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Thyloneliness: Hollow Echo of a Solitary Struggle

Post Published: 22 February 2010
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Category: Dear Thyroid Letters
This post currently has 19 responses. Leave a comment

Dear Thyroid,

What can I say? You stayed dormant most of my life, then when I reached the “menopausal age” you started up. I assumed that I was pre-menopausal, so I disregarded the symptoms. I would be a caring loving person one minute, and the next I would go off on family, friends, and co-workers. I was gaining weight and slowly losing my hair. When I would talk to people, I would hear “Oh I have the same thing… So I never once thought it was my thyroid”until one day this HUGE lump was sticking out of my neck. When I would sleep at night, I would have trouble breathing and would have to switch sides to fall back to sleep. By the time I knew what happened, I was in the doctor’s office getting a biopsy. Within two weeks, I was in and out of the hospital and diagnosed with thyroid cancer. I didn’t have time for it to sink in. A doctor sent me to the hospital for an iodine pill that’s supposed to take care of any leftover cancer. So here I am trying to deal with what just happened to me, and I have to stay away from everyone for five days. Five fucking days to be locked in my room with nothing but time to think about what is happening to me. Thanks a lot! You can only imagine what your mind can do when you are alone for five days…

I have been given ZERO information. Don’t know how this happened;they have no answers. They don’t even know what I am supposed to do to make sure nothing like this happens again NOTHING!!! Am I supposed to change the way I eat? Who knows?,   Am I supposed to exercise? Who knows? You have cancer, take a pill and just move on with your life. Oh, and get used to this scar you have going across your neck try not to look at it. The whole thing is FUCKING BULLSHIT. My tumor was 4.3cm, which I am being told was pretty frickin’ big. I had to sign this sheet stating all of things that could happen to me during the surgery. It’s been a little over four months now, and from time to time I wake up with a sore throat that goes away about an hour after I wake up. I have weird feelings in my neck that I can’t explain and I am terrified to ask. I don’t know if I could handle being told that they were wrong and that the cancer spread to my throat. Who is there to talk to? Who’s there to say, “hey everything you’re feeling is normal; Everything that’s happening to you is normal? NO ONE.

I cry alone. I deal alone. Everyone thinks I’ve just moved on, but they’re wrong. I put on a great face;but inside I’m a basket case.

Dee Berardinelli

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19 Responses to “Thyloneliness: Hollow Echo of a Solitary Struggle”

  1. Hypogirl says:

    Dee,
    thanks for your wonderfully honest letter. You are so far from alone, we are here to support you. I hope that you can find some comfort here. There are very knowledgable ladies on this site. I wish I could give you a big hug! Everything you are feeling is normal.

  2. Monica Stevens says:

    Hi Dee, I hear you, feel for you, and grieve with you. It’s been 6 months since my surgery and I still freak out when I feel any twinge or weirdness in my throat area. It may feel as though you are alone but know you are not – anytime you need a fellow thyroidless friend, I’m here.
    ☮ ♥
    Monica

  3. Lolly says:

    Hi Dee,

    What a heart felt letter I thypplaud you for being straight up and honest about how you feel pulling no punches.

    You know what thyrella you’re not alone you got us all here, if ever you want to chat Vent or whatever, hook up with other thyca’s those who have been through it are still going through it now.
    Also you should get a follow up appointment to check that all the cancer has gone if not get onto it and insist on one.

    I too went through a similar thing thinking my symptoms where lack of HRT doc increased them to double the dose only to find out later I had GD larger nodule about the size of yours on my right lobe I had 5 FNA’s and each one came back inconclusive I went through months or wondering if it was cancer or not and not having a definitive answer had only one choice left and that was to get the fucker out, guess what it came back BENIGN.

    Great but all that shit leading up to it was traumatic, not to mention all the FNA I had to endure one nearly every 6 weeks for 5 months and no Local either to numb the area.What’s done is done I have to live with it scars heal now its’ onwards and upwards from here on in.

    Don’t ever think you are alone with this there are some great peeps on here that would love to share and help so don’t be afraid to ask.

    Great Letter BTW. And here’s to being cancer Free so you can start healing.

    Lolly

  4. Joanna says:

    Dee,

    Thank you for sharing such an open, honest letter. My favorite line is “Everyone thinks I’ve just moved on, but they’re wrong.” I completely get this. Please know that we are here for you when you need us. I am so willing to chat with you and share any thyroid cancer resources I have…just let me know.

    Much love to you.

  5. Michelle says:

    Dee, thank you for sharing. As you can see from the others ready posting, this is the place to not be alone in this struggle. I am about 3 months behind you. I had a 3cm papillary nodule on my right lobe. In fact, my letter is posting this thursday, so you can read my story too. I am so grateful it’s out. But I am a little tired of hearing how “it’s so easily cured” and “the good cancer”. You’re right, people think surgery is over and you just move on. Actually now is when it seems one has time to think about what just happened in that whirlwind of tests and doctors and surgery. I definitley understand what you are saying. I thought I was pre-menopausal too! At 38! Glad you found this forum too. Have your doctors laid out your follow-up care plan? I’m happy to share what I’ve learned…

  6. Mike says:

    “There are very knowledgable ladies on this site”
    (HYPOGIRL)
    For myself, I’m neither knowledgable or a lady, but I stillwant to thank you for your DEAR THYROID letter. I found this site over the weekend, and have been doing much reading. I’m here for the knowledge. Last week, after a needle biopsy at three sites, I was told I have thyroid cancer.Tomorrow, Tues. 02/23/2010, I have my initial oncology consult at our regional cancer center. From reading letters and notes from many of you, I know I have a long journey in front of me. And in a way, and please don’t take this wrong…
    I feel like I’m joining the girls club ? 🙂
    Michael

  7. Dear Thyroid says:

    Hypogirl! Thanks for sharing such comforting words to Dee.

