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Dos and Don’ts for Thyroidectomized Patients

Post Published: 30 April 2012
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Category: Join The Discussion
This post currently has 24 responses. Leave a comment

Sarah Young’s Do’s and Don’ts for thyroid cancer survivors. She is sharing her story and her list with us. We always want information and resources, so we can formulate our own individual opinions. Yes? Yes. I also think this applies to many of us with thyroid autoimmune diseases and conditions. Speaking for myself, it does. Thanks, Sarah!

DOs and DON’Ts FOR THE THYROIDLESS

Throughout my thyroid cancer experience, I have had unlimited amounts of support from my family and my closest friends. I have even been supported by new friends online who are having the same experiences. I am one of the lucky ones. I only have to deal with the annoying “helpfulness” of acquaintances and strangers. So, to help those of you who know someone who had thyroid cancer or someone who is struggling to overcome uncontrolled hypothyroidism, here is my list of dos and don’ts.

DON’T EVER SAY…

“I know someone who had thyroid cancer and they’re totally fine!”

Would you say that to someone whose house burned down? “My friend’s house burned down and they are fine now!” No, you wouldn’t say that. So don’t say that to someone who also just had a devastating, life-altering experience.

“If you had to get cancer, that’s the best one to get, right?”

This one is my favorites, because even I said it when I was first diagnosed. What it really means is, “I’m not going to look sick to you and I probably won’t die from this, so people around me won’t have to feel guilty and uncomfortable.”

“At least you are alive.”

Again, is that something you would say to someone who told you their house burned down? Yes, I am happy I am alive. At least we are ALL alive. That doesn’t mean it is okay when crappy things happen to us.

“Have you tried (fill in the blank here) to lose weight?”

No, I haven’t tried that! Wow! What a lifesaver you are! Let me assure you – I have tried EVERYTHING.

“Were you a smoker?”

No. But would that make you feel better about your diagnosis? Like I brought it on myself or something?

“Not everything is because of your thyroid.”

You’re right! Not everything! Just my body temperature, my metabolism, my hormone regulation, my digestion, my ovulation, my energy level, my brain processes, my hair, my nails, my skin and MY MOOD.

DO SAY…

“What can I do to help?”

We are tired. ALL THE TIME.

“…”

That’s right – just don’t say anything. Listen to us vent, and then don’t comment.

“It’s okay.”

Be there for us, and cut us a lot of slack. Sometimes we get overwhelmed and we overreact to things. Imagine waking up one day and not having any control over how “off” you feel. Imagine having the rug pulled out from under you, and everything you have ever known as normal is GONE. Sometimes we just don’t have the energy to pretend that we are the same. We’re not.

I am doing well…I really am. And I know how  lucky I am. I know how much worse it could be, and I am grateful for what I have. But that doesn’t mean I don’t miss life as I used to know it. That’s why I keep fighting. I am working so hard to put the missing pieces back together, and I have to believe that someday I will. Just don’t tell me that you know someone else who did…and now they’re totally fine.

_________

Sarah Young

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24 Responses to “Dos and Don’ts for Thyroidectomized Patients”

  1. Stephen says:

    Awesome post!! Good for you for putting into words what everyone else just thinks!!! I don’t have thyroid cancer, I have Hashimotos Disease. If I get told one more time I gained 30 pounds in less than a year because people “think” I don’t eat well I’m going to flip! Haha! Keep up the good fight! Life as you once knew it WILL return!
    Stephen

  2. Nicole says:

    Wonderful post, thank you so much for sharing. I just finished all of my treatment for thyroid cancer and feel HORRIBLE right now. I want my family and friends to read this, maybe they would understand a little more. Again thank you, I needed this today :)

  3. Jen Daly says:

    I LOVE this! Hooray for you for addr
    essing all of these statements that we have all heard somewhere along the line.
    I am 10 yrs cancer free. Im having my total body scan this friday and can honestly say that even after all these yrs, I still have days when Im not 100%
    Just today when I was in the nuclear medicine dept of the hospital waiting room, an elderly man asked what brought me in today. I explained and his response? Well that’s the best cancer to have, if you have to have cancer right? You just take a pill everyday and you’re fine-right? Um I just looked at him and smiled. He seemed comfortable with my response.
    People are just uneducated about the thyroid I guess.
    So thank you….even after 10 yrs I can totally relate with every comment made.
    Good luck to you. I wish you more good days then bad ones :)

  4. bea says:

    thanks for your post- so true! i am an almost( may 21st) two year papillary thyroid cancer survivor. i have had the same things said to me by well meaning, but stupid, people! hang in there and best wishes to you. i have an ongoing blog that i started when i was diagnosed, losingthebutterfly.com if you are interested in reading some of it. again, thanks and best wishes.

  5. Karen says:

    I am a thyroid cancer survivor and I just finished up my 4th I131 withdrawal scan with a diagnosis of NED (no evidence of disease). I can relate to the normal comment. When I first went through cancer and getting diagnosed, which took 5 year, I watched helplessly as my normal slipped completely from my grasp. It took over a year after surgery and treatment to get back a new normal. I will never again know that old normal….I miss it but the new normal grows on you after awhile. I am actually looking forward to getting it back now that I can go back on my meds. No nothing is the same after this procedure but I try to look at it as a an adventure. What will
    “normal” be like this time. If I couldn’t laugh at myself I’d probably just have a nervous breakdown and call it quits.

