activities if you can, go out with good friends avoid negative people and conversation and most of all when the negative feeling is dragging you down or you are being depress....pray and ask God for guidance and more patience, coz as a cancer patient i had to learn real patience and i know it wasn't easy, coz it took me few years to learned it, i take one day at a time, as if it is the last day of my life, so i call friends and have coffee together or listening to music or reading books or go to movies etc., and if ever it is the last of my life, i hope i'm having a cup of tea in a garden with my best friend.....God Bless

usljh10
Posts: 85
Joined: Apr 2009

I like the way you think!!! I'm also a papillary camcer surviror, clean since March 2008. Be positive. :)

Lisa

Blair84's picture
Blair84
Posts: 45
Joined: Jan 2010

I loved you post....so positive. Im new to this, diagnosed with papillary carcinoma last week and Im soooo scared. I have positive people around me but still...very scared.

butterfly11
Posts: 6
Joined: Jan 2010

You have every right to feel the way u feel. i have had two surgery to try to get rid of follicular cancer. I have not had the rai treastment yet but that will be the next step. I feel exactly the same. I am always tired mood swings due to the removal of the total thyroid. I hold on to the fact that the road that i am on will eventually have sunny skies. I am 38 with two children and I to am usually very upbeat and active. The bast two months i am miserable . I totally understand and wish i could meet people in a support group in my area. I am tired of docs telling me "best type of cancer"- best and cancer in the same sentence. AI am so tired but i refuse to give into this disease. I will pray for you and believe it or not we will survive stronger and better than before. God bless.

bribeauty25's picture
bribeauty25
Posts: 10
Joined: Jan 2010

I agree! my surgeon gave me that line just after he told me it was indeed cancer and I was to have another surgery. I had follicular cancer and am awaiting the radioactive iodine treatment. My last surgery was Jan. 4, 2009.
I dont think that telling a cancer patient it is the "best type" to have really makes any sense. Being diagnosed with cancer changes your life no matter what type. I am struggling with my emotions as I tredge through this quicksand that is currently my life, and I would appreciate the time to greive. I am being a bit dramatic but that is how I feel right now so I will let it out and try again tomorrow to be sunny! I am learning to experience the emotions I feel so if they are negative I can let them go as quickly as they came. If you don't give yourself time to feel them you can't move forward. Don't feel guilty for your feelings! I'm glad to find others who are experiencing this as well. You are the ones who can really understand what this is like.
Thank you for listening to my rant!! this was my first post....hopefully next post I will be having a sunny day! lol

Blair84's picture
Blair84
Posts: 45
Joined: Jan 2010

I just got diagnosed with papillary carcinoma last week and I'm very scared of everything. The surgery, RIA and the medication. I'm only 25 and from reading all the posts I feel like my life will never be the same. You are so right If I ever hear anybody saying that I go the best cancer I will puke, seriously there is no such as thing...I wish you all the best. God bless you

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