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Life Redefined: Keep Your Spirit Fingers to Yourself

Post Published: 19 April 2010
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Category: Column, Life Redefined, Thyroid Cancer in Young Adults Column
This post currently has 26 responses. Leave a comment

When cancer is the topic of discussion, the conversation tends to turn awkward in about two seconds. Cancer is such a fear-invoking word that when we hear it, especially when it’s associated with a friend or family member’s name, we often don’t know what to say and end up mumbling something that either makes no sense or does nothing to help the situation. I’m guilty of mumbling this nonsense in the past because I didn’t understand. I was ignorant. Now, I’m gifted with the ability to know what to say and perhaps more importantly, what not to say when someone tells me he/she has been diagnosed with cancer.

I’m here to liberate you from the conversations filled with awkward silences and mumbled nonsense. Some members of our thylignant thymunnity have chimed in to help me compile a list of things we don’t want to hear when talking about our cancer, followed by some suggestions of what you can say that won’t leave us feeling like we’re on the island of misfit toys.

What we don’t want to hear:

“You’ll be fine!”

This is not a good thing to say to those of us with cancer because the truth is you don’t know if we’ll be fine or not. You don’t know what statistic we’ll fall in. You don’t know if we’ll be part of the survival statistic or the death statistic. You don’t know, so don’t pretend you do.

“If you have to have cancer, this is the one you want to have. This is the good/easy cancer…

When you say this, you’re implying that we chose to have cancer, and that’s a horrible implication to make. Cancer is not a choice, it’s not good, and it’s not easy. If you say this to us, don’t be shocked to get slapped in the face. You’ve been warned.

Unsolicited medical advice

If we don’t ask for your medical advice, don’t give it to us. When we’re talking to you about cancer, we most likely just want you to listen. Unless you’re the doctor, keep your medical opinion to yourself and just listen.

A pep talk

When we are opening up to you about what we’re going through, we aren’t looking for you to flash your spirit fingers at us like Kirsten Dunst in Bring It On. ,  Keep your pom poms at home, fight the urge to come up with a peppy response, and just listen.

“At least it’s just a little bit of cancer…”

Cancer is cancer. The size of the tumor does not dictate the amount of fear; the mere presence of cancer is what causes fear.

“Your life will be back to normal after surgery and radiation. All you’ll have to do is take one little pill each day…

We aren’t the same people we were before being diagnosed with thyroid cancer. “Normal” isn’t what it used to be. Living a “normal” life is not as easy as popping one pill every day. Survival means not only learning how to redefine ourselves in the face of cancer, but also learning how to live with a chronic disease as we are now sans thyroid. We are hypothyroid because we’ve had our cancerous thyroids removed but are medically thrown into a hyperthyroid or near hyperthyroid state to keep any thyroid tissue still in our bodies inactive. Our bodies are confused, and swallowing one little pill does not restore clarity.

“I’m so glad this is all behind you…

Even when the surgery is over and we’ve had RAI, cancer is still a part of our thoughts. It’s not behind us. It’s something we think about all the time, every single day. I can’t be certain because I’ve only had cancer for a year and a half, but I don’t think it will ever be completely out of my mind.

“I’m sorry…”

You didn’t give us cancer so you have no need to apologize. We don’t want your pity.

“My cousin’s neighbor’s friend’s sister had thyroid cancer…”

What’s your point? We are not your cousin’s neighbor’s friend’s sister, so it’s extremely unlikely we’ll go through the same things as she did. Everyone deals with cancer differently, and to compare my cancer with someone else’s often trivializes what I’m going through.

“My aunt had cancer. She’s dead now, but you’ll be fine…”

I don’t think this requires much explanation, but just in case;if you know of anyone who died from cancer, don’t talk to us about it when we’re trying to tell you about our own struggles with cancer. We know that cancer kills people every day. We don’t need you to remind us.

What we do want to hear:

“I’m rooting for you/thinking about you and your family…”

This shows us that you care about what we’re going through and that you’re concerned for us. We appreciate the positive attitude this brings to the table.