  6. This post is awesome. I think it sums up the whole situation
    perfectly. Great job!

  7. Lorraine says:

    Thank you ….just thank you x

  8. Ashley Evans says:

    This is an AWEOME article!! I feel like I am being selfish in being upset about it when I think about people who have much worse things going on but nevertheless its OUR lives and we are having to deal with cancer and any cancer is scary.

  9. Lori Hoag says:

    i have printed off your list and just want to hand it out to everyone. My daughter is 17 and will be going into surgery in a week for thyroid cancer. Even though many mean well, I hate when they say stupid stuff. As if I am not suppose to worry about my baby or get upset. Yes, she is 17, but she is still my baby girl.

  10. Christine says:

    Thank you so much for this post! just discovered you guys and having gone through thyroid cancer myself at the age of 22 i have experienced every one of these things mentioned and feel the same way. so good to know there are others out there that feel the same way i do and that i’m not alone or am not crazy for being exhausted and tired all the time. Thanks again!

  11. Teanah says:

    Thank you for saying the words that match me exactly…sometimes knowing you are not the only one helps to feel less insane.

  12. Deb says:

    I love this! =] x

  13. Sherry says:

    THANK YOU!!!

    As i lie here being “lazy” 7 days post TT surgery.

    At least I am ‘alive’ and ‘only’ had/ve thyroid cancer-
    My friends Aunt Helen had it and shes grrreat now!

    Shut the |<%#} UP'!!!

    ;)
    Thanks for the post!
    Needed this today.

    Btw, i have stopped answering my phone to limit the 'helpful' comments.

  14. Trish Raines says:

    I can’t tell you what a spark this gave me after a long period of feeling like pure hell. I’m so glad to see that I’m not depressed or crazy because it’s NOT my nature! I have battled Thyroid cancer & feel like it has won! I try to pretend that I feel normal & happy & okay to do things with family & friends but what I really want to do is climb in my bed & sleep for days upon end. I know my battle is not over & I have to face that…..but I want to feel normal again! PLEASE tell me I will or I may just go to bed & never get up!

  15. Christee says:

    Thank You. I just found this website and it already helped. I was diagnosed with papillary carcinoma two months ago and had my thyroidexomy a week ago. Only my family knows and closest friends. Im afraid of telling others bout it cause I don’t know how to deal or respond to them. You’re always gonna have that person who says the wrong thing. Having this cut across my neck will lead to many questions, but now I know I can do it. just knowing others are going through this or already did helps a lot.

  16. Rose says:

    my daughter had a thyroidectomy in 2004 and a few months later started having seizures. She has been on thy meds all these years and still has all the symptoms. We live in Northern California and we are looking for a GOOD thy dr. One that does more than scratch the surface. She really needs help. Any suggestions?

  17. Amanda says:

    How brilliant you are! You have absolutely nailed it with the oh so helpful comments that everyone has for us all of the time – the next person that suggests I drink protein or fibre drinks as a substitute for healthy food is going to hear a response far greater than they bargained for.

  18. Ashley Evans says:

    I just realized all the emails I was getting was you all responding to my post =) I am so glad the you liked it and that it seemed to help you feel like your not alone. This journey is a tough one but we can make it through by supporting each other! I wish I could take credit for this piece but I was not the mastermind =). I saw it online and almost cried! It just sums thing up so perfectly and I think was written by Sarah Young. Again, glad you all could relate to it! I know I sure can!

  19. Kimberlee says:

    I just read this for the third day in a row and have tears in my eyes once again. Thank you for publishing it and your dear doctor blog. I just had my first thyrogen testing and am waiting to find out about the radiation . Had a family funeral last week while doing that and heard from many aunts and cousins about how lucky I was and how ao many of their kids had “the same as me or worst”… No not one of them has had thyroid cancer but apparently they feel anything to do with thyroid is the same or worst. Yes I smile a lot and my lumpy hideous scar is slowly fading since my second surgery but I’m so tired and needed to read your article. Thanks agian. :-)

  20. Gloria says:

    What a great post!Made me teary-eyed to know there’s so many out there that know what I’m going thru! Yes. I miss the old, thinner me! I used to have a great energetic edge, where the heck did that go? do you get this, too? “Don’t stress. Don’t worry. It’ll make it worse.”! Of course I’m stressing! Of course I’m worrying! I can’t help it! And if you tell me NOT to do it, it’ll make me stress more! Please let me handle it as best I can. Anyway, thanks for the post, and thanks everyone in this “broken butterfly” community.

  21. Jill says:

    Thank you for this post. I am a thyroid cancer patient and I hear those lines, ALL THE TIME. I am too exhausted to be offended, so thank you for verbalizing what I am thinking.

  22. Karen says:

    I love this…I have had everyone say your cancer was small and contained…you are lucky. I am so sick of hearing that. Yes I am lucky and yes I am very thankful. But why am I suppose to look the otherway because it was small and contained? It was cancer and it was in my body and I feel like crap! I am three weeks post op and having all the symptoms of a thyroid not working and all that entails.

  23. Sarah Young says:

    It has been awhile since I checked the comments on my post! I am sad that we are all in the same boat, but so happy we have each other. We are never alone in our struggle! Best of health to you all!

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