    Yes, I agree our community is comprised of fabulous and intelligent women and men, echoing what Mike said!

    xo

  8. Dear Thyroid says:

    Lolly;

    WOW. WOW. WOW. What you endured is unbelievable and terrifying, so sorry you went through it.

    Why no anesthesia?! Did they at least give you pain meds or better yet tranquilizers?!

    Thank you for extending loving, nurturing support!

    xo

  9. Dear Thyroid says:

    Monica – Very traumatizing what you’ve been through, to be sure. I can imagine feeling very nervous and on edge with the slightest twinge, hint or smell of what feels abnormal in the neck region. You’re getting through it, which is great and you are not alone!

    Love the support, kid.

    xo

  10. Dear Thyroid says:

    Joanna – That’s really wonderful of you. I think those ThyCa resources would be tremendously beneficial to Dee. We have listed some here (of course if you want to add to it, please do!) http://bit.ly/8oNCuU

    Great support! Thanks for extending yourself, too.

    xo

  11. Hypogirl says:

    Sorry Mike – I stand corrected. When I meant “There are very knowledgable ladies on this site” I ment out wonderful moderators who all happen to be ladies.

    I will correct my statement by saying

    “there are very knowledgable people that visit this site and can help”

    Sorry to offend. Didn’t mean too.

  12. Dear Thyroid says:

    Michelle – Thank you so much for sharing and extending yourself, too.

    I love that you wrote about the aftermath. I attribute a lack of awareness to people’s responses like “Well, at least it’s behind you.” and “You’re over it”. As if that’s possible? You’re right, you need to process and realize what’s happened to you and your body and how that’s forever changed you because once you’re diagnosed, boom; you go right into a whirlwind of treatment.

    Great support.

    xo

  13. Dear Thyroid says:

    Side note thank you to everyone for your incredible generosity and willingness to connect with Dee!

  14. Dear Thyroid says:

    HypoG, you didn’t offend. You’re great!

    In my opinion, I think this community as a whole, every single person in this community represents a wealth of information and resources as well as support. This is just my opinion, but I really think it’s the community that shapes the voices.

    xo

    Didn’t offend, lovey.

    xo

  15. Dear Thyroid says:

    Mike;

    We’re so happy you found us and joined us! We welcome you into the Gland Canyon with open glands.

    There are many men in our community, so you are not alone! Not only are the women in our community welcoming and knowledgeable, so are the men.

    Michael, we are so sorry to hear that you were just diagnosed with thyroid cancer. You must keep us posted and know that we are here for you to support you before, during and after. It’s not an easy road as many patients and survivors will tell you. You will get through it. You will find your way.

    For the record… You just joined the Jacked Thyroid Club.

    Thank you for sharing yourself with us. Keep connecting, baby.

    xo

  16. Lolly says:

    Mike,

    You’ve come to the right place we thyrellas love our thyfellas. Sorry to hear you have just been Dx with thyroid cancer, good news is they have found it now to treat it and hope that as your jouney begins through this difficult time you can learn as much as you can about it. I’m sure these fine thyrellas and thyfellas will guide you through and help as much as they can.

    We are all here to thyupport you.

    welcome thyboard

  17. Lolly says:

    “Lolly;

    WOW. WOW. WOW. What you endured is unbelievable and terrifying, so sorry you went through it.

    Why no anesthesia?! Did they at least give you pain meds or better yet tranquilizers?!

    Thank you for extending loving, nurturing support!”

    You ask why no aneasesia or loccal to numb the area well my Surgeon was a man who beleived there was more trauma in giving the lov=cal then the actaul biospy itself, so we tried it without boy did if-t fucking hurt but the worse part the jerk was trying to make polite conversation with me while he had the needle in my neck and if he though I was going to answer at that point well he was sadly mistaken.

    It really isn’t that bad I did get some pain after and feeling funny and had to use ice packs when I got home but each time it got worse and after 5 In about 6 moths one nearly every 6 weeks they can do more harm than good.So 5 was my limit only other option was to remove the whole thyroid which I agreed to 6 months later.

    I’m one tough thyrella and have a good pain threshold call me maschositic if you like, but I just have a strong pain threshold I can block it out for a short time.

  18. Misti Kennedy says:

    Dee, I feel for you. I had thyroid cancer when I was 16 and it was horrible. Sixteen is bad enough, but add mood swings, crying and no motivation and that equals a horrible last two years in High School. Not only did they give me no information, but no one told me the symptoms I would be dealing with. I didn’t really learn about my hypothyroidism until I was in my mid-20’s. Thank goodness for the internet!

    It does get better, and you are already making big steps in joining Dear Thyroid. We are a knowledgeable bunch, and between us all, we can help you get through this.

    Keep your chin up and your doctor on a short leash!

  19. Bonnie in OKC says:

    Dee,

    Wow, what a story..I can hardly type after reading what you went throgh. I can only hope that nothing like that happens to me. I was ‘finally’ diagnosed with Graves, after 2 or 3 years of thinking I was just hyper. I dont know what the future holds. I know he wants to remove my thyroid, but I dont want him to. Then I would become hypo…and still have graves, so what is the point of doing that??

    You sound like a very strong person to have been through all you have. Just try to keep your mind occupied on the good things in your life. There is really not a lot you can do about the bad things. Good luck to you and I hope you will keep everyone posted. I really need to get on this site every day, just to boost my spirits!

    Good lucck to you too, Mike…it is scary when you dont know what’s gonna happen. Take care!

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