“Let me know if there is anything I can do for you…”

This one is kind of tricky. This is a good thing to say if your only intent is to show that you care. If you say this, don’t expect us to tell you what to do for us. It’s just not likely to happen because it makes us feel needy.

“I am going to bring you dinner. What day should I come?”

It doesn’t have to be dinner, but if you want to do something tangible, come up with the idea on your own. We are not going to ask for help, so if you want to actually do something for us you have to make the initiative.

“Would you share a little more with me about thyroid cancer and what you have to go through?”

This shows that you are sincerely interested in what we have to go through and how we are feeling. Plus, when we’re ready to talk about it, we like telling our stories because it helps spread awareness.

Just listen.

It’s OK to just listen. Don’t feel like you have to offer a response to everything we say. We don’t expect you to come up with a cure for our cancer. We don’t even expect you to respond. Just listen!,  

“This sucks…”

Cancer does suck. We appreciate when you acknowledge that although you don’t understand what we’re going through, you understand it’s a crapfest.

“I know I don’t understand, but I’m with you every step of the way…

This is a great show of support. When you say this, you’re letting us know that you’re a shoulder to cry on when we feel like we’re drowning, an ear to listen when we need to rant, or just a friend to be with when we don’t want to be alone.

These lists are not all-inclusive, but hopefully this gives you a general idea of what we do and don’t like to hear when talking about what we are going through. I hope this keeps you from feeling awkward next time you’re talking to someone about their experience with cancer.

Joanna

What else would you add to the list? Is there anything you would take off the list? How do you feel when people give ignorant responses when you’re discussing your disease?


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26 Responses to “Life Redefined: Keep Your Spirit Fingers to Yourself

  1. EJ Fechenda says:

    Well said! My doctor told me the very same thing, “If you were to get cancer, this is the good cancer to have.” I was like, “Give me a moment you just told me I have cancer!” I’ve been in remission for five years but am still haunted by my diagnosis. Every lump, strange looking mole or unexplained pain sends me into a small panic. Now that I know my body is capable of producing cancer my guard is up. Considering the other options this is one of the more easily treated cancers, but cancer is cancer and our survivorship shouldn’t be discounted by any means.

  2. Amy says:

    (it’s @aimlessaimers from Twitter.) I LOVE this and am forwarding the link to my mom who also has spent the last five years annoyed at the rest of our family along with me. Excellent article.

    -Amy

  3. Monica says:

    Hi Joanna,

    Can I copy your post and share it with everyone I know who can share it with everyone they know?

    You hit just about every phrase I’ve heard, but interestingly many of them were said to me when I was diagnosed with lupus. Hmm, maybe it’s a cultural thing, because all I got was a stare and silence when I would tell people I had to have my thyroid removed because of a cancerous nodule.

    Love this 🙂

    ☮ ♥

  4. quin browne says:

    The comments that made me laugh the hardest after my surgery came from one of my best friends. I was living in Utah, so, the chances of that happening were pretty high, but, I digress.

    1. After two years of calling me her SisterWife (I was her husband’s stage manager), it was a huge joke that I was the “second wife’, responsible for food prep and laundry. Realise, this couple is 20 years younger than I am. While standing on a stage, after a production (the first I’d attended since my operation, and while waiting for my Iodine)she was digging in her purse, not noticing the gathering of University officials around us. Her hubby runs the MFA program… In a loud voice, she said, “Matt. We need to advertise for a new second wife if Quin is going to do this cancer thing.”

    Dead silence.

    I started laughing so hard, I tipped over. The next day, the University President had letters expressing concern.

    2. They came to visit me when I was at my weakest… bringing food and their very welcome company. I started to cry out of concern and fear and all the rest. She patted my shoulder, hugged me and said, “Don’t worry. We’ll adopt Sean (my then 20 year old who was pretty helpless). That way, we get a two-fer– we can convert him and then you!!”

    Again, helpless laughter.

    She knew what to do, what to say with love and humour.

  5. Brianna says:

    Thnak you for this! I think I will print this and give copies out LOL! This says everything I have thought and I am happy I am not alone in those thoughts!! People do expect you to take the pill and be back to normal just like that. I am going thru that right now and my family cannot understand “what is wrong with me”! well maybe if they read this they might understand…
    Thank you!

  6. Dear Thyroid says:

    Hi Monica! A stare and silence?! Oh my. So very sorry.

    How are you doing now?

    As for sharing this article, of course! You see the “Share this” tool bar underneath the post? The first icon is for email, which allows you to email the post to anyone you want. Does that help?

    xo

  7. Dear Thyroid says:

    EJ – I’m so sorry that happened to you.

    Yesterday, one of our community member’s posted a comment regarding a Dear Thyroid Letter (thyroid cancer patient), http://dearthyroid.org/nothing-was-wrong/ stating something echoing your sentiments.

    To so dismissively tell someone they have cancer, is unconscionable. I am truly sorry you endured that.

    xo

  8. Dear Thyroid says:

    Amy – So glad you’re going to share this with your family. Though I don’t have cancer, I absolutely LOVED Joanna’s article. Speaking for myself, I am much more enlightened.

    xo

  9. Dear Thyroid says:

    Quin, THAT IS HILARIOUS. I love her and what she did for you. Thanks for sharing this story.

    xo

  10. Dear Thyroid says:

    Brianna, you are absolutely right – Joanna really struck a chord, and hit points that speak to patients, survivors, and to those of us without cancer in need of learning a thing or two.

  11. Dear Thyroid says:

    Joanna – LOVE YOU, and LOVE YOU for writing this article.

  12. Lolly says:

    Joanna great article.

    frighrtened to say anything now incase you have a go only kidding. I know how it can be so awkward when someone tells you they have cancer. Me I dont treat them any differnet it’s not as if they got leprosy and you have to keep your distance neither is it contagious.

    Just listening asnd trying to udnerstand I doubt anyone can fully understand unless they are in your shoes but I know the fear of cancer and how it can make you feel so actually not having it is an enormous relief.

    I admire all your strength in dealing with it on a dialy basis. and hope this helps others when talking to cancer survivors.

    Hope I haven’t said anything wrong if I have well I did it because I do care.

    Lolly

  13. Dear Thyroid says:

    Lolly – You are loved and appreciated. What you said, well, it was just fabulous.

    xo

  14. Great article. People are always just confused and say whatever makes sense at the time. Hey, I’ve been there! I feel it is important for them to just listen. I don’t like when they feel like they have all the answers… It makes them seem insincere, or they really don’t care (and sometimes that is very true!).

    Anyway, great suggestions! Hopefully people will read this and gain an understanding!

  15. Oh, and I hate when people say “you’ll just take one pill everyday and you’ll be fine.” FALSE. I take 10 pills daily since my thyroidectomy.

  16. Erica says:

    I agree with all of these things. I had someone say dont think about. It is easier said than done.

  17. HD inOregon says:

    Joanna,

    Wonderful article! Well said!

    Can’t think of anything to add at the moment, except one in the no-no column. I heard a doctor tell a cancer patient (who is still around and doing fine after 4 years)… “it is time to settle your affairs”! – What a boozo!!! Even if true and even if the diagnosis is not promising, you go extremely gently about it instead of blubbering it out like that, on a the first visit no less!

    HD in Oregon

  18. Dear Thyroid says:

    Brooke – Thanks for speaking up and out! I love this point you made I don’t like when they feel like they have all the answers; It makes them seem insincere, or they really don’t care (and sometimes that is very true!).

    Additionally, ‘the one pill a day’ theory, akin to the ‘one size fits all’ treatment, is bullshit. We’re behind you 30000% on that one, kid.

    xo

  19. Dear Thyroid says:

    Erica – Someone had the AUDACITY to tell you NOT to think about having cancer? You have to tell us more about that, if you don’t mind, and if you’re comfortable doing so. I’m just FLOORED. How did that make you feel? How did you respond?

    I am so sorry.

  20. Dear Thyroid says:

    HD – “Settle your affairs”?! What a schmuck. The nerve. The gall. Congratulations to him on winning the fight. Good for him. Love it.

    xo

  21. What an excellent post. I just got the “well if you had to have cancer, I’ve heard this one is totally managable!” spiel today. Argh!

  22. EJ, your doctor is a douchebag for telling you that this is the cancer to have. I can identify with you 100% on every little pain inducing a small panic. I get it and it sucks.

    Hi Amy! So glad you’re going to share this article with your family! I hope it opens their eyes!

    Share away, Monica! Don’t you hate the stare and silence? It’s so awkward…

    Quin, so glad that you had somebody in your life who knew how to make you laugh in the midst of hardship. Laughing is so very important, in my opinion, and plays an important role in survival.

    Briana–I hope you can share this with your family so they can get some insight into what you’re having to deal with! In my experience, the horrible comments are most hurtful when they come from family members. Of course they don’t intend to come off that way, they just don’t understand at all.

    Love you, too, Katie! So glad you enjoyed the article!

    Ha, Lolly, don’t be scared to say anything! You’ve said nothing wrong! You’re awesome for not treating people differently based on a disease.

    Thank you, Brooke. I’m with you on the multiple pills thing. I swallow more pills a day than I care to count! One little pill…yeah right!

    Erica, how could we not think about it?! That’s just ridiculous.

    HD, “time to settle your affairs?” That doctor was/is a douchebag! What a slap in the face! So very glad your friend is doing well!

    Heather, I’ve never become calloused to that comment. It stings every time I hear. I’m sure you feel the same way!

  23. Megan says:

    Thank you so much for posting this. I am really sick of hearing how “I’m fine” or how this is the “good cancer”.

  24. Megan, thanks so much for commenting and sharing your opinion. I, too, hate hearing how thyca is the “good cancer.” It’s exhausting.

  25. I loved this article, Joanna. It was very interesting to read and there were some really good suggestions. It is true that many people have problems finding the right thing to say when it comes to comfort and support. However, I wanted to point out that when people say “I’m sorry” I think it can also mean that they are sorry for your loss or that they are sorry that you are suffering. I don’t think it necessarily means that they are feeling sorry for you. I can understand that you don’t want sympathy, as it can appear very patronising at times. Of course, nobody can ever understand what each individual is going through, but just being there for them and listening can really help. Unfortunately, not everybody seems capable of doing that or of finding the right words. I have given up on some of my so-called friends really understanding or caring what I am going through and I focus on those who do. It hurts when you realise that you can’t rely on people the way you would like though.

  26. Kris says:

    Joann,

    I was diagnosis with thyroid cancer on February 3, 2011 and had surgery on February 18. I am very self conscious about my scar. I bought a bunch of scarves to wear because necklaces are still too heavy and they hurt. With Easter coming up soon, I told my family I didn’t want to do pictures this year (we have to do pictures at every holiday) because I don’t want five or 10 years from now to see that picture and remember that was the year that I had cancer. My thought was if you took pictures from the last five years and put them on a table you wouldn’t be able to tell what year the pictures were made, but if you put this picture in the stack, you would know it was from 2011, the year Kris had cancer. I don’t need a reminder every time I walk in my mother’s house of the worst time in my life or have it posted all over Facebook for the world to see.

    One of the most hurtful things anyone ever said to me was when I told my sister, no pictures and she said, “You are so Ridiculous!” I tried to explain that she didn’t know how it feels and I hope she never would. Her response, “You know what they say about scares…they’re like tattoos, only with better stories.” I told her, “You know who says that, people that don’t have thyroid cancer and don’t have a five inch scar across their throat!” I cried for an hour.

    Soon after this my sister found out she was pregnant. I knew there would be no way of getting out of pictures now. I went to Merle Norman and meet with a very nice lady. She showed me how to apply concealer and power and almost cover the scar completely. She also found a few light weight necklace that I could adjust to help cover up my scar. Between the makeup and the necklace, I can wear just about anything now and not have to worry that someone sees the scar. I am very thankful for her assistance and giving me my confidence back.

    People should remember, until you walk a mile in my stilettos, don’t tell me how to feel. Thanks for letting me share, My What Not To Say Story.

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